Authority Agenda Wednesday 19 October 2011 To be held in public at Inmarsat, 99 City Road, London EC11AX

Transcription

1 Meeting starts Authority Agenda Wednesday 19 October 2011 To be held in public at Inmarsat, 99 City Road, London EC11AX 10.15am 1. Welcome, Apologies and Declaration of Interests 2. Donation Review [HFEA (19/10/2011) 612] Decision Lunch 12.20pm 3. Minutes of 14 September 2011 [HFEA (19/10/2011) 613] 4. Chair's Report (verbal) 5. Chief Executive s Report (verbal) 6. Directors Reports [HFEA (19/10/2011) 614] Information 7. Data Set Review Presentation Information 8. Review of Authority Meetings Following Relocation Presentation Information 9. Business Plan 2012/13 [HFEA (14/09/2011) 615] & Presentation Decision 10. Update from Committee Chairs Information 11. Any Other Business Close 3.40pm Next meeting: Wednesday 7 December, 2011 London

2 Venue Inmarsat

3 Paper Title Authority Paper Donation review: compensation of donors and benefits in kind Agenda Item 2 Paper Number [HFEA (19/10/11) 612] Meeting Date 19 October 2011 Author Danielle Hamm, Policy Manager For information or decision? Decision Members are asked to consider the following recommendations: Benefits in kind HFEA policy should continue to permit free or reduced treatment in exchange for gamete donation. Compliance Committee to review guidance and enforcement policy on benefits in kind, with a view to making it clear to clinics what benefits might be included. Compensation Recommendations Compensate both egg and sperm donors a fixed sum, which reasonably compensates them for any financial losses as well as recognising their time, commitment and dedication to helping others form a family. - Sperm donors are compensated 35 per clinic visit - Egg donors are compensated 750 per cycle of donation - Permit donors who incur excessive expenses to claim additional compensation Compliance Committee to consider how it might utilise donor register data to monitor donor usage and ensure we are aware when donors are making multiple donations at different centres; a paper on family limit issues, including this one, is coming to Donation review: compensation of donors and benefits in kind 1

4 Agenda item 2 Paper Number [HFEA (19/10/11) 612] the Authority in December Donors travelling to the UK from abroad should be compensated in the same way as UK donors, without the provision of claiming an excess for additional travel expenses Compliance Committee to design an effective way of implementing and enforcing the revised compensation policy. Resource Implications Annexes Authors of Annexes Accounted for in business plan Annex A: Summary of quantitative and qualitative analysis and methodology Annex B: Changing landscape report (question1) Annex C: Donor reimbursement and compensation questionnaire report Annex D: Benefits in kind questionnaire report Annex E: Literature review Annex F: Comparative systems of donation Annex G: Ethics seminar report Annex H: Patients focus group report Annex I: Parents focus group report Annex J: Report on interviews and discussion forums with donors, donor-conceived adults, members of the public and faith groups Annex K: Report on the clinic meetings Annex L: Ipsos MORI public opinion poll Annex M: Economic Impact Assessment Annex N: Responses from organisations Joanne Anton, Hannah Darby, Danielle Hamm, Suzanne Hodgson, Jessica Watkin, Matthew Watts (unless otherwise stated on the reports) Donation review: compensation of donors and benefits in kind 2

5 Agenda item 2 Paper Number [HFEA (19/10/11) 612] Section 1: Overview of consultation 1. Introduction 1.1. The aim of the Donation Review is to develop policies which facilitate adequate, effective and safe services for donors, recipients and people born as a result of donation. In so doing, the policies address the ethical dimensions of donor treatment, including protecting donors from undue pressure or coercion to donate; promoting patient welfare and choice; safeguarding the interests of people born as a result of donation; and the wider social public attitudes to donation The consultation, Donating sperm and eggs: have your say, ran from January to April 2011 and focussed on three areas of policy: Family donation, Family limit and Compensation, reimbursement and benefits in kind. The consultation also sought views on the wider issues which impact upon donation, but which are outside the remit of the HFEA. These issues were explored in the Changing landscape of donation section of the consultation In July 2011 the Authority received papers on the principles and methods involved in the Review, as well as family donation, family limit and conditional donation This paper invites the Authority to consider compensation, reimbursement and benefits in kind. A separate presentation on the changing landscape of donation will be delivered at the meeting. 2. Evidence gathered 2.1. Authority members have received the following reports, which document the information gathered during the Review. Each report is contained in an Annex to this paper: Changing landscape report Compensation consultation report Benefits in kind consultation report Responses from organisations Literature review donor motivations and compensation Impact Assessment Ethics seminar report Patients focus group report Report on interviews and discussion forums with donors, donor conceived adults, members of the public and faith groups Report on the clinic meetings Ipsos MORI public opinion poll Donation review: Compensation of donors and benefits in kind 3

6 Agenda item 2 Paper Number [HFEA (19/10/11) 612] 3. Methodology and principles 3.1. At the July Authority meeting, members approved the methodology that has been used to gather and analyse the evidence in the Donation Review and agreed the principles which should structure its consideration of the policy options. To view the methodology see the July 2011 Authority paper: Donation review Principles and methods. 4. Regulatory principles 4.1. In July 2011 the Authority considered principles of good regulation which state policy making should be: transparent accountable proportionate consistent targeted only at cases where action is needed 4.2. The Authority should consider the impact of any policy decision both on equalities and in terms of the administrative and economic impact. Evidence from such impact assessments are to be found in the papers The practicality of any policy option essentially comes down to issues of compliance: can clinics do it? Can they show that they have done it? Can inspectors check compliance? 4.4. As before, the Authority will wish to take a view as to how, or whether, it wishes to balance the principles that have informed the Donation Review with these other considerations. 5. Ethical Principles 5.1. The question as to what a fair compensation scheme looks like is essentially an ethical one. We therefore believe the right way of addressing the issue is through a principled approach to decision making. To this end, the Authority agreed a set of principles that should be respected in policy decisions on compensation and benefits in kind. The large majority of respondents to the consultation agreed that these are the right principles: Altruism Fairness Free choice Welfare of future child Safety of donors, patients and the donor conceived Family autonomy/respect for family life Pragmatism/better regulation Donation review: Compensation of donors and benefits in kind 4

7 Agenda item 2 Paper Number [HFEA (19/10/11) 612] 5.2. These principles interact and it may not be possible to reach a solution that respects all of them equally; it is largely a question of balance and emphasis which the Authority will need to navigate The principles do, however, help to highlight some unacceptable outcomes of policy decisions. For example, creating an incentive strong enough to induce people to donate would contravene the principles of altruism and free choice, and may also negatively impact on the welfare of the future child. An inducement may also impact on the safety of patients and the future child, if it motivated donors to lie about their health or genetic background A policy that disproportionately affects one group of stakeholders over another may contravene the principle of fairness; as would driving up the cost of donor treatment to the point that it effectively excluded lower income groups. The latter scenario may also result in people seeking cheaper alternatives abroad or in unregulated fertility services. Also related to the principle of fairness is the adequate recompense of donors for expenses and any other losses they incur during the process of donation Implementing a policy which creates unjustifiable barriers to donation - for example, making it unaffordable for some people to donate, or imposing unnecessarily high regulatory burdens on clinics - would not only contravene better regulation principles but could negatively impact on the supply of donors. To this extent, such a policy could create fewer opportunities for families to exercise their wish to seek treatment in a UK regulated environment Whilst people may legitimately choose to seek treatment abroad, limiting options in the UK will reduce their range of options. People conceived through unregulated fertility services, or in clinics abroad, will not benefit from the safeguards that exist in the UK, including the right to information about their donor and any siblings. The Authority will wish to consider the effects of limiting choice available to families and the potential negative impact on donor conceived people of increased numbers of people going abroad. 6. Overview of paper 6.1. This paper invites the Authority to consider and make a decision on the following issues: Benefits in kind (section 2) The right approach to compensating donors (section 3) Differences between egg and sperm donors (section 4) The amount donors should be compensated (section 5) Whether the same compensation scheme should apply to UK and overseas donors (section 6) Donation review: Compensation of donors and benefits in kind 5

8 Agenda item 2 Paper Number [HFEA (19/10/11) 612] Section 2: Benefits in Kind 1. Introduction 1.1. The HFEA allows people to receive treatment services in exchange for donation of their gametes to treatment or research, the policy known as benefits in kind or, more commonly, egg sharing The legal parameters of compensation to donors are governed by the European Union Tissues and Cells Directive (EUTCD). We have been advised that the concept of compensation under EUTCD is sufficiently broad to encompass egg sharing schemes. Factors that support such an interpretation include the fact that egg sharing arrangements serve to promote an over-arching objective of the EUTCD by increasing the availability of human cells and tissues for donation and fostering solidarity between donor and recipient During the consultation, we asked stakeholders a number of questions about the benefits in kind offered to donors and discussed various models for how it could work in the future. Through analysis of the findings, three key options have emerged: Free or reduced treatment in exchange for donation (status quo) Cap the value of benefits offered to gamete sharers at same rate as compensation to non-sharing donors Prohibit benefits in kind being offered to gamete sharers 2. What happens now? 2.1. In principle, benefits in kind could take a number of forms, as long are they are restricted to treatment services. The three forms we are aware of are outlined below, of which egg sharing is by far the most common Egg sharing is where a woman receiving IVF treatment donates some of her eggs, for either treatment or research, at the same time as undergoing treatment herself. In return, the clinic can offer a significant reduction in the cost of her treatment (commonly half or the full cost of treatment, the value of which is in the range of per cycle) Sperm sharing schemes are offered by some clinics. Couples can get a reduction in treatment costs, or are moved up the waiting list, in return for the male partner (or another person they provide as a donor) donating their sperm Freeze sharing schemes have become available at a small number of clinics more recently, allowing women to store their eggs (free for about 5 years) for future treatment in exchange for donating some of these eggs. 3. Arguments and issues: an overview 3.1. Egg sharers donate approximately 40 per cent of the total number of donated eggs each year. Some argue, however, that offering free/reduced treatment in exchange for donation is not justifiable on the basis that it: Donation review: Compensation of donors and benefits in kind 6

9 Agenda item 2 Paper Number [HFEA (19/10/11) 612] constitutes an incentive or inducement to donate is equivalent to paying donors poses a psychological risk to the donor if she does not conceive, but the recipient does 3.2. In response to these criticisms, proponents of egg sharing highlight empirical evidence which indicates that: egg sharers view treatment as qualitatively different from payment egg sharers are motivated by both altruism and free or reduced-price treatment egg sharing increases access to IVF treatment for both donors and recipients egg sharing creates a sense of reciprocity and solidarity between sharer and recipient, who are helping each other to address each other s infertility egg sharers largely report that they feel adequately prepared and are satisfied with their treatment 3.3. It is often argued that the differential monetary values of benefits in kind and compensation under the current system are justified because the sharer is not exposing herself to additional risk by donating her eggs, and is subsequently not incentivised to undergo an invasive medical procedure. Indeed, some argue that egg sharing is the only ethical form of egg donation, on the basis that it is not justifiable to ask a donor to consent to the clinical risks of egg retrieval when she is not herself receiving any medical benefit from the procedure. 4. Analysis of policy approaches (a) Free or reduced treatment in exchange for donation (status quo) 4.1. The current policy permits clinics to give both egg and sperm donors the option to donate to either someone else s treatment or to research, in exchange for free or reduced treatment (Directions 0001) When the policy was last reviewed, in 2005, the Authority considered the argument that benefits constitute an unethical incentive to donate. It concluded however, that there was little evidence that egg sharers judgement was distorted by a promise of free treatment and the Authority concluded that the potential harms of egg sharing were not likely or significant enough to justify prohibiting the practice Recent evidence (see Annex E) adds weight to this reasoning insofar as it suggests both donors and sharers experience of egg sharing is positive and that it is not a decision that is commonly regretted. However, it should be noted that empirical studies are few and have tended to involve relatively low numbers. In addition there is evidence (see Annex E) that suggests that the number of sharers would significantly decrease if state funded treatment were more widely available. Donation review: Compensation of donors and benefits in kind 7

10 Agenda item 2 Paper Number [HFEA (19/10/11) 612] 4.4. What is known about donor motivation, however, is that it is multifaceted. People make decisions for a range of reasons, and competent adults are capable of assessing the relative benefits, burdens and likely impact of a range of options available to them. An incentive to donate does not necessarily mean people will do so purely because of that incentive. Indeed, the literature suggests that both donors and sharers have mixed motives for donating A small majority of respondents to the online survey were in favour of offering benefits in kind, with slightly more wishing to offer them to egg than sperm donors (see Annex D). The qualitative engagement (focus groups and interviews) and ethics seminar revealed a mix of views, some believing that benefits are largely positive and some believing they represent an unacceptable incentive to donate. The group most likely to favour benefits was fertility patients, whilst the group least likely was the public. The consultation revealed a commonly held view that being motivated by having a baby is more ethically acceptable than being motivated by receiving money Of those who believed benefits should be offered in exchange for donation, most thought such benefits should encompass a broad range of treatment services, including reduced waiting times and storage. Some clinics already offer such benefits to patients, although the HFEA only provides detailed guidance to clinics on egg sharing. Advantages It creates a sense of solidarity between the sharer and recipient Evidence suggests that the sharer is motivated by both altruism and free or reduced treatment People view treatment as qualitatively different to payment In practice, evidence suggests both sharers and recipients have a positive attitude toward, and experience of, egg sharing It creates treatment options to both donors and recipients that may not otherwise be available Eggs donated by sharers constitute a large proportion of overall number of eggs donated each year Disadvantages Free or reduced treatment represents a large monetary value and may incentivise people to donate, therefore detract from the principle of altruism and potentially be contrary to the interests of sharers. Little is known as to whether people conceived as a result of sharing schemes will view their origins in a positive or negative light. (b) Cap value at the same amount as compensation for donation 4.7. This option would create parity in the monetary value that donors and sharers can receive in exchange for donation. Such a policy would Donation review: Compensation of donors and benefits in kind 8

11 Agenda item 2 Paper Number [HFEA (19/10/11) 612] address the concern that benefits are equivalent to money and that all donors should be treated equally Some respondents to the survey thought that parity should be achieved by raising the value of compensation to that comparable to the value of current benefits. More commonly, however, people thought the value of benefits should be capped at a lower level, similar to current levels of compensation. The latter group tended to equate high levels of compensation with an incentive to donate and believed donation should be purely altruistic The economic impact assessment (Annex M) indicates that clinics believe a cap would mean they would attract fewer egg sharers. This corroborates the qualitative engagement (Annex J ) and the literature review (Annex E), which suggests that donors are motivated by a mix of altruism and free treatment. Removing or reducing one of these motivations, therefore, may result in fewer numbers coming forward. Indeed, it may mean that IVF becomes unaffordable to people who can currently only access it by taking advantage of sharing schemes. Advantages It would address the concerns that benefits in kind is equivalent to payment and that it is an unethical incentive to donate (if the value was lowered in line with the current system of compensation which does not permit people to profit from their donation) It would create parity, and fairness, between different types of donors Disadvantages It may restrict access to treatment for donors who cannot afford to make up the difference in price to a full value of an IVF cycle. It will mean that egg sharing offers fewer advantages, thus impacting on people s motivation to take part in the scheme Is likely to reduce donor numbers and access to treatment It will reduce patient and donor choice It may have a detrimental economic impact on clinics, which is likely to be more pronounced in clinics that run their donation model solely on recruiting egg sharers. (c) Prohibit benefits in exchange for donation A particular concern exists that it is ethically unacceptable to offer any incentive to donate; benefits in kind may represent a large incentive, especially to those who would otherwise be unable to afford fertility treatment. A significant minority of respondents to the survey were against offering benefits in kind to donors, and mixed views were expressed across all stakeholder groups These concerns are arguably met by the empirical evidence, which demonstrates positive attitudes and outcomes of both donor and Donation review: Compensation of donors and benefits in kind 9

12 Agenda item 2 Paper Number [HFEA (19/10/11) 612] recipients towards the practice. Moreover, benefits help foster solidarity between donors and recipients. It is unlikely that there is another group better able to empathise with the pain of infertility than those needing IVF; and it is reasonable to believe that such empathy can create a genuine desire to help others, at the same time as helping oneself. Advantages The advantages of adopting this policy are likely to be similar to those outlined for option b, cap value at the same amount as compensation for donation. Disadvantages The disadvantages of adopting this policy are likely to be similar to those outlined for option b, cap value at the same amount as compensation for donation. 5. Analysis and recommendations 5.1. The feedback from the consultation as a whole demonstrates that egg sharing presents a dilemma. On the one hand, it is argued it presents an unacceptable incentive to donate, which distorts women s judgement and causes them to act contrary to their best interests. On the other hand, it is argued that the prospect of free treatment represents only part of the motivation to donate. Moreover, it creates a sense of solidarity between the donor and recipient Egg sharing does enable donors to receive a benefit of large monetary value. Some argue that this is justifiable on the basis that egg sharing does not require women to go through any additional risk (these women are already undergoing IVF). In addition, for many people, receiving free treatment is a more ethically acceptable incentive than money It is of course possible that people may be motivated to donate for money to feed their family or help pay to support an adoption application, which might seem to be of similar moral worth than achieving a pregnancy. Nonetheless, donating in exchange for money, rather than treatment, allows for a range of motivations for personal gain, which treatment does not. It is possible that telling a story to a donor conceived child of their donor wishing to help create them, and their own child, may be psychologically easier to accept than the fact that their donor donated for money; however this is a difficult assumption to prove and children are likely to react differently to accounts of their origins depending on a range of factors involved Given the significant negative impact of removing or restricting benefits in kind in terms of access to treatment, and the empirical evidence which indicates largely positive attitudes towards the practice by those affected, it is recommended to the Authority that: HFEA policy should continue to permit free or reduced treatment in exchange for gamete donation. Donation review: Compensation of donors and benefits in kind 10

13 Agenda item 2 Paper Number [HFEA (19/10/11) 612] 5.5. Current HFEA guidance focuses almost exclusively on egg sharing arrangements in exchange for IVF, yet treatment services which can be offered are broader than this, including storage and moving up waiting list. Given this, it is recommended that: The Authority ask its Compliance Committee to review guidance and enforcement policy on benefits in kind, with a view to making it clear to clinics what benefits might be included. Donation review: Compensation of donors and benefits in kind 11

14 Agenda item 2 Paper Number [HFEA (19/10/11) 612] Section 3: Compensation 1. Introduction 1.1. As with benefits in kind, the legal parameters of compensation to donors are governed by the European Union Tissue and Cells Directive (EUTCD). The law is clear that compensation is permitted in specific circumstances. The Directive delegates power to the HFEA, as the UK Competent Authority, to decide how UK donors are compensated During the consultation, we asked stakeholders a number of questions about compensation to donors and discussed various models for how it could work in the future. Through analysis of the findings, four key options have emerged: Expenses only: no compensation Compensation for expenses and loss of earnings (status quo) Compensation for inconvenience Financial benefit in exchange for donation (parity with benefits in kind) 1.3. Below we set out the options in more detail and discuss their relative burdens and benefits. Consideration of the merits of these approaches is applied to sperm, egg and overseas donors, followed by Executive recommendations. 2. Overview of issues 2.1. Our current policy allows sperm and egg donors to claim reasonable expenses in connection with their donation (eg, travel costs). Donors may also be compensated for loss of earnings up to for each full day (as for jury service), with a limit of 250 for each course of sperm or egg donation. Clinics are required to keep a record of the expenses and compensation they pay, including receipts Clinics can only give donors compensation for expenses incurred within the UK, so they cannot pay the travel and accommodation costs for overseas donors. Our current policy tries to ensure that donors do not benefit financially from their donation but allows for compensation for loss of earnings and expenses Feedback from some clinics, however, indicates that not only do some donors end up being out of pocket (eg, if they can t prove their loss of earnings to the clinic), but also that the system is more complex than it needs to be. Requiring proof of small losses can also feel demeaning to donors, who are making a significant time and emotional commitment to help others. We have also heard reports of clinics failing to reimburse donors for several weeks Against a wish to make the reimbursement system simple and fair to donors, some people are very concerned about any money being exchanged in the donation process. There is concern that anything that Donation review: Compensation of donors and benefits in kind 12

15 Agenda item 2 Paper Number [HFEA (19/10/11) 612] could be perceived as an incentive to donate is unethical. There is also concern that money detracts from the altruistic nature of donation and that non-altruistic donation may have a negative effect on the welfare of the future child, who may in fact feel that they were bought There are clearly problems with the current system, but any alternative must take seriously any potential threat to the welfare of donors and children; the following discussion of policy options seeks to explore and address how this might be done The Authority s position on donation for research, which was reached in February 2007 following a public consultation, is that compensation should not vary depending on whether donation is made for treatment or research. In addition, where it is possible to donate through egg-sharing arrangements to either research or treatment, there should be parity in the benefit-in-kind offered so that it is not advantageous to donate to either one or the other The consultation did not seek views on whether donors should be compensated in different ways according to whether they are donating for treatment or research. The question of whether donors should be compensated differently according to whether they donate for treatment or research is not revisited in this paper. 3. Analysis of policy approaches (a) Expenses only: no compensation 3.1. This approach places emphasis on the value of altruism above the other principles engaged. It allows no room for doubt that donors are motivated purely to help others, as there is no possibility that they could claim anything over and above the expenses they incur. It also expects people to donate in their own time and cover any losses they incur over direct expenses Adopting this approach would reflect the view that the idea of money changing hands as part of the donation process is unpalatable, even if donors do not themselves profit from the act. In addition, it would place this discomfort over the potential to remove a psychological barrier (having to document expenses) or monetary barrier (only receiving expenses after they have been incurred) to donation. Policy responses would thus focus on the need to improve donor recruitment through investment in education, awareness raising, development of good practice and training. In order to do this, clinics are likely to have to invest more in advertising, staff time and longer opening hours to provide donors with more flexibility. Consultation findings 3.3. Eight out of ten respondents to the consultation were in favour of giving donors their out of pocket expenses. Sixty percent of these thought donors should be compensated for the exact expenses incurred rather than a fixed amount or other system. Those arguing for this system Donation review: Compensation of donors and benefits in kind 13

16 Agenda item 2 Paper Number [HFEA (19/10/11) 612] viewed it as the fairest method of compensation whilst avoiding what they regard to be an inappropriate incentive to donate. However, 17 percent 109 respondents did not think that donors should receive any reimbursement of expenses, including 35 percent of all donor conceived people that responded As noted in the qualitative research (Annex J), the donor conceived people that were told about their conception as adults tended to be deeply uncomfortable with the idea of money changing hands at all. In contrast to this, donor conceived people who had found out as children tended to be far more comfortable with the idea of money and donation, even to the extent of money being an incentive to donate It is of note that the National Gamete Donation Trust (NGDT) gave two responses to the consultation what they termed a principled view and a compromised view. On their principled view, which they see as the ideal scenario for donation, donors should only receive compensation for expenses with more money put into recruitment and retention in order to attract more purely altruistic donors. They recognised, however, that in the absence of funding for such awareness raising, the principled view may not be practical. In addition they recognised, that some professionals and patients might support a less complex, albeit more commercial, approach to compensating donors The following is our assessment of the advantages and disadvantages of adopting this policy option. Advantages Ensures that people donate for purely altruistic motives No financial motivation to mislead about health/family history Although little is known about the impact on future children, it would avoid any potential psychological risk from their donor being motivated by money. Removing reimbursement for loss of earnings may simplify clinic administration Disadvantages May not be perceived as fair to donors who will not be compensated for loss of time or money Arguably the administration of donors is not simplified by retaining reimbursement for receipted expenses Could pose a disincentive to donation (thereby affecting free choice): Some may not be able to afford to donate Some may view the system as unfair Some may opt to go via unregulated routes where they will receive compensation Any disincentive to donate would further deplete supply: Donation review: Compensation of donors and benefits in kind 14

17 Agenda item 2 Paper Number [HFEA (19/10/11) 612] Reduce the availability of donor treatment in the UK Increase the incentive for people to go abroad Increase number of imported donor gametes from abroad Increase the incentive for people to use unregulated matching sites or forge private arrangements Those that are conceived overseas, or by private arrangements, may not have access to identifying information about their donor and siblings. May result in fewer children born. (b) Compensation for expenses and loss of earnings (status quo) 3.7. The principle behind compensating donors for their expenses and loss of earnings is that donation should be expense neutral donors should neither financially gain nor lose through the process of donation When drawing up the current policy, the Authority deliberated at length about how to implement a system of reimbursement of expenses and loss of earnings. It decided that donors should be reimbursed for receipted expenses relating to donation and a capped amount for loss of earnings. In order to claim lost earnings, donors are expected to provide proof that they have incurred losses. The rationale for a capped system for lost earnings was that it is unfair to pass on varying costs to patients and that varying rates may create a perception that some donors are worth more than others. A set amount, per donation, was rejected on the basis that it may incentivise some people to donate In practice, therefore, donation may not be expense neutral, indeed some donors may lose money, depending on how much they earn and whether they wish to disclose their donation to their employer. Consultation findings The survey (Annex C) demonstrated a majority view, over 60 percent, in favour of compensation for lost earnings for both sperm and egg donors. Of those who agreed with compensation for lost earnings, around 60 percent believed compensation should vary according to the donor s actual losses; others thought that donors should receive a fixed amount or suggested other compensation schemes Those who believed that compensation for lost earnings should be variable thought that such a system was fair and that it avoided any monetary incentive to donate. Those who thought that donors should receive a fixed sum also thought this the fairest way to compensate donors because all donors receive the same amount. In addition, they believed that a fixed sum system would be easier to administer and may remove a barrier to donation The qualitative engagement work (Annex H, I, J) revealed mixed views. Whilst there was some unease about the prospect that donors might be incentivised to donate if they were given anything above exact expenses, it was also felt that any system should be as straightforward and fair to all donors. There was a sharp divide in opinion between donor conceived Donation review: Compensation of donors and benefits in kind 15

18 Agenda item 2 Paper Number [HFEA (19/10/11) 612] people who had found out as children and those who had found out as adults; most of the latter group were most concerned with not deterring donors by complicated reimbursement systems. Advantages Aims to respect the principle of altruism donors should not financially gain under the current policy. Aims to be fair to donors and protect free choice, by compensating for any financial loss incurred whilst donating. The avoidance of financial incentive is thought to make it less likely that donors will be motivated to lie about their health and family history, thus maximising the safety of patients and future children. Respects the welfare of the future child insofar as some argue the perception of profit from donation may be psychologically damaging to donor conceived children. Disadvantages Does not fully acknowledge the time and inconvenience donors incur, unless they are directly losing earnings. There is confusion and differing interpretations of our policy, resulting in different compensation systems across the UK. Some clinics continue to offer set payments to donors. The lack of flexibility in guidance prevents clinics from offering small, non-monetary, tokens of thanks to donors. Donors may lose out due to reluctance to claim small expenses/provide evidence from employer for loss of earnings/may lose more in earnings than we permit compensation for. Receipted expenses and/or loss of earnings place an administrative burden on clinics and may pose a psychological barrier to donors. Requiring a high burden of proof for losses also has an impact on the inspection process; inspectors must examine and verify claims. Limiting the overall amount of compensation for loss of earnings may discourage donors from making multiple donations (see Annex M). (c) Set amount compensation This would entail compensating donors a defined amount of compensation which is designed to cover their expenses and loss of earnings. The sum would provide a reasonable amount to donors in order to acknowledge their time, commitment and incidental costs incurred The difficulties with the current system stem from the fact that it is complex and requires a high burden of proof from donors. In addition, it only recognises explicit financial losses and privileges loss of earnings above loss of time which might be spent studying or looking for a job and therefore might appear to favour some donors over others. Donation review: Compensation of donors and benefits in kind 16

19 Agenda item 2 Paper Number [HFEA (19/10/11) 612] This policy approach aims to address the problems with the current system through simplifying, equalising and clarifying the way donors are compensated. Such a system would also be designed to make donors feel valued and recognise their commitment and any inconvenience they experience. This approach would allow donors to gain financially from their donation, where their expenses were less than the fixed amount. Any fixed sum, however, ought not to be high enough to induce donors to donate, which might impact on free choice and the perception of risk involved. It would acknowledge, however, that a fixed amount may remove a disincentive to donate and possibly incentivise some to donate. What it would aim to avoid is to motivate people to donate solely for monetary gain. Consultation findings A small majority of respondents to the survey 51 percent were in favour of compensating egg donors for inconvenience, with only 36 percent believing sperm donors should be. There is no clear mandate, therefore, from the consultation responses, to introduce an inconvenience payment, especially in the case of sperm donors. Clinicians were the group most in favour of inconvenience payments and the public and donor conceived people least in favour The qualitative research suggested vastly differing views among donor conceived people, depending on when they were told about their donor conceived origins. Those who were told early in life were least concerned, out of all the groups interviewed, about increased levels of compensation to donors, especially if it resulted in more donors. Patients and parents expressed mixed views as to the merits of inconvenience payments. Some were in favour, especially if it were likely to attract more donors, others were against; most were in favour of exploring all options to improve the treatment of donors and the ease of donating. Patients and parents expressed a concern regarding the tension between increased supply and the possibility of increased treatment costs if donor compensation increases Around 40 percent of donors wished to see inconvenience payments for both sperm and egg donors. The qualitative research suggests that donors are keen to simplify the compensation system and insure that donors are not out of pocket, some commented that clinics were slow to reimburse donors, disorganised and did not always follow the letter of the current regulations. It was also commented that whilst donors should be adequately compensated, levels should not be set high enough to induce or incentivise the wrong sort of donors The literature review (see Annex E) suggests donor motives are mixed; it indicates that financial compensation may play a part in donor motivation. The MORI poll (Annex L) suggest that the public is not in favour of compensating donors for anything other than direct expenses and loss of earnings; with 35 percent of those polled believing donors should not receive any compensation. Donation review: Compensation of donors and benefits in kind 17

20 Agenda item 2 Paper Number [HFEA (19/10/11) 612] Advantages Clear and simple to implement reduces regulatory burden. Acknowledges all donors time equally. Acknowledges donors commitment to donation and the disruption to their lives for the sake of others. Fair to donors as removes the burden of proof and sets out what they can expect to receive from donation in advance. Does not contradict principle of altruism as long as the amount offered is not enough to incentivise people to donate. Acknowledges the evidence on motivations to donate which shows that donor motivation is multifaceted and is concerned with financial loss or benefit as well as altruism. If compensation system is a barrier to donation, making it more straightforward and generous may remove a barrier to donation and therefore increase donor supply. Disadvantages Whilst a fixed sum for donation may represent the removal of a disincentive to some, to others it may represent an incentive or, if high enough, an inducement to donate. If donors are financially induced to donate: the principle of altruism is not adhered to donors free choice is violated it may provide an incentive to lie about health/family history Arguably such a system would dilute altruistic motives and result in some people donating, at least partly, for financial gain. Some argue there will be a negative impact on future donor conceived people if donors can benefit from donation. A fixed sum system may leave some donors out of pocket for their donation. Costs may be transferred to patients and make donation unaffordable to some. The economic impact assessment however suggests that if significantly more donors are recruited as a result of increased compensation levels, additional costs may be offset by increased donor availability. (d) Financial benefit in exchange for donation This would entail paying donors a fixed sum which is on par with the amount gamete sharers can receive ie the cost of a free treatment cycle, which is in the region of 2,500-5, Whilst there is strong evidence from the literature review that egg sharers do not view receiving free or reduced treatment as comparable to receiving money, there remains a disparity between the financial values of Donation review: Compensation of donors and benefits in kind 18

21 Agenda item 2 Paper Number [HFEA (19/10/11) 612] benefits egg or sperm sharers can receive and the amount non-sharing donors can receive in compensation This disparity is explained by the fact that sharers are currently going through treatment themselves, so donation presents less inconvenience and risk to such donors. In addition many feel that free treatment, with the aim of creating a child, is morally different for donating for financial benefit; an argument which is backed up by the literature on egg sharers motivations. Others feel that free or reduced treatment is a powerful incentive or inducement to donate and that offering such a benefit is not ethically different from offering the large financial incentives to donate. In response to the argument that sharers are already going through treatment, it is pointed out that sharing gametes may result in the need for sharers to undergo more treatment than would be necessary if they were keeping all their gametes, thus exposing themselves to more disruption and risk One way to address this apparent anomaly would be for the Authority to create parity in the financial benefits that share and non-share donors receive. Consultation findings We sought views on whether the benefits offered to sharers should be capped at the value offered to non-sharing donors. Thirty-three percent thought that the value of sperm sharing should not exceed other types of compensation and 20 percent thought egg sharing should be capped at this value One of the themes of the qualitative responses was that all donors should receive equal levels of compensation; although some chose this option because they thought that donation should not be a way of making money. This suggests that these respondents would rather see the value of benefits in kind lower, than an increase in the value of compensation The NGDT argued that all donors should be treated equally and the value of compensation for all donors should be the same, as did the British Fertility Society (BFS) The Authority should note that such an approach may not be consistent with the EUTCD, which specifies that Member States shall endeavour to ensure that the procurement of tissues and cells is carried out on a nonprofit basis. 1 Advantages Eliminates the disparity between the value of benefits sharers and non-sharers can receive and is therefore arguably fairer. Is likely to incentivise more people to donate and therefore increase the availability of donor gametes in the UK. Increase in donor gametes would increase patient choice and may 1 Article 12 of the European Union Tissues and Cells Directive 2004/23/EC (EUTCD): Donation review: Compensation of donors and benefits in kind 19

22 Agenda item 2 Paper Number [HFEA (19/10/11) 612] prevent them from feeling forced to go abroad or make private arrangements with donors. Offering a fixed sum to donors would reduce administrative and regulatory burden on clinics. Disadvantages Such a high amount of money is likely to induce some people to donate for monetary reasons. If donors are financially induced to donate: the principle of altruism is not adhered to donors free choice is violated provides an incentive to lie about health/family history Some argue there will be a negative impact on future donor conceived people if there is any possibility that donors can benefit from donation Costs may be transferred to patients and make donation unaffordable to some. The economic impact assessment however suggests that if significantly more donors are recruited as a result of increased compensation levels, additional costs may be offset by increased donor availability. 4. Recommendations to the Authority 4.1. This section sets out a recommendation to the Authority on the policy approach for compensating donors. The Authority is asked to make an in principle decision as to how donors should be compensated Sections 4 and 5 of this paper consider whether egg and sperm donors should be compensated differently, and how much they should be compensated The Executive recommends that the Authority Compensate both egg and sperm donors a fixed sum, which reasonably compensates them for any financial losses as well as recognising their time, commitment and dedication to helping others form a family In deciding to recommend a shift to a fixed sum compensation system, we were particularly mindful of the balance between fairness and reducing complexity, whether in the form of administrative implementation or any potential barrier to donation. Under a fixed sum system all donors will be offered the same amount of money for donation In order to avoid posing a barrier to donors who having long distances to travel to donate, or another reason for incurring particularly high expenses, the Executive recommends that the Authority: Permit donors who incur excessive expenses to claim additional compensation; and that Compliance Committee designs an effective way of Donation review: Compensation of donors and benefits in kind 20

23 Agenda item 2 Paper Number [HFEA (19/10/11) 612] implementing and enforcing the policy to reflect this recommendation If the Authority does not have in place an excess provision, it could result in some donors continuing to lose out in the process of donation. For example, donors in rural areas may feasibly incur travel expenses which far exceed donors in urban areas. This provision avoids such donors being financially penalised. Donation review: Compensation of donors and benefits in kind 21

24 Agenda item 2 Paper Number [HFEA (19/10/11) 612] Section 4: Differences between sperm and egg donors 1. Should sperm and egg donors be compensated in different ways? 1.1. Egg and sperm donors experience different levels of disruption, pain and risk in the process of donation. Egg donation mirrors the IVF cycle in so far as women undergo hormonal drug treatment, followed by an invasive procedure to extract their eggs. This can be very disruptive and women may experience side effects of the drug treatment and physical pain and discomfort following donation. Sperm donation is undoubtedly a less invasive procedure, but it can take place over a longer period of time. To meet the 10 family limit, clinics prefer donors to donate several dozen times. Before each donation they are required to abstain from sex and alcohol for three to five days prior, and each donation will require a visit to the clinic. (See section 5 for a more detailed account of the commitment and experience of sperm and egg donors) Currently egg and sperm donors are entitled to receive the same amount of compensation for each donation cycle, in the case of egg donors, and course of donation in the case of sperm donors. The consultation sought views on whether it is right that there is a parity between compensation for egg and sperm donors, or whether the relevant differences in their experience warrant a different approach to compensation. Consultation findings 1.3. There were differences in opinion both in whether egg and sperm donors should be compensated, and how much. For example, respondents were more likely to think egg donors should be compensated for inconvenience (51 percent) than sperm donors (36 percent). A theme across all the responses was that sperm donors experience less disruption and discomfort than egg donors and therefore should receive smaller amounts of compensation. Others, however, argued that because sperm donors have to donate for a longer period of time and commit to more children being born than egg donors do, there should be parity between egg and sperm donors Independent of the question as to whether sperm and egg donors should be compensated different amounts, there is a more practical question as to the most effective way of compensating for the different procedure egg and sperm donors go through. Sperm donors 1.5. Under the current system donors are compensated per course of donation, which is defined in Directions 0001 as: the period beginning at the first consultation and ending once the sample has been released for use in treatment. The intention behind this guidance was to ensure donors cannot receive unlimited compensation if they make numerous clinic visits. In practice, this definition leaves room for manoeuvre and some clinics limit a course of donation to a set number of visits. For Donation review: Compensation of donors and benefits in kind 22

25 Agenda item 2 Paper Number [HFEA (19/10/11) 612] example, a clinic may compensate up to 250 for loss of earning for 10 visits and class this as a course of donation; followed by an addition 250 maximum for the next 10 visits. This practice is a way of ensuring that donors are not discouraged from making multiple donations, due to the limited amount of overall compensation they can receive. Egg donors 1.6. Egg donation is a time-limited, fixed process. Unlike sperm donation, a cycle of egg donation varies little between donors and the current scheme of compensating egg donors per cycle leaves little room for differing interpretation. 2. Recommendations to the Authority 2.1. In recognition of the differences between the experience of sperm and egg donors, it is recommended that egg and sperm donors are compensated in different ways. The Executive recommends that: Sperm donors are compensated per clinic visit Egg donors are compensated per cycle of donation 2.2. This difference would reflect the fact that the experience of egg donors varies little between donors, in so far as they are required to visit clinics a certain amount of time and undergo specific procedures. Egg donors also give a lot of time and may experience a considerable amount of disruption to their life, over a relatively short period of time. Sperm donors on the other hand, may have very different experiences dependent on the number of times they donate, although the experience of a donation event itself may vary little between donors Compensating a fixed sum per visit for sperm donors would also overcome the operational limitations outlined in 1.5 of this section, with regard to a definition of a donation cycle. Donation review: Compensation of donors and benefits in kind 23

26 Agenda item 2 Paper Number [HFEA (19/10/11) 612] Section 5: How much should donors should receive in compensation? 1. What should the amount be based on? 1.1. As outlined in section 4, a fixed sum for donation is designed to give a reasonable amount to cover out of pocket losses, which is rounded up in order to recognise donors generosity The Authority is now asked for a sum of how much. In doing it is worth reminding ourselves of what exactly donors go through in the process of donating. The donation of eggs: an invasive procedure which involves a physical examination, screening to ensure the donor does not have any serious genetic or infectious conditions, a series of hormone injections which accelerate the maturing of the woman s eggs. Once the eggs are matured, they are ready for collection, which involves a procedure either carried out under sedation or general anaesthetic, during which eggs are removed by inserting a needle into the ovaries through the vagina. Donors will probably need at least the day after the operation off work. Although serious side effects are rare, common side effects include tiredness, abdominal pain, bloating, mood swings and headaches. The donation of sperm: a time consuming procedure which involves a physical examination, screening to ensure the donor does not have any serious genetic or infectious conditions and an assessment of sperm quality. Sperm donors are asked to produce semen samples over a period of several weeks or even months. On each occasion a sample is provided the donor will be required to abstain from sex and alcohol for at least three days prior to the donation. Sperm donors are required to go back to the clinic six months after their last donation to have further screening tests before their sperm samples are released for use in treatment. Both sperm and egg donors will be asked to provide biographical information about themselves and a message to future donor conceived children. These children will be legally entitled to access identifying information about the donor once they reach the age of International and other policy comparisons for compensation are outlined in Annex F. The closest comparator for this type of system is Spain, which gives donors a fixed sum for donation, which aims to account for average time out of pocket loses donors incur. As you can see, the Spanish calculate the number of hours lost for egg donors in the process of donation, pays a set amount for this with an addition for meals, transport and the administration of hormone injections. We are not aware of a similar calculation for sperm donors. Given each sperm donation event involves a clinic visit, around 2-3 hours will be needed, based on the assumption that donors live locally In coming up with a calculation we need to be mindful of not choosing an amount so high that it appears disproportionate to the time given by donors, or could be reasonably viewed as an incentive to donate solely for Donation review: Compensation of donors and benefits in kind 24

27 Agenda item 2 Paper Number [HFEA (19/10/11) 612] monetary gain The HFEA, as the public body that regulates this field is entrusted to make this judgment. In doing so, both what is entailed in the process of donation and a sense of scale of where a token incentive becomes an inducement, should be borne in mind The Executive has recommended that the Authority does not compensate donors the same amount as gamete sharers are entitled to receive i.e. between on the basis that this would represent an inducement. We have also recommended moving away from the current system of expenses (not capped) and loss of earnings (capped at 250) On this reasoning, the fixed sum will be somewhere between 250 and We also have the Spanish precedent, in the case of egg donation, of circa 750. This figure is three times the current limit for loss of earnings, but currently donors can claim travel expenses on top of this. Given that we have made a provision for any excessively high travel expenses, the fixed sum figure should be based on assumed low local travel expenses The closest comparator with regard to sperm donors in Europe is that of Demark, where sperm donors can receive a fixed amount per donation of circa 35, with no overall cap. In practice, we know that the European sperm bank (a Danish Sperm bank which exports donor sperm across Europe) compensates its donors circa 30 per donation. 2 The Danish model aims to provide reasonable compensation to sperm donors, without incentivising them to donate for monetary gain. If we were to use the Danish compensation level as a benchmark, the aim would be for the fixed sum to represent the time and commitment required per visit, but not to financially motivate. In the past we have set a limit for compensation ( 250 for loss of earnings), in part to prevent donors from benefiting from multiple visits. As we have seen, this limit can in fact deter donors from making repeat visits to clinics In practice, there are natural caps placed on the number of times sperm donors can donate, both physiologically (sperm quality reduces if samples are provided too close together) and in terms of the limit we place on the use of sperm from any one donor (the ten family limit) The family limit means that donors cannot donate indefinitely. Whilst the number of donations needed to meet the family limit will depend on a number of factors including sperm quality and whether the sperm is being used in donor insemination or IVF, clinics tell us that good quality sperm tends to get used up quickly. Due to the variables, it is hard to put a figure on the average number of donations a sperm donor will need to make to meet the family limit. Donor clinics however, often set minimum donation events requirements on their sperm donors, which vary between 6 and 24 visits. If we take the half way point between these two, 15 visits, based on 35 per visit, a sperm donor would be compensated a total of Personal correspondence with the European Sperm Bank Donation review: Compensation of donors and benefits in kind 25

28 Agenda item 2 Paper Number [HFEA (19/10/11) 612] 2. It is recommended to the Authority that: The Spanish model is used as a benchmark and egg donors are compensated 750 per course of donation. The Danish system is used as a benchmark and sperm donors are compensated 35 per donation These figures are based broadly on comparators within the EU, a sense of what time and life style alterations donors are required to make and an acknowledgement of the communal and incredibly generous act people perform through the act of donation In changing its policy on compensation to a fixed sum, the Authority will need to be mindful of the impact it has on donor behaviour and any adverse or unintended consequences of changing the way donors are compensated. An example of such a consequence might be if the change in policy led to some donors making multiple donations at different centres, in a bid to attempt to conceal the number of times they are donating. The HFEA has good systems in place which enable it to track donor usage. Clinics also have access to this information. It is therefore recommended that the Authority asks its Compliance Committee:. to consider how it might utilise donor register data to monitor donor usage so that we are aware when donors are making multiple donations at different centres; a paper on family limit issues, including this one, is coming to the Authority in December Donation review: Compensation of donors and benefits in kind 26

29 Agenda item 2 Paper Number [HFEA (19/10/11) 612] Section 6: Non UK donors 1. Overseas donors 1.1. The consultation sought views on whether non-uk donors should be compensated for the expenses they incur outside the UK. This is different from importing gametes, which is regulated in a different way (see 3 below) 1.2. Currently, we only permit compensation for expenses incurred within the UK. Clinics are not therefore permitted to refund the travel costs of donors coming from overseas. Since the policy was revised in 2005, there have been an increasing number of anecdotal reports of clinics seeking to pay for overseas donors to travel to the UK to donate. In addition we are aware some non-uk based companies offer free travel expenses to foreign donors in exchange for donating their gametes We consulted on this issue as we are concerned that travel to the UK may represent a large incentive or inducement to overseas donors to donate, which is against the rationale of altruistic donation Another instance where overseas donors may get travel expenses reimbursed is if they are travelling from overseas to donate to a UK family member. In such cases travel expenses are usually arranged between the family members. This discussion relates explicitly to the import of donors by clinics for treatment in UK where the recipients are unknown to the donor. Consultation findings 1.5. The majority of respondents, around 70 percent, were against the reimbursement of expenses to non-uk donors. The minority in favour argued that importing donors could help with ethnic matching to recipients and that there was no reason to compensate foreign donors differently Of those who were against compensation to foreign donors, it was argued that we should increase the compensation available to UK donors, rather than seek donors from abroad. People also expressed concern regarding exploiting foreign donors and protecting the interests of donor conceived people by having UK donors who are easier to contact. Advantages of reimbursing non-uk expenses UK based expenses can be high and it may be difficult to justify treating UK citizens more favourably than non UK citizens, especially those within Europe. Overseas donors may help to address the shortage of donors from ethnic minorities; indeed it may be one of the limited options for some ethnic minorities to find a match. Disadvantages of reimbursing non-uk expenses Overseas travel could represent an inducement to donate. Donation review: Compensation of donors and benefits in kind 27

30 Agenda item 2 Paper Number [HFEA (19/10/11) 612] UK based donors are likely to be easier for adult donor conceived children to contact. It is generally cheaper to recruit UK based donors. There may be practical issues, especially with sperm donors, who need to be screened following a six month quarantine period. The HFEA would not seek to prevent family members or known overseas donors making arrangements with UK recipients, therefore not disproportionately disadvantaging ethnic minorities. 2. It is recommended to the Authority that: Donors travelling to the UK from abroad are compensated in the same way as UK donors, without the provision of claiming an excess for additional travel expenses 2.1. It is reasoned that such a scheme would have the benefit of not arbitrarily discriminating against non-uk donors who wish to donate in this country, but prevents an excess being paid for overseas travel costs which could be an inducement to donate. 3. Imported donors 3.1. Currently about 20% of sperm donor gametes and 2% of egg donor gametes imported from overseas. Overseas donors whose sperm or eggs are imported to the UK must meet the same requirements as UK donors (eg, screening tests, identifiability), including the amount of compensation for expenses and lost earnings that they can receive We did not seek views on whether donors whose gametes who are imported into the UK should adhere to the same compensation scheme as that in the UK. If the Authority adopts the recommendations in this paper and awards a fixed sum of 750 to egg donors and 35 per clinic visit to sperm donors, it will need to further consider whether the same rules should continue to extend to overseas donors Given this was not in the remit of the review, the Authority is not asked to make this decision now. The Authority is asked to note that increasing compensation within the UK to a level that is not thought to be an unethical inducement in this jurisdiction, may well represent such an inducement in poorer countries. It is advised that Authority does not implement any change to the rules around compensation to donors whose gametes are imported from abroad until it has fully considered the matter. Donation review: Compensation of donors and benefits in kind 28

31 Donation review: Annexes Contents Part 1 Part 2 Annex A: Summary of quantitative and qualitative analysis...2 methodology Annex B: Changing landscape report (question1)...5 Annex C: Donor reimbursement and compensation questionnaire report Annex D: Benefits in kind questionnaire report Annex E: Literature review Annex F: Comparative systems of donation Annex G: Ethics seminar report Annex H: Patients focus group report Annex I: Parents focus group report Annex J: Report on interviews and discussion forums with donors, donorconceived adults, members of the public and faith groups Annex K: Report on the clinic meetings Annex L: Ipsos MORI public opinion poll Annex M: Economic Impact Assessment Annex N: Responses from organisations

32 Annex A: Summary of quantitative and qualitative analysis methodology Summary of quantitative and qualitative analysis methodology 1 Introduction For the quantitative analysis of the online questionnaires two members of staff were allocated to analyse two questions each. Analysis was completed using Excel Before analysis, the allocated members of staff met to review an analysis plan to agree common methods. As part of the analysis plan, the purpose of each questionnaire was clarified (as the analysis staff were not involved in questionnaire development) and proposed evaluations were listed. In addition to the quantitative analysis of the tick boxes (see section 3), the free text boxes were categorised and further analysed (see section 4). 2 Government guidance on Consultation analysis 2.1 The analysis of the responses received on the HFEA consultation donating sperm and eggs: have your say was carried out with reference to government guidance on analysis of consultation responses from Code of Practice on Consultation. 2.2 The relevant extract from the Code of Practice is set out below: Government guidance on analysis of consultation responses from Code of Practice on Consultation (available: ) Criterion _ Responsiveness of consultation exercises Consultation responses should be analysed carefully and clear feedback should be provided to participants following the consultation. 6.1 All responses (both written responses and those fed in through other channels such as discussion forums and public meetings) should be analysed carefully, using the expertise, experiences and views of respondents to develop a more effective and efficient policy. The focus should be on the evidence given by consultees to back up their arguments. Analysing consultation responses is primarily a qualitative rather than a quantitative exercise. 6.2 In order to ensure that responses are analysed correctly, it is important to understand who different bodies represent, and how the response has been pulled together, e.g. whether the views of members of a representative body were sought prior to drafting the response. 6.3 Consultation documents should, where possible, give an indication as to the likely timetable for further policy development. Should any significant changes in the timing arise, steps should be taken to communicate these to potential consultees. 6.4 Following a consultation exercise, the Government should provide a summary of who responded to the consultation exercise and a summary of the views expressed to each question. A summary of any other significant comments should also be - 2 -

33 provided. This feedback should normally set out what decisions have been taken in light of what was learnt from the consultation exercise. This information should normally be published before or alongside any further action, e.g. laying legislation before Parliament.16 Those who have participated in a consultation exercise should normally be alerted to the publication of this information. 6.5 Consideration should be given to publishing the individual responses received to consultation exercises. 6.6 The criteria of this Code should be reproduced in consultation papers alongside the contact details of the departmental Consultation Coordinator. Consultees should be invited to submit comments to the Consultation Coordinator about the extent to which the criteria have been observed and any ways of improving consultation processes. 3 Quantitative analysis For each question, and option within, the number and percentage of respondents in agreement/disagreement or otherwise of each option was calculated. The number and percentage of each respondent type was counted (note that the following types were grouped into clinic staff/ professionals : Fertility Doctor, Embryologist, Fertility Counsellor and Fertility Nurse). Responses were broken down according to respondent type. Part a of each question asks in principle questions, and then part(s) b and c follow up with practical options. Each part has been analysed both as a standalone question, and with a link between the answers to parts b and c (where appropriate) to the answers given in part a. People who had answered both Yes and No (of which there were very few) to part a questions were excluded from the part a analysis (as we could not be sure where their true intention lay). Additionally, for the same reason, people who had given two answers to questions in parts b or c which were considered mutually exclusive or contradictory were also excluded. When the stand alone analysis of parts b and c were completed, their answers to these questions were included. Where answers to parts b and c were explicitly linked to the answers in part a (for instance, in determining the practical thoughts of people in favour, or not in principle of the option), again these respondents were removed from the analysis. Organisations were grouped according to who or what they represented and the responses received were analysed separately (see Annex N). Where specific numbers were suggested (i.e. where respondents were asked to suggest fixed amounts of money to limit compensation) the mean, mode and median were calculated. For the equality assessment, the percentage saying yes, no or having no view was calculated and the specific groups identified were counted. Additionally, the reasons given for certain groups being either disproportionately affected, or not, were grouped into themes and counted. 4 Qualitative analysis (coding of free text box responses) - 3 -

34 4.1 In order to be able to perform analysis of the free text boxes in line with section 6.2 of the Government guidance (above), the answers were coded into specific themes. The process for developing and analysing the themes is set out below: o Members of the analysis team reviewed an initial amount of 50 responses in order to develop a first set of codes. o In addition to theme specific codes, two additional common codes were agreed, M, meaning a miscellaneous response which does not fall under any other code and X meaning a misunderstanding or mistake (e.g. response given is about a different question), they have not answered the question or the response contradicts the option they have selected (e.g. if they selected No limit to compensation then described a limit which should be in place). o To ensure consistency, the coding of the responses to each question was performed by one allocated member of staff. Additionally, a code tester was also assigned to each question. o Those responses that were coded X were not included in the analysis. o Codes which were allocated less than 10% of the time (not including X) were not considered themes and so were re-allocated to M or another code where necessary. o Following the completion of the coding, a random 10% sample of each question was selected (random numbers generated by SPSS v.17). The tester then coded the selected responses themselves and the intercoder reliability was calculated. Intercoder reliability, measured in this case using Cohen s kappa, tells us the level of agreement between the two coders and thus indicates how well the system works and how consistently the codes are applied. Cohen s kappa was calculated using SPSS v.17 by an independent member of staff, not involved in the development or implementation of the coding. A threshold value of kappa of 0.70 (which commonly equates to at least substantial agreement 1 ) was agreed; if a kappa score was below this the coding was investigated and if necessary, repeated. o Codes which were allocated more than 10% of the time were identified as themes. The number of responses in each theme was counted and presented graphically. 1 Landis, J.R.; & Koch, G.G. (1977). "The measurement of observer agreement for categorical data". Biometrics 33 (1): This reference gives as substantial and as almost perfect was chosen as a conservative substantial value

35 Annex B: Changing landscape questionnaire report (question 1) Donating sperm and eggs: Have your say Changing landscape questionnaire report (question 1) Review process and public consultation In the relatively short period of time since the Authority s donation policies were last reviewed, in 2005, the landscape of donation has changed. The aim of the current review and consultation, which stemmed from an evaluation of our policies in 2009, is to ensure our policies are up to date. This section of the consultation was designed to inform respondents about the wider context of donation. It acknowledged that many aspects of donation are beyond the Authority s remit but they impact on the areas we do regulate namely compensation for donors, the family limit and donation within families. The consultation text, on the changing landscape of donation, covered the following issues: - The changing age of fertility patients - The change in who is having fertility treatment and the make-up of families - New technologies in fertility treatment - Shortages of egg and sperm donors - The consequences of donor shortages - The rising number of online donation sites - Fertility treatment and donation trends - Possible solutions to the donor shortage - Possible ways of improving the current system - The ethical principles and concerns of donation 685 people responded to the questionnaire on the changing landscape of donation. A breakdown of respondent type is provided below. Respondents could choose from a list of categories or select other and specify what type of respondent they are. Figure 1 represents the percentage of respondents from a total of 793, because some people fell into more than one category of respondent type

36 Figure 1: Breakdown of respondents answering the changing landscape questionnaire The consultation questionnaire sought views on two particular issues relevant to the changing landscape of donation: the actions which could be taken to increase the availability of donated sperm and eggs in the UK; and the principles relevant to donation. The responses regarding the principles relevant donation were analysed and considered by the Authority in July Therefore this report focuses on responses to the question regarding actions which could be taken to increase the availability of donated sperm and eggs. A summary of the quantitative and qualitative analysis methodology can be found at Annex A. What action, besides amending HFEA policy, do you think could be taken to increase the availability of donated sperm and eggs in the UK? Respondents were asked the following: 1. What action, besides amending HFEA policy, do you think could be taken to increase the availability of donated sperm and eggs in the UK? (please select more than one if appropriate): A change to the law to enable donors to be paid for their donation, which is currently prohibited A change to the law to allow donors to be anonymous, which is currently prohibited A change to the law - other (please specify) A change to professional guidance on donor screening A change to professional guidance - other (please specify) - 6 -

37 Increasing people s awareness of, and educating people about, donation Carrying out national donor recruitment campaigns Other (please specify) None Figures 2& 3 show the number and percentage of respondents who were in agreement with each of the options outlined in question 1: Figure 2: The number of respondents in agreement with each of the options outlined in question 1. Figure 3: The percentage of respondents in agreement with each of the options outlined in question

38 The charts at Annex A show the number of respondents, of each specific respondent type, who were in agreement with each of the options outlined in question 1. Reasons for selecting A change to the law other Of the 79 (12%) people who selected this option all provided additional text explaining the change to the law they suggest to increase the availability of donated sperm and eggs. The following themes were identified from the explanations given: 1. A change to the law to reinstate donor anonymity/optional anonymity 2. A change to the law to facilitate contact/information exchange between donors and donor conceived people 3. A change to the law to allow donors to be paid 4. Disagrees in principle to: increasing donor supply/donation/donation to certain types of people /IVF. Or comments relating to alternatives to donation eg, adoption. M. Miscellaneous (no theme identified) Figure 4 shows how many responses fell into the above themes (please note, some answers fell into more than one theme): Figure 4: Number of responses regarding A change to the law other which fell into each theme Theme 1 A change to the law to reinstate donor anonymity/optional anonymity The following quotes demonstrate a selection of respondent s views. I think the anonymous part of donation should be optional. I for instance would be fine about being a known donor but I equally understand why someone would want to be anonymous. Fertility patient - 8 -

39 Some recipients want: a) Co-parents, b) "Known Donors", c) ID release when Child is 18yo & d) "Unknown Donors". WHY must there be only one type of donor and one type of recipient? Just as prospective parents choose the physical and emotional characteristics of a donor why not allow them to choose the donors relational characteristics as well? Dispense with the only one true politically corest paradigh of the donor and embrace diversity! - Donor Remove anything that prevent donors interest in becoming donors. This is especially anonymity/registration by HFEA, but also compensation limitation, additional HFEA-forms (MD form and D form), additional screening requirements, etc. Cryos International Theme 2 A change to the law to facilitate contact/information exchange between donors and donor conceived people The following quotes demonstrate a selection of respondent s views. Fully-open donation is a good option not currently available; anonymity should not be enforced by the state during childhood if both parties wish it to be relinquished. Anonymity and/or payment would be a less-preferred option than other possibilities, such as fully open donation, better education and promotion, etc. - Donor I believe that, where both the donor and the parents give their prior informed written consent, and with the support of a councillor or clinician, it should be permissible for a child born through donation to trace their biological father or mother at a younger age if they so wish. - Donor As well as known, donors should be offered a "Mailbox" connection service that empowers biological offspring AND respects the unknown future lives of donors. Fertility patient Theme 3 A change to the law to allow donors to be paid The following quotes demonstrate a selection of respondent s views. To allow all donors compensation for their time not just if they are employed. ie mums at home, self-employed, etc. Altrui A set price should be paid to the donor i.e. 1000, Fertility patient Theme 4 Disagrees in principle to: increasing donor supply/donation/donation to certain types of people /IVF. Or comments relating to alternatives to donation eg, adoption. The following quotes demonstrate a selection of respondent s views. I do not support any action to increase the availability of donated eggs, sperm or embryos, or even the use donor gametes at all, so I would support a change to the law that would ban the creation of children through donor conception. The HFEA / government have created the current mismatch between supply and demand of donor gametes by allowing those with "social infertility" to be given the same priority - 9 -

40 for treatment as those with genuine clinical infertility. It would be better and fairer to patients to lessen demand by returning to the use of donor gametes only in the case of genuine clinical infertility between heterosexual couples who would otherwise have had an expectation of parenthood without "alternative family building" medical intervention. Donor conceived person Preventing donation unless that donation comes from the husband to his wife so that any baby born to them is theirs totally Member of the public A ban on sperm donation so that children can have a loving relationship with their natural Father. A Christian who is concerned Miscellaneous (no theme identified) Miscellaneous responses, which do not fit into the themes above, included: Allowing donors/clinics to sell sperm directly over the internet, rather than having to go via a clinic for the expensive procedure of IUI. Fertility patient Voluntary removal of paternity rights and responsibilities for private (non-clinic) donors to SMC recipients - Donor In America I believe it is possible for spare embryos to be donated to infertile couples, perhaps this could be considered as I don t think British law currently allows this. Fertility patient and parent of a donor conceived person Reasons for selecting A change to professional guidance other Of the 42 (6%) people who selected this option all provided additional text explaining the change to professional guidance they suggest to increase the availability of donated sperm and eggs. The number of responses were too few and too varied to analyse using a coding system. Therefore the responses are summarised below: The responses fell under the following broad themes: Donor selection/screening Donor recruitment Information provision Matching of donors and recipients More efficient use of current donors In addition a number of responses suggested changes to HFEA guidance or changes unrelated to increasing donor availability. These are outlined at the end of this section. Donor selection/screening A small number of responses suggested that professional guidance on donor selection/screening should be amended:

41 Two responses, from a patient and a nurse, suggested that the current guidance on CMV (cytomegalovirus) testing of donors should be changed as there is no real evidence that CMV status of donors provides a risk to patients. Two responses, one from the Association of Clinical Embryologists and one from a donor, suggested that there should be professional guidance on the use of NAT testing (nucleic acid test detects the genetic material of a virus) for sperm and how this will impact on the quarantine period for sperm ie, if NAT testing us used the current 6 month quarantine period could be reduced making the process of using donated sperm easier. An embryologist noted that the guidelines for recruitment of gamete donors are well overdue a review and ABA / ACE will be looking to move this forward in association with our colleagues in other professional organisations. A donor suggested that consideration should be given to relaxing guidelines on the use of gametes from donors who carry readily managed, non-life limiting recessive genetic conditions such as recessive cystinuria. A member of the public suggested that men should be allowed to donate up to the age of 65. Donor recruitment Two respondents (a fertility patients and a research scientist) felt that there should be greater onus in the professional guidance on improved donor recruitment practices in clinics: I think the HFEA needs to put a greater onus on clinics to recruit altruistic donors as opposed to simply allowing them to use their current infertility patients as donors The statistics for donor conception success in the UK are, broadly speaking, poorer than in the U.S. or Europe, because many donors are older and have their own fertility problems. Recipients are not well-served if clinics do not have active, hard-working staff willing to recruit younger, healthier donors. Recipients are, in effect, being ill-served by the current state of regulation. - Fertility patient Information provision Two responses (from a member of the public and a parent of a donor conceived person) suggested that more information should be given to potential donors, presumably to encourage them to donate. Matching of donors and recipients One respondent (a patient, parent of a donor conceived person and member of the public) felt that professional guidance should: Allow/encourage both donors and recipients to make some choices how they prefer to donate: eg. 1) openness (minimal info/full info/photos to be available to recipients/offspring); 2) matching (both donor & recipient allowed choice in the match if they wish); 3) contact

42 (prefer/willing/unwilling to speak/meet before/after treatment); 4) compensation (altruistic/fair compensation/limited payment if allowed). A donor felt that professional guidance should require clinics to more carefully match the characteristics and medical histories of donors and recipients, which could lead to better use of current donors. More efficient use of current donors One respondent, a donor, felt that as the consultation document indicated that current donors are underutilised (ie, they are not always used to create 10 families), then professional bodies should give guidance on how to use sperm samples more efficiently. I was surprised to learn how few donors reach the 10-family limit - although the detailed reasons werent clear, it seems to imply that sperm samples are under-used, so any guidance to make sure that sperm samples are more efficiently used would be good. Responses relating to changes to HFEA guidance/policy to increase donor availability One response from a counsellor suggested, presumably as an alternative to recruiting donors in the UK, that there should be better regulation of UK clinics that offer treatment in collaboration with overseas clinics: counselling should be offered in these circumstances and that UK clinics should not have relationships with overseas clinics that don t comply with current principles, professional guidance and UK legislation A donor suggested that there would be no need to find new donors if the people donating through unlicensed donation websites donated through licensed clinics instead. A patient/parent of a donor conceived person suggested that: The manner in which distributed sperm samples are recorded as live births limits the number of patients that can be treated with a single donor. Instead clinics should be advised that they can take a more statistical approach to using donor sperm samples without running the risk of heavy criticism from the HFEA The National Gamete Donation Trust suggested the following: HFEA communicating their guidance effectively ensuring best practice and most efficient use of gametes, e.g. clarification when donors are registered, how to export to other clinics, clarification on sibling use, clarification on clinical use such as CMV, age of donors Responses not relating to increasing donor availability Six responses (from BASW Project Group on Assisted Reproduction, a counsellor, a fertility patient/social science researcher, Infertility Network Canada, a parent of a donor conceived person and a fertility patient/parent) suggested that professional guidance should primarily be based on safeguarding the welfare and interests of children, patients and donors. Specific changes to guidance suggested include

43 requiring prospective donors and recipients to have counselling, involving partners and existing children of donors and carrying out welfare of the child assessments on donors: Professional guidance should be based on robust evidence that safeguards children, patients and donors from risk of harm, incl social & emotional. Different standards must not be applied to known and stranger donors. Prospective donors and recipients should be referred to counsellor (rather than merely offered counselling); partners & existing children of patients and donors should be involved; donation should not proceed unless (i) partner has consented (ii) donor has provided pen portrait, reasons for donating, goodwill message. Welfare of child enquiries should apply to donors. Long term support sd be available. Any desire to increase donor supply should not be at the expense of ensuring the preparedness of donors and recipients for the long-term implications of donor conception - BASW PROGAR (Project Group on Assisted Reproduction) A small number of comments, from members of the public and donor conceived people, suggested that professional guidance should advise people against donation, ban donation or advise people how to avoid compromising their fertility. The Council for Responsible Genetics also stated Since virtually no long-term studies of the health effects of egg harvesting have been done, women cannot provide informed consent. There were a number of other suggestions, regarding amendments to professional guidance, which do not relate to increasing the availability of donated gametes. The most relevant of which are: Integrating the issue of donation into the prep for any fertility treatment - Patient and parent of donors conceived person Fertility clinics and the HFEA should provide patients with current and accurate information about waiting lists for donor gametes. Our experience of securing an egg donor in the UK was much more straight forward than we had been lead to believe, as we took part in an egg sharing programme. However, if we had not researched the issue ourselves we would have perhaps taken the advice from our clinic and sought treatment overseas. - Parent of donor conceived person Reasons for selecting Other Of the 82 (12%) people who selected this option all provided additional text explaining the other action they suggest to increase the availability of donated sperm and eggs. The following themes were identified from the explanations given: 1. Raise awareness of donation and infertility/ promote donation & carry out recruitment campaigns/ implement a national infrastructure for donation 2. Improve customer service clinics provide to donors/make donors feel more appreciated/ make process of donation easier/ clinics should make better use of existing donors/better co-ordination between clinics

44 3. Disagrees in principle to: increasing donor supply/donation/donation to certain types of people /IVF. Or comments relating to alternatives to donation eg, adoption. M. Miscellaneous (no theme identified) Figure 5 shows how many responses fell into the above themes (please note, some answers fell into more than one theme): Figure 5: Number of responses regarding Other which fell into each theme Theme 1 Raise awareness of donation and infertility/ promote donation & carry out recruitment campaigns/ implement a national infrastructure for donation The following quotes demonstrate a selection of respondent s views. Focussing campaigns on areas such as maternity units & family leisure centres where people will be favourably predisposed Fertility patient and parent of a donor conceived person Recruitment centres to remove the current policy of clinics stockpiling sperm to have a commercial edge. National sperm banks and sharing of information about egg sharers/donors would lead to fairer access to donated gametes Incentive of free treatment for egg sharers to be continued and more widely publicised especially amongst lesbian women. Fertility counsellor Informing them the benefits of their altruism and risks of the procedure Medical student Investing nationally in Donor Recruitment at DoH level and sustaining this investment to empower selected NHS andrology services to establish donor banks across the UK and to agree a fixed price for donor gametes which allows for

45 reasonable profit to cover additional local advertising and staffing costs but controls the ludicrous prices currently being asked for donor sperm from some private andrology laboratories in the UK. As these prices are often passed on to the patients themselves this is highly objectionable. Embryologist Clinics could develop links with their local universities to encourage students to donate as they are likely to be good donors. They could have stands at fresher s fairs and provide leaflets to university surgeries and student union. Fertility patient and parent of a donor conceived person Promoting more information about IVF & Donation in general. I think a lot of people don t know about the needs or the options & what it actually means. The whole perception that it is very secretive stops people from asking/discussing. News & headlines are always very negative or focus on the donor issues, not necessary the receiver & or family that they become Fertility patient Theme 2- Improve customer service clinics provide to donors/make donors feel more appreciated/ make process of donation easier/ clinics should make better use of existing donors/better co-ordination between clinics The following quotes demonstrate a selection of respondent s views. The process and information about the process, of sperm and egg donation needs to be improved so that opportunities, donations and donors are not lost in the system. Member of the public We believe that there is not a shortage of donors in the UK. The average sperm donor fathers only 1.8 children through donation, meaning current donors are underutilised. Furthermore, clinics could convert more prospective donors into active long term donors by keeping recruitment timescales short, contacting them at regular and timely intervals and avoiding leaving them hanging for long periods of time with no feedback or updates... UK Donor Link Registrants Panel We feel that the best route for increasing donors in the UK would be through awareness, education and (centralised national) recruitment campaigns. We also think it is very important that these campaigns seek to change attitudes more broadly, tackling the stigma currently associated with sperm donation and valuing the contribution donors make. We also believe it is important for donors to be treated well (information, waiting times, clinic atmosphere, politeness of staff) and given due respect. The better their experience is, the more positive they will feel about themselves and their donation. And they will be more likely to introduce further donors, which could be a very effective recruiting strategy. Mirror donation schemes, which seem to be working well in some European countries, also offer a possible means of increasing donor supplies. Additionally, we feel it is important to point out the current inefficiency of sperm use. Developing protocols to ensure that existing supplies are used more efficiently may have a significant impact on shortages. (this response also falls within theme 1) - Centre for Family Research, University of Cambridge

46 Theme 3 Disagrees in principle to: increasing donor supply/donation/donation to certain types of people /IVF. Or comments relating to alternatives to donation eg, adoption. The following quotes demonstrate a selection of respondent s views. This question presumes I wish egg donation to increase, I do not - Member of the public I do not believe there should be any effort to increase the numbers of egg and sperm donors. There is no such thing as a "shortage of sperm" - this is only a perception by those wishing to have a baby who may have fertility problems of their own. If they are so insistent on having a child, there should be changes made to make adoption more attractive and viable an option. Donor conceived person to support and counsel couples who are infertile to help them come to term with their condition and seek other avenues i.e. working with children or supporting dissadvantaged children from the developing world. - Midwifery advisor Miscellaneous (no theme identified) Miscellaneous responses, which do not fit into the themes above, included: clinics should source donors who go through websites or make private arrangements (2 responses) donation policies which we consulted on should be amended ie, family limit and compensation (4 responses) You cannot stop donation websites. Work with them not against them. - Donor Raising the limit to the number of families Embryologist and Person Responsible Allowing the amount paid for expenses to be increased to realistic level. Fertility patient

47 Annex A: Number of respondents, of each specific respondent type, who were in agreement with each of the options outlined in question 1 Fertility patients Figure 6: Number of fertility patients who agreed with each of the options outlined in question 1 Donors Figure 7: Number of donors who agreed with each of the options outlined in question

48 Donor conceived people Figure 8: Number of donor conceived people who agreed with each of the options outlined in question 1 Parents of donor conceived people Figure 9: Number of parents of donor conceived people who agreed with each of the options outlined in question

49 Fertility doctors Figure 10: Number of fertility doctors who agreed with each of the options outlined in question 1 Embryologists Figure 11: Number of embryologists who agreed with each of the options outlined in question

50 Fertility nurses Figure 12: Number of fertility nurses who agreed with each of the options outlined in question 1 Fertility counsellors Figure 13: Number of fertility counsellors who agreed with each of the options outlined in question

51 Research scientists Figure 14: Number of research scientists who agreed with each of the options outlined in question 1 Members of the public Figure 15: Number of members of the public who agreed with each of the options outlined in question

52 Organisations Figure 16: Number of organisations who agreed with each of the options outlined in question 1 Other respondents Figure 17: Number of other types of respondent who agreed with each of the options outlined in question

53 Annex C: Donor reimbursement and compensation questionnaire report Donating sperm and eggs: Have your say Donor reimbursement and compensation questionnaire report Review process In 2009 we undertook an evaluation of our policies around compensation, reimbursement and benefits in kind. The evaluation highlighted scope for improvement in the operational aspects of these policies for example donors can end up financially worse off as a result of donation, despite the fact the policy is designed to be expense neutral, but also that the system is more complex than it needs to be. As a result, the current policy may present unintended disincentives to donation. On the basis of the information gathered, the Authority agreed consultation options in December Overview of issues Payment for donation is not allowed by European law. Because the act of giving is generous and humane, the law does allow donors to receive compensation for inconvenience. This is different and additional to compensation for expenses and loss of earnings. The HFEA decides what kind of compensation should be given to donors within these legal limits. Currently we permit compensation for expenses and loss of earnings. Clinics can only give donors compensation for expenses incurred within the UK. So, clinics cannot currently bring in donors from other countries. However, they can import eggs or sperm from abroad. The public consultation The consultation questionnaire sought views on how sperm and egg donors should be compensated in the UK. Respondents were asked separate questions on expenses, earnings and inconvenience. Respondents were asked to respond separately for sperm and egg donation but were not obliged to provide an answer for both; therefore the number of responses differ for sperm and egg donation. A summary of the quantitative and qualitative analysis methodology can be found at annex A. 644 people responded to the questionnaire on reimbursement and compensation, however a smaller number responded to all questions. A breakdown of respondent type is provided below. Figure 1 represents the percentage of respondents from a total of 781, because some people fell into more than one category of respondent type

54 Figure 1: Breakdown of respondents answering the questionnaire Expenses Should donors be compensated for expenses? We asked whether, in principle, donors should be compensated for the expenses they incur during the process of making a donation. Respondents were asked to choose from the following options: Sperm donors Yes/No Egg donors Yes/No 641 people responded to the question for both sperm and egg donors. A breakdown of respondent type is provided below. As respondents were able to place themselves in more than one category, the total respondent types is greater than the total number of respondents. Figure 2 represents the breakdown as a percentage of a total of 777 respondents for sperm and eggs. The breakdown was the same for sperm and egg donors. Figure 2: Breakdown of respondents answering the question whether, in principle, they agreed with donors being compensated for expenses

55 Figure 3 shows that the majority of people, over four out of five, agreed that in principle both sperm and egg donors should receive compensation for expenses incurred. Figure 3: Percentage of respondents who agree or disagree, in principle, with donors being compensated for expenses Yes, in principle donors should be compensated for the expenses they incur during the process of making a donation People were not obliged to answer for both sperm and egg donors; therefore 532 (83%) selected this option for sperm donors and 538 (84%) selected this option for egg donors. Figure 4 provides a breakdown of respondent type for this option. The breakdown was similar* for those who selected this option for sperm and egg donors. Figure 4: Breakdown of respondents who agreed in principle with donors being compensated for expenses. * For egg donors 15% of the public selected this option

56 No, in principle donors should not be compensated for the expenses they incur during the process of making a donation People were not obliged to answer for both sperm and egg donors; therefore 109 (17%) of respondents selected this option for sperm donors and 103 (16%) selected this option for egg donors. Figure 5 provides a breakdown of respondent type for this option. The breakdown was similar* for those who selected this option for sperm and egg donors. Figure 5: Breakdown of respondents who disagreed in principle with donors being compensated for expenses. * For egg donors 7% of DC selected this option and 4% of donors selected this option. How should a donor s expenses be compensated? We asked how in practice donors expenses should be compensated. Respondents were asked to select a scheme for sperm and egg donors from the following options; A fixed amount of money that is the same for all sperm donors (please specify an amount in ) A variable amount of money according to the donor s actual expenses Other (please specify) People were not obliged to answer for both sperm and egg donors; therefore 550 people responded to the question for sperm donors and 552 people responded for egg donors. A breakdown of respondent type is provided below. As respondents were able to place themselves in more than one category, the total respondent types is greater than the total number of respondents. Figure 6 represents the breakdown as a percentage of a total of 672 respondents for sperm and eggs. The breakdown was the same for sperm and egg donors

57 Figure 6 Breakdown of respondents answering the question how in practice donors expenses should be compensated. Figure 8 on sperm donation and figure 9 on egg donation show that over half of the respondents favour the option for donors to receive a variable amount of money according to the donors actual earnings. Figure 7: percentage of respondents who chose each option answering the question how is practice should sperm donors be compensated Figure 8: percentage of respondents who chose each option answering the question how is practice should egg donors be compensated

58 Of those who gave their views on how sperm or egg donor s expenses should be compensated, nearly nine out of ten provided additional text explaining the reasons for the preference. An overview of the different views expressed by respondents is documented below. Of the, 109 who answered no in principle for sperm donors and 103 for egg donor, 16 and 12, respectively, gave their views on how in practice donors expenses should be compensate. These responses are included in the analysis below. Option 1 - A fixed amount of money that is the same for all sperm donors and for all egg donors 148 (27%) of respondents selected this option for sperm donors and 137 (25%) selected this option for egg donors. Figure 9 provides a breakdown of respondent type who chose option one for sperm and egg donors (% of total respondents). Of the number of respondents who selected option one, the largest group, 43% were patients. Figure 9: breakdown of respondent type who chose option one, a fixed amount of money that is the same for all sperm donors and for all egg donors (% of total respondents) Most frequently, these respondents thought that all sperm donors should receive a fixed amount of money of 100 (the median is also 100 and the average (mean) is ). For sperm donors, this is illustrated in the histogram at figure 10 below:

59 Figure 10: Range of values given by respondents when selecting a fixed amount of money for sperm donors Most frequently, these respondents thought that all egg donors should receive a fixed amount of money of 1000 (the median is 800 and the average (mean) is For egg donors, this is illustrated in the histogram at figure 11 below: Figure 11: Range of values given by respondents when selecting a fixed amount of money for egg donors Reasons for answers Of those who selected this option over eight out of ten people provided additional text explaining the reasons for the preference Of those who gave reasons for their view that option 1 should be implemented, the following themes were identified : 1. It would make the compensation process cheaper/easier to administer and clearer to donors 2. It would allow for reasonable compensation without acting as a incentive 3. A higher fixed amount should be given as an inconvenience payment

60 4. A higher fixed amount should be given to egg donors as an inconvenience payment M- Miscellaneous (no theme identified) Figure 12 on sperm donation and figure 13 on egg donation show how many responses fell into the above themes. Some answers fell into more than one theme. The most popular theme (88 counts) for both sperm and egg donation was theme 4 - A higher fixed amount should be given to egg donors as an inconvenience payment. Figure 12: Count of responses which fell into the above themes for option 1 sperm donation - a fixed amount of money that is the same for all sperm donors and for all egg donors. Figure 13: Count of responses which fell into the above themes for option 1 on egg donation - a fixed amount of money that is the same for all sperm donors and for all egg donors. Theme 1- It would make the compensation process cheaper/easier to administer and clearer to donors The following quotes demonstrate a selection of respondent s views

61 The time needed to document actual expenses, keep receipts and handle cash is wasteful and adds unnecessarily to the administrative burden. It is simply a pragmatic approach to make a reasonable estimate of likely costs incurred plus a token amount for inconvenience or lost earnings. This is not only easier for the clinic but for the donor who then doesnt need to worry about providing receipts and will have a very clear understanding of the level of remuneration. [Embryologist] It is easier to administer set sum of money and add the compensation to the cost of the treatment, most donors are unable to discuss their donation at work so can not claim for loss of earning or claim for child care. [Fertility nurse] I believe the amount should be fixed so that people know up front what expenses they can expect to receive if they offer to be a donor. This will enable the amount to be communicated openly and honestly, to prospective donors to help recruitment throughout the UK. I also believe that women should receive a higher amount than men due to the extended and potentially dangerous process. [Fertility patient] Theme 2 - It would allow for reasonable compensation without acting as a incentive The following quotes demonstrate a selection of respondent s views. I think that the compensation structure should be clear, but I dont think it should be an incentive to donation [interested member of the public] The amount given should be seen as a donation and not a purchase of a possible child. We believe the donor should want to contribute to fertility treatment through a belief of helping others and not through just financial gain, which these reasonable amounts would not give the recipient. [Fertility patient] I think this would compensate for loss of earnings, travel costs etc fairly, without providing undue incentive. A flat fee scheme would simplify the process of compensation which would encourage people to donate and could save the NHS money in the long term be eliminating uneccessary paperwork. However careful consideration needs to be given of the amounts compensated. The amounts chosen should be high enough to compensate all reasonable costs so that the scheme is not unfairly baised. For example if the fee is flat but too low, people living at a greater distance from donation clinics or in higher paid jobs may be discouraged from donating as they may end up out of pocket. [Fertility patient] Theme 3 - A higher fixed amount should be given as an inconvenience payment The following quotes demonstrate a selection of respondent s views. Currently there is a long waiting list for donor sperm and even longer for donor eggs. Therefore the current system is not working in some way. We had donor sperm and although our treatment was on the NHS the clinic purchased sperm from abroad. I think making a payment to the donor as a demonstration of thanks is a small price to pay if couples are able to have a child. [Fertility patient] Current compensation rates seem too low when considering the time and effort involved in donation. Donors should not be in a situation where they are out of

62 pocket when donating. Male and female donors should be compensated equally for the different, but equally demanding processes they go through. research scientist There would be more donors available, i am currently going to Spain for treatment for egg donation. [Fertility patient] Theme 4 A higher fixed amount should be given to egg donors as an inconvenience payment The following quotes demonstrate a selection of respondent s views. This system would be easier to administer and understand. Not sure of appropriate amounts (was forced to fill these boxes in) but suggest the amount could be based on an average of current expenses claimed by donors, reviewed annually & linked to inflation. This figure would probably (and appropriately) be larger for egg donors than for sperm donors because the procedures and time involved are greater. [Interested member of the public] I think the amount should reflect the importance of the donation and the reletive invasivness of the procedure thus 1000 for an egg(s) and 200 for sperm donation. The amount has to act as an incentive to the best donors to donate. An egg donor should be paid 1000 for a cycle as opposed to an amount per egg because, in terms of process, there is no difference. [Fertility patient] I have not added up the actual financial implications of donating. However, having gone trough drug stimulated IUI (incl follocle reduction) it is my feeling that women donating eggs go through a lot more inconvinience than men for donating sperm. At least 4 appointments for scans, taking drugs and the actual egg collection, which includes sedatives which prevent you from driving for 2 days. All this also needs to be timed according to the bodys response and not 5pm on a Friday suits me. I therefore think women should be compensated with abuot double the money men receive. [Fertility patient] Miscellaneous (no theme identified) There would be more donors available, i am currently going to Spain for treatment for egg donation. [Fertility patient] I think donors have decreased significantly due to the fact that anonimity has been removed. This discourages a lot of poeple. Sperm donation is a much less invasive procedure compared to egg donation. Therefore the compensation which a female donor should get should be far higher than the male equivalent. [Fertility patient] I do not agree with compensation. It is paramount to shopping for a baby. The long term emotional and mental welfare of the donor-produced child would then be at great risk. [Interested member of the public] We find the issuing of receipt for odd amounts to be very embarassing an demeaning for the donors. All of their expenses and inconvenience could be compensated by a single payment to avoid this. [Embryologist and person responsible]

63 Option 2 A variable amount of money according to the donor s actual expenses The majority, 317(58%) of respondents selected this option for sperm donors and 316 (57%) selected this option for egg donors. Figure 14 provides a breakdown of respondent type who chose option two for sperm and egg donors (% of total respondents). Figure 14: breakdown of respondent type who chose option two, a variable amount of money according to the donor s actual expenses for sperm and egg donors Reasons for answers Of those who selected this option, over eight out of ten people provided additional text explaining the reasons for the preference. Of those who gave reasons for their view that option 2 should be implemented, the following themes were identified 1. This is the fairest method of reimbursement 2. This system avoids an incentive to donate M- Miscellaneous (no theme identified) Figure 15 on sperm donation and figure 16 on egg donation show how many responses fell into the above themes. Some answers fell into more than one theme. The most popular theme (165, 167 counts) for sperm and egg donation was theme 1- this is the fairest method of reimbursement

64 Figure 15: Count of responses which fell into the above themes for option 2 sperm donation - A variable amount of money according to the donor s actual expenses. Figure 16: Count of responses which fell into the above themes for option 2 egg donation - A variable amount of money according to the donor s actual expenses. Theme 1- This is the fairest method of reimbursement The following quotes demonstrate a selection of respondent s views Because as a donor you may have to travel a didtance to the nearest clinic that has a donor programme and I do believe that while people act in good faith, expecting them to be out of pocket for it is unfair [Fertility patient, donor and parent of a donor conceived person] A fixed amount makes no sense as actual expenses could vary considerably. The point is surely that potential donors should not be put off by the prospect of losing money. Equally, there should be no possibility of making a profit through the expenses as this amounts to payment and could serve as a motive for donating. [Interested member of the public]

65 I feel that if donors are fairly and fully compensated for donating eggs/sperm then more people may come forward. Particularly those on high incomes who would like to donate. [Fertility patient] I dont think people should be out of pocket for egg or sperm donation. I think there should be fair recompense also for salary/pay that is deducted. [Interested member of the public] Compensating for actual expenses is the fairest way. Unless a fixed amount was pretty high it could mean that it costs donors to make a donation and that would not encourage anyone. [Fertility patient] Theme 2 - This system avoids an incentive to donate The following quotes demonstrate a selection of respondent s views I do not believe that there should be a financial motive in donation so compensation should only be baed on actual expenses incurred. [Fertility patient and parent of a donor conceived person] Human gametes should not be bought and sold. However, people should be compensated so they are not out of pocket. [Fertility nurse] I donated altruistically, and had I been paid thousands of pounds it would have left me questioning my initial motives. However, I do not believe the donor should be left out of pocket for travel, medication required etc. Also, paying for eggs/sperm also raises the question of whether people should start to pay for organs required, or how much money a life is worth. [Donor] Miscellaneous (no theme identified) The following quotes demonstrate a selection of respondent s views If it is a fixed amount regardless of expenses, it will discourage people who live further away, or have to take time off work, from donating. [Interested member of the public] If it widens access to donors and encourages people to come forward, then that can only be a good thing. If it means that patients like me are spared the pain and suffering of enforced involuntary childlessness then this has to be done. Do not make the same mistake as you made in [Fertility patient] Should really not receive any money e.g. like blood donation and organ donation when you die. However, I believe they should receive some money only if: - we have a real shortage of sperm and eggs - private clinics are making a lot of money from their donation I believe the NHS does also sell donated blood to private clinics, but apparently they put the profit back into the blood service. This seems like a good process. [Donor conceived person] Option 3 Other 85 (15%) of respondents selected this option for sperm donors and 99 (18%) selected this option for egg donors

66 Figure 17 provides a breakdown of respondent type who chose other for sperm and egg donors (% of total respondents). Figure 17: breakdown of respondent type who chose option other for sperm and egg donors Reasons for answers Of those who selected this option, nearly four out of ten people provided additional text explaining the reasons for the preference. An overview of the different views expressed by each stakeholder group is documented below: Of those who gave reasons for their view the following themes were identified: 1. A variable amount which is capped 2. A variable expenses system, but a fixed sum for inconvenience 3. An inconvenience sum should be offered to attract sufficient donors and to adequately compensate them (especially egg donors) 4. Disagrees to donation/compensation in principle. M- Miscellaneous (no theme identified) Figure 18 for sperm donation and figure 19 for egg donation show how many responses fell into the above themes. Some answers fell into more than one theme. The most popular theme (28, 33 counts) for sperm and egg donation was theme 2 - A variable expenses system, but a fixed sum for inconvenience

67 Figure 18: Count of responses which fell into the above themes for option other on sperm donation Figure 12: Count of responses which fell into the above themes for option other on egg donation Theme 1- A variable amount which is capped The following quotes demonstrate a selection of respondent s views Variable amount which is capped, with the expenses being adequately funded through the IVF treatment costs. With a maximum of 25 As a couple, myself and my wife have visited Spain for treatment with the overall cost being equal to the cost here in the UK, which includes egg donation and IVF. The system at present is not working, in fact it is quite archaic and backward thinking. It needs to become more progressive to help couples like us who unfortunately were unable to start a family through natural means. The fee of 765 in Spain was paid without question, although budgeting is an option for private treatment, it is about more than money for the recipients. The donors regardless of circumstance or motivation should be rewarded, and adequately at that, assuming all screenings are passed. [Parent of a donor conceived person] A fixed amount of money relative to demand, plus actual expenses capped proportionally. However, the compensation should reflect the tremendous difference between egg donation and sperm donation. I think it would attract a much higher number of donors if there was a financial reward for donating. (other than just compensating for expenses) A higher number of donors will increase quality, diversity and choice. Financial rewards for donating works well in other countries. [fertility patient]

68 Sperm donors: variable but capped at GBP 250 Egg donors: variable but capped at GBP 350 it should not cost the donor to give, however to give some clarity to recipients this should be capped 250 being a reasonable cap for use of public transport with a slightly higher allowance for egg donors due to need to take private transport post egg retrieval. [Fertility patient] Theme 2 - A variable expenses system, but a fixed sum for inconvenience The following quotes demonstrate a selection of respondent s views A mixture of a variable amount according to indivdual expenses and a fixed amount for the inconvenience I think taking into consideration the inconvenience, the invasive methods for egg donation and the inconvenience for sperm donors, is as important as the purely financial costs of travel etc. Especially since egg donation can cause several side effects, and sperm donation requires quite a lot of commitment over time. [Interested member of the public] Combination of fixed (for medical risk/pain, commitment with forms/tests/injections etc) and variable (for time, travel, lost salary) A flexible scheme to adjust for donors in different life/work situations, to not feel they lost out or it was a silly thing to do for a stranger. Recipient families should not be left feeling they owe a debt to their donor they can never repay. For egg donors it is a very big undertaking (their time commitment & pain/risks should be considered), and even more so if the woman has to take time off work (hence lost earnings/holiday compensation). [Fertility patient, parent of a donor conceived person and interested member of the public] Theme 3 - An inconvenience sum should be offered to attract sufficient donors and to adequately compensate them (especially egg donors) The following quotes demonstrate a selection of respondent s views Expenses plus an incentive to donate. The demand is there, but the payment should only be sufficient to be an incentive but should be more because donors have to go through more than sperm donors. I understand there are more donors available abroad because they are paid. Patients abroad do not have the long wait as patients in this country. The waiting lists here are too long, causing undue emotional trauma to prospective parents and their extended families. The HFEA needs to amend their rules to take away some of this suffering, finding out you cannot conceive naturally is a painful enough trauma. [Interested member of the public] A significant amount that covers both work and time lost as well as inconvenience, but not so much that financial motivation exceeds altruism. The Spanish system seems to get the right balance. For egg donors in particular, the physical and emotional toll that IVF takes is substantial. A cursory amount of compensation makes something that is already complicated even more onerous. What the donor goes through is substantial and they should be rewarded accordingly, however that sum should be kept to a level where it doesnt encourage people to become donors out of pure financial motivation. [Fertility patient] Theme 4 Disagrees to donation/compensation in principle. The following quotes demonstrate a selection of respondent s views

69 There should be no money as any donation is morally wrong Children are a gift and we should not be playing god just because we can. A child should always know who its biological mother and father are. If sperm and egg donation continues, it most certainly should not involve any payment of money. [interested member of the public] The same way other parents are compensated for getting pregnant. Not at all. Humans are not cattle. Children are not calves. This might sound obvious, but I think families should be about family. If a potential parent wants someone else involved in making a child, they should involve them without involving money. Isnt that the way it is done most of the time? My donor would have never dated my mother. My parents had a child they could never have understood. The ignorance and selfishness of doctors, donors, parents, and organizations with views like I am seeing here cause excrutiating pain in the product of their work. [Donor conceived person] no compensation, it is about (potentially) starting a life and should be done for purely altruistic reasons (if at all). [Fertility patient] M- Miscellaneous (no theme identified) I feel a fixed fee for donation, and a Variable Fee for Travel depending on location. Look at how much money 1 Egg donation costs. (also if many eggs are generated from a Donor then this will facilitate more fertilised Embryos. An donor should Benefit from being Healthy and the more eggs she produces, should be compensaed accordingly, but only if Guided By Medical advice. We are a lesbian couple, and finding good Sperm is Not very Easy, and know that on many co-parent sites itt is possible to meet donors, who dont agree with the extortionate prices of clinics, and they dont want to be tied to paternity. [Fertility patient ] A fixed amount per donation plus expenses. Clinics make anormous amounts out of donations so why should egg donors not be suitable rewarded? There seems to be a double standard here. Clinics chrage enormous sums but donors receive almost nothing. I appreciate that EU law prevents donors from receiving payment for their donations as such, but I think they should receive an equal nominal amount for each donation, plus any expenses they have incurred. [donor] Should donors be compensated for expenses they incur outside the UK? We asked whether donors should be compensated for expenses they incur outside the UK (eg, the cost of travel to a clinic in the UK from Asia or Europe). Respondents were asked to choose from the following options: Sperm donors Yes/No Egg donors Yes/No People were not obliged to answer for both sperm and egg donors; therefore 563 responses were receive for sperm donors and 561 responses for egg donors. A breakdown of respondent type is provided below. As respondents were able to place themselves in more than one category, the total respondent types is greater than the total number of respondents. Figure 20 represents the breakdown as a percentage

70 of a total of 690 respondents for sperm and 687 for eggs. The breakdown was the same for sperm and egg donation. Figure 20: Breakdown of respondents answering the question whether donors should be compensated for expenses they incur outside the UK. Figure 21 shows that the majority of respondents, 70% for sperm donation and 67% for egg donation, disagree to donors receiving compensated for expenses they incur outside the UK Figure 21: Percentage of respondents who agree or disagree, to donors receiving compensated for expenses they incur outside the UK Reasons for answers Of those who gave their views on whether sperm or egg donors should be compensated for expenses they incur outside the UK, over 7 out of ten people provided additional text explaining the reasons for the preference; An overview of the different views expressed by respondents is documented below

71 Yes, sperm and/or egg donors should be compensated for expenses they incur outside the UK 170 (30%) of respondents selected this option for sperm donors and 183 (33%) selected this option for egg donors. Figure 22 provides a breakdown of respondent type for this option. The breakdown was similar* for those who responded to questions on both sperm and egg donors. Figure 22: Breakdown of respondents who agreed that donors should be compensated for expenses they incur outside the UK. * For egg donors 44 % of patients, 12% parent of DCC, 2% researchers and 4% DC selected this option. Of those who gave reasons for their view that sperm or eggs donors should be compensated for expenses they incur outside the UK, the following themes were identified: 1. Foreign donors should be compensated in the same way as UK ones 2. We should import donors, but only as a last resort/with caution 3. Importing donors is not a problem/could even help with ethnic matching M- Miscellaneous (no theme identified) Figure 23 for sperm donation and figure 24 for egg donation show how many responses fell into the above themes. Some answers fell into more than one theme. The most popular theme (74, 82 counts) for sperm and egg donation was theme 1 - Foreign donors should be compensated in the same way as UK ones

72 Figure 23: Count of responses which fell into the above themes for yes, sperm donors should be compensated for expenses they incur outside the UK Figure 24: Count of responses which fell into the above themes for yes, egg donors should be compensated for expenses they incur outside the UK Theme 1- Foreign donors should be compensated in the same way as UK ones The following quotes demonstrate a selection of respondent s views: I don t see that the principles should be different for UK or overseas donors. As long as the overseas donors who come here are subject to the same checks and rules as UK donors, which was my understanding from the information pack, then they should be treated similarly... [Donor] It should be all the expenses, like anyone from this country. Otherwise people living in the UK who are ethnically from other areas of the world may find it hard to get donors... [Fertility patient] The goal should be to recruit uk donors, but if no uk donors available then foreign donors should be compensated in the same way, and with the same conditions of e.g. removal of anonymity [Fertility patient and parent of a donor conceived person] Theme 2 - We should import donors, but only as a last resort/with caution The following quotes demonstrate a selection of respondent s views: Only if it is desperate that we look abroad for donors. Ideally, there should be enough donors within the UK and their expenses would be cheaper. [Fertility patient and parent of a donor conceived person If actual expenses are reimbursed, there should be no restriction on where they were incurred. However, the prospect of international travel raises concerns over the risks of trafficking of donors, confirmation of identity and possibly safety and efficacy

73 that suggest that careful regulation would be needed in this area. [Other: Academic group] The law should extend fairly for everyone. However, Id like to see us look for sperm donors as close to home before inviting people from abroad. Awareness is so low that money spent on a good advetising campaign would be far better spent. [Fertility patient] Theme 3 Importing donors is not a problem/could even help with ethnic matching The following quotes demonstrate a selection of respondent s views: This may help patients needing donors of specific ethnicities. interested member of the public If this means that we can encourage donors from different ethnic backgrounds, then I think we should compensate them for their costs. One thing I noticed when we were going through the donor process was a severe lack of donors from other ethnic backgrounds. Encouragement of overseas donors is an important part of helping those in our society not from a white British background to find an appropriate donor without resorting to travelling abroad where the donor conception methods may not be so regulated/riskier. [fertility patient and parent of a donor conceived person] Some ethnicities are underrepresented - there are too few donors, and this would improve the situation. It woudl also allow for relatives to travel in order to allow them to donate, when this cannot be done in the familys Country of origin. [fertility patient[ Miscellaneous (no theme identified) Who is to pay for that...it seems reasonable to pass this cost on to those who ultimately will benefit--the recipient. [Fertility patient] Not sure but some compensation should be given [Fertility patient] I think that Europe should match up, otherwise it will always be more attractive for couples to go outside the UK. [Fertility patient] No, sperm and/or egg donors should be compensated for expenses they incur outside the UK 393 (70%) of respondents selected this option for sperm donors and 378 (67%) selected this option for egg donors. Figure 25 shows a breakdown of respondent type for this option. Patients and members of the public were the largest respondent type group to select this option. The breakdown was similar* for both sperm and egg donors

74 Figure 25: Breakdown of respondents who disagreed that donors should be compensated for expenses they incur outside the UK. *For egg donors 3% of DC selected this option. Of those who gave reasons for their view that no donors should be compensated for expenses they incur outside the UK, the following themes were identified: 1. Feel uneasy about/am opposed to/concerned about the cost of using foreign donors, increase UK donors instead 2. Increase UK donors instead by offering better compensation or inconvenience payments 3. Concerned about exploiting or financially inducing donors 4. Not in the interests of the donor conceived person: foreign donors won t be easily contactable 5. Gametes should be imported instead of donors 6. Disagrees to donation/compensation in principle. M- Miscellaneous (no theme identified) Figure 26 on sperm donation and figure 27 on egg donation show how many responses fell into the above themes. Some answers fell into more than one theme. The most popular theme (142, 141 counts) for sperm and egg donation was theme 1 - Feel uneasy about/am opposed to/concerned about the cost of using foreign donors, increase UK donors instead. Figure 26: Count of responses which fell into the above themes for no, sperm donors should not be compensated for expenses they incur outside the UK

75 Figure 27: Count of responses which fell into the above themes for no, sperm donors should not be compensated for expenses they incur outside the UK Theme 1- Feel uneasy about/am opposed to/concerned about the cost of using foreign donors, increase UK donors instead The following quotes demonstrate a selection of respondent s views: The cost of reimbursing these expenses could be substantial and would be better spent by clinics and PCTs on encouraging UK donors to come forward and donate. [Fertility patient and parent of a donor conceived person] I think compensating donors travelling from Asia or Europe would be far too complicated and costly, particularly for NHS clinics. [Other: fertility clinic staff member] I think we need to work on improving services in the UK with UK donors before we even start to think about shipping donors in from abroad. Also with donors from abroad it may be far harder for the child to track them down should they wish at 18 years. The only exception to this could be for very hard to find ethnic minority donors. [Fertility patient and parent of a donor conceived person] the majority of patients are looking for donors that are resident in the UK therefore focus should be on recruiting local donors rather than those from abroad. [Embryologist] Theme 2 - Increase UK donors instead by offering better compensation or inconvenience payments The following quotes demonstrate a selection of respondent s views: If there was a national recruitment program in place, coupled with compensation for donors, I believe the demand could be met without resorting to the extraordinary expense of paying people for overseas travel. donor

76 If donors will get reasonable pay here in the UK we would not need to import donors from outside. [Other: egg donation coordinator] I think there should be proper compensation for donors within the UK, but not a system that encourages international "trade" in donors. It has the potential for exploiting donors from poorer countries where the compensation available in the UK is the equivalent of so much in their own country that it amounts to payment [Fertility patient] Theme 3 - Concerned about exploiting or financially inducing donors The following quotes demonstrate a selection of respondent s views: We have two objections to this: a practical one and an ethical one. Firstly, practically, it is easy to transport frozen sperm, and it is becoming increasingly easy to transport frozen eggs. Therefore there seems little reason for donors to travel. More importantly though, our ethical objections concern the extent to which such compensation would be an inducement, particularly to women (and men) from more economically disadvantaged contexts [Other academic group] This would encourage donation purely for economic reasons fertility patient and donor I feel that donation should still have the principal of alturism as opposed to any financial gain. This may not improve donation numbers but at least disuades any commercialisation in regard to the donation of eggs or sperm, which I feel could lead to further problems with regards to the perceived ownership of subsequent children or exploitation of young, poorer women for thier eggs. embryologist This would cause a massive increase in fees for potential recipients. Also, donors in poverty in the developing world could be exploited or motivated by financial gain to come to the UK to donate. [Potential fertility patient] There are plenty of possible donors in the UK. We should not be encouraging people to have a holiday on the NHS. [fertility patient] Theme 4 Not in the interests of the donor conceived person: foreign donors won t be easily contactable The following quotes demonstrate a selection of respondent s views: We should be focussing on recruiting local donors - moving into fertility tourism brings the risk of all sorts of poor practice, and in particular, will make it harder for the offspring to access up to date information about their donors or trace them. [Parent of a donor conceived person] We should be doing more to discourage the use of overseas donors. This is because they may be more difficult to trace when the child is older, and requesting identifying information. Increasing donor compensation here may also prevent people travelling. [Parent of a donor conceived person]

77 I feel uneasy about any donors recruited abroad - it may be much harder to verify any medical details, and very importantly how the liklihood of any resulting offspring being able to trace them in the future could be remote. Surely the ability to import gametes circumvents UK law and policy? I think the issue of having a donor from a different culture could prove problematic for many adult offspring. [Fertility patient and parent of a donor conceived person] Theme 5 - Gametes should be imported instead of donors The following quotes demonstrate a selection of respondent s views: Sperm may be cryopreserved successfully so travel to a UK clinic is not necessary. Until egg cryopreservation is widely available and successful I would allow payment of travel expenses to the UK [Other: retired fertility doctor] This might get terribly expensive. Fertility treatment is expensive enough as it is. You may just as well import sperm and eggs rather than fly people in a different country to donate. [Fertility patient] People should donate in their own country and be compensated accordingly. Imported eggs or sperm should be "paid for" by arrangements between clinics. [Parent of a donor conceived person Theme 6 - Disagrees to donation/compensation in principle The following quotes demonstrate a selection of respondent s views: There SHOULD NOT be compensation for donors! Even if they happen to be in Antarctica! It brings the wrong motive!!! How much do you think a donor from Asia or Europe should compensated for a kidney? [Donor conceived person] I do not agree with compensation. It is paramount to shopping for a baby. The long term emotional and mental welfare of the donor-produced child would then be at great risk. [Interested member of the public] Earnings Should donors be compensated for earnings they lose during the process of making a donation? We asked whether, in principle, donors should be compensated for earnings they lose during the process of making a donation (eg, for time off work to attend clinic appointments). Respondents were asked to choose from the following options: Sperm donors Yes/No Egg donors Yes/No People were not obliged to answer for both sperm and egg donors; therefore 643 responses were received for sperm donors and 642 responses for egg donors. A breakdown of respondent type is provided below. As respondents were able to place themselves in more than one category, the total respondent types is greater than the total number of respondents. Figure 28 represents the breakdown as a

78 percentage of a total of 778 respondents for sperm and 776 for eggs. The breakdown was the same for sperm and egg donors. Figure 28: Breakdown of respondents answering the question whether, in principle, donors should be compensated for earnings they lose during the process of making a donation Figure 29 shows that the majority of people, over 60%, agreed that in principle both sperm and egg donors should receive compensation for earnings they lose during the process of making a donation. Figure 29: Percentage of respondents who agree or disagree, in principle, with donors being compensated for loss of earnings Yes, in principle donors should be compensated for the earnings they lose during the process of making a donation The majority, 395 (61%) of respondents selected this option for sperm donors and 437(68%) selected this option for egg donors. Figure 30 shows a breakdown of

79 respondent type for this option (the breakdown was similar* for both sperm and egg donors). Figure 30: Breakdown of respondents who agreed in principle with donors being compensated for loss of earnings. * For egg donors, 34% of patients, 10% of donors, 12% of clinic staff, 16% of the public and 8% of other, selected this option. No, in principle donors should not be compensated for the earnings they lose during the process of making a donation 248 (39%) of respondents selected this option for sperm donors and 205 (32%) selected this option for egg donors. Figure 31 shows a breakdown of respondent type for this option (the breakdown was similar* for both sperm and egg donors). Figure 31: Breakdown of respondents who disagreed in principle with donors being compensated for loss of earnings. * For egg donors, 23% of patients, 7% of donors, 7% of parents of DCC, 7% of clinic staff, 31% of the public, 14% of other and 5% of DC selected this option. How should a donor s loss of earnings be compensated? We asked how in practice donors earnings should be compensated. Respondents were asked to select a scheme for sperm and egg donors from the following options;

80 A fixed amount of money that is the same for all sperm donors (please specify an amount in ) A variable amount of money according to the donor s actual earnings lost Other (please specify) People were not obliged to answer for both sperm and egg donors; therefore 432 responses were received for sperm donors and 454 responses for egg donors. A breakdown of respondent type is provided below. As respondents were able to place themselves in more than one category, the total respondent types is greater than the total number of respondents. Figure 32 represents the breakdown as a percentage of a total of 525 respondents for sperm and 552 for eggs. The breakdown was similar* for sperm and egg donors. Figure 32: Breakdown of respondents answering the question how, in practice, donors earnings should be compensated. * For egg donors, 9% of donors, 3% of DC and 12% of clinic staff selected this option. Figure 33 for sperm donation and figure 34 for egg donation shows the proportion of respondents who chose each option. Of those who responded, over half agreed donors should receive a variable amount of money according to the donor s actual earnings lost. Figure 33: percentage of respondents who chose each option, answering the question, how in practice, should loss of earnings be compensated for sperm donation

81 Figure 3: percentage of respondents who chose each option, answering the question, how in practice, should loss of earnings be compensated for egg donation Of those people who gave their views on how donor s earnings should be compensated, over eight out of ten people provided additional text explaining the reasons for the preference; An overview of the different views expressed by respondents is documented below. Of the, 248 who answered no in principle for sperm donors and 205 for egg donor, 37 and 16, respectively, gave their views on how in practice donors loss of earnings should be compensate. These responses are included in the analysis below. Option 1 - A fixed amount of money that is the same for all sperm donors and for all egg donors One in four, 107 (25%), of respondents selected this option for sperm donors and 105 (23%) selected this option for egg donors. Figure 35 shows a breakdown of respondent type who chose option one for sperm and egg donors (% of total respondents). Figure 35: breakdown of respondent type who chose option 1, a fixed amount of money that is the same for all sperm donors and for all egg donors

82 Most frequently, these respondents thought that all sperm donors should receive a fixed amount of money of 100 (the median is also 100 and the average (mean) is ). The range of values selected by respondents for sperm donors is illustrated in the below histogram at figure 36: Figure 36: Range of values given by respondents for a fixed amount for sperm donors Most frequently, these respondents thought that all egg donors should receive a fixed amount of money of 500 (the median is 250 and the average (mean) is ). The range of values selected by respondents for egg donors is illustrated in the below histogram at figure 37: Figure 37: Range of values given by respondents for fixed amount for egg donors Reasons for answers Of those people who selected this option for sperm or eggs donation, 83 (78%) provided additional text explaining the reasons for the preference; 24 (22%) provided no additional information about their answer. Of those who gave reasons for their view that option 1 should be implemented, the following themes were identified:

83 1. To motivate people to donate/remove barriers to donation 2. All donors should receive the same lump sum irrespective of their earnings as this is fair 3. Lump sum is simple/easy to administer 4. The amount should reflect the time and effort required 5. Sperm donors experience less disruption and discomfort than egg donors smaller fixed amount for sperm donors Miscellaneous (no theme identified) Figure 38 on sperm donation and figure 39 on egg donation show how many responses fell into the above themes. Some answers fell into more than one theme. The most popular themes (38, 40 counts) are theme 2 - all donors should receive the same lump sum irrespective of their earnings as this is fair; and theme 5 - sperm donors experience less disruption and discomfort than egg donors smaller fixed amount for sperm donors Figure 38: Count of responses which fell into the above themes for option 1 for sperm donors, a fixed amount of money that is the same for all sperm donors and for all egg donors Figure39: Count of responses which fell into the above themes for option 1 for egg donors, a fixed amount of money that is the same for all sperm donors and for all egg donors

84 Theme 1- To motivate people to donate/remove barriers to donation The following quotes demonstrate a selection of respondent s views. An amount that is incentive enough for students/young people to donate but no so much that it would be a job substitute and if it is non anonymous then your name would be on records so you cant donate at loads of places. [Fertility patient] These are inadequate limits given modern salaries and at these levels will only be uptaken by certain individuals. The majority will not claim or have these appointments done during their free time. A fixed payment will include a contribution towards income lost. [Fertility doctor] Donors would be encouraged by payment. [Interested member of the public] Theme 2 - All donors should receive the same lump sum irrespective of their earnings as this is fair The following quotes demonstrate a selection of respondent s views. My answers are the same for all these questions and shpould be a fixed sum for all donors. What is the right amount is difficult to say and it should be a bit for this and a bit for that. One fixed sum whether its inconvenience loss of earnings travel expenses or whatever. I would hope these donors are doing as a genuine desire to help people not to benefit themselves. [Fertility doctor] A modest fixed amount ensures that those embarking on the donation process are not influenced by financial gain. It would be interesting to know how many people actually claimed the daily limit, or (as in my case) used annual leave so were not financially disadvantaged. What is not being challenged is are we doing enough with the current process to maximise donors. For example, if a potential donor contacts a Fertility clinic (private or NHS) what is the experience? My experience was pretty poor as there was no clear avenue for a donor to join a donation programme. Through a combination of stubborness and determination, I eventually got an appointment to see the consultant and was accepted onto the programme. Make it easier for people to at least get through the door before considering chucking money at them! [Donor] I agree with the current scheme. Again, I dont think donors should be differentiated, especially not according to how much they earn. [Other: social scientist] Theme 3 - Lump sum is simple/easy to administer The following quotes demonstrate a selection of respondent s views

85 A standard payment for loss of earnings would be much eaiser to administrate and everyone would know before they embark what the loss of earnings compensation would be. [Donor] Again a fixed amount should cover the time within reason. I would think that individual compensation would be very time consuming to work out and a fixed figure for all provided they are suitable donors would be a clearer method of payment fertility patient Theme 4 - The amount should reflect the time and effort required The following quotes demonstrate a selection of respondent s views. Becoming a donor is a lengthy process and involves many repeat visits. While there may be many people open to the idea of becoming a donor the process and number of appointments will put a high percentage of those off and there must be sufficient compensation to encourage people to see the process through. The compensation should really be for time given up whether it is work time or personal time. [Fertility patient] I believe the current amount of 250 has been in existance for a while. I have put my suggestion higher to account for inflation, and egg donors incur an invaisive procedure which could result in more time off work. However I would not like the amount to be too high so as to encourage vulnerable people thinking donating gametes could be a way to help them resolve their financial problems. [fertility counsellor] Theme 5 Sperm donors experience less disruption and discomfort than egg donors smaller fixed amount for sperm donors The following quotes demonstrate a selection of respondent s views. Sperm donors can give very easily but egg donors will have to take much more time off work for scans and egg donation. Therefore it is only fair they are paid a reasonable sum of money as compensation for this. I feel this sum would be a much better compensation than the current 250. [Fertility patient] We are relying on peoples good will to donate. We shouldnt financially penalise them. Women should receive more as they are likely to have to take more time off work than men. [Other: medical student] Miscellaneous (no theme identified) Because it would attract many more people to become donors if they could be sure that they would not be left out of pocket for making their donation. fertility nurse The amount should remain as per jury service, there is little need for sperm donations to be made during working hours and would therefore question why variable compensation would need to be offered. If egg donors received compensation for eggs this would cover loss of earnings to a degree, having a variable amount would mean only the wealthier recipients would be able to afford a professionals eggs given that they would have higher earnings loss. Given that UK

86 donations are not anonymous, employers could be encouraged to offer a variant sick leave to cover such donations. fertility patient Based on current minimum wage. embryologist Option 2 A variable amount of money according to the donor s actual earnings lost 246 (57%) of respondents selected this option for sperm donors and 275 (61%) selected this option for egg donors. Figure 40 shows a breakdown of respondent type who chose option two for sperm and egg donors (% of total respondents). Figure 40: breakdown of respondent type who chose option 2, a variable amount of money according to the donor s actual earnings lost Reasons for answers Of the those who selected this option, nearly eight out of ten people provided additional text explaining the reasons for the preference. Of those who gave reasons for their view that option 2 should be implemented, the following themes were identified 1. Donors should not be out of pocket as a result of donating. 2. This will better reflect the time and effort required/this is a fair system 3. A fixed amount may incentivise some people to donate / a variable system would keep it altruistic with a CAP to ensure person not better off Miscellaneous (no theme identified) Figure 41 on sperm donation and figure 42 on egg donation show how many responses fell into the above themes. Some answers fell into more than one theme. The most popular theme (95, 94 counts) is theme 1 - donors should not be out of pocket as a result of donating

87 Figure 41: Count of responses which fell into the above themes for option 2 for sperm donors, a variable amount of money according to the donor s actual earnings lost Figure 42: Count of responses which fell into the above themes for option 2 for egg donors, a variable amount of money according to the donor s actual earnings lost Theme 1- Donors should not be out of pocket as a result of donating. The following quotes demonstrate a selection of respondent s views In order to increase the number of donors in the UK we need to make sure that the people making this very generous gift do not lose out on earnings or expenses. [Fertility patient] They should not lose earnings because they have donated but similarly should not make money as this may act as an incentive to donate. [Embryologist] It makes sense to cover loss of earings..you cant treat all donors the same or else the pool of donors will remain small and opportunties for good matches with families lost. [Fertility patient] Theme 2 - This will better reflect the time and effort required/this is a fair system The following quotes demonstrate a selection of respondent s views

88 The number of appointments needed by each donor is likely to vary (tests, etc, plus the difference between actual sperm donation compared with egg collection), so this variation should be recognised. [Fertility patient] The issue of travel distances means that it may take some donors much longer just to get to the donation centre, (and less well off / carless donors would take longer than those with cars) so the amount should vary according to the time involved, though it might simplify greatly to use a fixed hourly rate - average national hourly wage? The principle, I believe, should be to encourage donation across all social groups and all areas of the country. [Fertility patient and parent of a donor conceived person] This is fair (prevents people from making money, or from being out of pocket, due to a difference between a standardised fixed sum and their actual earnings). Many people earning more than per day may currently view this as a disincentive to donate. Jury service is compulsory! Donation is a gift, but those donating should be supported so that it does not cost them to donate. [Interested member of the public] Theme 3 - A fixed amount may incentivise some people to donate / a variable system would keep it altruistic with a CAP to ensure person not better off The following quotes demonstrate a selection of respondent s views What people earn is what people earn. If a set amount is prescribed it will impose unacceptable financial incentives on donors. Those earning below the standard rate will donate, those earning above the rate will not donate, jeopardising the prospect of an inclusive pool of donors. [Fertility patient] The amount offered as compensation for loss of earnings should be offered on scale basis based on average daily earnings (excluding bonuses etc). Compensation bands could then be developed so that again people know in advance they would be compensated per day based on their daily earnings between x and x. Againt this would then enable the amounts to be communicated openly and honestly to potential donors and is fair regardless of location and job. [Fertility patient] Its reasonable to compensate earnings up to a point. Donors on low incomes in particular need to be treated fairly, but investment bankers cant be paid a rate equivalent to their day job. [Parent of a donor conceived person] Miscellaneous (no theme identified) The following quotes demonstrate a selection of respondent s views i think the compensation should apply to self-employed people or be given to employers and charged to pts at an average rate over, say a one year period, as it would be difficult to justify charging different couples vastly different amounts of expenses. [Other: PGD nurse] 81% responded to this question of which 52% wanted to see variable compensation levels whilst 33% wished to see fixed amounts. A fixed amount may be more or less that the donor has incurred in expenses and if it is more then it amounts to a fee which means that it is the gametes are not donated but bought. Should only allow actual loss of earnings based on individual circumstances - transparency and equal

89 method and would ensure donors are not out of pocket Fixed amounts ranged from 150 for sperm donors t o 3,000 for egg donors due to the time they have to attend clinics. [Other: The British Fertility Society] The rate should be automatically adjusted in line with inflation and the upper limit adjusted with inflation. Currently compensation needs adjusting not the system. [Other: Recruiter of altruistic donors] Option 3 Other 79 (18%) of respondents selected this option for sperm donors and 74 (16%) selected this option for egg donors. Figure 43 shows a breakdown of respondent type who chose this option for sperm and egg donors (% of total respondents). Figure 43: breakdown of respondent type who chose option other for sperm and egg donation Reasons for answers Of those who selected this option, nearly all respondents provided additional text explaining the reasons for the preference. Of those who gave reasons for their view that another option should be implemented, the following themes were identified 1. No financial gain should be available 2. Allow variable and/or fixed payment but with a cap, or at a set hourly rate, per visit Miscellaneous (no theme identified) Figure 44 on sperm donation and figure 45 on egg donation show how many responses fell into the above themes. Some answers fell into more than one theme. The most popular theme (42, 45 counts) is theme 2 allow variable and/or fixed payment but with a cap, or at a set hourly rate, per visit

90 Figure 44: Count of responses which fell into the above themes for option other for sperm donation Figure 45: Count of responses which fell into the above themes for option other for egg Theme 1- No financial gain should be available donation The following quotes demonstrate a selection of respondent s views Its too complicated to be either/or as the options above suggest. What about self employed people - what would their "actual" earnings lost be? The main principle should be no financial gain and the secondary principle should be as little disincentive to donate as possible. Maybe people should have the right to paid time off to donate? [Interested member of the public] Current Policy I feel donors shouldnt earn money from their donation but at the same time loss of earnings should not be a deterrant from donating. I feel a similar compensation to jury service is a fair compromise. [Fertility patient and parent of a donor conceived person] None Reimbursing lost wages opens the door for this to be used as a loophole to pay the donor, thereby inducing them to donate, something the Act was set up to

91 avoid. Moreover, other kinds of donors blood, tissue, charity, etc are not compensated for lost lost. [Other fertility patient and Executive Director of a charity] Theme 2 - Allow variable and/or fixed payment but with a cap, or at a set hourly rate, per visit The following quotes demonstrate a selection of respondent s views A variable amount of money according to the donor s actual earnings lost, capped at a reasonable level (determined by the maxima of the first few standard deviations of wage earnings - to prevent extremely high earners consuming the budget). Healthcare professionals working in fertility sectors would not be expected to perform their duties at a financial expense to themselves, so I believe it is similarly unfair to expect participants/donors to do the same. [Research scientist and interested member of the public] A capped amount based upon the amount they earn. I realise some people earn far more than others and the amount compensated should be based on their loss of earnings. However, this should be capped so that if a person who earned a considerable amount as a day rate, was not turned away as an egg donor, simply because the clinic / patients couldnt afford to recompense the loss of earnings. [Donor] a variable amount but with a cap By having a cap - maximum amount it would stop the costs becoming too prohibitative. But compensation in particular for the egg donors who needs to go for several scans / tests etc would seem more than reasonable. [Fertility patient] Miscellaneous (no theme identified) The following quotes demonstrate a selection of respondent s views I think the current policy of compensation for loss of earnings should remain the same The current Policy of compensation for loss of earnings seems fair as it is and Ithink it should remain as it is [Fertility patient] In principle compensating for loss of earnings seems reasonable, but I am unsure how this could be implemented efficiently. I did not suffer any loss of earnings, as I was working part-time and could fit in donations around my work. I suspect that many (most?) donors do not suffer loss of earnings as such, but I do not have access to any hard facts about this. Actual loss of earnings may perhaps be more likely for self-employed people, but may also be more difficult to quantify and to supply proof/receipts. Overall I would probably recommend a fixed but more generous amount for the time and inconvenience. [Donor] I think an unwaged donor should recieve the same compensation as anyone else who might have a job. The occupational status of gamete donors, to me, seems irrelevant to how much they are compensated as a donor. [Fertility patient] Inconvenience Should donors be compensated for the disruption and discomfort associated with the process of making a donation?

92 We asked whether, in principle, donors should be compensated for the disruption and discomfort associated with the process of making a donation (eg, the inconvenience and side effects of hormone injections for egg donors and the inconvenience of numerous clinic visits for sperm donors). Respondents were asked to choose from the following options: Sperm donors Yes/No Egg donors Yes/No People were not obliged to answer for both sperm and egg donors; therefore 643 responses were received for sperm donors and 644 responses for egg donors. A breakdown of respondent type is provided below. As respondents were able to place themselves in more than one category, the total respondent types is greater than the total number of respondents. Figure 46 represents the breakdown as a percentage of a total of 711 respondents for sperm and 713 for eggs. The breakdown was the same for sperm and egg donors. Figure 46: Breakdown of respondents answering the question whether, in principle, donors should be compensated for the disruption and discomfort associated with the process of making a donation. Figure 47 shows that a minority (230 out of 643, 36%) are in favour of compensating sperm donors for inconvenience, and a small majority (331 out of 644,51%) are in favour for compensating egg donors for inconvenience

93 Figure 47: Percentage of respondents who agree or disagree, in principle, with donors being compensated for inconvenience Yes, in principle donors should be compensated for the disruption and discomfort associated with the process of making a donation 230 (36%) of respondents selected this option for sperm donors and 331(51%) selected this option for egg donors. Figure 48 shows a breakdown of respondent type for this option. The breakdown was similar* for respondents who answered questions for both sperm and egg donors. Figure 48: Breakdown of respondents who agreed in principle with donors being compensated for the disruption and discomfort associated with the process of making a donation. * For egg donors 37% of patients, 10% of donors, 9% of parents of DCC, 13 clinic staff, 2% researchers, 14% public and 8% other selected this option. No, in principle donors should not be compensated for the disruption and discomfort associated with the process of making a donation

94 413(64%) of respondents selected this option for sperm donors and 313 (49%) selected this option for egg donors. Figure 49 provides a breakdown of respondent type for this option. The breakdown was similar* for respondents who answered questions for both sperm and egg donors. Figure 49: Breakdown of respondents who disagreed in principle with donors being compensated for the disruption and discomfort associated with the process of making a donation. * For egg donors 24% of patients, 10% of Parents of DCC, 7% clinic staff, 27% public, 12% other and 6% of organisations selected this option How should a donor be compensated for the routine disruption and discomfort associated with the process of making a donation? We asked how in practice donor should be compensated for the routine disruption and discomfort associated with the process of making a donation. Respondents were asked to select a scheme for sperm and egg donors from the following options; A fixed amount of money that is the same for all sperm donors (please specify an amount in ) A variable amount of money according to the donor s actual disruption and discomfort experienced Other (please specify) People were not obliged to answer for both sperm and egg donors; therefore 305 people responses were received for sperm donors and 355 responses for egg donors. A breakdown of respondent type is provided below. Figure 50 and figure 51 shows the percentage of respondents from a total of 370 who responded on sperm donors and 432 who responded on egg donors as some people fell into more than one category of respondent type

95 Figure 50: Breakdown of respondents answering the question how, in practice, should sperm donors be compensated for the inconvenience of donation Figure 51: Breakdown of respondents answering the question how, in practice, should egg donors be compensated for the inconvenience of donation Figure 52 and figure 53 shows the proportion of respondents who chose each option for sperm and egg donation,. The proportions are broadly similar for both sperm and egg donors, with around half of the respondents choosing a fixed amount and between around a fifth and a quarter choosing either a variable amount or other method

96 Figure 52: percentage of respondents who chose each option answering the question how is practice should sperm donors be compensated for the inconvenience of donating Figure 53: percentage of respondents who chose each option answering the question how is practice should egg donors be compensated for the inconvenience of donating Of those who gave their views on how donors should be compensated for the inconvenience of donating, over 8 out of ten provided additional text explaining the reasons for the preference; An overview of the different views expressed by respondents is documented below. Of the 43 who answered no in principle for sperm donors and 313 for egg donors,74 and 24, respectively, gave their views on how in practice donors should be

97 compensated for the inconvenience of donating. These responses are included in the analysis below. Option 1 - A fixed amount of money that is the same for all sperm donors and for all egg donors Figure 54 shows a breakdown of respondent type who chose option one for sperm and egg donors (% of total respondents). Figure 54: breakdown of respondent type who chose option 1 for sperm and egg donors A small majority of respondents, 159 (52%) selected this option for sperm donation and 184 (51%) selected this option for egg donation. Most frequently, these respondents thought that all sperm donors should receive a fixed amount of money of 100 (the median is also 100 and the average (mean) is slightly higher at ). The range of values suggested was 0 to 1,500 Figure 55 shows the range of values given by respondents for the inconvenience of sperm donation

98 Figure 55: Histogram showing the range of values sperm donors should receive Most frequently, these respondents thought that all egg donors should receive a fixed amount of money of 500 (the median is also 500 and the average (mean) is again higher at raised in part by the small number of respondents who suggested a much higher amount). The range of values suggested was 0 to 8,000. Figure 56 shows the range of values given by respondents for the inconvenience of egg donation: Figure 56: Histogram showing the range of values egg donors should receive Reasons for answers Of those who selected this option, over seven in ten people provided additional text explaining the reasons for the preference. Of those who gave reasons for their view that option 1 should be implemented, the following themes were identified:

99 1. The inconvenience of donation should be recognised, but donors should not be financially incentivised to donate 2. Sperm donors experience less disruption and discomfort than egg donors therefore should receive smaller fixed amounts 3. Donation is invasive/time intensive/risky and that should be recognised/rewarded/ this would also attract more donors M - Miscellaneous (no theme identified) Figure 57 for sperm donation and figure 58 for egg donation shows how many responses fell into the above themes (please note, some answers fell into more than one theme): Figure 57: Count of responses which fell into the above themes for option 1 for sperm donation Figure 58: Count of responses which fell into the above themes for option 1 for egg donation Theme 1- The inconvenience of donation should be recognised, but donors should not be financially incentivised to donate The following quotes demonstrate a selection of respondent s views

100 I have done IVF and donor IVF. IVF is a very intrusive process but I dont feel that the compensation should be so high that it creates a market of people donating for money. maximum of 700. [Fertility patient] It does cause some inconvenience an i feel some reimbursement for this is warranted - but not an exceptionally high figure to avoid encourgaing non-suitable individuals to donate. [Embryologist] I dont think donating should be about monetary rewards but the reality is that if there was compensation the number of donars would be increased. [Fertility patient] Theme 2 Sperm donors experience less disruption and discomfort than egg donors therefore should receive smaller fixed amounts The following quotes demonstrate a selection of respondent s views. I think that you have to cap any amount but that the inconvenience and potential health risks are greater for women, hence the increased amount for egg donors. I think there are other ways to pay women - e.g providing cabs to and from clinics, vouchers etc. [Donor] Egg donations are more intrusive than sperm donations therefore a compensation should reflect this. It should be a thank you of sorts [interested member of the public] Amounts have to be sufficient to encourage donation but not so large that they are the sole reason for donating. Sperm donation is significantly easier than egg donation and can happen more often so there should be a smaller amount but based on each donation made. [Fertility patient] Theme 3 - Donation is invasive/time intensive/risky and that should be recognised/rewarded. This would also attract more donors Donating eggs or sperm is an amazing thing to do and as well as paid expenses donors should be entitled to a gift which compensates for discomfort and disruption. The fee may attract more people which will reduce waiting lists and reduce the number of patients who are forced to seek treatment abroad due to the lack of donors in the UK. [Fertility patient] By acknowledging the discomfort financially can motivate people and encourage new donors. Too much concern is currently given to the motivations of donors, why is this so important? would it be that bad if a donor donated merely to receive a payment in return? This will never mean as much to a donor as it does to someone needing donated sperm/eggs, so recognising this is key. I am donating eggs and using donated sperm so I feel entirely different about both the donation and the receiving of sperm. [Fertility patient and donor] As in earlier question, this would be my reason for payment. I have had ivf before donor ivf and am aware of the unpleasant parts of the process especially for egg donor, and the time needed to have scans and treatment, and self injections. I think a basic payment is only fair when such an altruistic donation is considered. [Fertility patient]

101 Miscellaneous (no theme identified) What worries me is that if all this money is paid for donating the cost of treatment will go up for the recipient and it is already incredibly expensive [fertility patient, donor and parent of a donor conceived person] I believe they should be recompensed but it should be predictable for the recipients of the donation so that an added complication such as hyperstimulation etc is included as a risk when considering the fixed sum the woman should get. [Fertility patient and parent of a donor conceived person] I believe the donors need to be fully counselled prior to donating and full information regarding the disruption and discomfort expected so that they can make an informed decision of whether they feel they can deal with the donation process. I dont think a different fee should be paid dependent on individual donors as this would appear unfair. This is in contrast to the expenses as this may be different for each donor. [Embryologist] It is a routine procedure and although there will always be exceptions the majority of donors will more or less have the same experience. [Fertility patient] Option 2 - A variable amount of money according to the donor s actual disruption and discomfort experienced 63 (21%) of respondents selected this option for sperm donors and 97 (27%) selected this option for egg donors. Figure 59 shows a breakdown of respondent type who chose option two for sperm and egg donors (% of total respondents). Figure 59: breakdown of respondent type who chose option 2 for sperm and egg donors Reasons for answers

102 Of those who selected this option, over five out of ten people provided additional text explaining the reasons for the preference. Of those who gave reasons for their view that option 2 should be implemented, the following themes were identified 1. The inconvenience of donation should be recognised, but donors should not be financially incentivised to donate 2. Donation is invasive/time intensive/risky and that should be recognised/rewarded 3. To allow adequate compensation for time 4. To recognise it is easier to donate sperm than eggs 5. Actual inconvenience will vary from person to person M- Miscellaneous (no theme identified) Figure 60 for sperm donation and figure 61 for egg donation shows how many responses fell into the above themes (please note, some answers fell into more than one theme): Figure 60: Count of responses which fell into the above themes for option 2 for sperm donation Figure 61: Count of responses which fell into the above themes for option 2 for egg donation

103 Theme 1- The inconvenience of donation should be recognised, but donors should not be financially incentivised to donate The following quotes demonstrate a selection of respondent s views This is an altruistic act (as the system stands) but recognition of the time as well as the gesture is not wrong. it is hard to find a balance between this and people viewing it as a way to mad e money without necessarily understanding the whole picture. However, in soem countries money is paid and it is not seen as an issue. Donating gametes is not blood donation by the nature of the intended outcome; a new life. ihat is why it is compliacted, and so is the issue of compensation. Soem compensation is reasonable. [Fertility patient and parent of a donor conceived person] yes because it will affect their lifestyle and this will encourage more donations. However it is important that this doesnt lead to excessive profit for the donor. A lot of time and lifestyle changes are required for both donations and these sacrifices must be acknoledged. Many people may wish to donate alturistically, they dont wish to gain from the donation but also wont want to come out worse off afterwards. [Embryologist] Theme 2 - Donation is invasive/time intensive/risky and that should be recognised/rewarded The following quotes demonstrate a selection of respondent s views They should be rewarded! [Fertility nurse] When I was undergoing fertility treatment, I had to take an average of 4 injections daily to stimulate my ovaries. I did not mind the doscomfort much as I was making them for my own use. It is a different story if you are donating them, there should be some form of incentive attached to encourage people to donate in spite of the discomfort they will encounter. [Fertility patient] Egg donors have to undergo a physical toil to get ready for egg collection. Its painful and difficult. [Fertility patient] Theme 3 - To allow adequate compensation for time The following quotes demonstrate a selection of respondent s views Individuals need to be compensated for inconvenience, I think the amount of money should depend on number of visits and any other individual factors that are felt to be relevant. [Parent of a donor conceived person] Some donors require more visits than others. Some egg donors will have discomfort more than others [fertility nurse] Theme 4 - To recognise it is easier to donate sperm than eggs The following quotes demonstrate a selection of respondent s views

104 I believe there is a distinction here between sperm and egg donors based on the total number of visits required and hence the amount of disruption experienced. I believe altruistic egg donors should recieve between the region of 800 to I have experienced sperm donors visiting from between 10 and 60 times and perhaps the compensation can be calculated based on frequency. I would like to see sperm donors receiving for every 3 months of (frequent) donating. Many potential sperm donor enquiries do not come to fruitition, and the main reason is the lack of payment. The removal of anonymity does not appear to be the main discouragement. [Embryologist] Egg donors who experience considerable disruption particularly due to any complications arising from their donation should perhaps receive slightly more in compensation [fertility patient] Egg donors have to undergo a physical toil to get ready for egg collection. Its painful and difficult.[fertility patient] Theme 5 - Actual inconvenience will vary from person to person The following quotes demonstrate a selection of respondent s views Individuals need to be compensated for inconvenience, I think the amount of money should depend on number of visits and any other individual factors that are felt to be relevant. [parent of a donor conceived person] From experience sometimes its all very straight forward and other times its very complicated! A donor should not be prevented from donating simply because they genuinely cant afford to. [fertility patient and parent of a donor conceived person] M- Miscellaneous (no theme identified) Theres no reason why in this day and age that people should not be compensated. Failing to do this in the UK will only drive people abroad where regulation is less strict. Better to have patients being treated in the UK [embryologist] that would be a varibale amount of money a clinic would decide the amount [fertility doctor] Option 3 Other 83 (27%) of respondents selected this option for sperm donors and 74 (21%) selected this option for egg donors. Figure 62 shows a breakdown of respondent type who chose other for sperm and egg donors (% of total respondents)

105 Figure 62: breakdown of respondent type who chose option 3 other for sperm and egg donors Reasons for answers Of those who selected this option, nearly all respondents provided additional text explaining the reasons for the preference. An overview of the different views expressed by each stakeholder group is documented below: Of those who gave reasons for their view that another option should be implemented, the following themes were identified 1. The inconvenience of donation should be recognised, but donors should not be financially incentivised to donate 2. Donation is invasive/time intensive/risky and that should be recognised/rewarded 3. There should be a lump sum for expenses, loss of earnings and inconvenience 4. Sperm donors should receive less than egg donors because the process is less invasive 5. Disagrees with incentives to donate 6. Disagree in principle to donation/compensation M- Miscellaneous (no theme identified) Figure 63 for sperm donation and figure 64 for egg donation shows how many responses fell into the above themes (please note, some answers fell into more than one theme):

106 Figure 63: Count of responses which fell into the above themes for option 3 for sperm donation Figure 64: Count of responses which fell into the above themes for option 3 for egg donation Theme 1- The inconvenience of donation should be recognised, but donors should not be financially incentivised to donate The following quotes demonstrate a selection of respondent s views Simple & appropriate. When I donated, I would enjoy pampering myself using the 5 pounds I recieved by having a coffee and a donut afterwards. Its like a small present for the inconvenience. A way, at the time, of saying "thanks for your donation". Donors should have the right AND KNOWLEDGE to refuse payment. [Donor] My experience of sperm donation is that the expenses are not particularly generous. I was working part-time at the time, so it was relatively easy to fit in donations, but it still involved 48 trips which each took most of an afternoon, including travel time, and of course the requirement for abstinence intruded into my personal life. I was paid fixed expenses of 20 per donation. I think it is OK for expenses to include an element of compensation for time and inconvenience, and this need not require receipts - receipts make the admin cumbersome, and may deter donors from

107 claiming if it makes it more difficult to keep the donations confidential. The current system of using the limit for jury service payments seems a good principle, but it just needs to be streamlined so that it is easier to claim and administer. I dont see why there should be an overall limit, if the payment is fair for one donation it should be fair for however many donations are needed by the clinic to get a good bank of samples. I agree with both quotes from clinicians in the HFEA guidance pack on donor motivation - the main motivation has to be altruistic but more generous expenses would make the donor feel more valued. [Donor] Theme 2 - Donation is invasive/time intensive/risky and that should be recognised/rewarded The following quotes demonstrate a selection of respondent s views I think that this should be considered with the compensation for lost earnings. In effect it is putting a value on peoples time whether they are giving up personal or work time. Havin gone through IVF I know about the inconvenience to egg donors - the injections, the egg collection and the operation recovery time - and it has a significant impact on life. I am also aware that sperm donors have to make repeated visits for donations and for the screening tests. In addition there may be lifestyle changes that are required during the period of donation - perhaps limiting alcohol consumption and potentially an impact on the donors sex life. It requires a lot of dedication and proper compensation recognising the sacrifices that have to be made is essential if donor numbers are to be improved. [Fertility patient] The same rate as is paid by egg donors in other European countries should be compensated to donors here in the UK These egg and sperm donors are giving up a part of their lives and also putting their bodies at some risk medically so I feel strongly that it is their right to be fairly compensated whilst undergoing this treatment. I do think that this applies more to women who donate their eggs. [Fertility patient] Theme 3 - There should be a lump sum for expenses, loss of earnings and inconvenience The following quotes demonstrate a selection of respondent s views This should be incorporated into the 1000 payment per course of egg donation I have proposed. I do not believe that this should be means tested or scaled depending on personal earnings, everyone should be given the same payment. [Embryologist] Why not use a per diem calculation, just like a standard (modifed) travel allowance that MPs get? I think you are making the problem too complicated. Whats next, a meal allowance? Child care vouchers? Just develop a flat-rate donor compensation limit and be done with it. [Fertility patient] The option of varying compensation according to the donors actual disruption and discomfort experienced is not viable, because there is no objective method of ascribing a monetary value to an individuals experience of disruption and discomfort, which is subjective. The closest thing to such an objective method that exists in the UK is the routine practice in the civil courts of assessing damages for an individual whose deficit falls into the category pain, suffering and loss of amenity. Compensation for routine disruption and discomfort should therefore take the form of

108 a fixed amount of money that is the same for all sperm donors, and a fixed amount of money that is the same for all egg donors. But rather than specify this amount ourselves, we would encourage the HFEA to seek counsels opinion as to what fixed amount is commensurate with recent legal precedent. [Interested member of the public] Theme 4 - Sperm donors should receive less than egg donors because the process is less invasive The following quotes demonstrate a selection of respondent s views I appreciate that sperm donation requires many clinic visits however i do not accept that this procedure causes the males any discomfort. [Fertility patient and donor] Egg donors undergo numerous injections and a surgical procedure that does not compare with the sperm donors level of "discomfort". Hence different responses for sperm and egg donors. [embryologist] Theme 5 - Disagrees with incentives to donate The following quotes demonstrate a selection of respondent s views I think when you agree to donate you accept that inconvenience is part of it. fertility patient Donors should only give to those known to them and so do it for love not money. interested member of the public It is clearly right that donors should be valued, thanked and appreciated for what they do. Recipients are immensely grateful to their donor and should be facilitated in being able to thank them without identities being revealed. But that does not imply or involve handing money to donors, when doing so can distort their motivation. Donor conceived people half of whose genetic make-up is inherited from their donor will inevitably speculate about the reason why their donor donated. Some will be disturbed by the thought that their donor may simply have donated for the money, a motivation that may be seen as disreputable. As one donor conceived individual put it, to think that my donor might have been motivated by money and have no concern for my welfare makes me feel awful. [fertility patient and organisation supporting parents and would-be parents of donor conceived children] Theme 6 - Disagree in principle to donation/compensation I feel that if you pay for travel expenses and the time required off work then there would be no need to pay for the side affects of treatment.[ parent of a donor conceived person] the reasoning for donating should out weight the need for compensation. if they require compensation for disruption then reasoning for donations surely needs to be questioned [donor conceived person] In practice, I dont think there is a way to do this without it being treated as a payment, which I find unjustifiable. parent of a donor conceived person

109 Miscellaneous (no theme identified) It should be a fixed amount for all (how do you measure discomfort and disruption - its such a subjective thing?). If you dont make it one payment youll spend loads of time faffing around doing assessments which is a waste of time. I think you need to make the process of payment as simple as possible and avoid any payment assessment based on subjective analysis. [Fertility patient]

110 Annex A: Breakdown of option selected by each respondent type Question 1a: In principle, do you think donors should be compensated for expenses they incur during the process of making a donation (eg, the cost of a train fare to the clinic)? The follow charts show the breakdown by respondent type for sperm and egg donation: Sperm donation Egg donation Respondent Yes % No % Total Yes % No % Total type Fertility patients Donors Donor conceived Parents of DCC Clinic staff Research scientists Interested members of the public Other Organisations Question 1b: In practice, how do you think a donor s expenses should be compensated? The follow charts show the breakdown by respondent type for sperm donation: Respondent type Sperm Donation Option 1 Option 2 Option 3 A fixed amount % A variable amount % Other % Total of money that of money according (excluding is the same for to the donor s actual where no all sperm expenses answer donors chosen) Fertility patients Donors

111 Donor conceived Parent of DCC Clinic staff Researcher Public Other Organisation The follow charts show the breakdown by respondent type for egg donation: Respondent type Egg Donation Option 1 Option 2 Option 3 A fixed amount % A variable amount % Other % Total of money that of money according (excluding is the same for to the donor s actual where no all sperm expenses answer donors chosen) Fertility patients Donors Donor conceived Parent of DCC Clinic staff Researcher Public Other Organisation

112 1c Should donors be compensated for expenses they incur outside the UK? The follow charts show the breakdown by respondent type for sperm and egg donation: Sperm donation Egg donation Respondent Yes % No % Total Yes % No % Total type Fertility patients Donors Donor conceived Parents of DCC Clinic staff Research scientists Interested members of the public Other Organisations a In principle, do you think donors should be compensated for earnings they lose during the process of making a donation (eg, for time off work to attend clinic appointments)? The follow charts show the breakdown by respondent type for sperm and egg donation: Sperm donation Egg donation Respondent Yes % No % Total Yes % No % Total type Fertility patients Donors Donor conceived Parents of DCC Clinic staff Research scientists Interested members of

113 the public Other Organisations b In practice, how do you think a donor s loss of earnings should be compensated for (select a scheme for sperm donors and a scheme for egg donors)? The follow charts show the breakdown by respondent type for sperm donation: Respondent type Sperm Donation Option 1 Option 2 Option 3 A fixed amount % A variable amount % Other % Total of money that of money according (excluding is the same for to the donor s actual where no all sperm expenses answer donors chosen) Fertility patients Donors Donor conceived Parent of DCC Clinic staff Researcher Public Other Organisation The follow charts show the breakdown by respondent type for egg donation: Respondent type Egg Donation Option 1 Option 2 Option 3 A fixed amount of % A variable amount % Other % Total money that is the of money according (excluding same for all egg to the donor s actual where no donors expenses answer chosen) Fertility patients Donors Donor conceived Parent of DCC

114 Clinic staff Researcher Public Other Organisation a In principle, do you think donors should be compensated for the disruption and discomfort associated with the process of making a donation? The follow charts show the breakdown by respondent type for sperm and egg donation: Sperm donation Egg donation Respondent Yes % No % Total Yes % No % Total type Fertility patients Donors Donor conceived Parents of DCC Clinic staff Research scientists Interested members of the public Other Organisations b) In practice, how do you think a donor should be compensated for the routine disruption and discomfort associated with the process of making a donation? The follow charts show the breakdown by respondent type for sperm donation: Respondent type Fertility patients Sperm Donation Option 1 Option 2 Option 3 A fixed amount of % A variable amount % Other % Total money that is the of money according same for all to the donor s actual sperm donors disruption and discomfort experienced

115 Donors Donor conceived Parent of DCC Clinic staff Researcher Public Other Organisation The follow chart show the breakdown by respondent type for egg donation: Respondent type Egg Donation Option 1 Option 2 Option 3 A fixed amount of % A variable amount % Other % Total money that is the of money according same for all egg to the donor s actual donors disruption and discomfort experienced Fertility patients Donors Donor conceived Parent of DCC Clinic staff Researcher Public Other Organisation

116 Annex B: Breakdown of themes by each respondent type Q1b How should a donor s expenses be compensated? The following chart shows the breakdown of themes by respondent type for those who selected Option 1 - A fixed amount of money that is the same for all sperm donors and for all egg donors and provided additional text explaining their answer Respondent type Sperm Donation Theme 1 Theme 2 Theme 3 Theme 4 Misc. Total It would make the compensation process cheaper/easier to administer and clearer to donors % It would allow for reasonable compensation without acting as a incentive % A higher fixed amount should be given as an inconvenience payment % A higher fixed amount should be given to egg donors as an inconvenience payment % Misc. % Total Fertility patients 12 14% 7 8% 11 13% 48 56% 7 8% 85 Donors 4 19% 3 14% 3 14% 11 52% 0 0% 21 Donor conceived 0 0% 0 0% 0 0% 0 0% 0 0% 0 Parent of DCC 3 19% 2 13% 2 13% 7 44% 2 13% 16 Clinic staff 5 19% 1 4% 6 22% 11 41% 4 15% 27 Researcher 1 17% 2 33% 1 17% 2 33% 0 0% 6 Public 6 21% 4 14% 3 10% 12 41% 4 14% 29 Other 7 33% 2 10% 2 10% 6 29% 4 19% 21 Organisation 1 14% 0 0% 2 29% 2 29% 2 29%

117 Egg Donation Theme 1 Theme 2 Theme 3 Theme 4 Misc Total Respondent type It would make the compensation process cheaper/easier to administer and clearer to donors % It would allow for reasonable compensation without acting as a incentive % A higher fixed amount should be given as an inconvenienc e payment % A higher fixed amount should be given to egg donors as an inconvenience payment % Misc % Total Fertility patients Donors Donor conceived Parent of DCC Clinic staff Researcher Public Other Organisation 10 12% 6 7% 11 13% 50 59% 6 7% % 2 11% 3 17% 10 56% 0 0% % 0 0% 0 0% 0 0% 0 0% 0 1 8% 2 15% 1 8% 8 62% 1 8% % 1 4% 7 25% 12 43% 2 7% % 1 25% 1 25% 1 25% 0 0% % 4 15% 3 12% 10 38% 4 16% % 3 14% 2 9% 6 27% 4 19% % 0 0% 2 25% 3 38% 1 14%

118 The following charts shows the breakdown of themes by respondent type for those who selected Option 2 A variable amount of money according to the donor s actual expenses, and provided additional text explaining their reasons, for sperm and egg donation. Sperm Donation Theme 1 Theme 2 Misc Total Respondent type This is the fairest method of reimbursement % This system avoids an incentive to donate % Misc % Total Fertility patients 68 70% 18 19% 11 11% 97 Donors 19 66% 4 14% 6 21% 29 Donor conceived 7 54% 4 31% 2 15% 13 Parent of DCC 29 60% 17 35% 2 4% 48 Clinic staff 24 59% 14 34% 3 7% 41 Researcher 5 71% 2 29% 0 0% 7 Public 25 57% 12 27% 7 16% 44 Other 20 53% 13 34% 5 13% 38 Organisation 15 54% 10 36% 3 11%

119 Egg Donation Theme 1 Theme 2 Theme 3 Total Respondent type This is the fairest method of reimbursement % This system avoids an incentive to donate % Misc % Total Fertility patients 69 66% 19 18% 16 15% 104 Donors 20 69% 3 10% 6 21% 29 Donor conceived 7 50% 4 29% 3 21% 14 Parent of DCC 31 62% 16 32% 3 6% 50 Clinic staff 24 57% 13 31% 5 12% 42 Researcher 5 63% 2 25% 1 13% 8 Public 27 61% 12 27% 5 11% 44 Other 21 54% 12 31% 6 15% 39 Organisation 15 52% 10 34% 4 14%

120 The following charts shows the breakdown of themes by respondent type for those who selected Option 3 Other Respon dent type Sperm Donation Theme 1 Theme 2 Theme 3 Theme 4 Misc Total A variable amount which is capped % A variable expenses system, but a fixed sum for inconvenience % An inconvenience sum should be offered to attract sufficient donors and to adequately compensate them (especially egg donors) % Disagrees to donation/c ompensati on in principle. % Misc % Total Fertility patients 5 14% 13 35% 11 30% 1 3% 7 19% 37 Donors 0 0% 5 56% 2 22% 0 0% 2 22% 9 Donor conceiv ed 0 0% 0 0% 0 0% 1 100% 0 0% 1 Parent of DCC 3 38% 3 38% 2 25% 0 0% 0 0% 8 Clinic staff 2 25% 3 38% 1 13% 0 0% 2 25% 8 Researc 100 her 0 0% 1 % 0 0% 0 0% 0 0% 1 Public 1 6% 6 38% 3 19% 5 31% 1 6% 16 Other 4 27% 2 13% 3 20% 2 13% 4 27% 15 Organis ation 3 43% 0 0% 1 14% 2 29% 1 14%

121 Respondent type Fertility patients Donors Donor conceived Parent of DCC Clinic staff Researcher Public Other Organisation Egg Donation Theme 1 Theme 2 Theme 3 Theme 4 Misc Total A variable amount which is capped % A variable expenses system, but a fixed sum for inconvenien ce % An inconvenience sum should be offered to attract sufficient donors and to adequately compensate them (especially egg donors) % Disagrees to donation/co mpensation in principle. % Misc % Total 3 7% 14 32% 15 34% 1 2% 11 25% % 6 35% 6 35% 0 0% 5 29% % 0 0% 0 0% 1 100% 0 0% % 2 22% 3 33% 0 0% 3 33% % 3 30% 0 0% 0 0% 5 50% % 1 50% 1 50% 0 0% 0 0% 2 2 8% 9 38% 6 25% 5 21% 2 8% % 2 18% 3 27% 2 18% 2 18% % 0 0% 0 0% 2 67% 0 0%

122 1c Should donors be compensated for expenses they incur outside the UK The following charts show the breakdown of themes by respondent type for those who selected Option 1 Yes, sperm and/or egg donors should be compensated for expenses they incur outside the UK and provided additional text explaining their answer: Respondent type Sperm Donation Theme 1 Theme 2 Theme 3 Misc Total Foreign donors should be compensated in the same way as UK ones % We should import donors, but only as a last resort/with caution % Importing donors is not a problem/could even help with ethnic matching % Misc % Total Fertility patients 33 49% 7 10% 17 25% 10 15% 67 Donors 13 87% 0 0% 1 7% 1 7% 15 Donor conceived 3 60% 0 0% 2 40% 0 0% 5 Parent of DCC 15 68% 3 14% 3 14% 1 5% 22 Clinic staff 6 60% 1 10% 3 30% 0 0% 10 Researcher 100 % 0 0% 0 0% 0 0% 2 2 Public 11 58% 3 16% 2 11% 3 16% 19 Other 6 50% 2 17% 1 8% 3 25% 12 Organisation 4 67% 1 17% 0 0% 1 17%

123 Respondent type Egg Donation Theme 1 Theme 2 Theme 3 Misc Total Foreign donors should be compensated in the same way as UK ones % We should import donors, but only as a last resort/with caution % Importing donors is not a problem/could even help with ethnic matching % Misc % Total Fertility patients 35 49% 8 11% 18 25% 10 14% 71 Donors 13 87% 1 7% 0 0% 1 7% 15 Donor conceived 3 60% 0 0% 2 40% 0 0% 5 Parent of DCC 18 72% 3 12% 3 12% 1 4% 25 Clinic staff 6 55% 1 9% 3 27% 1 9% 11 Researcher 100 % 0 0% 0 0% 0 0% 2 2 Public 12 60% 3 15% 2 10% 3 15% 20 Other 9 64% 2 14% 1 7% 2 14% 14 Organisation 5 71% 1 14% 0 0% 1 14%

124 Resp. type The following charts show the breakdown of themes by respondent type for those who selected Option 2 No, sperm and/or egg donors should be compensated for expenses they incur outside the UK and provided additional text explaining their answer: Sperm Donation Theme 1 Theme 2 Theme 3 Theme 4 Theme 5 Theme 6 Misc Total Feel uneasy % Increase UK % Concerne % Not in the % Gametes % Disagrees to % Misc % Total about/am donors d about interests of should be donation/co opposed instead by exploiting the donor imported mpensation to/concerned offering better or conceived instead of in principle. about the cost of compensation financially person: donors using foreign or inducing foreign donors, inconvenienc donors donors won t increase UK e payments be easily donors instead contactable Fertility patients 47 53% 6 7% 14 16% 5 6% 11 12% 1 1% 5 6% 89 Donors 15 65% 2 9% 2 9% 0 0% 0 0% 0 0% 4 17% 23 Donor conceive d 4 67% 0 0% 0 0% 0 0% 1 17% 1 17% 0 0% 6 Parent of 16 DCC 15 39% 3 8% 9 24% 6 % 4 11% 0 0% 1 3% 38 Clinic staff 25 54% 2 4% 8 17% 2 4% 5 11% 0 0% 4 9% 46 Research er 3 38% 0 0% 4 50% 0 0% 1 13% 0 0% 0 0% 8 Public 32 56% 2 4% 11 19% 2 4% 1 2% 7 12% 2 4% 57 Other 19 48% 2 5% 12 30% 0 0% 3 8% 1 3% 3 8% 40 Orgs % 0 0% 5 23% 0 0% 3 14% 1 5% 2 9%

125 Resp. type Egg Donation Theme 1 Theme 2 Theme 3 Theme 4 Theme 5 Theme 6 Misc Total Feel % Increase UK % Concerned % Not in the % Gametes % Disagrees % Misc % Total uneasy donors about interests should be to about/am instead by exploiting or of the imported donation/c opposed offering better financially donor instead of ompensati to/concerne compensatio inducing conceive donors on in d about the n or donors d person: principle. cost of inconvenienc foreign using e payments donors foreign won t be donors, easily increase contactab UK donors le Fertility patients 47 53% 4 5% 17 19% 5 6% 9 10% 1 1% 5 6% 88 Donors 15 65% 2 9% 2 9% 0 0% 0 0% 0 0% 4 17% 23 Donor conceiv ed 4 67% 0 0% 0 0% 0 0% 1 17% 1 17% 0 0% 6 Parent of DCC 15 41% 1 3% 12 32% 6 16% 2 5% 0 0% 1 3% 37 Clinic staff 24 52% 2 4% 9 20% 2 4% 5 11% 0 0% 4 9% 46 Researc her 3 38% 0 0% 4 50% 0 0% 1 13% 0 0% 0 0% 8 Public 32 56% 2 4% 11 19% 2 4% 1 2% 6 11% 3 5% 57 Other 19 48% 2 5% 13 33% 0 0% 2 5% 1 3% 3 8% 40 Orgs % 0 0% 6 26% 0 0% 3 13% 1 4% 2 9%

126 Resp. type Q2b How should a donor s loss of earnings be compensated The following charts show the breakdown of themes by respondent type for those who selected Option 1 - A fixed amount of money that is the same for all sperm donors and for all egg donors and provided additional text explaining their answer Sperm Donation Theme 1 Theme 2 Theme 3 Theme 4 Theme 5 Theme 6 To motivate people to donate/remov e barriers to donation % All donors should receive the same lump sum irrespective of their earnings as this is fair % Lump sum is simple/eas y to administer % The amount should reflect the time and effort required % Sperm donors experience less disruption and discomfort than egg donors smaller fixed amount for sperm donors Total % Misc % Total Fertility patients 1 3% 8 21% 6 16% 6 16% 11 29% 6 16% 38 Donors 1 14% 2 29% 2 29% 1 14% 1 14% 0 0% 7 Donor conceived 0 0% % 0 0% 0 0% 0 0% 0 0% 1 Parent of DCC 0 0% 3 30% 3 30% 1 10% 3 30% 0 0% 10 Clinic staff 3 25% 1 8% 0 0% 3 25% 1 8% 4 33% 12 Researche r 0 0% 1 50% 0 0% 0 0% 1 50% 0 0% 2 Public 2 18% 4 36% 0 0% 1 9% 3 27% 1 9% 11 Other 1 13% 3 38% 1 13% 0 0% 3 38% 0 0% 8 Org. 1 50% 1 50% 0 0% 0 0% 0 0% 0 0%

127 Resp. type Egg Donation Theme 1 Theme 2 Theme 3 Theme 4 Theme 5 Theme 6 To motivate people to donate/rem ove barriers to donation % All donors should receive the same lump sum irrespective of their earnings as this is fair % Lump sum is simple/eas y to administer % The amount should reflect the time and effort required % Sperm donors experience less disruption and discomfort than egg donors smaller fixed amount for sperm donors Total % Misc % Total Fertility patients 2 5% 10 24% 7 17 % 6 15 % 11 27% 5 12% 41 Donors % 2 25% 2 % 2 % 1 13% 0 0% 8 Donor conceived 0 0% % 0 0% 0 0% 0 0% 0 0% 1 Parent of DCC 1 7% 4 29% 4 % 2 % 2 14% 1 7% 14 Clinic staff % 1 8% 0 0% 3 % 1 8% 4 33% 12 Researcher 0 0% 1 50% 0 0% 0 0% 1 50% 0 0% 2 Public 15 2 % 4 31% 0 0% 1 8% 3 23% 3 23% 13 Other % 3 38% 1 % 0 0% 2 25% 0 0% 8 Organisati on 1 50 % 1 50% 0 0% 0 0% 0 0% 0 0% 2

128 The following charts show the breakdown of themes by respondent type for those who selected Option 2 A variable amount of money according to the donor s actual earnings lost and provided additional text explaining their answer Sperm Donation Theme 1 Theme 2 Theme 3 Misc Total Respondent type Donors should not be out of pocket as a result of donating. % This will better reflect the time and effort required/this is a fair system % A fixed amount may incentivise some people to donate / a variable system would keep it altruistic with a CAP to ensure person not better off % Misc % Total Fertility patients 41 56% 18 25% 10 14% 4 5% 73 Donors 10 59% 4 24% 2 12% 1 6% 17 Donor conceived 3 75% 1 25% 0 0% 0 0% 4 Parent of DCC 14 56% 4 16% 6 24% 1 4% 25 Clinic staff 15 58% 3 12% 6 23% 2 8% 26 Researcher 4 80% 0 0% 1 20% 0 0% 5 Public % 4 14% 7 25% 3 % 28 Other % 1 4% 6 24% 7 % 25 Organisation % 0 0% 2 13% 6 %

129 Egg Donation Respondent type Theme 1 Theme 2 Theme 3 Theme 4 Donors should not be out of pocket as a result of donating. % This will better reflect the time and effort required/this is a fair system % A fixed amount may incentivise some people to donate / a variable system would keep it altruistic with a CAP to ensure person not better off Total % Misc % Total Fertility patients 38 42% 21 23% 11 12% 20 22% 90 Donors 10 48% 4 19% 2 10% 5 24% 21 Donor conceived 3 60% 1 20% 0 0% 1 20% 5 Parent of DCC 16 55% 3 10% 6 21% 4 14% 29 Clinic staff 15 58% 3 12% 5 19% 3 12% 26 Researcher 4 80% 0 0% 0 0% 1 20% 5 Public 15 50% 5 17% 7 23% 3 10% 30 Other 11 44% 1 4% 6 24% 7 28% 25 Organisation 7 47% 0 0% 2 13% 6 40%

130 The following charts show the breakdown of themes by respondent type for those who selected Option 3 Other and provided additional text explaining their answer Respondent type Sperm Donation Theme 1 Theme 2 Theme 3 No financial gain should be available % Allow variable and/or fixed payment but with a cap, or at a set hourly rate, per visit Total % Misc % Total Fertility patients 3 14% 12 57% 6 29% 21 Donors 0 0% 2 50% 2 50% 4 Donor 100 conceived 0 0% 1 % 0 0% 1 Parent of DCC 2 20% 6 60% 2 20% 10 Clinic staff 1 11% 7 78% 1 11% 9 Researcher % 1 % 0 0% 1 Public 3 19% 11 69% 2 13% 16 Other 5 31% 6 38% 5 31% 16 Organisation 3 27% 5 45% 3 27%

131 Respondent type Egg Donation Theme 1 Theme 2 Theme 3 No financial gain should be available % Allow variable and/or fixed payment but with a cap, or at a set hourly rate, per visit Total % Misc % Total Fertility patients 2 11% 11 61% 5 28% 18 Donors 0 0% 2 50% 2 50% 4 Donor 100 conceived 0 0% 2 % 0 0% 2 Parent of DCC 2 22% 6 67% 1 11% 9 Clinic staff 1 11% 7 78% 1 11% 9 Researcher % 1 % 0 0% 1 Public 3 17% 12 67% 3 17% 18 Other 4 29% 6 43% 4 29% 14 Organisation 3 27% 5 45% 3 27%

132 3b How should a donor be compensated for the routine disruption and discomfort associated with the process of making a donation? The following charts show the breakdown of themes by respondent type for those who selected Option 1 A fixed amount of money that is the same for all sperm donors and provided additional text explaining their answer Sperm Donation Theme 1 Theme 2 Theme 3 Total Respondent type The inconvenience of donation should be recognised, but donors should not be financially incentivised to donate % Sperm donors experience less disruption and discomfort than egg donors therefore should receive smaller fixed amounts % Donation is invasive/time intensive/risky and that should be recognised/rewarded/ this would also attract more donors % Misc. % Total Fertility patients 14 18% 34 45% 15 20% 13 17% 76 Donors 4 20% 5 25% 8 40% 3 15% 20 Donor conceived 0 0% 1 50% 0 0% 1 50% 2 Parent of DCC 4 22% 7 39% 2 11% 5 28% 18 Clinic staff 4 27% 4 27% 2 13% 5 33% 15 Researcher 1 50% 1 50% 0 0% 0 0% 2 Public 3 20% 6 40% 5 33% 1 7% 15 Other 0 0% 7 47% 4 27% 4 27% 15 Org. 0 0% 0 0% 0 0% 4 100%

133 Responden t type Egg Donation Theme 1 Theme 2 Theme 3 Total The inconvenience of donation should be recognised, but donors should not be financially incentivised to donate % Sperm donors experience less disruption and discomfort than egg donors therefore should receive smaller fixed amounts % Donation is invasive/time intensive/risky and that should be recognised/rewarded/ this would also attract more donors % Mis c % Total Fertility patients 16 15% 37 34% 41 38% 15 14% 109 Donors 4 16% 5 20% 13 52% 3 12% 25 Donor conceived 0 0% 1 50% 0 0% 1 50% 2 Parent of DCC 4 13% 11 34% 10 31% 7 22% 32 Clinic staff 3 13% 7 30% 7 30% 6 26% 23 Researcher 1 33% 1 33% 0 0% 1 33% 3 Public 3 19% 5 31% 7 44% 1 6% 16 Other 1 6% 6 38% 6 38% 3 19% 16 Org. 0 0% 0 0% 0 0% 0 0%

134 The following charts show the breakdown of themes by respondent type for those who selected Option 2 A variable amount of money according to the donor s actual disruption and discomfort experienced and provided additional text explaining their answer Sperm Donation Theme 1 Theme 2 Theme 3 Theme 4 Theme 5 Total Responden t type The inconvenience of donation should be recognised, but donors should not be financially incentivised to donate % Donation is invasive/time intensive/risky and that should be recognised/re warded % To allow adequate compensatio n for time % To recognise it is easier to donate sperm than eggs % Actual inconvenienc e will vary from person to person % Misc. % Total Fertility patients 2 17% 1 8% 0 0% 1 8% 3 25% 5 42% 12 Donors % 0 0% 1 % 0 0% 0 0% 0 0% 1 Donor conceived 0 0% 0 0% 1 50% 0 0% 1 50% 0 0% 2 Parent of 11 DCC 2 22% 1 % 1 11% 0 0% 3 33% 2 22% 9 Clinic staff 3 21% 1 7% 2 14% 1 7% 3 21% 4 29% 14 Researcher 0 0% 0 0% 0 0% 0 0% 0 0% 0 0% 0 Public % 1 % 0 0% 0 0% 2 40% 2 40% 5 Other 0 0% 0 0% 0 0% 0 0% 1 33% 2 67% 3 Org. 0 0% 0 0% 0 0% 1 33% 0 0% 2 67%

135 Respondent type Egg Donation Theme 1 Theme 2 Theme 3 Theme 4 Theme 5 Total The inconvenience of donation should be recognised, but donors should not be financially incentivised to donate % Donation is invasive/time intensive/risky and that should be recognised/ rewarded % To allow adequate compensatio n for time % To recognise % Actual it is easier to donate sperm than eggs inconvenienc e will vary from person to person % Mis c % Total Fertility patients 2 7% 9 32% 0 0% 7 25% 3 11% 7 25% 28 Donors 1 14% 1 14% 2 29% 1 14% 0 0% 2 29% 7 Donor conceived 0 0% 0 0% 0 0% 1 50% 1 50% 0 0% 2 Parent of DCC 2 17% 3 25% 1 8% 0 0% 3 25% 3 25% 12 Clinic staff 3 21% 3 21% 2 14% 0 0% 3 21% 3 21% 14 Researcher 0 0% 1 50% 0 0% 1 50% 0 0% 0 0% 2 Public 1 6% 6 35% 0 0% 3 18% 3 18% 4 24% 17 Other 0 0% 3 33% 0 0% 2 22% 1 11% 3 33% 9 Organisation 0 0% 0 0% 0 0% 0 0% 0 0% 0 0%

136 Respondent type The following charts show the breakdown of themes by respondent type for those who selected Option 3 Other and provided additional text explaining their answer Sperm Donation Theme 1 Theme 2 Theme 3 Theme 4 Theme 5 Theme 6 The % Donation is % There % Sperm % Disagree % Disagree inconvenienc invasive/time should be a donors s with in e of donation intensive/risk lump sum should incentive principle should be y and that for receive s to to recognised, should be expenses, less than donate donation but donors recognised/r loss of egg /compen should not be ewarded earnings donors sation financially and because incentivised inconvenien the to donate ce process is less invasive Misc. Tota l % Tota l Fertility patients 3 9% 5 14% 8 23% 4 11% 1 3% 7 20% 7 20% 35 Donors 2 17% 0 0% 4 33% 2 17% 0 0% 0 0% 4 33% 12 Donor conceived 0 0% 0 0% 1 50% 0 0% 0 0% 1 50% 0 0% 2 Parent of DCC 1 11% 1 11% 1 11% 0 0% 2 22% 3 33% 1 11% 9 Clinic staff 0 0% 2 15% 4 31% 2 15% 1 8% 2 15% 2 15% 13 Researcher 1 33% 1 33% 0 0% 0 0% 0 0% 0 0% 1 33% 3 Public 0 0% 0 0% 5 31% 0 0% 2 13% 6 38% 3 19% 16 Other 3 19% 0 0% 5 31% 1 6% 1 6% 2 13% 4 25% 16 Orgs 0 0% 0 0% 0 0% 0 0% 0 0% 0 0% 0 0%

137 Responden t type Egg Donation Theme 1 Theme 2 Theme 3 Theme 4 Theme 5 Theme 6 The inconvenienc e of donation should be recognised, but donors should not be financially incentivised to donate % Donation is invasive/ti me intensive/ri sky and that should be recognised/ rewarded % There should be a lump sum for expenses, loss of earnings and inconvenienc e % Sperm donors should receive less than egg donors because the process is less invasive % Disagrees with incentives to donate % Disagre e in principle to donatio n /compe nsation % Misc. Total % Total Fertility patients 2 5% 7 18 % % 4 10% 2 5% 1 3% % 39 Donors % 1 % 3 % 1 11% 0 0% 0 0% 3 % 9 Donor 50 conceived 0 0% 1 % 0 0% 0 0% 0 0% 1 50% 0 0% 2 Parent of DCC 1 7% 1 7% 3 % 1 7% 3 20% 3 20% 3 % 15 Clinic staff % 4 % 4 % 0 0% 1 10% 0 0% 1 % 10 Researcher % 1 % 0 0% 0 0% 0 0% 0 0% 0 0% 2 Public % 2 % 5 % 1 6% 2 13% 2 13% 3 % 16 Other % 1 7% 5 % 2 13% 0 0% 0 0% 4 % 15 Org. 0 0% 0 0% 0 0% 0 0% 0 0% 0 0% 0 0% 0%

138 Annex D: Benefits in kind questionnaire report Donating sperm and eggs: Have your say Benefits in kind questionnaire report Review process In 2009 we undertook an evaluation of our policies around compensation, reimbursement and benefits in kind. Some believe egg sharing represents an unacceptable inducement to donate and is no different to paying donors, others see it as a pragmatic solution to both improved access to treatment and donor gametes. The existing evidence seems to suggest that egg sharing has not had a negative impact on donors or recipients, although the evidence is limited. On the basis of the information gathered, the Authority agreed consultation options in December Overview of issues What is egg sharing? Women donating eggs in an egg sharing arrangement undergo the same procedures and are subject to the same requirements as egg donors. Some of the eggs collected from the egg sharer are used for her treatment and some are donated for use in another woman s (or sometimes for two women s) treatment. The egg sharer and the egg recipient do not meet each other. Many clinics insist that eggs sharers have counselling to ensure that they have considered the implications; including the possibility that the recipient may become pregnant and have a child, but they may not. What is sperm sharing? Sperm sharing schemes are offered by some clinics. Couples can get a reduction in treatment costs, or are moved up the waiting list, in return for the male partner (or another person they provide as a donor) donating their sperm. What is freeze sharing? Freeze sharing schemes have become available at a small number of clinics more recently, allowing women to store their eggs for future treatment (free for about 5 years) in exchange for donating some of these eggs. Other permutations of benefits include treatment prioritisation in exchange for the donation of gametes and embryos. HFEA current guidance We allow egg or sperm sharing, which is a benefits in kind system. We currently provide centres with detailed guidance on egg sharing. However, we do not provide specific guidance to centres on sperm sharing or other permutations of benefits in kind. The public consultation

139 The consultation questionnaire sought views on whether donors be offered benefits in kind for their donation and whether the value of benefits in kind should be limited. Respondents were asked to respond separately for sperm and egg donation but were not obliged to provide an answer for both; therefore the number of responses differ for sperm and egg donation. A summary of the quantitative and qualitative analysis methodology can be found at Annex A. 644 people responded to the questionnaire on benefits in kind. A breakdown of respondent type is provided below. As respondents were able to place themselves in more than one category, the total respondent types is greater than the total number of respondents. Figure 1 shows the breakdown as a percentage of a total of 781 respondents who answered questions for sperm and eggs. Organisations 5% Other 10% Patient 30% Public 20% Researcher 2% Clinic staff 11% Parent of DCC 10% Donor 9% DC 3% Figure 1: Breakdown of respondents answering this questionnaire Benefits in kind Should donors be offered benefits in kind for their donation? We asked whether, in principle, should donors be offered benefits in kind for their donation. Respondents were asked to choose from the following options: Sperm donors Yes/No Egg donors Yes/No Figure 2 shows the proportion of respondents who chose each option, in each case over half of respondents were in favour in principle of benefits in kind:

140 Figure 2: Percentage of respondents who agree or disagree, in principle, with donors being offered benefits in kind for their donation. Yes, in principle donors should be offered benefits in kind for their donation People were not obliged to answer for both sperm and egg donors; therefore 352 (55%) of respondents selected this option for sperm donors and 385 (60%) selected this option for egg donors. Figure 3 provides a breakdown of respondent type for this option. The breakdown of responses was similar* for sperm and egg donors. Figure 3: Breakdown of respondents who agreed in principle with donors receiving benefits in kind for their donation. For egg donors 10% of the people giving this answer were donors and 12% clinic staff selected this option

141 No, in principle donors should not be offered benefits in kind for their donation People were not obliged to answer for both sperm and egg donors; therefore 292 (45%) of respondents selected this option for sperm donors and 259 (40%) selected this option for egg donors. The following pie chart provides a breakdown of respondent type for this option. The breakdown of responses was similar* for sperm and egg donors. Figure 4: Breakdown of respondents who disagreed in principle with donors receiving benefits in kind for their donation. For egg donors 17% of patients, 10% parents of DCC, 9% clinic staff, 32% public and 13% other selected this option. What should benefits in kind include? We asked what in practice, should benefits in kind include. Respondents were able to select more than one option if necessary and were asked to select a scheme for sperm and a scheme for egg donors from the following options: Reduced waiting time for treatment Reduced price or free fertility treatment Reduced price or free storage of sperm Other (please specify) People were not obliged to answer for both sperm and egg donors; therefore 373 people responses were received for sperm donors and 401 received for egg donors. Figure 5 shows the percentage of respondents from a total of 457 who responded for sperm donors and 488 who responded for egg donors as some people fell into more than one category of respondent type. The breakdown was similar* for sperm and egg donors

142 Figure 5: Breakdown of respondents answering the question what in practice should benefits in kind include. For egg donors, 38% of patients and 12% clinic staff responded to this question, Figure 6 shows the proportion of respondents who chose each option for sperm and egg donors. Respondents could give more than one answer, and many did. Overall, the most popular options were reduced price or free treatment, or reduced price or free storage. Figure 6: percentage of respondents who chose each option answering the question what in practice should benefits in kind include Figure 7 shows the percentage of respondents who chose more than one option:

143 Figure 7: percentage of respondents who chose more than one option when answering the question what in practice should benefits in kind include Just over half of the people who gave their views on what benefits in kind should include provided additional text explaining the reasons for their preference. An overview of the different views expressed by respondents is documented below. Of the, 292 who answered no in principle for sperm donors and 259 for egg donors, 21 and 16, respectively, gave their views on what, in practice, benefits in kind should include. These responses are included in the analysis below. Option 1 - Reduced waiting time for treatment 59% of respondents in favour of at least one practical method, were in favour of reduced waiting time for treatment for sperm donors; for egg donors the percentage was 61%. Figure 8 illustrates the breakdown of respondent type who chose option one for sperm and egg donors

144 Figure 8: breakdown of respondent type who chose option one, reduced waiting time for treatment Reasons for answers Almost half of the people who selected this option for sperm or egg donors, provided additional text explaining the reasons for the preference. Of those who gave reasons for their view that option 1 should be implemented, the following themes were identified: 1. To encourage donation, increases availability of donor gametes and helps patients access treatment faster 2. Donors should be rewarded because donation is a kind, generous act 3. Patients are able to help other patients. Amongst patients there is a sense of solidarity from their shared experiences. M Miscellaneous (no theme identified) Figure 9 for sperm donation and figure 10 for egg donation shows how many responses fell into the above themes (please note, some answers fell into more than one theme):

145 Figure 9: Count of responses which fell into the above themes for option 1 reduced waiting time for sperm donation Figure 10: Count of responses which fell into the above themes for option 1 reduced waiting time for egg donation Theme 1- To encourage donation, increases availability of donor gametes and helps patients access treatment faster The following quotes demonstrate a selection of respondent s views. People who donate may of donated because they know what it is like to go through fertility treatment. An incentive to help people who need or may need fertility treatment may increase the number of donors. fertility patient This is another win win situation - why should it be restricted. Anything that helps people achieve their dreams of having a family should be pursued. I feel very lucky

146 that I could afford fertility treatment but I don't see why less well paid people should be punished. fertility patient and parent of a donor conceived person I do not think it should involve money but as a good will gesture they could get their own treatment sooner. other - fertility HCA Theme 2 - Donors should be rewarded because donation is a kind, generous act The following quotes demonstrate a selection of respondent s views. If people are prepared to put into the system, then if they also require the assistance of the system, then they should be rewarded (non-financially) for their reciprocation. donor Altruistic donors receiving treatment themselves should be allowed a little advantage - but not too big, otherwise people might be tempted to take this route as a bargain way to get a discount rather than as a genuine donation. fertility patient People who are willing to share their gametes are providing an incredible gift to desperate couples, and I see nothing wrong in them receiving a benefit for doing so. I paid quite a bit extra for my IVF using donated eggs from an anonymous egg sharer - it meant I only had to wait 7 or 8 months for treatment as opposed to several years (which I couldn't afford to do as I was already 44) and my egg sharer and her husband could afford to be treated because the cost to them was reduced. I call that a win-win situation. fertility patient and parent of a donor conceived person Theme 3 - Patients are able to help other patients. Amongst patients there is a sense of solidarity from their shared experiences. The following quotes demonstrate a selection of respondent s views. This is already happening in most Fertility clinics in the UK as far as I know. It is a really positive way that a woman who is in need of IVF herself can help another woman to have a baby and at the same time help to reduce her costs. fertility patient This would help reduce the waiting lists, with recipients being helped by others who understood their situation. fertility patient Egg-sharing and sperm-sharing are a good way to reduce waiting times for gamete donation by enabling the infertile community to potentially help each other. fertility patient and parent of a donor conceived person M Miscellaneous (no theme identified) Currently, offering free or cut-price treatment for egg donors is too great an incentive to egg share, at a point when a woman might be so desperate to conceive that she is willing to consider options that at another time in her life she would not have considered, and which she might later regret. It is the equivalent of offering compensation of say 5000 for donating, which would far outweigh other motivational factors, e.g. altruism. Reduced waiting time for treatment makes practical sense, as the woman or man would be giving up their time to donate

147 anyway, so a delay would not make practical sense. Free storage of eggs or sperm would also be a practical solution, as the donor could then choose if necessary at a later date how many more of their gametes they wished to donate, e.g. after they had completed their own families. fertility patient and parent of a donor conceived person Should be various choices available to suit the needs of the individual. interested member of the public Option 2 - Reduced price or free fertility treatment 80% of respondents in favour of at least one practical method, were in favour of reduced price or free fertility treatment for sperm donors; for egg donors the percentage was 86%. Figure 11 shows the breakdown of respondent type who chose option two for sperm and egg donors. Figure 11: breakdown of respondent type who chose option two, reduced or free fertility treatment Reasons for answers About four out of ten of the people who selected this option provided additional text explaining the reasons for the preference. Of those who gave reasons for their view that option 2 should be implemented, the following themes were identified: 1. To encourage donation and increase availability of donor gametes 2. Donors should be rewarded because donation is a kind, generous act 3. Enables patients to have treatment who otherwise couldn t afford it; and prevents patients from seeking treatment abroad. 4. Patients are able to help other patients. Amongst patients there is a sense of solidarity from their shared experiences

148 M Miscellaneous (no theme identified) Figure 12 for sperm donation and figure 13 for egg donation shows how many responses fell into the above themes (please note, some answers fell into more than one theme): Figure 12: Count of responses which fell into the above themes for option 2 reduced or free fertility treatment for sperm donation Figure 13: Count of responses which fell into the above themes for option 2 reduced or free fertility treatment for egg donation Theme 1- To encourage donation and increase availability of donor gametes The following quotes demonstrate a selection of respondent s views. Giving a reduced price for fertility treatment in return to donation would increase donors. People in treatment are a great source of donors. They more than anyone understand the benefits of donation and cheaper treatment in return will increase treatment attempts for people who are finding it expensive given that the NHS is either restricting IVF to one round or withdrawing funding. fertility patient

149 Anything that can be done to encourage donors - sperm or egg - should be done. There are not nearly enough of either in this country and that means that couples are being forced to travel abroad. My main reason for going abroad was not the price it was the waiting time - and this is directly as a result of there not being enough egg donors in this country (I was told it was a minimum two and a half year wait!) fertility patient Instead of compensation being paid, reduced priced treatment etc is a great incentive to donate as in egg share/ sperm share schemes fertility patient and donor Theme 2 - Donors should be rewarded because donation is a kind, generous act The following quotes demonstrate a selection of respondent s views. To show appreciation for their selfless contribution to other peoples happiness. Regarding treatment. The chances are small that a donor who's obviously fertile will ever need treatment themselves. If they do because of their partners situation, there should be no costs. donor People who are willing to share their gametes are providing an incredible gift to desperate couples, and I see nothing wrong in them receiving a benefit for doing so. I paid quite a bit extra for my IVF using donated eggs from an anonymous egg sharer - it meant I only had to wait 7 or 8 months for treatment as opposed to several years (which I couldn't afford to do as I was already 44) and my egg sharer and her husband could afford to be treated because the cost to them was reduced. I call that a win-win situation. fertility patient and parent of a donor conceived person Since they are benefiting the clinic they are donating to there needs to be pay back for them since the clinic will be making money from a recipient. fertility patient Theme 3 - Enables patients to have treatment who otherwise couldn t afford it; and prevents patients from seeking treatment abroad. The following quotes demonstrate a selection of respondent s views. I think sperm and egg sharing is a really great idea and plan to do it myself for our second baby as I cannot possibly afford full IVF and donated sperm! Whilst the financial aspect is an incentive, I want to help others as weve been helped and it kills two birds with one stone so to speak as I get to help others whilst I'm doing IVF anyway and get it cheaper. fertility patient and parent of a donor conceived person Although I have some concerns about the decision process especially about egg donation at an emotional and pressurised time, gamete sharing allows many families who would not otherwise be able to afford treatment to access it. fertility counsellor and parent of a donor conceived person This is already being performed with egg sharing and sperm sharing, removing this will increase the need for cross border reproductive care. All of these startegies will contribute and be effective. Any strategy which achieves pregnancies faster and cheaper will be useful. fertility doctor

150 Theme 4 - Patients are able to help other patients. Amongst patients there is a sense of solidarity from their shared experiences. The following quotes demonstrate a selection of respondent s views. I think that sharing the treatment with other couples in similar circumstances is justified. As someone who has benefited from an egg sharing scheme I know that to some extent the altruistic element of egg sharing can be reciprocal. Being given the opportunity to help another couple access IVF was an important factor for us. parent of a donor conceived person Egg sharing schemes seem to me to work quite well. The recipient can feel quite good about being able to pay for the donor's treatment - at least we can help them in some way. parent of a donor conceived person Miscellaneous (no theme identified) Egg donors already receive reduced price or free fertility treatment in some clinics so I think that this practice should be allowed to continue interested member of the public egg donors should receive more benfit that sperm donors due to the physical requirements of donating. interested member of the public This is a pragmatic position in the current system of shortages. I am not altogether happy with the principle which might border on inducement and co-ercion for poorer couples. On the other hand, not offering this option would effectively disadvantage those without the means to pay. social science researcher Option 3 - Reduced price or free storage 74% of respondents in favour of at least one practical method, were in favour of reduced price or free fertility treatment for sperm and egg donors. Figure 14 illustrates the breakdown of respondent type who chose option two for sperm and egg donors. Figure 14: breakdown of respondent type who chose option three, reduced or free storage Reasons for answers

151 Around half of the people who selected this option provided additional text explaining the reasons for the preference. Of those who gave reasons for their view that option 3 should be implemented, the following themes were identified: 1. To encourage donation and increase availability of donor gametes 2. Donors should be rewarded because donation is a kind, generous act 3. Enables patients to store who otherwise couldn t afford it 4. Patients are able to help other patients. Amongst patients there is a sense of solidarity from their shared experiences. M Miscellaneous (no theme identified) Figure 15 for sperm donation and figure 16 for egg donation shows how many responses fell into the above themes (please note, some answers fell into more than one theme): Figure 15: Count of responses which fell into the above themes for option 3 reduced or free storage for sperm donation Figure16: Count of responses which fell into the above themes for option 3 reduced or free storage for egg donation

152 Theme 1- To encourage donation and increase availability of donor gametes The following quotes demonstrate a selection of respondent s views. to encourage donors reduced fertility costs is already a proven incentive, free storage of eggs and sperm would encourage those not already having fertility problems / treatment to donate and may help reduce the average age of donors. Reduced waiting time might negatively affect those already waiting for donation treatment and increase the number of individuals requiring donor eggs due to delays in their treatments. fertility patient A flat fee and the above benefits seem fair. Particularly free storage of eggs for women will prompt, I am absolutely sure, a surge in donors. I certainly would have done this myself at age 30 (I am now 41, with no children and about to undergo IVF), as an insurance policy for the future to guarantee I could have my own children when I wanted. fertility patient Theme 2 - Donors should be rewarded because donation is a kind, generous act The following quotes demonstrate a selection of respondent s views. They have given some gametes to help other individuals, it is only fair that they are allowed to store their own gametes so that if they wish to start a family some day and they experience fertility problems, they should be helped as a reward for their altruism. interested member of the public If you're willing to donate eggs (which many people have moral problems with) I think it'd be logical to also benefit from that process by being able to store your own eggs. interested member of the public I don't believe donors should receive a reduction in waiting time as this may encourage people to do it for the wrong reasons, whereas a reduction in price for treatment or storage is more meaningful & beneficial to these individuals or should be. However there may be some people who donate who aren't actually having any treatment themselves, so this would be irrelevant to them. fertility patient Theme 3 - Enables patients to store who otherwise couldn t afford it The following quotes demonstrate a selection of respondent s views. this would help people who might otherwise not be able to afford the treatment they need - but being in need of treatment themselves gives a better understanding of the responsibilities of donating. All this should be discussed with a counsellor who is not making decisions about the treatment or donation, to enable open and free consideration of the implications of donation, together with any existing partner. This counselling must be free and a routine part of donation. fertility counsellor It seems to me that current motivation for donation is either good heart (as you may have a family member that suffered from infertility), or the fact that you may get lower fees on your own fertility treatment. Given how prohibitive some of the fees are, it seems that kids might really be luxury of the high middle class earners, and I think it

153 shouldn't be so. hence, yes, I strongly agree that donating sperm or eggs should be compensated in kind, by making fertility treatments more accessible. Future fertility patient Theme 4 Patients are able to help other patients. Amongst patients there is a sense of solidarity from their shared experiences. The following quotes demonstrate a selection of respondent s views. It would be nice if enough people considered the needs of others when they or their partner is undergoing treatment to ensure sufficient donors. Unfortunately as this is not the case an incentive scheme to help potential donors who understand more about the issues aroud fertility treatment actually donate is a great idea. fertility patient and donor Basically because they can be doing an altruistic act and the least inconvenice should be rewarded. If they are receiving treatment themselves they are also helping someone else. fertility counsellor Miscellaneous (no theme identified) This is in effect payment by a different route. fertility patient I struggled with the wording this question. I believe that clinics OUGHT TO BE ABLE to offer these (and other) types of "benefits in kind" in order to attract donors. This is purely a commercial consideration, PROVIDED THAT the benefits offered are commensurate with the gift (eg a free IVF cycle for one sperm sample would clearly NOT be a reasonable or proportionate benefit in kind). In addition, the 250 limit (as for expenses and loss of earnings) should be borne in mind in any "commercial" offers of benefits in kind. Whilst clinics ought to be able to offer such benefits, there should be no obligation on clinics to do so; and the donor should not be put under pressure or otherwise encouraged to accept such benefits if they do not wish to do so. fertility patient and parent of a donor conceived person Option 4 Other 7% of respondents selected other when responding to in practice, what should benefits in kind include for sperm and egg donors. Figure 17 illustrates the breakdown of respondent type who chose other for sperm and egg donors (% of total respondents)

154 Figure 17: breakdown of respondent type who chose option 4 - other Reasons for answers All respondents who selected this option provided additional text explaining the reasons for the preference. Of those who gave reasons for their view that option 1 should be implemented, the following themes were identified: 1. To encourage donation/may increase donor numbers/need for gametes 2. Reduce to cost/free treatment of another kind 3. Disagrees to all benefits, (coercion, donation for the wrong reason, non-egg sharers should be at a disadvantage, disagrees in principle, disagrees to donation) [insert table with popularity of themes] M Miscellaneous (no theme identified) Figure 18 for sperm donation and figure 19 for egg donation shows how many responses fell into the above themes (please note, some answers fell into more than one theme):

155 Figure 18: Count of responses which fell into the above themes for option 4 other for sperm donation Figure 19: Count of responses which fell into the above themes for option 4 other for egg donation Theme 1- To encourage donation/may increase donor numbers/need for gametes The following quotes demonstrate a selection of respondent s views. perhaps the Donor could be given a choice of any one the above I totally agree that Donors should get some benefits to help them with their own treatment. Hopefully it would encourage more people to Donate if they were getting something in return fertility patient Any of the above. This could negate risks payment (eg: either some form of risk compensation or reduced price/free storage of eggs). TBH it would also encourage people like my younger sister, who is a career orientated person to donate and save some eggs at the same time. Currently she is considering just paying up front to have some stored with no donation (just in case). someone considering donating (eggs) Theme 2 Reduce to cost/free treatment of another kind The following quotes demonstrate a selection of respondent s views. Maybe reduced cost for some other elective treatment such as cosmetic surgery fertility patient Another benefit in kind, that clinics should be permitted to offer egg donors, is greater flexibility in appointment times when receiving fertility treatment. This involves more than reduced waiting times - it also means being given greater latitude to specify at what time and/or on what day one would prefer ones appointment to be. Still another benefit in kind, that clinics should be permitted to offer egg donors, is free car parking space at or near the clinic where the donation is being made - both

156 while the donation is being made, and thereafter if the donor also receives fertility treatment. interested member of the public Theme 3 Disagrees to benefits in kind (coercion, donation for the wrong reason, non-egg sharers should be at a disadvantage, disagrees in principle, disagrees to donation) The following quotes demonstrate a selection of respondent s views. The value should not exceed other types of compensation (expenses, loss of earnings, routine disruption and discomfort) I dont see why a person should gain more from donating than any other person donating, it creates an unfair environment, especially unfair on those without eggs. an egg donor network Donors should only give to those known to them and so do it for love not money interested member of the public Miscellaneous (no theme identified) The following quotes demonstrate a selection of respondent s views. Financial compensation for those donating who do not need the services themselves Should be various choices available to suit the needs of the individual. interested member of the public A gift eg flowers/ gift token any other system could coerce. Ther is much more risk and time involved in donating eggs than sperm. Other: PGD nurse able to nominate one other person for reduced waiting time for treatment donor Should the value of benefits in kind be limited? We asked whether, in practice, the value of benefits should be limited, and if yes, how should it be limited. Respondents were asked to select a scheme for sperm and a scheme for egg donors from the following options; No, the value should not be limited Yes, the value should not exceed other types of compensation (expenses, loss of earnings, routine disruption and discomfort) Yes, the value should not exceed that of an average cycle of fertility treatment, eg, 5000 for a cycle of IVF Yes, the value should be limited (please specify an amount in ) People were not obliged to answer for both sperm and egg donors; therefore 394 responses were received for sperm donors and 407responses for egg donors. As respondents were able to place themselves in more than one category, the total respondent types is greater than the total number of respondents. Figure 20 shows the percentage of respondents from a total of 484 who responded for sperm donors and 499 who responded for egg donors. The breakdown was similar* for responses to sperm and egg donors

157 Figure 20: Breakdown of respondents answering the question whether, in practice should the value of benefits in kind be limited. * For egg donors 37% of patients, 10% donors, 9% Parent of DCC, 14% public, 9% other and 5% organisations responded to this question. Figure 21 shows the proportion of respondents who chose each option for sperm and egg donation: Figure 21: percentage of respondents who chose each option answering the question whether, in practice, the value of benefits should be limited Around four out of ten of the 2 people who gave their views on whether the value of benefits should be limited, and if yes, how should it be limited, provided additional text explaining the reasons for the preference. An overview of the different views expressed by respondents is documented below responded for sperm donors; 407 responded for egg donors, 242 provided additional text

158 Option 1 - No, the value should not be limited 19% of respondents were not in favour of limiting the value of benefits in kind sperm and egg donors receive for their donation. Figure 22 illustrates the breakdown of respondent type who chose option two for sperm and egg donors (% of total respondents). Figure 22: breakdown of respondent type who chose option 1 - No, the value should not be Reasons for answers limited Of the people who selected this option, around four out of ten provided additional text explaining the reasons for the preference. Of those who gave reasons for their view that no, the value should not be limited, the following themes were identified: 1. Limiting the value would reduce the number of donors/ donors should be valued 2. The value should be the decision of a clinic, on a case by case basis 3. Cannot place a limit because treatment costs vary between clinics M Miscellaneous (no theme identified) Figure 23 for sperm donation and figure 24 for egg donation shows how many responses fell into the above themes (please note, some answers fell into more than one theme):

159 Figure 23: Count of responses which fell into the above themes for option 1 No, the value should not be limited for sperm donation Figure 24: Count of responses which fell into the above themes for option 1 No, the value should not be limited for egg donation Theme 1- Limiting the value would reduce the number of donors/ donors should be valued The following quotes demonstrate a selection of respondent s views. I think that this would be the best source for increasing donations - particularly if the woman is undergoing treatment for herself anyway. I think that the benefit in kind should be offered up to whatever the clinic feels is appropriate and not necessarily limited - i cant see any reasons why the benefit in kind should be limited interested member of the public I am in two minds with this question. I would like to say that it should be limited, however I think you need to do anything you can to recruit donors because there is such a shortage. I think a lot of donors too are recruited as a result of themselves having gone through infertility or as a result of them knowing someone who has suffered with infertility. You need to be offering more so that more donors are recruited, hence why I've said that the value should not be limited. fertility patient and donor The more someone is willing to help the more they should be helped themselves. parent of a donor conceived person

160 Theme 2 The value should be the decision of a clinic, on a case by case basis The following quotes demonstrate a selection of respondent s views. It should be flexible to each situation as all will be different fertility patient and parent of a donor conceived person I think it should be down to individual clinics to decide the best way to enable donors and recipients to participate in a donation scheme. As NHS and private clinics can provide these services, it puts them all on a level platform to make that choice for how to provide for their patients. As long as the regulation is there to enable a true and transparent trail of where the benefits/reimbursement has been claimed and made, then it wont run the risk of unscrupulous clinics exploiting the donors and recipients. manager in a fertility clinic It is surely up to the clinic in question to decide how to limit the benefits in kind. If the HFEA agrees they are allowed to give such benefits I cannot see how it is within the HFEAs remit to limit them. fertility patient and parent of a donor conceived person Theme 3 - Cannot place a limit because treatment costs vary between clinics The following quotes demonstrate a selection of respondent s views. The value of benefits should equate to the cost of the treatment. If the costs are above average then they should be covered. parent of a donor conceived person different clinics have different prices, share at one at get 5000 sum but treatment cycle = 3000 then there is a gain embryologist Miscellaneous (no theme identified) The following quotes demonstrate a selection of respondent s views. Heterologous conception is adultery and should be prohibited, and people should be fined and jailed for intentionally facilitating it. Your survey was very skewed toward allowing "donation" and shows no respect for human dignity and human rights and equality. interested member of the public The value shouldnt be limited in financial terms per se, but if the donors also required treatment, then the number of treatments offered should be in proportion to their donation efforts, as far as is reasonably possible. donor I think the types of benefits should be clearly specified, but not the amounts these are worth. This could prove restrictive. donor Option 2 - Yes, the value should not exceed other types of compensation For sperm donation, 33% of respondents were in favour of limiting the value so that it does not exceed other types of compensation; for egg donation, this was 20% of respondents

161 Figure 25 illustrates the breakdown of respondent type who chose option two for sperm and egg donors. Figure 25: breakdown of respondent type who chose option 2 - Yes, the value should not exceed other types of compensation Reasons for answers Around three in ten of the people who selected this option, provided additional text explaining the reasons for the preference. Of those who gave reasons for their view that option 2 should be implemented, the following themes were identified: 1. Donation should be altruistic, not a way of making money or incentivising donation 2. All types of donors should received equal levels of compensation 3. Egg donors should received more benefits than sperm donors because sperm donation is less invasive (only applies to responses for sperm donors) M Miscellaneous (no theme identified) Figure 26 for sperm donation and figure 27 for egg donation shows how many responses fell into the above themes (please note, some answers fell into more than one theme):

162 Figure 26: Count of responses which fell into the above themes for option 2 Yes, the value should not exceed other types of compensation for sperm donation Figure 27: Count of responses which fell into the above themes for option 2 Yes, the value should not exceed other types of compensation for egg donation Theme 1- Donation should be altruistic, not a way of making money or incentivising donation The following quotes demonstrate a selection of respondent s views. The process should not be skewed to incentivise couple in need of fertility treatment to donate. donor Otherwise there will be the risk of attracting individuals who would donate for the "wrong" reasons interested member of the public Theme 2 - All types of donors should received equal levels of compensation The following quotes demonstrate a selection of respondent s views. I think in order to implement a scheme for donors a fair system should be encouraged, whether payment is monetary or in reduced treatment costs I believe they should be the same. embryologist

163 There has to be some sort of cap, I wouldnt know whether there should be a specific limit, but it seems reasonable to give the equivalent benefit to what they would get as a donor not involved in fertility treatment... fertility patient Theme 3 - Egg donors should received more benefits than sperm donors because sperm donation is less invasive The following quotes demonstrate a selection of respondent s views. Sperm donations are more common and easier than egg donations. Egg donations need to be encouraged so there are enough donor eggs for those who need them. fertility patient Miscellaneous (no theme identified) The following quotes demonstrate a selection of respondent s views. Benefits in kind schemes seem to be to be exploiting people who are in a situation where they are very vulnerable. It would be very hard to say no to free treatment if you had little money, even if you did not want to donate eggs/sperm to someone else. ID369 (no option was selected) I think that the costs of in-kind compensation are largely passed along to recipient couples, so those forms of compensation do need to have limits. Otherwise, being a recipient will become too expensive; families will be discriminated against based on their ability to pay for donor treatment cycles. To the extent that the value of in-kind services can be calibrated with other types of compensation for donation, I think it ought to be... We need a level playing field to attract more altruistic donors in the UK. fertility patient in order to ensure that NHS clinics do not suffer as a result of lack of funding for donation there should be a limit on payments and benefits in kind. embryologist Option 3 - Yes, the value should not exceed that of an average cycle of fertility treatment For sperm donors, 41% of respondents were in favour of limiting the value so that it does not exceed the value of an average cycle of fertility treatment for egg donors the figure was 54%. Figure 28 illustrates the breakdown of respondent type who chose option three for sperm and egg donors

164 Figure 28: breakdown of respondent type who chose option 3 - Yes, the value should not exceed that of an average cycle of fertility treatment Reasons for answers Over three out of ten of the peoplewho selected this optionprovided additional text explaining the reasons for the preference. Of those who gave reasons for their view that option 1 should be implemented, the following themes were identified: 1. Donation should be altruistic, not a way of making money or incentivising donation 2. Need a limit otherwise will push up cost of treatment/passed to recipients 3. This is an appropriate/fair level of benefit 4. Egg donors should received more benefits than sperm donors because sperm donation is less invasive (only applies to responses for egg donors) M - Miscellaneous (no theme identified) Figure 29 for sperm donation and figure 30 for egg donationshows how many responses fell into the above themes (please note, some answers fell into more than one theme):

165 Figure 29: Count of responses which fell into the above themes for option 3 - Yes, the value should not exceed that of an average cycle of fertility treatment for sperm donation Figure 30: Count of responses which fell into the above themes for option 3 - Yes, the value should not exceed that of an average cycle of fertility treatment for egg donation Theme 1- Donation should be altruistic, not a way of making money or incentivising donation The following quotes demonstrate a selection of respondent s views. Any payment, other than immediate fertility treatment required by the donor ( eg. IVF,egg freezing, sperm freezing) could be overwhelming and distort the motives for donation. fertility doctor If the benefits for donation are so high, people who need money will do it and it is a form of exploitation. By giving them a reward of fertility treatment later in life, it will not exploit poor individuals and will give them a reward in kind: a family of their own. interested member of the public The amount needs to be set so people have to think what they are doing. The money shouldnt be so high that people donate just for the money but I fully support egg sharing for example, whirr women can receive free treatment if they share eggs...they are likely to appreciate tier actions effect on the recipient as they are in a similar position themselves. The money is the incentive but not so much they dont think about the consequences. The money needs to be enough its worth their while fertility patient

166 Theme 2 - Need a limit otherwise will push up cost of treatment/passed to recipients or clinics The following quotes demonstrate a selection of respondent s views. if the value was unlimited it would push the costs on non donors up as the clinic would need to balance their books. Treatment is already prohibitively expensive. fertility patient I think this should be limited and standard nationwide otherwise private clincs could then beat the competition and offer more attractive packages to attract potential donors- thus having more donors on their books, and attracting more fertility clientscharging higher costs for shorter waiting times. Potential recipients are often desperate to have a child, and would pay anything for a shorter waiting list- I could see this leading to greatly inflated costs for IVF in general, and for donor egg treatment in particular. fertility patient Theme 3 -This is an appropriate/fair level of benefit The following quotes demonstrate a selection of respondent s views. I believe a funded cycle of fertility treatment is an appropriate benefit in kind for someone willing to gamete share. embryologist This would seem to meet the requirements of those who would choose this option - i.e. they would choose to share eggs or sperm in order to have a cycle of treatment for themselves. It also provides a top limit. interested member of the public This just seems reasonable research scientist Theme 4 - Egg donors should received more benefits than sperm donors because sperm donation is less invasive (only applies to responses for egg donors) The following quotes demonstrate a selection of respondent s views. Sperm donations are more common and easier than egg donations. Egg donations need to be encouraged so there are enough donor eggs for those who need them. fertility patient egg donors should receive more benfit that sperm donors due to the physical requirements of donating. interested member of the public Miscellaneous (no theme identified) The following quotes demonstrate a selection of respondent s views. I agree there has to be a limit but on the same token, each time someone donates, that should be counted as a separate donation and free or reduced treatment should reflect that each time. fertility patient A limit needs to be set, as people may take advantage of the system. fertility patient

167 I am in favour of sperm sharing and egg sharing. I see many patients who could afford a cycle of treatment and still choose a sharing programme because they have the feeling that there is an exchange, a solidarity, a shared cause with another couple experiencing fertility problems. Director of fertility centre Option 4 - Yes, the value should be limited (please specify an amount in ) For sperm donors, 8% of respondents were in favour of limiting the value to a specific amount in pounds; for egg donors this figure was 7%. Figure 31 illustrates the breakdown of respondent type who chose this option for sperm and egg donors (% of total respondents). Figure 31: breakdown of respondent type who chose option 4 - Yes, the value should be limited 30 respondents selected this option for sperm donors, 17 of whom provided an answer greater than zero. 28 respondents selected this option for egg donors, 19 of whom provided an answer greater than zero. Of those that selected this option and specified an amount of zero pounds for sperm donors (13 respondents), 10 were not in favour of benefits in kind in principle (3 were). For egg donors, 11 respondents, suggested zero pounds, 6 were not in favour of benefits in kind (5 were). The amounts specified below have been broken down depending on whether respondents were in favour of benefits in kind. For those who did agree, in principle, to donors receiving benefits in kind, most frequently respondents thought that the value should be 500 for sperm donors and 0 for egg donors 3. For sperm donors the median is 500 and the average is 842; 3 5 respondents of the 19 who selected yes in principle to benefits in kind specified 0. In general those respondents did not agree with donors receiving benefits of a monetary value, such as egg sharing. The second most frequently suggested amount was 2,

168 the range given was 0 to 4,000. Foregg donors, the median is 600 and the average is 1134; the range given was 0 to 5,000. For those who did not agree in principle to benefits in kind, most frequently, respondents thought that the value should be 0 for both sperm and egg donors. For sperm donors the median is 0 and the average is 46; the range given was -4 to 500. For egg donors, the median is 0 and the average is 445; the range given was 0 to 3,000. Figure 32 for sperm donation and figure 33 for egg donation show the amounts specified for all respondents who specified an amount for a limit to benefits in kind. : Figure 32: Histogram showing the range of values for a limit to benefits in kind for sperm donation Figure 33: Histogram showing the range of values for a limit to benefits in kind for egg donation Reasons for answers

169 Nearly seven out of ten of the people who selected this option, provided additional text explaining the reasons for the preference. Of those who provided additional text, 10 did not select an option, disagreeing to benefits in kind. Of those who gave reasons for their view that option 4 should be implemented, the following themes were identified: 1. Donation should be altruistic, not a way of making money or incentivising donation 2. Egg donors should received more benefits than sperm donors because sperm donation is less invasive 3. Disagree in principle to donation/benefits in kind. M - Miscellaneous (no theme identified) D Those that did not select any option and disagreed with benefits in kind Figure 34 for sperm donation and figure 35 for egg donation shows how many responses fell into the above themes (please note, some answers fell into more than one theme): Figure 34: Count of responses which fell into the above themes for option 4 - Yes, the value should be limited for sperm donation Figure 35: Count of responses which fell into the above themes for option 4 - Yes, the value should be limited for egg donation

170 Theme 1- Donation should be altruistic, not a way of making money or incentivising donation The following quotes demonstrate a selection of respondent s views. I think the value should adequately compensate, but not be life changing. parent of a donor conceived person offering benefits no matter what is said will put pressure on people to donate for the wrong reasons or as a last resort ie if they dont have the money to pay but will get it free if they also donate... if people are willing to accept donations then then are likely to donate them self for the correct reasons. incentives should not be put in place as they will only sway their decisions which they may come to regret. donor Theme 2 Egg donors should received more benefits than sperm donors because sperm donation is less invasive The following quotes demonstrate a selection of respondent s views. I think some compensation should be paid, and I think compensation for egg donation should be more than for sperm donation since it is a process involving health risks, which the sperm donation process does not. However, I think the value should be within reasonable limits which emphasise the altruistic nature of gamete donation, and it should also not be too high to not entice less well off people into accepting health risks for extra income, so not exceed research scientist As before the inconvenience to the woman is much greater than to a male donor and the value of benefits in kind should reflect that and be given instead of compensation not as well as. fertility patient Theme 3 - Disagree in principle to donation/benefits in kind. The following quotes demonstrate a selection of respondent s views. It will compromise a woman s decision on whether to donate eggs or not, especially if she is economically disadvantaged in any way. Vulnerable of course need not just be economically vulnerable but also emotionally. It is the most vulnerable women who will be most likely to be induced to donate for so-called benefits. We strongly disagree with the offering of any kind of benefits for sperm donation. This is in line with the Explanatory Report of the Additional Protocol on transplantation of organs and tissues of human origin, Article 21, para 113. Nor should the person from whom they have been removed, or a third party, gain any other advantage whatsoever comparable to a financial gain such as benefits in kind or promotion for example. Providing benefits in kind would effectively be an inducement to donate eggs or sperm, in the same way as direct monetary payments would be. Again, as we have stated clearly above, the process of donation should be an altruistic one with the child s long-term welfare at the centre. Other - NGO should not be paid at all, like blood donation interested member of the public M - Miscellaneous (no theme identified) The following quotes demonstrate a selection of respondent s views

171 A fixed sum at this level allows fertility treatment for the donor couple to be subsidised, but it stops short of paying for the entire cost and maintains a sense of joint involvement, both couples contributing to achieving the same goal. parent of a donor conceived person As a small thank you. PGD nurse I think the value, should be linked to the costs associated with that clinic & should only be used at that clinic. Ie Donate at 1 clinic & have a reduced/free 1 implantation at that clinic. fertility patient D No option selected, disagrees with benefits in kind The following quotes demonstrate a selection of respondent s views. Benefits in kind take advantage of fertility patients desperation to have a baby and are unethical. interested member of the public I WOULD LIKE TO SEE THE "SERVICE" TERMINATED interested member of the public I do not believe egg or sperm donation should be allowed. A child is a gift not a purchase and should be treated as such. No one has the right to have a child. Egg and particular sperm donation create a society where nothing is denied. interested member of the public

172 Annex A Breakdown of option selected by each respondent type 4a In principle, should donors be offered benefits in kind for their donation? The follow charts show the breakdown by respondent type for sperm and egg donation: Sperm donation Egg donation Respondent Yes % No % Total Yes % No % Total type Fertility patients Donors Donor conceived Parents of DCC Clinic staff Research scientists Interested members of the public Other Organisations b In practice, what do you think benefits in kind should include (select more than one if necessary)? The follow charts show the breakdown by respondent type for sperm donation: Sperm Donation Option 1 Option 2 Option 3 Option 4 Respondent type Reduced waiting time % Reduced price/ free treatment % Reduced price/ free storage % Other % Any option % Fertility patients Donors Donor conceived Parent of DCC

173 Clinic staff Researcher Public Other Organisation The follow charts show the breakdown by respondent type for egg donation: Egg Donation Option 1 Option 2 Option 3 Option 4 Respondent type Reduced waiting time % Reduced price/ free treatment % Reduced price/ free storage % Other % Any option % Fertility patients Donors Donor conceived 0 Parent of DCC Clinic staff Researcher Public Other Organisation Respondent type 4c In practice, do you think the value of BIK should be limited, and if yes, how should it be limited? The follow charts show the breakdown by respondent type for sperm donation: Sperm Donation Option 1 Option 2 Option 3 Option 4 No, not limited % Yes, not exceed other types of comp % Yes, not exceed average IVF cycle % Yes, limited to cash amount % Total Fertility patients Donors Donor conceived

174 Parent of DCC Clinic staff Researcher Public Other Organisation Respondent type The follow charts show the breakdown by respondent type for egg donation: Egg Donation Option 1 Option 2 Option 3 Option 4 No, not limited % Yes, not exceed other types of comp % Yes, not exceed average IVF cycle % Yes, limited to cash amount % Total Fertility patients Donors Donor conceived Parent of DCC Clinic staff Researcher Public Other Organisation

175 Annex B Breakdown of themes by each respondent type 4b) What should benefits in kind include? The following charts show the breakdown of themes by respondent type for those who selected Option 1 Reduced waiting times for treatment and provided additional text to explain their answer Sperm Donation Theme 1 Theme 2 Theme 3 Misc Total Respondent type To encourage donation, increases availability of donor gametes and helps patients access treatment faster % Donors should be rewarded because donation is a kind, generous act % Patients are able to help other patients. Amongst patients there is a sense of solidarity from their shared experiences. % % Total Fertility patients 32 50% 11 17% 13 20% 8 13% 64 Donors 7 50% 4 29% 2 14% 1 7% 14 Donor conceived 0 0% 2 67% 0 0% 1 33% 3 Parent of DCC 7 39% 3 17% 6 33% 2 11% 18 Clinic staff 5 42% 2 17% 5 42% 0 0% 12 Researcher 1 33% 0 0% 0 0% 2 67% 3 Public 4 44% 1 11% 1 11% 3 33% 9 Other 4 31% 7 54% 2 15% 0 0% 13 Organisation 3 43% 2 29% 2 29% 0 0%

176 Egg Donation Theme 1 Theme 2 Theme 3 Misc Total Respondent type To encourage donation, increases availability of donor gametes and helps patients access treatment faster % Donors should be rewarded because donation is a kind, generous act % Patients are able to help other patients. Amongst patients there is a sense of solidarity from their shared experiences. % % Total Fertility patients 34 48% 12 17% 14 20% 11 15% 71 Donors 7 41% 4 24% 4 24% 2 12% 17 Donor conceived 0 0% 2 67% 0 0% 1 33% 3 Parent of DCC 7 35% 4 20% 6 30% 3 15% 20 Clinic staff 5 42% 2 17% 5 42% 0 0% 12 Researcher 1 33% 0 0% 0 0% 2 67% 3 Public 4 36% 1 9% 1 9% 5 45% 11 Other 4 24% 7 41% 3 18% 3 18% 17 Organisation 3 30% 2 20% 2 20% 3 30%

177 The following charts show the breakdown of themes by respondent type for those who selected Option 2 - Reduced price or free fertility treatment and provided additional text to explain their answer Respondent type Sperm Donation Theme 1 Theme 2 Theme 3 Theme 4 Theme 5 To encourage donation and increase availability of donor gametes % Donors should be rewarded because donation is a kind, generous act % Enables patients to have treatment who otherwise couldn t afford it; and prevents patients from seeking treatment abroad. % Patients are able to help other patients. Amongst patients there is a sense of solidarity from their shared experiences. Total % Misc % Total Fertility patients 34 37% 12 13% 12 13% 16 17% 1820% 64 Donors 7 35% 4 20% 3 15% 3 15% 315% 14 Donor conceived 0 0% 2 50% 0 0% 0 0% 250% 3 Parent of DCC 4 16% 3 12% 4 16% 9 36% 520% 18 Clinic staff 3 17% 3 17% 5 28% 5 28% 211% 12 Researcher 1 33% 1 33% 0 0% 0 0% 133% 3 Public 5 38% 0 0% 2 15% 1 8% 5 38% 9 Other 1 7% 7 47% 2 13% 3 20% 2 13% 13 Organisation 2 22% 2 22% 2 22% 2 22% 1 11%

178 Respondent type Egg Donation Theme 1 Theme 2 Theme 3 Theme 4 Theme 5 To encourage donation and increase availability of donor gametes % Donors should be rewarded because donation is a kind, generous act % Enables patients to have treatment who otherwise couldn t afford it; and prevents patients from seeking treatment abroad. % Patients are able to help other patients. Amongst patients there is a sense of solidarity from their shared experiences. Total % Misc % Total Fertility patients 39 35% 13 12% 13 12% 19 17% 2624% 110 Donors 7 28% 4 16% 4 16% 5 20% 520% 25 Donor conceived 0 0% 2 50% 0 0% 0 0% 250% 4 Parent of DCC 4 14% 4 14% 5 18% 9 32% 621% 28 Clinic staff 5 22% 3 13% 5 22% 6 26% 4 17% 23 Researcher 1 33% 1 33% 0 0% 0 0% 1 33% 3 Public 5 36% 0 0% 2 14% 1 7% 6 43% 14 Other 1 5% 7 37% 1 5% 4 21% 6 32% 19 Organisation 3 25% 2 17% 2 17% 3 25% 2 17%

179 The following charts show the breakdown of themes by respondent type for those who selected Option 3 - Reduced price or free storage and provided additional text to explain their answer Respondent type Sperm Donation Theme 1 Theme 2 Theme 3 Theme 4 Misc Total To encourage donation and increase availability of donor gametes % Donors should be rewarded because donation is a kind, generous act % Enables patients to store who otherwise couldn t afford it % Patients are able to help other patients. Amongst patients there is a sense of solidarity from their shared experiences. ] % Misc % Total Fertility patients 26 33% 13 17% 8 10% 14 18% 1722% 78 Donors 6 30% 4 20% 3 15% 2 10% 525% 20 Donor conceived 0 0% 3 75% 0 0% 0 0% 125% 4 Parent of DCC 4 18% 3 14% 4 18% 7 32% 418% 22 Clinic staff 3 19% 3 19% 5 31% 5 31% 0 0% 16 Researcher 1 25% 1 25% 0 0% 0 0% 250% 4 Public 5 38% 1 8% 1 8% 1 8% 5 38% 13 Other 2 10% 9 45% 1 5% 4 20% 4 20% 20 Organisation 2 25% 2 25% 1 13% 2 25% 1 13%

180 Egg Donation Theme 1 Theme 2 Theme 3 Theme 4 Misc Total Respondent type To encourage donation and increase availability of donor gametes % Donors should be rewarded because donation is a kind, generous act % Enables patients to store who otherwise couldn t afford it % Patients are able to help other patients. Amongst patients there is a sense of solidarity from their shared experiences. % % Total Misc Fertility patients 30 36% 14 17% 8 10% 13 16% 1822% 83 Donors 7 29% 4 17% 4 17% 3 13% 625% 24 Donor conceived 0 0% 3 75% 0 0% 0 0% 125% 4 Parent of DCC 4 17% 4 17% 4 17% 7 30% 417% 23 Clinic staff 2 12% 3 18% 5 29% 6 35% 1 6% 17 Researcher 1 25% 1 25% 0 0% 0 0% 250% 4 Public 5 33% 2 13% 1 7% 1 7% 640% 15 Other 2 10% 8 40% 1 5% 3 15% 630% 20 Organisation 1 10% 2 20% 1 10% 3 30% 3 30%

181 The following charts show the breakdown of themes by respondent type for those who selected option 4 Other and provided additional text to explain their answer Sperm Donation Theme 1 Theme 2 Theme 3 Misc. Total Respondent type To encourage donation/may increase donor numbers/need for gametes % Reduce to cost/free treatment of another kind % Disagrees to all benefits in kind % Misc. % Total Fertility patients 1 25% 2 50% 0 0% 1 25% 4 Donors 1 17% 1 17% 1 17% 3 50% 6 Donor conceived 0 0% 0 0% 0 0% 1 100% 1 Parent of DCC 0 0% 1 33% 0 0% 2 67% 3 Clinic staff 0 0% 0 0% 0 0% 1 100% 1 Researcher 0 0% 0 0% 0 0% 0 0% 0 Public 1 14% 1 14% 2 29% 3 43% 7 Other 2 40% 1 20% 2 40% 0 0% 5 Organisation 1 20% 1 20% 2 40% 1 20%

182 Egg Donation Theme 1 Theme 2 Theme 3 Misc. Total Respondent type To encourage donation/ma y increase donor numbers/ne ed for gametes % Reduce to cost/free treatment of another kind % Disagrees to all benefits in kind % Misc % Total Fertility patients 1 25% 2 50% 0 0% 1 25% 4 Donors 0 0% 1 14% 1 14% 5 71% 7 Donor conceived 0 0% 0 0% 0 0% 1 100% 1 Parent of DCC 0 0% 1 33% 0 0% 2 67% 3 Clinic staff 0 0% 0 0% 0 0% 1 100% 1 Researcher 0 0% 0 0% 0 0% 0 0% 0 Public 1 14% 1 14% 2 29% 3 43% 7 Other 2 33% 1 17% 2 33% 1 17% 6 Organisation 1 20% 1 20% 2 40% 1 20%

183 4cShould the value of benefits in kind be limited? The following charts show the breakdown of themes by respondent type for those who selected option 1 No the value should not be limited and provided additional text to explain their answer Sperm Donation Theme 1 Theme 2 Theme 3 Misc. Total Respondent type Limiting the value would reduce the number of donors/ donors should be valued % The value should be the decision of a clinic, on a case by case basis % Cannot place a limit because treatment costs vary between clinics % Misc. % Total Fertility patients 5 50% 3 30% 0 0% 2 20% 10 Donors 3 43% 0 0% 0 0% 4 57% 7 Donor conceived 0 0% 1 50% 1 50% 0 0% 2 Parent of DCC 1 25% 2 50% 1 25% 0 0% 4 Clinic staff 0 0% 2 40% 2 40% 1 20% 5 Researcher 0 0% 0 0% 0 0% 0 0% 0 Public 3 50% 1 17% 0 0% 2 33% 6 Other 0 0% 2 100% 0 0% 0 0% 2 Organisation 0 0% 1 25% 1 25% 2 50%

184 Respondent type Egg Donation Theme 1 Theme 2 Theme 3 Theme 4 Limiting the value would reduce the number of donors/ donors should be valued % The value should be the decision of a clinic, on a case by case basis % Cannot place a limit because treatment costs vary between clinics Total % Misc % Total Fertility patients 5 42% 3 25% 0 0% 4 33% 12 Donors 3 43% 0 0% 0 0% 4 57% 7 Donor conceived 1 50% 0 0% 1 50% 0 0% 2 Parent of DCC 1 25% 2 50% 1 25% 0 0% 4 Clinic staff 0 0% 2 40% 2 40% 1 20% 5 Researcher 0 0% 0 0% 0 0% 0 0% 0 Public 3 50% 1 17% 0 0% 2 33% 6 Other 0 0% 2 100% 0 0% 0 0% 2 Organisation 0 0% 1 25% 1 25% 2 50%

185 The following charts show the breakdown of themes by respondent type for those who selected Option 2 Yes the value should be limited to that of other compensation and provided additional text to explain their answer Respondent type Sperm Donation Theme 1 Theme 2 Theme 3 Theme 4 Donation should be altruistic, not a way of making money or incentivising donation % All types of donors should received equal levels of compensation % Egg donors should received more benefits than sperm donors because sperm donation is less invasive (only applies to responses for sperm donors) Total % Misc. % Total Fertility patients 5 25% 2 10% 6 30% 7 35% 20 Donors 1 33% 0 0% 2 67% 0 0% 3 Donor conceived 0 0% 0 0% 0 0% 0 0% 0 Parent of DCC 1 20% 1 20% 1 20% 2 40% 5 Clinic staff 1 25% 1 25% 0 0% 2 50% 4 Researcher 0 0% 1 50% 1 50% 0 0% 2 Public 1 17% 2 33% 2 33% 1 17% 6 Other 1 20% 1 20% 0 0% 3 60% 5 Organisation 1 25% 1 25% 0 0% 2 50%

186 Egg Donation Theme 1 Theme 2 Misc Total Respondent type Donation should be altruistic, not a way of making money or incentivising donation % All types of donors should received equal levels of compensation % Misc % Total Fertility patients 3 30% 2 20% 5 50% 10 Donors 1 100% 0 0% 0 0% 1 Donor conceived 0 0% 0 0% 0 0% 0 Parent of DCC 1 50% 1 50% 0 0% 2 Clinic staff 0 0% 1 50% 1 50% 2 Researcher 0 0% 1 100% 0 0% 1 Public 1 25% 2 50% 1 25% 4 Other 1 33% 1 33% 1 33% 3 Organisation 0 0% 1 50% 1 50%

187 The following charts show the breakdown of themes by respondent type for those who selected Option 3 - Yes, the value should not exceed that of an average cycle of fertility treatment additional text to explain their answer Sperm Donation Theme 1 Theme 2 Theme 3 Misc. Total Respondent type Donation should be altruistic, not a way of making money or incentivising donation % Need a limit otherwise will push up cost of treatment/passed to recipients % This is an appropriate/fair level of benefit % Misc. % Total Fertility patients 7 27% 5 19% 10 38% 4 15% 26 Donors 1 33% 0 0% 2 67% 0 0% 3 Donor conceived 0 0% 0 0% 2 100% 0 0% 2 Parent of DCC 5 50% 0 0% 4 40% 1 10% 10 Clinic staff 2 67% 0 0% 1 33% 0 0% 3 Researcher 0 0% 0 0% 2 100% 0 0% 2 Public 4 67% 0 0% 2 33% 0 0% 6 Other 1 20% 0 0% 4 80% 0 0% 5 Organisation 0 0% 0 0% 2 100% 0 0%

188 Egg Donation Theme 1 Theme 2 Theme 3 Theme 4 Misc Total Respondent type Donation should be altruistic, not a way of making money or incentivising donation % Need a limit otherwise will push up cost of treatment/pa ssed to recipients % This is an appropriat e/fair level of benefit % Egg donors should received more benefits than sperm donors because sperm donation is less invasive (only applies to responses for egg donors) % Misc % Total Fertility patients 9 24% 7 19% 11 30% 6 16% 4 11% 37 Donors 1 20% 0 0% 2 40% 2 40% 0 0% 5 Donor conceived 0 0% 0 0% 2 100% 0 0% 0 0% 2 Parent of DCC 5 42% 1 8% 4 33% 1 8% 1 8% 12 Clinic staff 3 50% 0 0% 1 17% 0 0% 2 33% 6 Researcher 0 0% 0 0% 2 67% 1 33% 0 0% 3 Public 4 50% 0 0% 2 25% 2 25% 0 0% 8 Other 1 17% 0 0% 4 67% 0 0% 1 17% 6 Organisation 1 33% 0 0% 2 67% 0 0% 0 0%

189 The following charts show the breakdown of themes by respondent type for those who selected Option 4 - Yes, the value should be limited and provided additional text to explain their answer Sperm Donation Respondent type Theme 1 Theme 2 Theme 3 Misc. Total Donation should be altruistic, not a way of making money or incentivising donation % Egg donors should received more benefits than sperm donors because sperm donation is less invasive % Disagree in principle to donation/benefits in kind. % Misc. % Total Fertility patients 2 33% 1 17% 0 0% 3 50% 6 Donors 1 100% 0 0% 0 0% 0 0% 1 Donor conceived 1 100% 0 0% 0 0% 0 0% 1 Parent of DCC 2 50% 0 0% 0 0% 2 50% 4 Clinic staff 0 0% 0 0% 0 0% 1 100% 1 Researcher 2 67% 1 33% 0 0% 0 0% 3 Public 2 50% 0 0% 2 50% 0 0% 4 Other 2 67% 0 0% 1 33% 0 0% 3 Organisation 2 67% 0 0% 1 33% 0 0%

190 Respondent type Egg Donation Theme 1 Theme 2 Theme 3 Misc Total Donation should be altruistic, not a way of making money or incentivising donation % Egg donors should received more benefits than sperm donors because sperm donation is less invasive % Disagree in principle to donation/ben efits in kind. % Misc % Total Fertility patients 2 50% 1 25% 0 0% 1 25% 4 Donors 1 100% 0 0% 0 0% 0 0% 1 Donor conceived 1 100% 0 0% 0 0% 0 0% 1 Parent of DCC 3 60% 0 0% 0 0% 2 40% 5 Clinic staff 0 0% 0 0% 0 0% 1 100% 1 Researcher 2 50% 1 25% 1 25% 0 0% 4 Public 2 40% 0 0% 3 60% 0 0% 5 Other 2 40% 0 0% 2 40% 1 20% 5 Organisation 2 50% 0 0% 2 50% 0 0%

191 Equality impact assessment Compensation, reimbursement and benefits in kind In order to assess whether any of the compensation, reimbursement and benefits in kind options could disproportionately affect any groups protected by equalities legislation the consultation asked the following question: Do you think any of the compensation, reimbursement and benefits in kind options would have a disproportionate effect on any groups of people on the basis of their age, disability, ethnicity or race, religion, gender or sexual orientation? Respondents were given the following options: Yes No I have no view Respondents were asked to give reasons if they answered Yes or No. Figure 1 shows the proportion of respondents who chose each option. Nearly half of respondents did not think the policy options would have a disproportionate effect on any groups of people. Figure 4: Proportion of respondents who chose each option for the question Do you think any of the compensation, reimbursement and benefits in kind options would have a disproportionate effect on any groups of people? Of the 644 people who had a view on the equality impact of compensation, reimbursement and benefits in kind 246 (38%) provided additional text explaining the reasons for their answer (129 regarding Yes, 115 regarding No ). Yes responses Donation review October 19 Authority meeting Annexes part

192 The main reasons given for why the compensation, reimbursement and benefits in kind policy options could have a disproportionate effect on people based on age, disability, ethnicity, religion, gender and sexual orientation are (respondents often mentioned more than one group of people): 1. Age (41 respondents) Variable compensation linked to earnings may discriminate against younger people who typically earn less money than older people Older women who are above the age limit for donating their eggs would not be eligible for benefits in kind schemes If the level of compensation for donation were increased, younger people on a lower income may be disproportionately incentivised to donate to earn money. For example: Any payment or payment in kind is likely to act as an incentive for people who are monetarily vulnerable, such as the young or out-of-work. Fertility patient 1. Disability (14 respondents) Disabled people may not be eligible for donating their sperm or eggs as part of benefits in kind schemes Disabled donors might incur greater travel expenses, which might exceed the level of reimbursement if it were a fixed rather than variable amount. For example: If only fixed expenses were to be allowed, many disabled people who are unable to access the cheapest forms of transport would be disadvantaged. Interested member of the public Disabled people unable to work would not benefit from compensation for loss of earnings. For example: There could be age- or disability-related differences in working habits that might influence how much compensation people get. Disabled people who are unable to work, for example, might miss out on compensation for lost earnings. Of course there are different trends in earning across different age groups too - retired people might not benefit from compensation for lost earnings, nor might students. Whether this effect is "disproportionate" or not is a bit of a difficult question, though! Doctoral researcher 2. Ethnicity/Race (15 respondents) If the level of compensation for donation were increased, those from ethnic minorities on a lower income may be disproportionately incentivised to donate to earn money. For example: I believe that if merely compensation and benefits in kind are changed, that we will see young, ethnic minorities and possibly immigrants choose donation Donation review October 19 Authority meeting Annexes part

193 as another way to earn income. While it might not be discriminatory, it certainly raises the uncomfortable speculation that this is likeliest to appeal to the most vulnerable poor. Means, education, and psychological testing for suitability prior to donation MUST occur in conjunction with any change in compensation / benefits in kind. Fertility patient Low demand for donors from certain ethnic groups may exclude them from taking part in a benefits in kind scheme. For example: the benefit in kind scheme would potentially disadvantage people from different ethnic backgrounds because there are unequal numbers of available eggs/sperm available from different ethnic groups, which might mean more pressure for someone form an ethnic minority background to donate, and/or less chance for them to receive gametes of people from their own background, if they so wish. Research scientist If donors are not compensated for expenses they incur outside the UK there may be fewer donors available to patients from ethnic minorities. 3. Religion (5 respondents) Attitudes and beliefs around infertility and donation may vary between religious groups. For example, some ethic groups may disagree with accepting any form of money for donation. 4. Gender (25 respondents) Women are more likely to be part time workers and therefore have greater difficulty taking time off from work to donate. Allowing people to donate at the weekends would address this issue. If the level of compensation for donation were increased women in low incomes may be disproportionately incentivised to donate to earn money Donating eggs is a more invasive and risky procedure than sperm donation and therefore egg donors should receive a higher level of compensation for inconvenience. For example: By nature of the donation process men would not be compensated for sperm donation as much as women would for egg donation since it is nowhere near as invasive. I don t think, however, that men would expect to be compensated in the same way. Interested member of the public 5. Sexual orientation (5 respondents) The current shortage of donor sperm already prevents a disproportionate number of lesbians and same sex couples, compared to heterosexual people, from having children. Limiting the availability of donor sperm in any way adds to this shortage and disproportionate effect. Increasing compensation would encourage donation from gay or lesbian people. For example: Donation review October 19 Authority meeting Annexes part

194 I think it may well mean, LGBT women, like myself, would give eggs more readily, but thats an advantage. It would mean women who are unlikely to conceive naturally (gay women) are helping other women who are unlikely to conceive naturally, due to infertility problems. Interested member of the public Other If the level of compensation for donation were increased the financially vulnerable may be disproportionately incentivised to donate to earn money (58 respondents). For example: Offering cash or benefits in exchange for donation will encourage those in the most desperate financial situations to donate, even if it was not a course of action they would have otherwise considered. I, myself, considered donating eggs in America solely to help pay off my student debts, despite the fact that I am principled against donation. Interested member of the public Disagrees in principle to donation or equality (2 respondents). For example: I do not agree that any of this should be happening in the first place Interested member of the public No responses Respondents who felt that the compensation, reimbursement and benefits in kind policy options would not disproportionately affect any groups protected by equalities legislation mostly gave the following reasons: 1. Just can t see a disproportionate effect (40 respondents). For example: I don t think that improving compensation for donors would adversely or disproportionately affect particular groups Fertility patient 2. No negative effect, the policy options may benefit some groups eg, same sex couples will have more treatment options (3 respondents). For example: I feel that keeping compensation levels fixed for all donors is an important way of ensuring equality amongst egg donors and sperm donors. Compensation and benefits in kind should hopefully improve access to fertility treatment for those who are less privileged, which should also improve equal access. Social scientist 3. May have a negative effect on a group but this effect is small/bearable in terms of the whole population/benefit gained (3 respondents). For example: No - the only disproportionate effect would be on those who are not able to produce sperm or eggs and who are looking for a donor - they would not then be able to donate to receive benefits in kind to reduce the cost of their Donation review October 19 Authority meeting Annexes part

195 treatments. But hopefully the option would still be available for their partner. Donor 4. Disagrees in principle to donation or equality (1 respondent). For example: The whole practice of IVF discriminates against the dignity, humanity and rights of the next generation. None of the above groups can claim as a "right" any practice which violates the whole dignity of human life. Interested member of the public 5. It s not discriminatory to treat people on a case by case basis based on their characteristics eg, medical reasons for not allowing older people to donate. (16 respondents). For example: The donation should be based on medical evaluation first, and then if someone passed the criteria, there is no difference who is going to donate, as we need all type of donors Egg donation coordinator 6. Having a policy of no payment/only reimbursing will not discriminate (6 respondents). For example: if payments are made to reimburse expenses then no donor would be left out of pocket, therefore it would not discriminate. If, in return for donating, they themselves would receive discounted or free fertility treatment, again this would be a fair way of rewarding (for want of a better word) their donation. Donor Donation review October 19 Authority meeting Annexes part

196 Annex E: Literature review Literature review - Motivation and compensation for gamete donation; including egg and sperm sharing Section 1: Sperm donation p 167 Section 2: Egg donation p 172 Section 3: Egg and sperm donation p 174 Section 4: Egg sharing/ sperm sharing p 177 Donation review October 19 Authority meeting Annexes part

197 Section 1: Sperm donation Daniels, K. Anonymity and openness and the recruitment of gamete donors. Part 1: semen donors (2007) i (UK) Overview of research evidence (since 1995) concerning semen donors views on anonymity and openness. Evidence shows that it is possible to recruit semen donors who are required to be identifiable to any future child. Evidence, while not conclusive, suggests that an open system attracts different kinds of men than an anonymous system. Argues that this challenges some of the beliefs and fears associated with changes in the law in the UK and other countries. K. Daniels et al. Semen donor recruitment: a study of donors in two clinics (1996) ii A comparative study of semen donors at two London clinics (Service A and Service B) with different recruitment and payment policies. Service A sought to recruit mature men who had previously had children or who had been involved in a successful IVF programme. Significant resources had to go into the initial recruitment of these donors. Service B recruited mainly via notices in university halls of residence and hospitals. It offered donors a financial recompense of 10 for time and travel expenses. The study looked at the demographic characteristics of donors at each clinic and their motivations, attitudes towards payment and disclosure. 28 questionnaires were completed in total. Most Service A respondents were in their late 30s to late 40s, were generally married (76%) or previously married (18%) and 94% had children. Most Service B respondents were aged 20 30, with about half in their early to mid-20s. Most were unmarried (91%) although 45% were in a steady relationship. 73% were students or recent graduates from a university. 100% of Service A donors stated that they were motivated to donate in order to help infertile couples, compared to 63% of Service B donors. No Service A donors were motivated by financial reasons, compared to 82% of Service B donors. 18% of Service A donors thought that donors should be paid, and 82% thought that they shouldn t. By comparison, 73% of Service B donors thought they should be paid and 9% that they shouldn t. 29% of Service A donors thought that donors should be reimbursed compared to 63% of Service B donors. 47% of Service A donors felt that there should be no reimbursement, compared to 95 from Service A. 76% of Service A donors said that they would donate without reimbursement, compared to 18% from Service B. The study concludes that recruitment and payment policies help to determine the characteristics of semen donor recruits. Potential donors, particularly mature married men, can be motivated to donate without a financial incentive. It also suggests that an alternative to recruiting financially vulnerable (and therefore financially motivated) students is to make greater efforts to recruit from among partners of women undergoing fertility treatments. Yee, S. Gift without a price tag: altruism in anonymous semen donation iii (2009) (Canada) Literature review assessing the differences in donation behaviours under paid and altruistic donation models. Studies have found that semen donors may have both altruistic desire and be motivated by egotistic considerations when making a donation (Johnson, Donation review October 19 Authority meeting Annexes part

198 1997). Studies have also found the co-existence of both altruism and a desire for payment among donors. Yee refers to studies which suggest that just having an altruistic attitude is not a sufficient impetus to donate (Ferguson et al., 2007, p. 2001). The donor has to calculate the worthiness of his donation act based on cost-benefit analysis, and then re-assess his motives based on newly assimilated information once he has decided to take action. Concludes that it is important to ensure that the legitimate concerns of semen donors are properly addressed, and that the practicalities of donation are considered at each stage to remove all the possible negative deterrents that may affect the donation decision. Ernst, E. et al. Attitudes among sperm donors in 1992 and 2002: a Danish questionnaire survey (2007) iv A questionnaire survey was carried out at a private sperm bank in Denmark in 2002 (93 respondents) and the results compared to a previous survey at the same bank in 1992 (41 respondents). The amount of compensation paid to donors was approximately $35 per ejaculate. The average age of donors increased in Both studies revealed that altruistic as well as financial motives were the main factors for becoming a donor. A very high percentage of respondents ranked financial compensation as a motivating factor. However, a low percentage ranked it as the sole one. The same applied to altruism. Most responded that they were motivated by a combination of both financial and altruistic factors. Few said that they would continue to donate without compensation. The following table illustrates the balance of motivations in both studies Motives for becoming a sperm donor 1992 survey (includes both donors approved for donation and prospective donors) 2002 survey Approved donors Prospective donors Motives n=41 n=62 n=31 Financial 39 (95%) 61 (98%) 28 (90%) Purely financial 5 (12%) 10 (16%) 4 (13%) Altruistic 36 (88%) 49 (79%) 20 (65%) Purely altruistic 2 (5%) 1 (2%) 0 (0%) Combination of the 34 (83%) 48 (77%) 20 (65%) above To get physical/ 12 (29%) 22 (35%) 13 (42%) biochemical exam Curiosity 12 (29%) 10 (16%) 12 (39%) Would continue to 5 (12%) 5 (8%) 1 (3%) donate without compensation Would no longer 23 (56%) 41 (66%) 20 (65%) donate without compensation Uncertain 13 (32%) 16 (26%) 10 (32%) Maintaining anonymity was still important for the vast majority of the donors. (25% in the 2002 study and 32% in the 1992 one). Donation review October 19 Authority meeting Annexes part

199 Ekerhovda, E. and Anders Faurskovb, F. Swedish sperm donors are driven by altruism, but shortage of sperm donors leads to reproductive travelling (2008) v. Thirty Swedish sperm donors completed a questionnaire and were interviewed about their backgrounds, motivations and attitudes towards sperm donation. The main motivation for sperm donors was to help others. However, findings suggest that differences between donor groups on a range of factors highlight the need for tailored psychosocial evaluation and counselling and that it is not useful to generalise motivations across various donor groups vi. Thorn, P., Katzorke, T. and Daniels, K. Semen donors in Germany: A study exploring motivations and attitudes (2008) vii Study exploring the motivations of sperm donors in German clinics. Questionnaires were returned by 63 respondents from 8 different clinics. The average age of respondents was 29 years old and most were students or had a university entrance qualification. Just over half were married or in a de facto relationship and 47 (75%) had no children at the time of donating. The respondents were asked to give three motivations for their donation and were asked whether the motivation was very important, important, or unimportant. The results suggested that financial compensation and helping infertile couples were the biggest motivational factors. 26 (42%) and 28 (45%) of respondents agreed that financial motivation was either very important or important and 24 (42%) and 23 (40%) thought that helping infertile couples was very important or important.. Almost half of the respondents (30, i.e. 48%) knew couples who had experienced infertility and this had influenced 22 (73%) in their decision to donate. All but one respondent (98%) agreed that donors should receive financial compensation and 43 (68%) also favoured reimbursement of costs. (It should be noted that legislation in Germany does not offer legal protection to donors regarding their responsibilities towards offspring). Cook, R. and Golombok, S. A survey of semen donation: phase II the view of the donors (1995) viii HFEA commissioned research at 14 UK licensed treatment centres on the motivations and attitudes of 144 semen donors between 1 November 1993 and 31 January The average age of donors was 24. Donors reported that both payment and a wish to help others influenced their decision to attend the centre. The payment was stated to be very important by 43% of donors and moderately important by a further 27%, whereas the desire to help others was very important to 34% of donors and moderately important to an additional 45%. Only 1% believed that donors should not be paid. 62% reported that they would not have donated had they not been paid. However, a significantly greater proportion of older donors (>25) than younger men (<25) stated that they would donate even if they weren t paid (49% and 31% respectively). The same questionnaire was distributed to a control group (136 men), who had never donated. Of those non-donors who had considered donating semen, the majority (71%) had been attracted by the payment. For those who had considered donation but not done so, the Donation review October 19 Authority meeting Annexes part

200 main reason seemed to be a lack of motivation rather than concerns about particular aspects of donation. Concerns about particular aspects deterred 17% of non donors and 7% had moral objections to the practice. 46% of donors reported concerns that changes in the law would result in their offspring being able to identify them. A. Purdie et al. Attitudes of parents of young children to sperm donation implications for donor recruitment. ix (1994) The study (carried out in 1992) explored the attitudes of parents of young children towards sperm donation. Data was provided by 95 couples via questionnaires. The research found that 55% of men and women had seen or heard of the need for sperm donors. For 26% of couples, one or both partners had considered donation, and among half of those (13% of total) no objections to donating were raised. However, only two men had approached the clinic as donors. Objections to donation centred mainly on discomfort at having children outside their family, worry about future contact with donor insemination children, and worry about incest. Women were three times as likely to raise these objections as men. Of all respondents, 20% thought a donor should be used for only one recipient couple, while 50% suggested three or fewer families. Overall, 41% rated having nonidentifying information about the recipient couple(s) as an important aspect of sperm donation, although only 9% of men and 17% of women considered personal contact important. The study concluded that many people were receptive to the idea of sperm donation, although they worry about the possible presence, absence or type of contact that could occur between DI children and their 'own' family. Many potential donors would like access to information about the other 'party', just as recipients have. S.C.Lui et al.: A survey of semen donor attitudes (1995) x The survey investigated the attitudes of 55 potential semen donors recruited from IVF units/ sperm banks in Leeds, Hull and Oxford. The age range was and 77% were below the age of 22. The majority were students. Guaranteed anonymity was a necessary requirement for 89% of those surveyed. The study found that: 81% agreed with the statement that The most rewarding aspect of donating semen is the knowledge that you have helped someone in need. 69% stated that they would not donate if they were not paid and 45% thought that semen donors should be paid more. 32% agreed that Donating semen is one way of making your mark on the world and 55% said they would be happy to leave their bodies to medical science. 96% felt sorry for infertile couples. The article concludes that selfish motivations (e.g. money or procreation) co-existed with altruistic ones. Daniels, K et al Donor insemination: the gifting and selling of semen (1996) xi. Research in this area suggests that the commercialisation of semen determines and reflects the type of men frequently recruited to provide semen. Argues that this, in turn, influences the meaning that donors themselves, recipients, offspring, health professionals and society at large attribute to the provision of semen. Donation review October 19 Authority meeting Annexes part

201 Pedersen, B. Psychosocial aspects of donor insemination: Sperm donors - their motivations and attitudes to artificial insemination (1994) xii. The study involved 26 subjects who were actively functioning as sperm donors at a fertility clinic in Denmark. The study found that only a small fraction of donors stated purely altruistic motivation (8%), whereas approximately a third of donors (32%) reported purely financial and the majority (60%) of donors reported a combination of both. Del Valle, A.P., Anonymous semen donor recruitment without reimbursement in Canada (2008) xiii The study tested claims that sperm donors who are older, married or are fathers are less likely to be financially motivated to donate. 246 donor applicants were surveyed and demographic data including age, marital status, paternity status and occupation was collected, in addition to information assessing donor eligibility and willingness to donate without reimbursement. The results from the survey are inconsistent with earlier published studies in various countries with regards the demographic profiles of donor applicants and their willingness to participate without reimbursement. In the current study, a larger proportion of young donor applicants (20-29 years) were willing to participate without reimbursement. Marital and paternity status did not appear to be influencing factors. Lyall, H. et al. Should sperm donors be paid? A survey of the attitudes of the general public (1998) xiv 717 individuals in three distinct groups were surveyed on the question of payment to sperm donors. Those groups were: the general public, students (potential donors) and infertility patients (potential recipients).the majority of the potential donor group (students) was in favour of paying sperm donors, as were infertility patients. In contrast the general public was not. Although not in favour of paying sperm donors, the general public overwhelmingly approved of the use of donated sperm for the treatment of infertile couples. Within the potential donor group (students), the majority indicated that financial reward was an important factor which would influence their decision to donate. Donation review October 19 Authority meeting Annexes part

202 Section 2: Egg donation S. Purewal and O.B.A. van den Akker Systematic review of oocyte donation: investigating attitudes, motivations and experiences (2009) xv Literature review of 64 studies (in a number of different countries, including 22 in the US studies and 21 in the UK). The paper identifies 5 distinct groups of donors: patient donors (involved in egg sharing arrangements); volunteer donors (donation without financial reward); known donors (donation to a known recipient); commercial donors (donation with monetary compensation) and potential donors. Patient donors: Studies by Ahuja et al., Blythe and Power et al. suggest that patient donors are motivated by a combination of altruism and self interest. A study by Power et al. found that 90% of the patient and volunteer donors they surveyed reported altruistic motives for donating. However, a study by Rapport found that prospective patient donors were motivated by the pursuit of motherhood rather than altruism. Known donors: Studies have found that the majority of known donors are motivated to donate because of their personal relationship with the recipients, particularly if they are related. Commercial donors: All of the studies with commercial donors came from the USA. Donors motives appear to be a mix of financial gain and altruism. According to a couple of studies, those who reported altruistic motives were more likely to report post donation satisfaction. Other motives included: confirmation of their fertility, passing and passing on their genes. Volunteer donation: Studies have found that donors often report general altruistic motives. Other motives include the experience of infertility (personal or through a friend of family member). Most volunteer donors were against payment for egg donation. However, one study found that donors considered payment to be acceptable to cover expenses but not for financial gain. Potential donors: Overall there appears to be a positive attitude towards egg donation in the general and in the patient population. However, one study (Purewal and van den Akker, 2006) found that British South Asian women were significantly less likely to agree to donate their eggs that Caucasian British women. The review concludes that donors motives differ depending on their donation type. Steinbock, B., Payment for Egg Donation and Surrogacy (2004) xvi. The article explores various ethical arguments about the commercialisation of egg donation, including arguments about human dignity, commodification, coercion, inequality, exploitation, threats to the families and the (psychological) welfare of donor offspring. Steinbock draws a distinction between compensation for the burden of egg retrieval and payment for a product (the eggs). She concludes that payment to donors is ethically acceptable and suggests that donors should not be paid for their eggs but compensated for the burden of egg retrieval. This, she argues, has the advantage of limiting payment and not distinguishing between donors on the basis of their traits. It would also ensure that donors are paid regardless of the number of quality of eggs retrieved. Donation review October 19 Authority meeting Annexes part

203 She also argues that altruistic egg donation is not necessarily immune from the risks of exploitation and that when egg donation imposes little or no extra burden (e.g. in egg sharing arrangements), there is less reason to compensate. Daniels, K. Anonymity and openness and the recruitment of gamete donors. Part 2: Oocyte donors (2007) xvii. The paper provides an overview of the research evidence (9 studies) concerning oocyte donors' views on anonymity and openness from 2000 to 2007.Five of the studies came from the USA, one from Belgium, one from Australia, one from Canada and one from the UK (Craft). The paper found that motivation for known donors seems to be predominantly based on altruism, especially where the donors are relatives or friends. All the studies carried out with US donors reported that financial reward was an important motivation and in one study, only 11% said that they would donate without being paid. A significant, and in many studies, only, motivation for becoming a donor was to assist others. Some studies suggest there may be multiple reasons for deciding to donate. Daniels concludes that in contrast to the many views expressed concerning the willingness of donors to come forward following the a change to the law on anonymity in the UK, there is clear evidence that gamete donors can and have been recruited when they are required to be identified. Brett, S., et al. Can we improve recruitment of oocyte donors with loss of donor anonymity? A hospital-based survey xviii (2008) UK study exploring the impact of loss of anonymity on women s willingness to donate oocytes. 143 women responded a questionnaire, sent out in The study found that awareness of gamete donation was high (90%), with 34% willing to consider donation. Removal of donor anonymity reduced this figure to 17%. For women under 35 years of age, the corresponding figures are 43% and 19%, respectively. The authors conclude that loss of donor anonymity reduced by half those willing to consider donation in all age groups. It suggested that the future of egg donation depended on the recruitment of donors willing to be identified. It recommended that consideration of older donors may be an option if adequate counselling occurs. Donation review October 19 Authority meeting Annexes part

204 Section 3: Egg and sperm donation Pennings, G., Vayena, E., and Ahuja, K. Balancing ethical criteria for the recruitment of gamete donors (2012) xix The article explores various ethical arguments with regards the recruitment of gamete donors, including anonymity and payment. Arguments against payment include those based on human dignity, concerns about the risks of exploitation, and the welfare of the child. Arguments in favour include those based on the idea of fairness and the idea that it could help improve recruitment rates. There are broadly three major models for payment: the market model, the reimbursement model and the reimbursement/ compensation model (which could include compensation for risks, burden, inconvenience, discomfort and time). Argues in favour of a compensation scheme based on a wage model, as currently applies to clinical trial participants. It is based on the notion that clinical research involves little skill but does involve time, effort and inconvenience hence, participants should be paid hourly wages similar to those for unskilled labour (Dickert and Grady, 1999). Such an approach would avoid undue inducement, would ensure that payment is provided it should be based on the service and not on the product ( commodity ), and would prevent differences in compensation between donors with different backgrounds and traits. Also discusses egg sharing and highlights research suggesting that donors motives are mixed. Also points out that, although altruism might be the ideal motive, moral praiseworthiness should not be confused with moral acceptability. Central ethical argument around egg sharing concerns whether or not the benefit of a subsidised cycle constitutes payment or a different sort of benefit. Highlights research that indicates that donors do not regard egg sharing as a commercial transaction. Argues that it is acceptable to offer benefits that incentivise donors, as long as they do not lead to commercialisation and commodification of the human body. Points out that many regard the system as win win and that donors do not put themselves to any additional physical risks, since they will also be receiving IVF treatment. Also discusses and advocates the related system of mirror exchange, whereby the partner of the person who needs gametes donates in exchange for the gametes of the opposite sex. In the indirect version of this system, the donated gametes are directed into an egg and sperm pool and allocated to candidate recipients on a waiting list. The donor couple are allocated bonus points (which move them higher up the list) if they donate. Pennings argues that this system has many ethical advantages, including that: it is based on a system of fairness and the benefit (of a moving up the waiting list) is strictly non-commercial. It also encourages donation. Pennings, G. Mirror Donation (2007) xx Argues that the mirror exchange system can alleviate the shortage of both sperm and eggs in an ethically acceptable way. Suggests that recipients of donor gametes have a moral obligation to make a contribution to the system from which they benefit by reciprocating. Rejects a system of strict reciprocity as it excludes categories of people from access. Haimes, E. Issues of gender in gamete donation (1993) xxi The study looked at the role of gender in donation, how donation is perceived by the public and how this affects donation. The paper suggests that assumptions about gender and reproduction lead to egg donation being seen in a familial, clinical and asexual context whereas semen donation is seen in an individualistic context of dubious sexual connotations. Donation review October 19 Authority meeting Annexes part

205 Blyth, E. and Frith, L. et al. UK gamete donors reflections on the removal of anonymity: implications for recruitment xxii (2007) The paper analysed the responses of one hundred and thirty-three gamete donors to a Department of Health survey undertaken as part of the government s review of donor anonymity. The results of the survey highlighted that some donors found the loss of anonymity problematic however it concluded that some of their concerns could be addressed. The paper suggests that certain activities, such as the provision of counselling, support and better information could enable levels of gamete donor recruitment to be maintained in the context of the UK s policy of non-anonymous and non-remunerated donation. Hudson, N. et al. Public perception of gamete donation: A research review xxiii. (2009) Literature review of 33 articles, chapters and reports concerned with public perceptions of gamete donation in various countries, including the UK. The term public is used to refer to those groups who have not necessarily had direct experience of donation. The review included the following findings: Studies in the UK, Sweden and New Zealand suggest that 12%-15% of respondents would consider, or had no immediate objection to, acting as a donor Women are slightly more positive towards donating their gametes than men and students were more likely to report intention to donate sperm than members of the public more generally (UK). One UK study found that donors are more likely to donate if the recipient is a family member or close friend. Payment was found to be an insignificant motivation to donate, with only 7% of respondents reporting this to be an important factor in their decision making. Public groups are not in favour of paying gamete donors and are concerned about inappropriate commercialisation Donation of gametes can be seen as similar to the adoption of a child. The idea of a parental link with gametes could affect a person s willingness to donate. Differences in views on the acceptability of using donated gametes for treatment can depend on various factors. Research by Kailasam et al. (2001) suggests that older people who already have children may be more reserved in their acceptance. Various other studies suggest that those who reported increased religiosity were less likely to agree to donation. For example, some muslim participants felt that donation would be considered forbidden in the Islamic faith. However one researcher suggests that there is often a disparity between official religious discourse and the lived experience of followers. The evidence is inconclusive with regards gender differences. The review concludes that our current knowledge of public understandings and attitudes towards gamete donation is limited and there is a need for further research with non-user or public groups. Simons, E., Ahuja, K., Egg-sharing: an evidence based solution to donor egg shortages (2005) xxiv Article finds that birth rates for both parties are not compromised and argues that eggsharing is the one form of egg donation which does not make a healthy woman a patient. Concludes that egg-sharing is ethically and legally sound, minimises risk and should be the only form of egg donation permitted in the UK. Donation review October 19 Authority meeting Annexes part

206 Craft, I and Thornhill, A Would all inclusive compensation attract more gamete donors to balance their loss of anonymity? (2005) xxv Proposes the introduction of a single 'all-inclusive' financial allowance for donors to promote donor recruitment and shorten treatment waiting times. This compensating allowance would cover the inconvenience of repeated attendance, the discomfort of receiving multiple injections, and invasive egg recovery, and be comparable to other volunteers receiving recompense for repeated biological sampling (as with voluntary clinical trials). No other expenses would be allowed. Pennings, G. Commentary on Craft and Thornhill: new ethical strategies to recruit gamete donors (2005) xxvi Argues that increasing payment in a system where donors are identifiable will have little effect on the number of donors and that payments of 15 or even 50 are unlikely to constitute excessive inducement to donate. Nevertheless, he argues that donors should be rewarded in non-financial ways, such as social recognition of the donor as helper and encouraging recipients to express their gratitude by writing a letter to thanks the donor. In addition, donors could be told more about the pregnancies and births achieved with his or her donation. Finally, Pennings argues that if non-financial adaptations do not work to increase donor numbers then policy makers should consider: revoking anonymity and installing a intermediate double track system; or introducing a system of limited payment, but with restrictions of avoid exploitation. Daniels, K. Recruiting gamete donors: response to Craft and Thornhill (2005) xxvii The response challenges the notion put forward by Craft and Thornhill s that paying more money to donors will overcome anxieties regarding the removal of anonymity. It cites various findings from a 2004 review prepared for Health Canada, (the government department) which suggest that: The higher the age of donors, the less they are motivated by payment Fathers and or men in permanent relationships are less motivated by payment Married women with children are more likely to be attracted by altruistic egg donation than younger ones, who are more likely to be influenced by monetary considerations Altruism seems to be a greater factor in egg donation than sperm donation. Most women recruited as altruistic donors are opposed to payment Argues that an overview of the literature on payment provides pointers to the types of persons who should be targeted in an information sharing and non-payment system. Blood donation - recruitment Mellström, C. and Johannesson, M. Crowding out in blood donation: was Titmuss right? (2010) xxviii This study tests the claim made by Richard Titmuss in his 1970 book, The Gift Relationship, which argues monetary compensation for donating blood might reduce the supply of blood donors. Some argue that the introduction of monetary payments may reduce the intrinsic motivation to behave altruistically xxix. This hypothesis is often referred to as crowding out. To test this claim, Swedish researchers carried out a field experiment with three different treatments. The first treatment subjects were given the opportunity to become blood donors without any compensation, the second treatment subjects received a payment of SEK 50 Donation review October 19 Authority meeting Annexes part

207 (about $7) for becoming blood donors, and the third treatment subjects could choose between a SEK 50 payment and donating SEK 50 to charity. The results differed markedly between men and women. For men the supply of blood donors is not significantly different among the three experimental groups. For women there is a significant crowding-out effect. The supply of blood donors decreases by almost half when a monetary payment is introduced. There is also a significant effect of allowing individuals to donate the payment to charity, and this effect fully counteracts the crowding-out effect. Section 4: Egg sharing/ sperm sharing Gurtin, Z and Golombok, S (2011) Egg sharing: the experiences, feelings and attitudes of egg share-donors and recipients. Preliminary Report. Centre for Family Research, University of Cambridge The study (which is still research in progress) recruited past and current patients at the London Women s Clinic (48 donors and 38 recipients). It explores several aspects of egg sharing. Some of the preliminary findings from the study include the following: Demographic differences - There were few demographic differences between donors and recipients, who showed similar levels of education and were in similar types of occupation. (However, no data was gathered with regards their financial status.) Motivation - The main motivation for taking part in an egg share scheme for donors and recipients was the desire to have a baby (87% and 96% respectively) - The secondary motivation for donors was to get cheaper treatment (87%), with 49% saying that they could not otherwise afford it. However, 54% of donors said that they would have considered participating in egg-sharing, regardless of their ability to pay - The secondary motivation for recipients was that it is their last chance to have a baby (71%) - The third most important motivation for both donors and recipients was the wish to help someone else have a child (66% and 21% respectively) Thus, the study suggests that both self-interest and the desire to help others co-exist as motivating factors, although the desire to help was expressed to a lesser extent by recipients. Attitudes: personal experience of egg sharing for both successful/ unsuccessful treatment - Of those donors who did not conceive, but who know that the recipient conceived, they reported feeling 'very happy', or 'upset at first' and then felt 'they had done something amazing. (caveat - the figures are low - only 5) - Of those recipients who failed to conceive but who know that the donor conceived, all reported feeling 'happy for her' (again, the figure is low, only 4 patients) % of donors and 81.6% of recipients were glad to have taken part in egg sharing, with only tiny minorities expressing regret (2.1% of donors and 5.3% of recipients) - When asked to select from a list of words to describe egg sharing, the top ranking word chosen by donors (75%) was 'rewarding' (above negative words, such as 'stressful'). For recipients, the top ranking word was 'stressful' (60.3%) - Of those who succeeded in having children through egg sharing, 94.4% were glad to have taken part and 0% regretted it - Of those who had been unsuccessful 75% reported that they were glad they took part and 9.4% expressed regret. Donation review October 19 Authority meeting Annexes part

208 - Asked if, with the benefit of hindsight, they would take part in egg sharing again, 62.5% of patients who failed to conceived still reported that they would have and 21.9% said they wouldn't. Regulation % (of both donors and recipients, both successful and unsuccessful in treatment) endorsed egg sharing and agreed with the statement that 'Egg-sharing is a good response to donor egg shortages'. Thus, the study suggests that those involved in egg sharing arrangements (even when their own treatment is unsuccessful) have an positive attitude to it. K. K. Ahuja et al. Egg sharing and egg donation: attitudes of British egg donors and recipients (1997) xxx A survey of British women with some knowledge or experience of egg donation. Respondents included 107 people who had experience of egg donation and 110 who had made enquiries about it. It found that altruistic and self-interested motives co-existed. 86% of egg share donors and 79% of egg share donor enquirers felt that helping the childless was a significant motive to participate in donation. 75% of donors and 62% of enquirers sited self help as a motivating factor. The survey also found that 63% of egg share donors and 72% of egg share recipients with prior experience of egg sharing would do it again. 64% of donors and 62% of recipients did not agree with giving cash payments to donors. A significant minority of respondents (36%) wanted to see payment to egg donors allowed. 64% rejected the idea of cash payments. The study therefore concluded that patients thus drew a distinction between cash incentives (which were rejected) and treatment benefits (which they respect and need). Pennings, G. et al. Cross Border Reproductive care in Belgium (2009) xxxi The paper highlights that since 1 st July 2003, when Belgium began full reimbursement for six IVF cycles, the number of egg sharers has dropped by approximately 70%. This suggests that a large number of egg sharers were mainly motivated by the reduced cost of treatment. Pennings, however, notes that the motivation to donate is multidimensional and that care should therefore be taken in interpreting this result. Blyth, E. and Golding, B. Egg sharing: a practical and ethical option in IVF? (2008) xxxii The article outlines some of the empirical and ethical issues raised in relation to egg sharing. This includes evidence about clinical outcomes and concerns about: donors subsequently regretting their decision the risk of invalidated consent the commodification of reproductive tissue The paper argues that there is limited evidence in relation to the clinical and psycho-social outcomes and hence that informed judgement on empirical grounds cannot yet be made. It suggests that Much more needs to be known regarding the longer term experiences of donors and recipients, their children and other family members and the experiences of Donation review October 19 Authority meeting Annexes part

209 donors and recipients who ultimately remain childless if the implications of egg sharing are to be fully understood Rapport, F., Exploring the beliefs and experiences of potential egg share donors (2003) xxxiii The study explored the beliefs and experiences of 11 potential egg share donors from a fertility clinic in the UK. Concludes tha, women are prepared to undertake repetitive treatment attempts despite continued failure to conceive and knowledge of a slim chance of a positive outcome. The British Fertility Society (BFS) Working party on sperm donation services in the UK (2008) xxxiv The British Fertility Society working party made the following key points: There is inadequate access to sperm donation services in the UK. A minimum of 500 sperm donors are required per annum to meet demand. Current levels of donor recruitment fall well short of this need (fewer than 300 registered in 2006). The report discusses various clinic schemes aimed at increasing donor availability, including sperm sharing and mirror exchange programmes. Mirror exchange programmes, which have taken place in Italy, involve the male partners of females awaiting donor egg treatment donating their sperm in order for quicker access to treatment. The report states that there is a Paucity of data around the emotional fall-out through such schemes and significant questions of risks of coercion exist. It recommends that research on sperm sharing schemes be facilitated to permit further evaluation of such programmes. Ferraretti, A. et al. Semen donor recruitment in an oocyte donation programme (2006) xxxv The article describes a system for recruiting gamete donors at the Reproductive Medical Unit in Bologna, Italy. The system is a partial application of the mirror exchange system, whereby the male partner of a couple donates sperm and, in return, receives the guarantee that his partner benefits from a greatly reduced waiting time for donor oocytes. The paper argues that this system avoids payment-related ethical objections. For references see end of document. Donation review October 19 Authority meeting Annexes part

210 Annex F: Comparative systems of donation Comparative systems of sperm and egg donation and other types of donation Systems of expenses and compensations within the European Union The following data was gathered from the Report on the Regulation of Reproductive Cell Donation in the European Union (2006) xxxvi, and from direct enquiries to domestic authorities. The report states that the Commission considers it essential to encourage Member States to incorporate into their national legislation the principle of voluntary and unpaid donation. It regards the paying of substantial fees to obtain human egg cells to be against the principles expressed in the Directive 2004/23/EC on Tissues & Cells. Country Belgium Czech Republic Denmark Systems of compensation Donors may receive expenses linked to travel or for loss of earnings. In egg donation cases, they can also receive expenses related to a hospitalisation. Regulated by binding guidelines. Sperm donors receive reimbursement between Czech Crowns ( 10-20) which covers wage losses only. Egg donors receive between 8,000 15,000 Czech Crowns ( ) which covers: compensation for loss of wages, time, disruption and discomfort during the medical procedure. However, these sums are neither officially recommended nor legally binding. Sperm donors receive only a small compensation for the use of their time, expenses for transportation etc. Germany Estonia Greece Spain Finland France Hungary Sperm donors receive Euros ( ) for the examination and their time. Egg donation is prohibited by law. Compensation is small and only covers travel/accommodation relating to the process of donation Egg, sperm and embryo donations are anonymous and not-forprofit. Egg and sperm donors can be compensated for travel expenses and loss of income incurred by the donation procedure. In 1998, the National Commision of Assisted Reproduction established a compensation of 100,000 pts (600 ). In 2009, the Commision revised the issue and established a compensation of 900. xxxvii Further details are given below. Section 21 of the Act on Assisted Fertility Treatments stipulates that no remuneration may be given or promised for the donation of gametes. However, egg and sperm donors may be compensated for expenses and loss of income. In addition, the egg donor may be paid a sum of no more than 250 Euros per donation as a compensation of inconvenience. No compensation of any kind may be paid to embryo donors. Donors receive no compensation besides the reimbursement of travel expenses. Legislation states that remuneration for donating reproductive cells shall not be requested or provided. Donation-related necessary and certified costs of a donor, including loss of income, Donation review October 19 Authority meeting Annexes part

211 Italy Slovenia Portugal Croatia Sweden United Kingdom shall be reimbursed. Legislation prohibits donation. ART can only be carried out within homologous male-female couples who are over the age of 18 and either married or living together. Giving and receiving remuneration or any other benefits as compensation for donated reproductive cells is not permitted. Egg and sperm donors are entitled to the reimbursement of costs associated with travel to and from and any stay at an ART clinic as well as with the examinations and gamete collection. Portuguese legislation established that the donation of cells and tissues is voluntary, altruistic and selfless. Nevertheless donors may receive a strictly limited payment to reimburse expenses incurred or losses directly arising from the donation. For each cycle of egg donation, donors may receive a maximum of EUROS; for each course of sperm donation EUROS. There is no re-imbursement for embryo donation. No compensation for egg and sperm donation. Embryo donation is not permitted. Compensation donors receive for donation of sperm or embryo is small. Embryo donation is illegal. Compensated for loss of earnings (wherever they live) up to a daily maximum of but with an overall limit of 250 for each course or cycle of donation. Reimbursement of all reasonable expenses incurred in the UK in connection with donating gametes or embryos (for example a standard-class rail ticket by the most direct route), but not excessive expenses if these would be benefits in themselves. Report from the Commission to the council and European Parliament on the promotion by Member States of voluntary unpaid donation of tissue and cells (2006), Commission of the European Communities xxxviii Report presenting a survey carried out in 2005 by the Health & Consumer Protection Directorate-General of the European on the regulatory status of reproductive cell donation in the Member States. The report states that Under the principle of voluntary unpaid donation of tissues and cells, donors cannot be remunerated but may receive compensation strictly limited to making good the expenses and inconvenience related to the donation. The Member states define the conditions under which compensation may be granted. The survey found that: - Fifteen Member States currently allow for donors to be compensated. Nine do not. - Of the countries allowing donor compensation, the majority have defined the conditions by law or regulations (except Denmark, Ireland and Sweden). - All 15 Member States allow for the reimbursement of travel expenses Member States reimburse loss of earnings; however the conditions of these differ. Egg donation should involve incentive to the donor in line with current regulations, Presentation by Prof. Antonio Pellicer at the COGI Conference Berlin, 2010 xxxix In Spain egg donors can receive compensation for: Physical harm and discomfort Travel expenses Donation review October 19 Authority meeting Annexes part

212 Work expenses (lost hours) The method used to calculate the level of reimbursement egg donors may receive is outlined in the two slides below: Figure 1: Egg donation should involve incentive to the donor in line with current regulations, Presentation by Prof. Antonio Pellicer at the COGI Conference Berlin 2010 Figure 2: Egg donation should involve incentive to the donor in line with current regulations, Presentation by Prof. Antonio Pellicer at the COGI Conference Berlin 2010 Donation review October 19 Authority meeting Annexes part

213 Compensation system within the United States and Canada 2008 guidelines for gamete and embryo donation, The Practice Committee of the American Society for Reproductive Medicine xl The report recommends that monetary compensation for a donor should reflect the time, inconvenience, and physical and emotional demands and the risk associated with egg donation and should be at a level that minimises the possibility of undue inducement of donors and the suggestion that payment is for the eggs themselves. The Committee suggests that payment should also be prorated based on the number of steps completed in the procedure. Financial compensation of oocyte donors, The Ethics Committee of the American Society for Reproductive Medicine (2007) xli The report raised two ethical questions: do recruitment practices incorporating remuneration sufficiently protect the interests of egg donors, and does financial compensation devalue human life by treating eggs as property or commodities? It concluded that although potential harm must be acknowledged and addressed, financial compensation may be defended on ethical grounds. This was based on the grounds that providing financial incentives increases the number of egg donors, which in turn, allows more infertile persons to have children; that the provision of financial or in-kind benefits does not necessarily discourage altruistic motivations; and that financial compensation advances the ethical goal of fairness to donors. The report suggests that the failure to provide financial or in-kind benefits to egg donors may demean their significant contribution. The report recommends that the compensation be structured to acknowledge the time, inconvenience, and discomfort associated with screening, ovarian stimulation, and egg retrieval. Total payments to donors in excess of $5,000 require justification and sums above $10,000 are not appropriate. To discourage inappropriate decisions to donate oocytes, the report recommends that programs adopt effective information disclosure and counselling processes. Donors independently recruited by prospective egg recipients or agencies should undergo the same disclosure and counselling process as donors recruited by the program. Treating physicians owe the same duties to egg donors as to any other patients. Programs should ensure equitable and fair provision of services to donors. Canada The Assisted Human Reproduction Act (AHR Act), Bill C-6, received royal assent from the Canadian Parliament on 29 March It prohibits remuneration through monetary payments or benefits-in-kind to gamete donors, except for a reasonable reimbursement of receipted expenditures incurred during the course of gamete donation. International examples of egg sharing practice The following information was gathered from various sources, including contact with domestic authorities. Belgium: Egg-sharing by itself is not forbidden by the Belgian law, but anonymous donation remains the general rule. This system may reduce the waiting time for egg reception. Finland: It appears that egg sharing practices are rarely, if ever, practiced in Finland. United States: A report published by The Ethics Committee of the American Society for Reproductive Medicine in 2007 xlii states that few detailed descriptions of US egg sharing programs have been published. Donation review October 19 Authority meeting Annexes part

214 The report states that Egg sharing programs reportedly exist in a number of other countries, including the Israel, Denmark, Australia, Spain, and Greece. They state that egg sharing programs should formulate and disclose clear policies on the eligibility criteria for participants and on how oocytes will be allocated, especially if a low number of oocytes or oocytes of varying quality are produced. Sweden: Egg sharing is not allowed. Russia: Egg sharing is not allowed in Russia. However, anonymous egg donation and known egg donation is. Portugal: Although legally possible, there are no records of egg sharing in practice. There is no specific policy for egg sharing. Greece: Egg sharing is not considered compensation and up to 30% of a donor s treatment expenses can be paid. It is up to the individual parties to agree limits on the number or percentage of eggs to be shared. Israel: Only eggs donated by women who themselves are undergoing assisted reproduction is allowed. The government subsidises all egg donation cycles through the medical insurer of the recipient, whether or not the procedure is performed in a public or private institution. Comparison with compensation and payment in clinical trials and blood donation The Nuffield Council of Bioethics consultation document Give and take? Human bodies in medicine and research xliii, The Nuffield Council of Bioethics consultation paper outlines the regulatory frameworks for blood donation and first-in-human trials. The current law in the UK permits different forms of incentive, compensation or recognition to encourage people to provide different forms of bodily material or participate in a first-inhuman trial: Blood, organs and tissue for transplantation: no direct payments permitted. Living organ donors can claim directly incurred expenses, including loss of earnings, as can bone marrow donors. Regular blood donors receive awards, such as colour-coded donor cards, key fobs and certificates in recognition of their contribution. Participants in first-in-human trials: payments are permitted, with the level of payment to be offered set by those running the trial, subject to the approval of the relevant ethics committee. Industry guidance recommends a payment model based on the minimum wage and emphasises that payment must never be related to risk. Association of the British Pharmaceutical Industry - Guidelines for Phase 1 Clinical Trials (2007) xliv The Association of the British Pharmaceutical Industry state that subjects (both healthy subjects and patients) who volunteer for phase 1 trials should be paid more than just any expenses that they incur. The amount should be related to the duration of residence on the unit, the number and length of visits, lifestyle restrictions, and the type and extent of the inconvenience and discomfort involved. As a guide, payments should be based on the minimum hourly wage and should be increased for procedures requiring extra care on the part of the subject or involving more discomfort. Payment must never be related to risk. Donation review October 19 Authority meeting Annexes part

215 Comparison with compensation and payment in live organ donation The Human Tissues Act 2004 xlv The Act forbids the offer or payment of any inducement for the supply of a human organ but allows living organ donors to receive reimbursement of expenses, such as travel costs and loss of earnings, which are reasonably attributable to and directly result from donation. The Human Tissue Authority s Code of Practice 2, Donation of solid organs for transplantation xlvi The Code states that donors should not be reimbursed directly by the recipient or by their family or friends. The HTA requires that checks are made to ensure that no other payment or reward is made and that the donor does not profit from the donation Guidelines on the Reimbursement of Living Donor Expenses by the NHS, Department of Health xlvii The levels of reimbursement are set by the Department of Health s guidance. The guidance states that any payments to living donors should ensure that, within reason, the donor is no worse off as a result of the donation, but neither should they gain any financial advantage. Reimbursement of personal expenses such as transport costs should be repaid in full on provision of receipts or in the case of e.g. mileage at an agreed rate such as the standard NHS rate. Comparison with other types of donation Blood stem cell, bone marrow or cord blood transplant - Anthony Nolan, Reimbursement policy Reimbursement provided by the Anthony Nolan Trust must fall within strict guidelines. Donors receive reimbursement for expenses, including the transport costs for the donor and a companion, food for the donor and their companion up to the value of 25 per person per day. Receipts are required prior to the reimbursement. Donors will be reimbursed loss of earnings if they are required to take unpaid leave from work in order to attend a medical or donation. The trust requires a signed letter from an employer, giving the gross total loss of earnings accrued during the time off for donating and/or for the medical examination. Anthony Nolan will reimburse donors for the medical and collection/harvest days plus 2 working days post a PBSC donation and a week post a Bone Marrow donation. The gross amount stipulated in the letter (up to a maximum of 200/day) will be reimbursed directly to the employer unless otherwise indicated by the employer in their letter.. Donation review October 19 Authority meeting Annexes part

216 Annex G: Ethics seminar report Ethical Issues in Gamete and Embryo Donation Ethics seminar report On 28 January 2011, the Human Fertilisation and Embryology Authority (HFEA), in partnership with the Arts and Humanities Research Council (AHRC) and the Society for Applied Philosophy (SAP) brought leading philosophers together with policy makers and interested parties to explore the ethical principles involved the HFEA s consultation Donating sperm and eggs have your say. The seminar provided intellectual space for academic philosophers to present an ethical analysis of the complex issues involved in the HFEA s consultation with the eventual aim of helping inform policy making in this area. Around 60 delegates, from a range of fields 1, attended to debate the ethical issues involved specifically around donor compensation, consent and donation between family members. Some of the issues raised, such as payment for donation (prohibited by UK law), went beyond the scope of the consultation. However, the discussion helped to set the consultation questions in a wider ethical context Chairing the seminar was Professor David Archard, Chair of SAP and Deputy Chair of the HFEA s Ethics and Law Advisory Committee. Academic presentations were given by: Professor Richard Ashcroft, Professor of Bioethics at Queen Mary, University of London Professor Stephen Wilkinson, Professor of Bioethics at Keele University Dr Neil Manson, Senior Lecturer at Lancaster University Professor Michael Parker, Professor of Bioethics, Director of the Ethox Centre at Oxford University Donation and incentives The consultation asks whether it should in future be possible to offer donors compensation for inconvenience or whether we should retain the current system of reimbursing donors for expenses and loss of earnings only. One key ethical issue is whether offering compensation for inconvenience would incentivise or even coerce - people to donate. Speakers comments The role of incentives in sperm, egg and embryo donation and its consequence for social relationships and consent was explored by Professor Richard Ashcroft and Professor Stephen Wilkinson. Professor Ashcroft began by examining the moral quality of a person s motivation to donate gametes and whether this would be affected by the introduction of monetary incentive. This raised a number of philosophical questions including: Would the introduction of monetary incentives affect the voluntariness of donation? Would it matter if a person does a good thing (by donating) for a bad reason (for money)? Would money incentives affect how a donor viewed themselves, or how the resulting child viewed the donor? And, if a person were motivated by money, does this matter and should public policy regulate motives? 1 Delegates included medical professionals, legal experts, patients groups, HFEA Authority members and academics with a strong interest in the policy area. Donation review October 19 Authority meeting Annexes part

217 One consequence of introducing monetary incentives may be an impact on the values of society as, rather than donating out of a sense of altruism and mutual responsibility, people may begin to see gametes as objects for sale. It might also attract a different type of donor given that people who have less money may be more willing to donate in return for monetary benefit. Professor Wilkinson followed, exploring the possible impact of inducements on the quality of donors consents. He pointed out that inducements do not necessarily invalidate consent; people do things for monetary gain all the time (such as going to work), often in less than ideal conditions, but we do not usually think that their consents are invalid. The big question then is whether there are any specific features of sperm, egg, or embryo donation, which make them fundamentally different from being paid for working. Egg sharers can still validly consent to donate, despite the potentially strong incentive to do so. However, he suggested that women who could not otherwise afford fertility treatment may be the victims of a systemic form of coercion, if their need to egg share arises from an unjust absence of NHS funding. Professor Wilkinson argued that the most plausible and widely accepted argument for permitting egg sharing is the lack of additional risk for the donors (as they would be going through a cycle of treatment anyway). The risks faced by donors who donate altruistically and those who may donate to receive compensation for inconvenience would, however, be the same. Therefore, if a decision were made to allow egg sharing, but not to allow compensation for inconvenience, and if the basis for this was because donation is risky, then it would be hard to justify not also prohibiting altruistic donation (since this is as 'risky' as donation without compensation). Or, to put it another way, if altruistic donation is allowed, and donation with compensation for inconvenience carries no more risks than altruistic donation, then why not allow both? Discussion The focus of discussion was almost exclusively on the ethical issues involved in egg sharing as a policy which may incentivise women to donate their eggs in exchange for free or reduced fertility treatment. Participants briefly discussed the ethical issues involved in compensating donors for the time and inconvenience of donating their sperm or eggs. There were concerns that increasing compensation could lead to a slippery slope of creating a market place in gametes. It was suggested that gamete donors be treated the same as blood or living organ donors who do not receive a financial compensation for their donation. Others however suggest that the level of risk involved in the donation should be considered when calculating the level of compensation a donor receives. A mixture of views was expressed regarding egg sharing. Some considered egg sharing a beneficial practice both for the donor who receives reduced price or free treatment whilst helping others, and for the recipient who has access to donor eggs; others considered it a coercive incentive to donate. A perceived inconsistency in policy was highlighted, where egg sharers can receive free or reduced-price treatment for their donation whilst egg donors can receive no benefits. It was suggested that, in order to achieve consistency, one could compensate egg donors and egg sharers to the same value, be it financial compensation or reduced fertility treatment. Donation review October 19 Authority meeting Annexes part

218 Participants discussed whether there is a moral difference between a financial incentive to donate and receiving benefits in kind (egg sharing). Some participants felt that there may be a relevant distinction between the two policies given that, unlike altruistic donation; egg sharing may involve less risk to the donor, who may already be going through fertility treatment. Some however argued that instead of egg sharing all donors should be given increased compensation. Concerns were also raised on the long term risk for egg sharers who may later regret donating, especially if their treatment is unsuccessful. Due to the current lack of long term evidence on the implications of egg sharing some suggest that, on the basis of no reported harm, this should continue. However given the lack of evidence, others suggest a more restrictive approach until longer term research can reveal the consequences of egg sharing. Consent and coercion in family donation The consultation asks how donation between family members should be regulated. Currently there are no specific rules on donation between family members. Instead, there is general guidance on donation which covers the welfare of the future child, consent and counselling. One key ethical issue is the potential for donors to be pressurised or coerced by family members to give their eggs or sperm. Speakers comments Dr Neil Manson explored the relationship between consent and coercion in gamete donation, specifically between family members. Different forms of coercion may exist in family donation, from the most severe cases involving serious and credible threats to an individual and the more nuanced forms of coercion which may exist within families. An example of this is a person pressurised to donate out of a sense of moral obligation to a family member. The problem of detecting and avoiding coercion where one family member is donating to another family member is complex and requires further research. Professor Michael Parker followed with a presentation exploring the extent to which family donation may be morally distinct from non-family donation and outlining a number of moral reasons for allowing or not allowing family donation, including a number of moral concerns unique to family donation. His first moral reason for allowing family donation is that it may reflect what patients want, illustrated by the growing number of people donating to their family members - even though there are clearly cases in which this may be a result of patients choosing to avoid the long waiting times for unknown donors; rather than reflecting an actual preference for receiving donor gametes from a family member. His second moral reason for allowing family donation arose from the benefit some patients receive from knowing the donor and in maintaining a genetic link to the resulting child. Thirdly, an important reason for allowing family donation may arise out of the fact that it may represent an expression of love or the meeting of an important moral obligation between family members. Professor Parker went on to outline a number of moral concerns unique to family donation which may, depending upon the facts of the case, sometimes provide reasons for not allowing it. These included the potential for a donor to be pressurised into consenting to donation, the emotional impact on the resulting child and the increased risk of inherited disorders. Professor Parker suggested that some these moral concerns may have the potential to be amplified in cases of inter generational donation for example where a mother who asks her daughter to donate some of her eggs for use in her mother s treatment. He suggested this form of donation may on occasion for example present the risk for a donor to Donation review October 19 Authority meeting Annexes part

219 be pressurised into consenting to donation and in turn increase the potential for negative family relations and impact on the resulting child. Professor Parker concluded that the arguments in favour of allowing family donation - subject to assessment on a case by case basis - seemed stronger than those against. Discussion Following Dr Manson s presentation some considered the term coercion too extreme for the majority of family donation cases, where issues involving family pressure, which stop short of coercion, are more common. Whether a person under pressure gives their consent voluntarily and to what extent a person s own moral pressure to donate plays a role were explored. One argument was that being subject to such pressures is part of everyday life and are not a moral concern which needs regulating. Concerns were raised over the possible psychological impact of coercion within a family on the resulting donor conceived person. Others suggested that the consequences of donation not taking place, i.e. there would be no donor conceived person born, should be weighed against any possible negative impact on the potential child. Also family donation may be more desirable for patients from ethnic minorities where there may be a lack of availability of donors from the same ethnicity. It was suggested that lessons on protecting individuals from coercion could be learnt from the regulation of live kidney donation. Systems such as the independent assessment of kidney donors have been developed to protect donors from unwillingly donating kidneys to a family member. It was questioned how successful such systems could be given coercion, by nature, is difficult to detect. Participants emphasised the important role clinics should play in identifying signs of unreasonable pressure from family members on a prospective donor. Clinics currently provide counselling to prospective donors and many clinics already have systems in place to deal with family donation. However it was suggested that additional counselling support could be offered to all family members affected by the donation, including telling people the importance of being open with the resulting child about how they were conceived. Some participants suggested additional guidance/health professional guidelines may be required for clinics around counselling for family donation as there is currently a divergence of practice within clinics around the level of counselling support offered. However, of those participants who expressed a view, the majority would not like to see family donation regulated more than other forms of donation. For some, the practice of family donation should be left to patients in consultation with clinic staff. Following Professor Parker s presentation, participants discussed the importance of the quality of relationships within families involved in donation and the willingness for the family to be open with the resulting child. Small scale research on whether families are open with the donor conceived child suggests that some families struggle with telling the child about their origin and more support for those families later on may be needed. Other cultures may however be less agreeable to telling. Therefore, there cannot be a one rule fits all solution. Some suggested however that currently there is a lack of support available for those undergoing family donation. It was suggested that lessons on protecting the donor conceived people resulting from family donation could be learnt from comparisons with intra family adoption. However participants emphasised that more research is needed which follow up on children born following family donation. Donation review October 19 Authority meeting Annexes part

220 The key themes of the day Whether or not there is a moral difference between financial incentives to donate and receiving benefits in kind (egg sharing), with various views being express both ways. There is little long term evidence available around the implications of donation on patients, donors, donor conceived people and wider families. In light of the current lack of evidence some argue policy around donation should be permissive (ie, not impose barriers in absence of evidence of harm) whilst others favour more restrictive policy, or a more cautionary approach to protect the interests of donor conceived people. Family donation is morally distinct from non-family donation, particularly intergenerational donation. It is problematic for clinics to detect and avoid coercion within family donation. It is unclear at what point pressure on a person s consent becomes morally problematic. If guidance were introduced around family donation it should come from health care professionals. Policy makers should focus on the impact of any policy change for the donor conceived people. Thank you We would like to thank the delegates for taking the time to attend the seminar and for their intelligent and useful contributions throughout the day. Particularly, we would like to thank the four speakers who gave interesting and thought-provoking presentations on the myriad of ethical issues involved in the HFEA s consultation, Donating sperm and eggs have your say. Special thanks go to the Arts and Humanities Research Council (AHRC) and the Society for Applied Philosophy (SAP) for their contributions, which made this successful and valuable seminar possible. Donation review October 19 Authority meeting Annexes part

221 Annex H: Patients focus group report Donating sperm and eggs: have your say Focus group with donor conception patients, 30 March 2011 Introduction On 30 March 2011 the HFEA held a focus group with patients undergoing donor conception treatment to discuss the HFEA s public consultation: Donating sperm and eggs: have your say. Six women attended the focus group. All had been through treatment with donor eggs, sperm or embryos. Most were funding their treatment privately, although one was receiving NHS funding. One member was receiving treatment abroad and one had received sperm donation both inside and outside a licensed centre. Changing landscape of donation When asked what associations are invoked by the phrase donating sperm and eggs, participants immediately focussed on their views around the contrast between eggs and sperm donation. They discussed how egg donation is more involved than sperm donation and how it was perceived to be emotionally easier for men to give away their sperm than for women to give away their eggs. When questioned on how much participants know about sperm and egg donation, most felt they knew a lot more about egg donation than sperm donation. People felt that, whilst they didn t really know what is involved in sperm donation, there was a sense that it had changed a lot since the days people did it for a bit of extra money. People were concerned that the removal of anonymity puts people off donating, resulting in very long waiting lists for donor treatment. There was a strong sense in the group that not enough effort is put into recruiting donors and that if there was more awareness of donation, more people would do it. It was felt that people in the UK can be squeamish about donation, whilst in other European countries, notably Spain, people are more open and accepting. In general, the group felt that donation is a generous and admirable act. When questioned about what motivates donors, some thought that donors were likely to want to help because they have seen friends or family experience infertility or that donors wanted to help family or friends directly. The idea of passing genes on was also felt to be a motivating factor. When asked what the group thought about the donor shortage and the best way to address it, the group suggested the following: Ensure the ten family limit is met More advertising Clinics to open at hours which are more suitable for donors Clinics to promote donation to patients Two members of the group had sought treatment outside licensed centres, one at a clinic abroad and one through an unregulated sperm donor website. The latter patient found it had: worked well, it s a leap of faith but he [the sperm donor] was very professional, he s a professional donor, he had lots of information about how to do it. Both patients sought alternatives in order to access treatment quicker: Donation review October 19 Authority meeting Annexes part

222 When you get over 40 you think no, I need it now. The group also felt that the price of fertility treatment poses a barrier to receiving treatment in UK licensed centres: Clinics know there is a shortage and that there is a commodity we want and therefore they put the prices up. It would be good if prices were regulated. If we weren t charged so much, people wouldn t make desperate decisions ie go outside regulated clinics. Compensation There were mixed feelings in the group about what donors should be compensated for. There were strong feelings from some that donors should be paid, but concern that the extra cost of recruiting donors would be passed onto the patient: I personally think they should get paid...but I worry in doing so it will get added on to the already massive bill for receiving it The group was concerned that compensation for inconvenience may motivate unsuitable donors to come forward or mean that donors would not be honest about their genetic history. Such fears would be mitigated to an extent by the screening process that clinics put donors through: The [donors] have to go through screening process; it s up to clinics to decide if they are suitable Despite this there was some concern about how effective the screening process could be if donors are minded to lie. With regard to the issues of what the right motivations are, there were mixed opinions expressed. One participant articulated the issue as follows: The thing about altruism is that it s a bit like trying to pin down a cloud, you can t pin down how someone feels and someone might feel altruistically at the time they donate and then five years later find themselves without a partner and think, actually, now I feel jealous or I feel angry I did that. Or someone might donate for money to pay off a debt and then 10 years later think that s the best thing I ve ever done. You can t really pin down people s motives The group did feel that the donor s motives were relevant, especially given the removal of donor anonymity means that the donor will need to be prepared to be contacted by their donor offspring. There was some concern about how the donor conceived children would feel if they knew their donor was motivated by money: I worry about what the child might feel when they ask about why the donor donated, if you say because they got paid 5000 they might feel really, really upset that it wasn t done because of the right reasons. How should we compensate donors? When considering the system of compensation, again views were mixed, although there was some support for a flat amount for all donors to cover loss of earnings and inconvenience: I don t think compensation should be based on person s income, you can t put a different value on sperm from a banker or waiter. Donation review October 19 Authority meeting Annexes part

223 Another reason for a flat fee is to avoid a situation where the compensation is linked to the donor s characteristics for example their education levels or physical appearance. It was acknowledged that it would be hard to set an amount that would not motivate some people. For example a fee of 1000 for loss of earnings and inconvenience may not act as an incentive to a lawyer but may motivate someone who is unemployed. It was also questioned whether money would not be better spent by the clinic in providing a more accessible service to donors by opening out of normal office hours. Suggestions for how much donors should be compensated for loss of earnings and inconvenience ranged from 1000 for egg donors to as low as possible. The group was broadly in agreement that donors should get remunerated for their effort, but that there is a balance between compensating donors and money not being the sole reason for donation. The group had mixed opinions on whether egg and sperm donors should be compensated differently: I would say a flat rate around 1000 for egg as more invasive and may be 600 for sperm It s a big effort for women it s slightly disrespectful to expect a woman to do that for nothing - I think you should get paid for putting that much effort it On the other hand it was felt that sperm donors dedicate a lot more time to donating than egg donors and arguably they make a bigger commitment as they can create more offspring than egg donors. There was concern that, if compensation to egg donors does increase, there is a need to put safeguards in place to prevent women donating on multiple occasions and risking their health: There is a need to limit the amount of times women can donate, to guard against the possibility people donate for money. The group was also concerned that the extra cost in recruiting donors was spread evenly amongst recipients and not loaded onto the first person who gets treatment, to make sure they get the clinic gets its money back. Benefits in kind The group expressed mixed feelings on egg sharing. On the one hand people felt that women may share their eggs because they feel like they have no other choice: I think it s quite sad egg sharing, you re having to give away something that you desperately want yourself. At the same time, the group did feel that egg sharing gives women an option that they wouldn t otherwise have: It does have its advantages you could think of it as enabling her [the egg sharer] to have cycle that she wouldn t be able to do. Again, the group expressed some concern that benefits represent an incentive: It s along same line as payment you re getting something for free instead of money, if you agree sharers should [receive benefits], it s the same principle as paying donors. Donation review October 19 Authority meeting Annexes part

224 It was also noted that the offer of free or reduced treatment may mean some egg sharers lie about their family health in order to get through the screening tests. One participant had, after agreeing to receive gametes from a sharer, discovered that the donor had a medical condition which was not initially discussed with the clinic. In thinking through potential differences between paying donors and offering substantial reductions in treatment costs, one participant presented the dilemma as follows: You can look at ethics from both sides. On the one hand donors are putting themselves through surgery for no medical benefit of their own where as egg sharers are going through surgery anyway. But if they re [sharers] are doing it because they re desperate, are they going to regret it in the future? But most people think it through quite carefully and if it is their only option, why take that away from them? The group also discussed the 35 year age limit for egg donors and sharers and felt the limit should not be so strict: I would have shared my eggs if I had the chance. I produce a lot of eggs but can t give them to someone else as I m nearly 40. With regard to other benefits in exchange for donation the group discussed the possibility of a patient/s being moved up the waiting list in exchange for donating. One member of the group thought this option was unfair as it meant a couple without joint fertility problems would be prioritised ahead of couples where both partners needed fertility assistance. Others in the group felt it was a fair option as their donation would mean a third party would receive treatment and therefore reduce the waiting list for everyone. Value of benefits in kind The group discussed some potential downsides to capping the value of benefits in kind. The group questioned whether a cap on the value of benefits would limit patients choice of clinic: Would you have to go to cheapest to get most value for money? If you re giving your eggs you need to be able to go to the clinic you want to go to. You re already doing something really generous, why should your choices be reduced? There was a strong sense in the group that prices for treatment already vary widely between clinics and there is lack of public funding for fertility treatment, which makes access to treatment expensive and unobtainable to many. This high cost of treatment and lack of funding was seen as the main reason behind the popularity of egg sharing. The group felt that, rather than capping the value of egg sharing, the cost of treatment should be regulated by the HFEA and the amount of money clinics can charge for treatment should be capped. Family limit on donation The group agreed that a family limit was necessary and that it should be kept low: [10] is a lot of families to potentially meet later in life. It can get complicated to be related to people you don t know about, especially in small areas. It was also highlighted that the amount of families created from one donor is currently eleven, including the donor s own family. Some members thought that, in an ideal world, the donor limit would be lower than ten but due to the current shortage we can t really lower it. Donation review October 19 Authority meeting Annexes part

225 The group acknowledged that whilst it might make financial sense for clinics to raise the limit, it is likely to be in the interests of donor conceived people to keep it at ten: If you know you re donor conceived it s going to be difficult, but is a reality of being a donor conceived child. The group also thought that clinics should put more effort into meeting the ten family donor limit and if more effort and resources was put into the recruitment of donors, raising the limit wouldn t be a priority. Donation review October 19 Authority meeting Annexes part

226 Annex I: Parents focus group report Donating sperm and eggs: Have your say Focus group with donor conception parents, 28 March 2011 Introduction On 28 March 2011 the HFEA held a focus group with patients and parents of donor conceived people to discuss the HFEA s public consultation: Donating sperm and eggs: have your say. Eight women attended the focus group: 2 of which have children conceived from donor eggs, 5 of which have children conceived from donor sperm and 1 whom had unsuccessful treatment. Changing landscape of donation Participants were asked what sorts of words/phrases/associations spring to mind in relation to donating sperm or eggs. Participants stated the following: Altruistic people who do this, to enable people like us to have families are truly wonderful Charity Gift of life Men give a lot of time to donate Medical - there s something clinical about it Expensive Shortage Naïve - it s a very complex gift The group discussed the importance of counselling on the long term implications of donation and the support which donors should receive from clinics. The group agreed that awareness of donation needs to be raised in order to overcome the perception that donors can be financially liable for the upbringing of children. The following were suggested as ways to address the donor shortage: Increase awareness of donation currently advertising for donors is much too under the carpet and too discrete, personal experiences of donors could be used and more parents should tell their children they are donor conceived. We re in the minority of people who want to talk about it even people that have been lucky enough to have children by donor don t tell their children. Employers should give donors time off work to donate and one participant suggested that there should be legislation to allow this (ie, in the same way as maternity leave). Some clinics should treat donors better. The group felt that the way sperm donors are treated is the biggest barrier to donation - sperm donors are treated really badly and its one of the major contributing factors. There should be centralised clinics which are specialists at recruiting donors. More donations could be imported. One participant felt that there would be more donors if there was a two tier system for donation, which would allow donors to be identifiable or anonymous. She referred to the fact that currently patients are going abroad for treatment with gametes from anonymous donors. Donation review October 19 Authority meeting Annexes part

227 The group discussed whether or not children should be told they are donor conceived. The group felt that there s a mixture of children who are happy and unhappy about being donor conceived and not being able to trace their donors. They referred to a body of research which suggests its worse for children if they find out they are donor conceived later in life. Donor compensation Compensation for expenses and loss of earnings One participant was against any forms of payment above expenses, as she felt that it would not take a lot of money to induce people to donate. There was a general consensus that having a blanket rate to compensate all donors may induce people to donate and therefore may encourage people to lie about their family history. There was discussion around where to draw the line on what should be classed as expenses. One participant felt that the current limit for loss of earnings is too low. The group reached a general consensus that loss of earnings should be paid, provided that there is evidence e.g. a payslip. They felt that there should be a cap on loss of earnings, but that it should be reasonable in order to allow, in most cases, compensation for true loss of earnings, eg, 150 a day: If you re paid the same level as jury service I reckon most people would be out of pocket that work its peanuts. You ve got to compensate for true loss of earnings; in this economic climate you cannot expect people to do it. They felt that donors not in work should be able to claim for other costs they have incurred e.g. childcare, loss of unemployment benefit if they missed signing on that week. The group felt that tokens of thanks (eg, vouchers and bunches of flowers) would be a good idea. The group felt that more people would donate if clinics were open in the evenings and at weekends; then there would be less of a need to compensate for loss of earnings (especially for sperm donors). They felt that the way donors are treated and access to clinic services is more important that compensation for loss of earnings: We should be thinking about ways in which we could open the process of donation and make that less 9-5, in office hours. And make donors feel more special raise their status by making the organisation work round them so that they feel really valued. References were made to blood donation: Take a leaf out of the book of blood donation put gamete donation on the same foot. However, one participant pointed out that not everyone is affected by gamete donation, so it may not be useful to make these comparisons. Compensation for inconvenience It was felt that we need to know more about what motivates donors to see if inconvenience payments would motivate them. There were concerns about the cost of compensating donors being passed directly to patients. They felt that patients should pay a flat treatment fee to the clinic, irrespective of levels of compensation the donor has received. The group was asked how donor conceived children might react to the fact that their donor may have been compensated in exchange for donating. It was felt that donor conceived children have different views, so it was hard to generalise: Donation review October 19 Authority meeting Annexes part

228 I think that, the future children, some of them won t mind if the donor s been paid and some of them will mind, but if you want to play it safe then it s better not to introduce payments. Benefits in kind Participants were asked about their experiences and their feelings about donors receiving reduced treatment costs. A variety of views were expressed. One participant felt that it is borne out of desperation, that egg sharing disadvantages patients who can t provide eggs and that egg sharers have less chance of getting pregnant than other women receiving treatment. Another participant felt that as egg sharing allows some women to receive treatment who otherwise couldn t afford it then, on this basis, compensation in addition to expenses is valid. One participant felt that egg sharing is the lesser of two evils, because if egg sharing in the UK was stopped the availability of donated eggs would drop significantly and more patients would seek treatment abroad. The following quotes reflect further views expressed: The only thing to be said for it is that it enables some women who otherwise financially wouldn t be able to afford it financially to do it [have treatment], that seems quite a powerful reason. It s more complicated because, doing it that way does knit you into being more conscious about altruism and reciprocity...but it s tricky because if you aren t able to donate then it s not necessarily a level playing field. You re being exploited by the clinic then, in my view. Apply the same rules [as compensating altruistic donors] Family limit The group was asked for their thoughts on the family limit why they think a limit is set and what they feel the limit should be. One participant stated My daughter very recently discovered that she s one of 15 siblings she said that 15 is more than enough from her perspective there should be some sort of limit she wasn t jumping for joy. The group felt that generally the risk of consanguinity is low; they were not greatly worried about this risk but felt that it is a reason to tell children they are donor conceived. They suggested that to reduce the risk of consanguinity donor sperm should be distributed more widely across the UK. However, one participant pointed out that around 15% of children in the general population do not have the genetic father they think they have anyway. One participant pointed out that with a limit of 10 families it may be possible for one donor to create around 30 children, which she thinks her donor conceived daughter would feel uncomfortable with, because of concern regarding potential contact with all the siblings. However, it was acknowledged that these concerns need to be weighed against not being able to have a donor conceived child at all. The following issue was raised about using the term sibling : Interesting that they re referred to as donor siblings... Why do we introduce that social angle [when donors are referred to as donors and not mothers and fathers]?...need to think about the expectations we have there. Donation review October 19 Authority meeting Annexes part

229 There was a consensus that a family limit should be in place. The majority of participants felt comfortable with the limit of 10 families: I feel like 10 feels right to me Helping lots of families but not going completely over the top. The group agreed that donors should be able to consent to fewer than 10 families, which is currently the case, but that this fact should be published more widely to encourage donations. Donation review October 19 Authority meeting Annexes part

230 Annex J: Report on interviews and discussion forums with donors, donor-conceived adults, members of the public and faith groups The Public s Attitudes Towards Donation of Human Sperm, Eggs or Embryos for Fertility Treatment Report of the Findings of a Qualitative Research Study Prepared for : COI and their clients, The Human Fertilisation and Embryology Authority (HFEA) Prepared by : Counterpoint Research COI Job No CPR1206 April 2011 Counterpoint (UK) Limited 3 rd Fl, Queensberry House 106 Queens Rd Brighton BN1 3XF Tel : info@counterpoint-research.co.uk Donation review October 19 Authority meeting Annexes part

231 Table of Contents 1. Background to the Research 3 2. Research Objectives 4 3. Research Sample 5 4. Discussion Guides, Stimulus Material and Research Procedures 7 5. Summary and Implications 8 6. Key Findings from the Research 15 Foreword The General Public s Perception of Donation Spontaneous awareness and understanding of donation Awareness and understanding of the process of donation Awareness of regulation and issues in regulation of donation Implications for attitudes to regulation Perceptions of donors Barriers and motivations to donate The Views of Sperm Donors Sperm donors who had donated post Sperm donors who had donated before Sperm donors and the regulation of donation The Views of Egg Donors The Views of Donor-Conceived Adults Donor conceived adults who have known since birth Donor conceived adults who found out as adults Overview of Attitudes to Regulation Reactions to Compensation, Reimbursement and Benefits in Kind Compensation Reimbursement Benefits in kind Reactions to Family Donation Reactions to Family Limit 46 Appendix A Fact Sheets 49 Appendix B Discussion Guide 57 Appendix C View on Private donations 64 Donation review October 19 Authority meeting Annexes part

232 1. Background to the Research The HFEA is responsible for developing policy affecting the fertility sector, as well as regulating the use of gametes and embryos in fertility treatment. The authority is dedicated to licensing and monitoring UK fertility clinics and all UK research involving human embryos, and providing impartial and authoritative information to the public ( In 2005 the HFEA undertook a major review of its policies relating to sperm, egg and embryo donation (the SEED review), which aimed to ensure that HFEA policies relating to donation enabled an adequate, effective and safe service for those requiring donor treatment, whilst protecting the interests of donors, recipients and the donor conceived. These policies were evaluated in 2009 and as a result of this evaluation, HFEA launched a review of their donation policies. HFEA wished to monitor how social attitudes were changing towards gamete and embryo donation, and so, in April 2010 they commissioned Counterpoint Research to carry out research in order to feed into HFEA s review of donation policies and the information they provide for patients and the public generally. Donation review October 19 Authority meeting Annexes part

233 2. Research Objectives The overall aim of the research was to provide qualitative insight into how attitudes towards assisted reproduction have changed, and to assess social attitudes towards a range of particular issues related to gamete and embryo donation. Three areas were addressed in the research 1. Reimbursement, compensation and benefit in kind to donors General attitudes to this issue were explored, as well as the following probed : what should people be compensated for if they donate their eggs or sperm to patients, in terms of expenses (e.g. travel and subsistence, child care fees) how do they feel about compensating people for loss of earning how do they feel about compensating donors for the physical discomfort and potential psychological impact should there be an overall limit and how do they estimate/ value that (e.g. comparison with jury service) how should compensation for sperm donation compare with compensation for egg donation (and reasons for their opinions) 2. Intra family donation General attitudes towards this issue were explored, in relation to both types of intrafamily donation: a) when gametes of genetically related family members are mixed (e.g. cousins, brother and sister); and b) when they are not genetically related (e.g. a sister donating to her sister). The following specific issues were raised : cross-generational donation (older-younger, younger-older) sibling donation 3. Limitations on number of families The research explored reactions to the current policy (limited to 10 families overall, but could be limited further by the donor), and solicited opinions on the reasons behind limits (limiting the number of genetic siblings, risk of consanguinity, psychological effects on the donor conceived etc.) The research also aimed to provide background understanding of : how much people understand about the process and the commitment involved (e.g. the time commitment and medical risks and discomfort involved) what would make people donate their eggs, sperm or embryos for use in fertility the barriers preventing people from finding out about, or volunteering for donation Donation review October 19 Authority meeting Annexes part

234 3. Research Sample A series of online Discussion Forums were held with members of the general public (none of whom had personally been involved in donating or receiving gametes). 5 online discussions of 3-5 days each 10/12 respondents in each Forum Recruited from throughout the UK, using Counterpoint s network of recruiters 3 discussions comprised a wide mix of background (age, sex, social class, family structure etc.) 1 discussion comprised ethnic minority respondents (including respondents from the following ethnic groups : Pakistani, Bangladeshi, Black Caribbean, African, Chinese) 1 discussion comprised respondents from a variety of religious backgrounds, all of whom had an active faith (including respondents from the following faith groups : Muslim, Sikh, Hindu, Buddhist, Jewish, Christian) The online discussion forums took place within a secure online environment, and involved respondents logging in at least twice a day : once to go through the topics set by the moderator for the day, and then once, later in the day, to go through what others have said, and to respond to further probes from the moderator or other respondents. The Discussion Guide for the online forums is included as Appendix B. These discussions were held in mid-february 2011 A series of individual in-depth interviews were held with respondents who had a much more personal experience of donation. Individual (telephone or face to face) depth interviews were chosen for a variety of reasons : it allowed respondents to go through their own individual experience in much more depth; it preserved their anonymity; and given the geographical spread of these sub-samples, individual depth interviews were logistically much easier to arrange.) Where sufficient numbers of volunteers came forward, those who participated were selected to represent as broad a range of donors and donor conceived adults as possible. 9 individual interviews with sperm donors o all volunteers were recruited following registration of their interest with the HFEA regarding the review of donation policies o they had a range of reasons for donating, and had donated at different times/ ages (from early 80s to very recently) o 2 donors provided additional information via 7 individual interviews with egg donors o around half were recruited via the HFEA s register of interest and half were recruited via Counterpoint s network of recruiters o they had a range of reasons for donating (family member was infertile, to egg share, because of empathy with infertile couples etc.), times they donated and whether their donation had led to a pregnancy and birth. o 8 individual interviews with donor conceived adults o around half were recruited via the HFEA s and partner organisations register of interest and half were recruited via Counterpoint s network of recruiters o they were told or found out that they were donor conceived at a variety of ages from always known through to when they first had children themselves, in their early 30s Donation review October 19 Authority meeting Annexes part

235 The outline guide used in these interviews, which were carried out in mid/ late February and early March 2011 is included in this report within Appendix B. Donation review October 19 Authority meeting Annexes part

236 4. Discussion Topics, Stimulus Material and Research Procedures 4.1. Discussion Topics General Public: The discussions started with a general discussion of respondents knowledge of and opinions about donation. Specific Fact Sheets were then fed in to the discussion, covering each of the issues of concern : - reimbursement, compensation and benefits in kind - intra-family donation - limitations on the number of families to which one donor can donate Donors and donor conceived adults: These discussions were very open-ended, with the early part of the interview covering the issues, thoughts and concerns of the donor or donor conceived adult. Once those topics had been thoroughly probed, the moderator then went through the checklist above, making sure that all of the themes and topics relevant to each had been covered. Detailed Discussion Guides are included as Appendix B Stimulus Material HFEA Factsheets on the topics of interest were used as Stimulus Material in the research interviews and Forums. Copies of the Factsheets are included as Appendix A Research Procedures Analysis: Our moderators listen to the recordings of their interviews as part of the analysis process. Verbatims are taken down, and used as the core building bricks of the presentation. Moderators reflect on the patterns of verbatims emerging, and start to form their analysis (always captured on a separate analysis sheet to ensure that respondents terms, concepts and ideas are kept separate to the moderators analysis). The analysis is thus built up across all the interviews and findings from each group/ interview are compared and contrasted with one another. Where there are differences, moderators analyse their transcripts/ notes until they can determine the cause of such differences. At each stage in the analysis process the moderators explore the implications of their findings, and cross check their interpretation with colleagues. All moderators working on a project then get together, having completed this initial transcription and analysis, and work together to build the debrief presentation. Recruitment: We have an extensive network of tried and tested recruiters for both list recruitment and free find. These recruiters are locally embedded, known and trusted and are the most effective means of ensuring effective, appropriate and reliable recruitment. They work through existing contacts in the community as well as through forging new contacts on a project by project basis. Donation review October 19 Authority meeting Annexes part

237 5. Summary and Conclusions 5.1. The public s awareness and understanding of donation Members of the general public had a background awareness of donation and its issues rather than an informed knowledge and understanding. They generally felt that media coverage aside most citizens had a fairly common sense approach to fertility and donation. However, they tended to be surprised and even shocked at how little they knew about the issues involved, and how often they thought about donation in stereotypical terms. The general public felt that they should defer to those who were more involved in, and knowledgeable about donation and its regulation and were reluctant to be too opinionated or prescriptive. This said, however, many argued that we, as citizens, should be more considered about what is and isn t acceptable in relation to donor conception, and have a debate more generally about the issues involved. Some argued that the days were over when society would unquestioningly approve of any science or procedure which allowed an infertile couple desperate for a family to have a child. Respondents also felt that it was increasingly important that the implications of donor conception and its regulation be considered from the point of view of the child created, and that the adults involved should not be unquestioningly given what they want. They were also deeply uncomfortable with the commercial use of such a unique gift as donated gametes, for the use of couples so desperate to have children that they will be prepared to pay as much as they can to successfully conceive a child. The public s knowledge of the processes involved in donor conception was also patchy, as was their understanding of regulation and its issues. Whilst they felt it was important that donation was well regulated, because of the unholy mix of business/ profit interests and vulnerable, emotional recipients, they also felt it important that couples be forced to think through the issues involved in donor conception very carefully before committing to the process. Because members of the public felt that they were not experts, they felt they should ultimately defer to those involved in and knowledgeable about donation. This said, they argued strongly that donation should involve the following : independent, high quality counselling, to ensure that all those involved are suitable, appropriate and involved for the right reasons, as well as to provide information, support and advice throughout the process; that the commercial interests and priorities of the clinics are balanced by their duties and responsibilities (including managing and using donated gametes far more efficiently), i.e. that they are robustly regulated by an independent body to make sure they are following procedure and best practice. Donation review October 19 Authority meeting Annexes part

238 5.2. Barriers and motivations to donate Respondents were asked about the general attitudes towards donation, and as part of that discussion, it emerged that they felt there were a series of general barriers to thinking about or personally considering donation. Many were surprised that they hadn t thought about the issue a lot more, given its importance and considered when/ under what circumstances they might be motivated to donate. The key barrier to thinking about donation was that most respondents did not know anyone who had experienced fertility problems and thus had not been forced to confront the whole idea of donor conception. Most members of the general public felt that little was known about donation, what would be involved, how long it would take and what the donor s responsibility would be in relation to the child. There was some concern about the type of people who donated, particularly about sperm donors (sometimes seen as purely motivated by money). However there was also some concern that women were using donor conception to solve a problem caused by their lifestyle choices, i.e. by them trying to have a career, large enough home etc before trying to conceive. For many members of the public, particularly women, the chief barrier was the idea that there would be part of them in existence somewhere, over whom they had no influence or say. Others, particularly those with a strong faith, rejected the idea on religious grounds. However most felt that they were lucky that they had not had to consider donation and the (difficult) issues involved. On reflection, most members of the general public who participated in the research argued that is was a real shame that there was no public debate about donation, and that it was extremely difficult for anyone interested to access reliable, relevant information about it. Current and accessible sources were criticised for being sensationalist, unreliable and just weird. There was also a perception that the media concentrated on cases where something had gone wrong with the donor conception and felt that it was indictment on our society that there had not been a public, informed debate about the issues involved. They felt that it was important to hear more from a range of donor conceived children (not just those who have extreme views on the topic), and to have reliable, official information available to counterbalance the hysterical and over the top coverage in the media, and the biased information put out by clinics. The internet was not trusted in this context, since it was seen to have a high number of dodgy, unlicensed clinics, who were buying and selling donations Summary of sperm donors views Attitudes amongst sperm donors varied a great deal, dependent on when they had donated. Those who had donated fairly recently (particularly post-2005) had a positive and laissez faire attitude towards donation and its regulation. Most had been prompted into donating because friends or family were having trouble conceiving, but Donation review October 19 Authority meeting Annexes part

239 all had donated to a pool via a clinic rather than directly to that friend or family member. They argued it was still very difficult to find out information about donation, and there was no obvious first point of call. The internet was not trusted in this context. The key element in their attitudes however, was that they expected there to be an openness between the recipient parents and the donor conceived child about their origins. By and large they hoped that the parents had told the child at a very young age and that, therefore, their donor conception would not be a problem for them. Whilst they broadly approved of the current regulation, they were critical of the clinics, particularly in relation to their administration, and many questioned the diligence with which they followed HFEA guidelines. Those who had donated before the introduction of the HFEA (in 1991), but particularly before the removal of anonymity in 2005 tended to highlight different issues. Those who had donated over a period of time, and in one location were very concerned about consanguinity, and felt the lack of regulation in the early days of donation had been appalling. Over the years they had gone through a learning curve, thinking about the lives of the donor conceived children they had helped create, and picking up on interviews with donor conceived children in the media. They tended to argue that donors should undergo careful counselling before donating, and should make sure they understood all the implications of what they were doing. Sperm donors wanted to see a wider public debate about donation, and for the process to be pulled out of the closet so that people understood the real range of reasons men donated their sperm. Like most others, they felt that it was much more important that clinics use what donated material they have far more carefully, rather than raising the limit on the number of families which could be created. They were also concerned about the transfer of donated material between the UK and other countries, and felt that this should be a much more transparent process The views of egg donors By and large the egg donors had been prompted to donate after hearing friends or family members talk about their fertility problems. All had spent some time researching donation, its implications and health risks before offering to donate, and unlike sperm donors, they often talked with friends and family before making their decision. Some had a concern that their eggs would be used by women who had made lifestyle choices which meant they had left trying to conceive too late, however they all accepted that donors had no right to make choices about who should or shouldn't have their eggs. Donation review October 19 Authority meeting Annexes part

240 Again the need for and importance of counselling of all parties was highlighted, and egg donors were also critical of the clinics attitudes to aftercare of donors The views of donor conceived adults Those who had been told when they were very young were positive about donation, and felt that everything possible should be done to encourage as many young people to donate. In contrast, those who had found out as adults found the whole issue of donor conception extremely difficult. Some were still very resentful to their parents, not so much about them having taken the donor conception route, but for lying to them about their identity. This said, they struggled to understand their parents actions and were very critical of a business which seemed to have no place for the voice of the children being created. That they might have tens or even over one hundred donor siblings was extremely difficult for them to deal with. They also argued that their opinions should be taken much more into account in terms of framing legislation and regulation, and that the lack of support available to them (particularly when compared with the support available for adopted children) should also be addressed. All of this group made very strong cases for donor conceived children having a right to know that they re donor conceived. They felt that this information was far too important to trust to recipient parents, and that there needed to be a more reliable and robust way of making sure that donor conceived children were told about their origins, their genetic/ health history and the thought with which they were conceived Attitudes to regulation Whilst there were clearly differences in attitudes to the regulation of donation across the sample, some shared themes emerged clearly. The most distinct was the suspicion of the motives of clinics in such a process: thus there was a general feeling that the clinics needed to be independently and robustly monitored and regulated to make sure that they were behaving appropriately. Secondly, given the enormous variation in cases, most argued for a flexible approach to regulation, as well as one based on a holistic view of the process, with the interests of the donor conceived child, as well as the donor and recipient family, at its heart. Certainly the subject was seen to be such a complex and difficult one that respondents argued for a simple and transparent system of regulation, and felt that the more complex and opaque the regulation, the more easily people, particularly donors, would be put off getting involved. There were, however some key differences within the sample, with some (particularly donor conceived adults who discovered later in life and those who had donated Donation review October 19 Authority meeting Annexes part

241 sperm some time ago) arguing for tougher regulation, and others (particularly donor conceived children who were told from infancy) arguing for lighter touch regulation Encouraging more people to donate In order to increase the number of people who would consider donating, respondents recommended the following (views were shared across a surprisingly wide range of respondents) : better information for all involved a known, accepted first contact point which can signpost interested parties to appropriate information confidence established that measures are in place that help ensure everyone involved is doing it for the right reasons more of a focus on the needs of donor conceived children clinics being visibly monitored and controlled knowing that both the recipient couples and the donor conceived children are grateful for the donation Having thought through the process and issues involved in donor conception, respondents felt that it was very important indeed that the business be well regulated. They felt that this would mean a combination of some hard and fast rules, as well as best practice advice (which should also be monitored they suggested) since they felt it was extremely difficult to impose some hard and fast rules on a process which involves something as individual as families. Time and time again respondents returned to the theme of making sure that everyone involved is motivated for the right reasons, and is treated well in the process. Thus, they argued that clinics should be held responsible for providing appropriate support and aftercare 5.8. Compensation, reimbursement and benefits in kind Compensation and reimbursement Across the board, there was a feeling that no-one involved in donation should profit from it financially, however the fair reimbursement of expenses was uncontentious. Compensation for loss of earnings was also felt to be reasonable, provided there was an overall limit. The current figure of 250 was judged to be about right. There was a definite discomfort with introducing any further compensation, particularly compensation for inconvenience as, for most, this hinted at payment above and beyond the actual cost to the donor. There was also a definite discomfort with the suggestion that increasing the financial compensation or payment to the donor might increase the number of people volunteering to donate. Rather the opposite was the case: most argued that there should be no chance of a potential donor being motivated by money, and that the counselling process they wanted to see as an essential part of donation should ensure that donors are not motivated by money. It was argued that clinics should use some of their profits to provide the following as a duty : Donation review October 19 Authority meeting Annexes part

242 independent counselling before, during and after donor conception support and aftercare Benefits in kind There was a general feeling that if this practice was to continue, clinics should find some way of ensuring that the imbalance created between low income families (who respondents were concerned could be forced to donate in order to access IVF) and higher income families (who can use all their own eggs in their own treatment and therefore have a better chance of success) is resolved. Schemes such as subsidies for low income families were suggested, and it was generally felt that a better way of equalising the chances of conception for low income and higher income families be found. Most found the idea of queue jumping involved in sperm sharing both unfair and unacceptable. Respondents would rather see a fairer system in place, however if benefits in kind were to continue, they wanted to see mandatory, high quality counselling provided (and paid for by the clinics) for all involved, as well as hands-on regulation of the clinics Family donation Most respondents really struggled with this issue, even the few egg donors who had donated to family themselves. They had serious concerns about the disruption donation would cause to delicate family relationships and dynamics, as well as concerns about allowing mixing of sperm and eggs from the same genetic pool. Certainly most found it astonishing that mixing of sperm and eggs at the equivalent of incestuous relationships was not already banned and would like to see this basic protection provided. As a general rule, most respondents were reluctant to impose a fixed set of rules in relation to family donation (non-genetically mixed intra-family donation), excepting that everything should be openly discussed and agreed prior to donation, and that all involved receive counselling before, during and after the process. Some felt it might be helpful to have an agreement drawn up, particularly to protect the donor from desperate and potentially pressurising relatives. Sperm sharing was again resisted because of its intrinsic unfairness ( queue jumping ) and the danger of friends or family being pressurised into donating Family limit Across the board respondents felt that the first priority in trying to help more families would be for the clinics to make much more efficient use of the donations they have already been given. For most, the ten family limit was seen as already high, and for many, too high. They feel that the risk of consanguinity was too high, particularly given the low confidence Donation review October 19 Authority meeting Annexes part

243 they had in clinics to manage and distribute the donations properly, and there was a general concern about the impact of multiple donor siblings on a donor conceived child s sense of self and identity. All had sympathy with couples who were having to wait for treatment because of long waiting lists, however increasing the family limit was not felt to be the solution to the problem. Rather, they argued that the following would improve the situation : better management and use of donations by the clinics a much more open debate about donor conception, and more easily accessible information about donation increasing the numbers of new donors Donation review October 19 Authority meeting Annexes part

244 6. Key Findings from the Research Foreword Before discussing the findings from the research in detail, it should be borne in mind that the general public were reluctant to express opinions about donation and related issues. They argued that they were far from experts or even well informed on the subject, and were surprised that they were being asked for their opinion. They argued that those who had been affected by donation, either as donors or as recipients were the logical and legitimate audience for such a discussion. They pointed out that they were lucky that they hadn t had to confront, think through and resolve the difficult issues involved and they had a great deal of sympathy for everyone who had been touched by infertility. Many argued that the issues, from society s point of view, were important, but not something raised in general conversation. Normal people, they admitted, avoided seeking information about donation, or talking about it generally. Interestingly, almost all argued that it was only those who had experienced some kind of catalyst who started to gather and think about information on donation and the issues surrounding it. Such catalysts included having friends or family who had been affected by infertility, or experiencing infertility themselves. The general public who had not experienced such a catalyst argued that their opinion was necessarily less socially valuable or important and that they, as fair citizens, should defer to those who were much more directly affected. I think the reason people are motivated must usually be a personal need/ desire to help a family member or friend (Online forum with the general public) At the end of the discussions, almost all talked about how important and complex the issue of donation and the issues surrounding donation are in society, and the need for a much more widespread debate to ensure that the interests of all those involved in, and affected by, donation are balanced. They also expressed a strong concern that donation be carefully, sensitively but robustly monitored and regulated. Interestingly, the general public s perception that people only became interested in donation because of a catalyst was borne out by the donors stories. Most of them had had friends and/ or family who had been experiencing fertility problems. Some of them had been asked directly to donate to their friend/ family member, however only a couple of egg donors had done so, but the other donors had been prompted to donate to an unknown recipient/ a pool a result of their experience of seeing the friend and/ or family member struggle to conceive. Most of the donors who had been exposed to fertility problems in others had decided that they should try to help such couples, and had subsequently set about researching donation and going through the process. They too felt it had involved a steep learning curve (for some, before donation, for others, after they had donated), and argued that they probably did have more to say, and different things to say on the subject than the general public. Donation review October 19 Authority meeting Annexes part

245 Therefore we will deal with the background to the general public s understanding of the issues involved with donation first, before turning to the attitudes of donors and donor conceived adults. The general public constantly reiterated how ignorant they felt about donation and its issues, and were very grateful for the chance to become much better informed about it (via the HFEA Factsheets in particular) and to debate the issues in the open with others. Once the process of deliberation amongst the general public has been outlined, the report then sets out the different perspectives of those much more involved in the process : the donors, and donor conceived adults. The report deals with the issue of regulation per se, and with the three topics specifically raised in the research : compensation, reimbursement and benefits in kind; family limit and intra-family donation The General Public s Perception of Donation Spontaneous awareness and understanding of donation The general public s view of donation was a very mixed bag of half-formed thoughts, impressions, contradictions and misunderstandings. Almost all felt that everyone should have sympathy with couples who wanted to have children, but who struggled to conceive. The first spontaneous comments when asked about donors was that they should be seen as amazing (and brave) people, who give others the gift of life. They certainly, initially, found it very difficult to have any other opinion than that donation is a worthy and socially good thing. The worst thing I can think of would be to never have had a child, and I am thankful every day. I think it is great that people donate both sperm and eggs to help others achieve this (Online forum with the general public) The words that spring to mind are clinical, complicated and brave (Online forum with the general public) At the other end of the emotional involvement scale, many associated donation, particularly sperm donation, with students or other young people, trying to supplement their income by serially donating their sperm or eggs. Young student men trying to make money. (An) advertisement I saw in Metro for free IVF if you donate your eggs (Online forum with the general public) There was certainly a perception that making babies was a commercial operation, and consistently throughout the research the general public spoke of fertility clinics with some cynicism and concern about their motives. Let the clinics subsidise the donors if they feel the donors are not being paid enough, they charge enough for IVF (Online forum with the general public) Donation review October 19 Authority meeting Annexes part

246 Many struggled to balance their emotional response to the desperation of couples who were struggling to conceive with images of cold and clinical laboratories, and breakthrough science. They tended to resolve such discomfort by avoiding thinking about donation and its complexities. It s an area that seems so alien to me. Then my next thought is that I m being selfish (Online forum with the general public) Certainly the images raised in the initial discussion of donation involved drama and extremes, and even caricatures : daytime television shows, headlines such as I m giving birth to my daughter s child, and extremely successful City Financiers browsing catalogues of sperm donors. There was a real discomfort with the language of consumerism being used within this context, and they struggled to balance the idea of a right to a family, of exercising choice in the context of clinics etc., with the muddled and emotional model of a family. What I know is usually what is seen on daytime television I ve never really thought about it as I ve never been in the situation (Online forum with the general public) I have an image in my mind of American women leafing through various portfolios of fit and successful men to choose the style of their baby whilst sipping a decaf double mocha somewhere in California. I also have an image of a couple so desperate to have children they are pouring thousands of pounds into the process (Online forum with the general public) For some it was easier to talk about donation in the context of gay couples they argued that, clearly, gay couples had a need which was more obvious than heterosexual couples. I saw a Channel 4 documentary about a lesbian couple who attempted to conceive with a male friend donor and a turkey baster I would imagine that those who are more likely to donate have had some link to this type of conception in the past I think most people don t do it as it s a massive decision (Online forum with respondents from ethnic minority backgrounds) However, it was in the context of gay and celebrity couples that some of the general public expressed discomfort with the idea of massaging fertility to achieve the perfect family. (Victoria Beckham announced that she was expecting a daughter shortly before the fieldwork. This was used as an example of engineering perfect families it was argued that there s no way she d have got pregnant again without the guarantee she d have a girl this time ). There was also some discussion of desperate couples trying to find donors on dodgy websites, or couples so desperate that they resorted to do-it-yourself artificial insemination, and the monitoring and regulation of donation was a theme respondents returned to again and again. It s always in the media, especially with celebrity people (Elton John recently comes to mind). (Online forum with the general public) Donation review October 19 Authority meeting Annexes part

247 (I think of) internet profiteers who sell eggs privately online and perhaps exploit some desperate couples (Online forum with respondents from ethnic minority backgrounds) I read about some woman who was selling eggs online (Online forum with respondents from ethnic minority backgrounds) Others talked about more fundamental fears : of the consequences of messing with nature. They talked about mad scientists trying to do something because it was possible, no matter what the social and personal consequences; and of possible genetic defects in babies because of the unnatural way in which they had been conceived. Certainly donation, and the receipt of donated gametes was felt to be a very serious topic, which put a grave responsibility on those involved and which had difficult, long term implications. A couple within the sample were against the practice of donation on principle, although they both accepted others rights to disagree with them. They rejected donation on religious grounds Awareness and understanding of the process of donation There was very little spontaneous awareness of how donation was regulated, however all agreed at the start and close of the discussions that it was very important indeed that the whole business be regulated. They felt that being asked for their opinion on donation and its regulation put a significant responsibility on their shoulders a responsibility with which they were uncomfortable. They felt the whole topic to be a minefield and one which they weren t particularly involved or informed about. I don t think there is anything wrong with people donating sperm or eggs if someone will benefit, but it s not really something that I really think too much, no really anything to do with me, but I do feel sorry for people in this situation (Online forum with the general public) It s nothing that I have ever really thought of, as me and my wife have never struggled (Online forum with the general public) Most respondents were very surprised, on reflection, at their ignorance of the process, the issues, the business and culture of donation. Many were shocked to admit that they hadn t really thought about it with any seriousness. They confessed to being happy and relieved that they had not been required to find out about, and think through the issues associated with donation. It s a very emotional subject with lots of morals and views attached. But it must be incredibly powerful emotionally if you desperately want a child and are unable to have one naturally (Online forum with the general public) Donation review October 19 Authority meeting Annexes part

248 I feel a little lacking in knowledge about the subject, but (participating) has made me want to know more and be more aware. I guess that as I am heading beyond my child producing years (47) I do not come into contact with many people who may be struggling with the negativity of not having children (Online forum with the general public) I am lucky enough to be in a position to have been able to have children but if I couldn t I can understand why people would try IVF or sperm donation. I think it needs to be regulated and monitored very carefully (Online forum with the general public) They all understood that conception via donated sperm or eggs had become possible at some point (probably in the 80s?) and that it was a topic many (other) people felt very strongly about. On the one hand, they argued that it was wonderful that couples who were desperate to have children now had a better chance of conceiving (via donated sperm or eggs). There was a great deal of sympathy with couples, particularly women who had difficulty conceiving. There was considerable discussion of how some women became obsessed or desperate to have children and for whom donation was their last hope of having a family, as well as widespread concern that the interests of everyone involved should be protected. Even if someone s motives are not altruistic when deciding to donate sperm/ eggs i.e. if money is involved even then, the recipient of a healthy child probably wouldn't care. So it is a very grey area. How much can the people involved be protected? (Online forum with respondents with an active faith) For most, donation and IVF represented science s solution to nature s problem, and many talked about how fertility problems were not generally talked about and that there was still a stigma to being unable to conceive naturally. In principle, most felt this was wrong, and also argued that for the sake of our society as well as the welfare of donors, recipients and donor conceived children, we should bring donation and the issues surrounding it out into the open. I have suffered a miscarriage, fertility problems and post natal depression, which all seem to be issues that people are not happy to talk about (Online forum with the general public) The wonders of modern science that these issues can be resolved even if the methods are not what you would really want (Online forum with respondents with an active faith) Certainly respondents talked about the need for a more public and general debate about fertility, donation and IVF. The few who were aware of the change in legislation such that donor conceived adults were able to trace their biological parent argued that this had raised different and important issues which meant that the general public had more of a duty to consider how the donor conceived child and the donor might feel in that context. There are a lot of moral issues attached and it s still controversial with regard to children finding their donor etc., which leaves me uncomfortable. I think this is the most important issue now when talking about sperm and egg donation now Donation review October 19 Authority meeting Annexes part

249 (Online forum with the general public) How would the child feel if they are aware that they were a donor (conceived child)? (Online forum with the general public) I think I remember reading that donors are identified now, don t think I d be happy about someone turning up and calling me Mum (Online forum with the general public) Whilst respondents felt that resorting to donation had been a route to solving a dreadful problem in the past, there was some concern that, because the technology was available, couples were using it as a lifestyle choice rather than the solution to a problem. Again this prompted some to suggest that it was an appropriate time for a wider and more public debate about the issues involved. This said, they were also uncomfortable that all those involved in the process the donor, recipient and donor conceived child had a particular interest or angle in this debate, and that again this meant that it was important that an independent body monitor and regulate the process. Some argued that it was an indictment of our society that these issues were not debated more publicly, and it indicated that we were still embarrassed and ashamed to talk about fertility problems. The combination of these factors lack of an accepted language, lack of a public debate, and the reluctance of those not currently dealing with infertility personally to find out or engage in a debate meant that by and large, the general public favoured the current regulation. They felt that they would have to be much better informed, and much more involved in the debate about fertility and donation to be opinionated or arrogant enough to argue for a change. Thus, they were laissez faire in their attitudes to current regulation. It was important that the research fed in a series of HFEA Factsheets to raise their level of awareness and inform them about the process and the issues involved. Many commented on how low their awareness of the facts involved in donation was, and how important it was that the awareness and knowledge of the general population be raised. At the end of the discussions, most expressed gratitude for being made to go and think through the issues, and argued that it was very important that others (similarly unaffected by fertility and donation issues) also engage in the debate about the regulation of donation. (The discussion) has raised questions that I thought would have been answered long ago, when/ before this method became available to people (Online forum with the general public) All the information has been a real eye-opener. It has brought about many heated debates between me and my wife. (Online forum with the general public) I must say that I ve never had a chance to discuss this unique topic ever before and feel so privileged to be part of it. This has certainly made me think about the whole topic much more clearly Donation review October 19 Authority meeting Annexes part

250 (Online forum with respondents with an active faith) An education and eye opening discussion! I ve never really had to give much thought to the topic, so was certainly interesting to address some of the preconceptions never realised the topic was fraught with such difficult issues to consider. Just a minefield of ethical and genetic issues (Online forum with respondents from ethnic minority backgrounds) Awareness of regulation and issues in regulation of donation When provided with some initial information about the process (see Appendix A), almost all were surprised by the level of commitment required from the donors, particularly sperm donors. They were also surprised by how little they knew of the monitoring of clinics and the regulation of donation. They were certainly pleased that the process was regulated, however given the fundamental and important nature of donation, they were surprised at their own ignorance of the issues involved with regulation. Once they understood more of what was involved with donation, many started to question whether recipients really understood the whole process of donation, and whether having a baby at any cost (financial and emotional) was necessarily a good or healthy thing. There was some discomfort at couples determination to have a baby of my own, and some suspicion that they had a worrying and unhealthy obsession which science could solve. Many argued that infertile couples should give more thought to adoption, or other alternative routes to fulfilment through family life (e.g. put more effort into their career). Others argued that such couples should consider the health risks they would be taking much more seriously, and consider too the possibility that IVF might not produce a baby. Generally there was a concern that the motives of those involved might not always be acceptable and this was particularly worrying in a context where others were vulnerable. Throughout the discussions, respondents found it extremely difficult to resolve a number of competing interests and issues. The chart below summarises some key dilemmas in their thinking about donation and its regulation. Donation review October 19 Authority meeting Annexes part

251 Series of contradictions in their thinking/ difficult dilemmas to resolve Emotion, commitment, relationships vs commerce & science Gift, kindness, gratitude vs profit Private trauma vs Media sensationalising & vested interests Risk, unreliability (?) vs a false sense of the perfect family Individuals, differences, families vs rules/ regulations Chart One On the one hand, they felt that donation was very clearly a business, where commercial interests were very active. They tended to be cynical and suspicious of clinics, who they accused of being principally profit-oriented. (There was very little spontaneous awareness of NHS clinics and when discussing clinics, they tended to mean private clinics.) They often mentioned stories of couples re-mortgaging their homes and paying thousands and thousands of pounds for fertility treatment and IVF. This profit seemed to many to be sharply at odds with the extreme emotions of infertile couples, and their desire to provide a loving home for a child of their own. They also contrasted the altruism of donors and the gratitude of recipients with the profit and financial side of the process. The trauma of each couple s journey to donation and IVF was also felt to be vulnerable to exploitation, and the media were criticised for over-sensationalising and caricaturing the process mostly for profit. There was also a great deal of discomfort with the knowledge that IVF was risky and more often than not didn t result in a baby not being properly acknowledged in the process. They felt that infertile couples were all too often encouraged to be more optimistic than was realistic, with the clinics being seen to be most guilty of this, cruel, practice. Finally, all struggled with the idea of imposing strict, one size fits all regulation on a process which, ultimately deals with the most individual of things a family. Donation review October 19 Authority meeting Annexes part

252 Since most respondents felt that they were too uninformed and not involved enough in the donation process, and since the issues were complex and often extremely difficult to resolve, most respondents abdicated their right to have (particularly a strong) opinion, and often argued that they had sympathy with the point of view of everyone involved. Throughout the discussions counselling and counsellors were frequently cited as crucial. They were seen as independent, sympathetic, expert advisers who they hoped could perform two roles: - provide support and advice for all those involved in the process, with only the (physical and mental) health of those they were advising in mind; - and also provide an assessment of each of the involved parties suitability (to avoid people who were not appropriate for whatever reason to donate or receive a donation). They were felt to be a necessary partner for regulation, since counsellors were able to interact with individuals and couples and tailor regulation, advice and assessment to the very particular needs of that case. Respondents hoped that counsellors could resolve many of the dilemmas mentioned above, by working on the ground, with the wellbeing of all those involved as the goal. Finally, because counsellors were judged to be independent, respondents felt that they would be best placed to balance the interests of donor, recipient, and, crucially, the donor conceived child. I feel that counselling should be available to each and every donor but would be tailor made to the requirements. No situation is the same and counselling should encompass that. (Online forum with the general public) Thus, it was interesting that one of the first, and few, recommendations for change made by respondents was the requirement that all involved in donation agree to undergo more systematic and rigorous counselling, and that the donors and recipients need to be approved by counsellors before being allowed to donate or receive. Respondents felt that this would help guarantee (inasmuch as that is possible) that those donating and receiving would be doing it for the right reasons, and with the appropriate expectations and attitudes Implications for attitudes to regulation The key elements informing respondents attitude to regulation were therefore as follows : They were extremely reluctant to express their opinion about regulation in a context where others were far more emotionally involved, better informed and affected by regulation decisions. On the other hand, on reflection, they felt this was an extremely important issue, one where everyone who was involved had a vested interest, and that therefore there should be an external (to the business ) body monitoring and checking the donation business. They wanted someone or some organisation to be checking that money is not allowed to drive decisions or relationships, that couples seek donation for the right reasons and that society s need for responsible and appropriate parents is met. Donation review October 19 Authority meeting Annexes part

253 They also wanted to see a body that ensures that the needs of all involved are catered for, particularly the needs of the innocent child at the end of the process. Alongside this organisation, respondents wanted to see a body of independent, sympathetic people on the ground, who were not paid by the clinic (or were not paid directly by the clinics), who would work with the HFEA (or other body responsible) and manage the relationships as appropriate, including telling the donor conceived child about their conception. Most respondents felt that whilst it would be desirable that such a system was in place, and was able to ensure compliance with the basic concerns outlined above, they suspected that profit, and in particular, the clinics, had far more power than this (The general public s) perceptions of donors When asked what type of person donated gametes, respondents had two sets of associations. Their immediate associations were a) young students donating sperm to earn some cash, and b) women who had developed such sympathy for an infertile friend or family member that they had decided to try and help by donating eggs. Certainly a comment regularly made when first asked about donors was that men generally donated sperm for money whereas women donated eggs for altruistic reasons. I believe men get paid for sperm donations but I don t think women get paid for egg donation (Online forum with the general public) Once given a chance to reflect on donors and their actions, most argued that they had taken for granted a gift which was an extraordinary and unique one. They felt that they had badly underestimated the discomfort, inconvenience and commitment involved in donation, and had emerged from their reflection with much more admiration and respect for donors. In particular they felt that the decision donors made to accept that they had no role in their child s life and to accept someone else parenting them was incredibly altruistic and generous. (What would put me/ people off donating is) the feeling of knowing you have part of a child out there that you will never know who they are or where they are a piece of you (especially if you already have a child) it is a very emotional subject with lots of morals and views attached (Online forum with the general public) Unsurprisingly, most argued that issues involved with donation were so complex, and because they recognised their own reluctance to confront them, the general assumption was that donors were all people who had experienced some kind of catalyst which had forced them to think so seriously about donation, and ultimately to donate. This was almost invariably judged to be exposure to a friend of family member who was struggling to conceive. Donation review October 19 Authority meeting Annexes part

254 There is a great difference between donating to a family member for no compensation at all and donating on a regular basis for monetary gain. That s a selfish opinion of mine however (Online forum with the general public) One of the key pieces of information which changed many respondents attitudes to donation was the news (to most of them) that donors information could be accessed by their donor conceived child. They argued that some potential donors particularly sperm donors might make a relatively impulsive decision to donate without thinking through the implications of that donation (particularly if they were single, with no-one else to involve in the decision, and particularly if they had a friend or family member who was infertile). However they felt that the whole decision changed dramatically with the removal of anonymity. All donors would be forced to, and would be wise to, think ahead and to think about the donor conceived adult, their feelings about being donor conceived, and about their donor. This led them to think much more carefully about whether the donor conceived child should be told, and when. It also led to much discussion about their personal feelings about a part of them being out there with them, as donors, having no influence over them. Finally, the idea of the child contacting them at 18 was also potentially frightening, depending on what their own family was like at that time. Some typical comments follow: I wonder if people s relationship status may affect their decision, I think the decision may be easier to a single person, a person sharing a family or relationship already may have to take into account the thoughts and feelings of their spouses and family. Whilst it may not affect their lives at the time of donation it may well affect them once the child is 18 and may want to know more about their biological parents. Another barrier may come down the person s religion and beliefs (Online forum with the general public) Having read the HFEA factsheet it confirms my worst fears about donations re anonymity. I would be happy to donate sperm to help someone but I think it is wrong for all concerned to be outed many years later (Online forum with the general public) I was not aware that children could contact their donors when they were 18 and felt that this would put off donors. The truth is the most important thing, people need to be told the full facts (Online forum with the general public) As a mum I would always be wondering about a little life that was part of me (Online forum with the general public) I (have) concerns regarding the aftermath, who knows where you ll be in 18 years what your lifestage will be? Will you have other children? How would they react? Too many possible problems, it makes me feel a little uncomfortable. Almost taboo! (Online forum with the general public) Donation review October 19 Authority meeting Annexes part

255 Many respondents felt that this would discourage people from considering donation, however they balanced that against the rights, and fair treatment of the donor conceived child. They had a great deal of sympathy with infertile couples, and could easily see why there was a shortage of gametes in the UK given the removal of anonymity. This did not necessarily mean that anonymity encouraged donation for the right reasons in their minds however. They felt it appropriate that donors be forced to think about the consequences of their donation, i.e. that a child will exist who had been conceived with their sperm or egg and who had the right to contact them if they wished. This tended to raise a series of specific concerns: Will there be guarantees that any child will not have the right to make financial claims against me as a donor? How will that child feel about being donor conceived will they be pleased that they were so wanted, or will they resent their social father/ mother and want a relationship with me? How many children will I be responsible for conceiving? When will they have been told they are donor conceived, if at all? Whilst consideration of such questions was felt to be appropriate and fair (or as fair as it can be) to the donor conceived child, it also dramatically increased their perception of the whole question and business of donation as complicated, morally difficult to resolve, and also incredibly important. Essentially, the removal of anonymity had made a very difficult decision an unbearably difficult one. I think it s a little scary that they have the right to track you down. I would imagine the most important issues is who you help and how many childless couples there are, so you have the right people for the right reasons donating. (Online forum with the general public) I m not sure how I feel about the donor having no legal obligation to the child what would happen if something happened to both parents? (Online forum with the general public) There was also a concern that those regulating and legislating this area had essentially changed their minds by removing anonymity. This further undermined respondents confidence when discussing the issues involved and put them off trying to resolve their feelings. They argued that there were so many grey areas in relation to this issue that unless there was a compelling reason to force you to consider donation (such as a close family member who was struggling to conceive), most people would say it s not relevant for me Barriers and motivations to donation (N.B. Members of the general public brought up this subject in response to the HFEA Factsheet The Changing Landscape of Donation. This gave them background information about donation, and also raised the issue of the UK shortage of gametes. This led them to speculate on why this need wasn t talked about more often, and what would stop members of the public from donating) Donation review October 19 Authority meeting Annexes part

256 Unsurprisingly the main barrier to donation identified was not having had to consider it because of friends or family who were struggling to conceive. Generally, most respondents felt that donation wasn t a common, or even irregular topic for conversation, and that infertility still had enough of a stigma, and was such an emotional topic for women in particular that no-one would spontaneously bring it up. As outlined above, the complexity of the issues involved, together with a sense that everything is changing (methods, rules, success rates, removal of anonymity), concern about the motives of those involved and the competence and ethical codes of the clinics prevented most from having thought through donation far enough to feel they were able to make a decision. For some, the most important barrier was their religion, and would not consider it under any circumstances. This topic did make me think of something I have not had to think of before and I can say it has opened a can of worms as to how I feel about it personally (Online forum with the respondents with an active faith) I think it is unethical and not in the best interest of the child. There are alternatives out there why not adopt a child who already born and needs a loving family? (Online forum with respondents with an active faith) It s a subject that I d not really thought about, because it s never affected me, I suppose, and I always thought I didn t really care as it didn t affect me as such (Online forum with the general public) The motivation to donate was equally as clear as the key barrier to donate : being forced to think about it and having the issues personalised by a friend or family member who was having trouble conceiving. Those who had considered it in more detail had been reassured by the knowledge that those involved received counselling and that the process is monitored and regulated. Some of the general worries about anonymity were addressed by the reassurance that the donor s financial liability was limited. However, there was also concern that if the regulation had changed in relation to anonymity, then it might also change in relation to financial liability too. (It was generally presumed that this change must have been limited to new donors, however the key point was that it indicated an uncertainty which undermined confidence in the guarantees and commitments around donation.) Some felt that they might feel better about donating anonymously if they knew, and had some reassurance that their gift was appreciated, and all felt that the more straightforward and transparent the process was, the better. The fewer rules and regulations, processes and consultations there were, the less likely there was to be hidden issues, agendas and interests. All respondents regardless of their attitudes to donating themselves felt that it was a subject every citizen should become better informed about, and be the subject of a public debate. Donation review October 19 Authority meeting Annexes part

257 6.2. The Views of Sperm Donors Sperm donors who had donated post 2005 The views of sperm donors tended to be split by how recently they had donated. Those who had donated fairly recently (particularly since 2005 when the rules on anonymity were changed) tended to have a fairly positive and laissez-faire attitude to donation and its regulation. Most had been prompted into donating because they knew couples struggling to conceive. Amongst those who had donated, some of whom had donated on a few occasions, there was a general perception that it was difficult to find out who to contact at every point along the decision making continuum. I stood in the doctor s surgery and the receptionist shouted to her friend this guy wants to donate sperm. Not the way I had imagined it would be This mattered, since some of the donors were sensitive about others attitudes to them, and didn t want to have to ask more people than was necessary, or the wrong people. Generally, they argued that their motivations were sometimes misunderstood, and some had not told any friends or family they were donors. I haven t told any friends or family. If I get into a long term relationship with someone, then obviously I d have to think about what I d do long and hard Certainly all had found the learning curve from beginning to think about donation through to donating rather steep. They argued that there was no logical first point of call, and that an internet search could bring up some very inappropriate links (either unregulated clinics, or sites selling sperm). You d normally trust Google, but with this you have to really take a good look at what you re seeing They were critical of both the HFEA and other organisations and companies involved in donation and argued that there should be a centre point of contact which would act as a portal and provide independent, unbiased information and support. They were happy for the clinics or any other profit making company to fund that, however they felt that it was crucial that donors do not have to rely on individual clinics for information and advice. (Indeed many claimed they had been given contradictory advice and information during their decision making they felt it important that sperm donors have access to one, reliable source). They also felt that counselling was very important, but should be more robustly supported and funded. They were happy for this to be provided centrally and independently. One key difference between this first group and the second, who had donated some time ago, was that the donors expected there to be an openness and honesty about donation, and particularly, that the donor conceived children not be lied to. Donation review October 19 Authority meeting Annexes part

258 They (the clinic) told me that almost all of the donor conceived children would be told. If that s not the case I d be extremely concerned that I m complicit in their being lied to Many of them felt that this was the quid pro quo of them accepting the removal of anonymity. I very much hope that when the time comes (when any donor conceived children he has helped create turn 18) that they ll all have been told when they re very young, they ll be well adjusted, happy children, with absolutely no interest in me All were very much in favour of the issue being talked about more generally, since they hoped that it would raise the understanding of why men donate sperm, and reduce the suspicion and misunderstandings they had had to deal with. It s still seen as a dirty little secret Broadly, this group were in favour of the current regulation. They felt that it was fair to the donor conceived child and were all very aware of what their rights and responsibilities were within donor, recipient and donor conceived child spectrum of relationships. Many were critical of the clinics (both NHS and private) and felt that the administration was badly done. They cited stories of clinics simply issuing cheques for the maximum allowable without asking for claim forms to be filled in, of clinics paying very late, and of contradictory information being given out. It was a shambles. I gave up submitting receipts in the end, that s not why I wanted to do it They were particularly sensitive about how this was handled as they felt they were not donating for money, but the clinics forced them to have to argue for their compensation through their incompetence, which made the donors very uncomfortable. All were interested in how many families their donations had helped create, and there was a general disappointment that their donation had been used in such few, and unsuccessful occasions. After reading the HFEA factsheets they argued much more strongly that the clinics should be much more careful and more stringently controlled in their storing and distribution of gametes, particularly sperm Sperm donors who had donated before 2005 This group tended to have many more issues with donation and its regulation. Most felt that they should have been encouraged to think through the many ramifications of donation before they donated, and most had serious concerns about what they felt was a complete lack of regulation until the creation of the HFEA. Some had donated over a long period, in one location and had real concerns about the sibling donor conceived children meeting one another and forming a relationship. Donation review October 19 Authority meeting Annexes part

259 Others were concerned about the sheer numbers of children their donations had helped create. If you think about it, how many secondary schools are there in one area. Some had picked up information about donor conceived children s attitudes to being donor conceived and to their identity over the years and had become increasingly concerned about what they d done, particularly given some donor conceived children s anger about what their parents and the donor had done. Many had listened out for radio programmes or news articles on the issue because of their interest in donation, but had been shocked to learn of how controversial donation and donor relationships had become. (Not telling the child about who his/ her biological father is) It s the biggest lie you can tell The saddest thing is that he (donor conceived child) has rejected his mother now, and when you think of what she must have been prepared to go through to have him, particularly at that time, she must have really wanted him and loved him Some donors had been surprised by how often they thought of their donor conceived children, wondered about their circumstances, their happiness and whether they were loved. This had led them again to question the lack of encouragement to seriously consider their actions before donating. This tended to lead them to recommend much more stringent regulation and monitoring than was the case when they donated, and even more stringent than was currently felt to be the case. This group were very critical of clinics generally, and particularly in relation to information and support given to donors. They argued that clinics tended to provide information and advice aimed at persuading as many men as possible to donate, rather than making sure that the right men were donating for the right reasons. She was 10 minutes into her speech before I had to say to her, I m the donor here They were also critical of the quality and independence of counselling and again felt that clinics were not best placed to provide this crucial service for all involved in donation. As with the egg donors, sperm donors were critical of the clinics commitment to after care and follow up. The common feeling was that once the clinics had obtained their donation, they not only washed their hands of the donors, but they made little effort to help and support them with any needs they had Sperm donors and the regulation of donation Both groups felt that the regulation and advice provided needed to be clarified, bedded down and become something potential and previous donors could take for granted. They felt that a more public debate about donation would be extremely useful, and bring out the complex and difficult issues involved in donation. Some used the term dirty little secret, remarking that a more public debate would educate the population more generally about the real motivations men have for donating Donation review October 19 Authority meeting Annexes part

260 sperm, as well as encourage more (appropriate) men to think about becoming donors, for the right reasons. Joe Average just doesn t go there. The whole debate is so hidden, and misunderstood. That can t be good for anyone involved As far as the clinics arguments that more donations should be allowed, most of the sperm donors who participated in this research argued (some very robustly) that the clinics should concentrate on managing the gametes they have, and using them far more efficiently before asking for a rise in the number of donations allowed. When you look at what s involved in donation, they should treat the material with far more care Many in the second group those who had donated prior to the removal of anonymity in 2005 spontaneously raised the urgent need for the needs of donor conceived children to be addressed, and argued that donor conceived status should be recorded on a child s birth certificate to prevent recipient parents lying to their donor conceived children. It was a major concern addressed in follow-up s from sperm donors, and they did not want to be complicit in lying to young people about their identity and origins The Views of Egg Donors Attitudes amongst egg donors were fairly consistent. Most had been prompted to think about donation after hearing friends or family members talk about their fertility problems. However, no-one within the sample had been directly approached by their friend/ family member to donate their eggs, and all claimed they would have found it very difficult to donate directly if they had been asked. Some had volunteered to donate to a family member, but were very keen to explain that they had done a great deal of research themselves before broaching the subject with the family member. Indeed all egg donors argued that they had researched donation, the implications, the health risks and the longer term implications before going ahead and volunteering. They felt that most women were aware that egg donation involved a fairly major commitment, and that any sensible person would make sure they had briefed themselves thoroughly before voicing any intention to donate. So, unlike the sperm donors, the egg donors were talking with friends and family about donation, sourcing and reading information and descriptions of the process etc. before getting in touch with any official organisation to volunteer. Some had thought about it for as long as 5 or 6 years before making their final decision to donate. It was a lot later before I decided to go ahead, and I d read up and found out a lot about it in that time Obviously you re putting your body through a lot, so of course you do a lot of reading, browsing the internet, you find out as much as you can about it Donation review October 19 Authority meeting Annexes part

261 The egg donors talked about their sympathy with women who were unable to have children without donation, they talked about their understanding of how important it was to have children for some women, and felt that it was a very worthwhile thing to do to help them. Given they were all so well briefed before donating, the egg donors were aware of the real costs involved in their treatment, and they expected those to be covered by the clinics who would profit from their donation. However, a good proportion of (the small number of) respondents who took part did not claim the expenses or loss of earnings they could. They felt that such expenses seemed trivial in the context of such a donation. Egg donors generally felt that the current regulation was about right. Quite a few of them (particularly the egg sharers) wanted rather to talk about the HFEA limits on the number of embryos which can be transferred, since they wanted to see the chances of a successful pregnancy maximised. Interesting they tended to bring up the issue of lifestyle and the problems that women leaving having children into their 30s was causing. I m not a judgemental person at all, but I would have loved to have known that it wasn t just some rich bitch trying to have it all There was an older woman in the waiting room on one of the visit I had, and I must admit I thought, oh god Few had any serious issues with the current regulation and certainly they wouldn t want to see any relaxation in the current regulation : they felt that everyone involved in donation should be forced to think carefully about what they were doing, particularly in relation to family donation where they felt that pressures could be significant and unfair. Of all the participants in the research, it was the egg donors who argued that the HFEA had broadly got the balance between trying to create an open environment and acknowledging the need to be able to deal with individual differences on a case by case basis. They were certainly adamant (like the sperm donors) that counselling for all involved is both necessary and desirable. They talked a great deal about the donor conceived child, and felt that so long as donors and recipients were assessed and supported by high quality, independent counselling, their interests could be represented in the very early stages, when otherwise their voice could not be heard. Egg donors were unhappy with much of the language surrounding the process : they felt particularly angered by comparisons with organ donation (because of the difference the creation of a child makes) and with references to statistics and finance ( compensation, number of successful outcomes etc). As with the sperm donors, many of the egg donors raised the topic of the need for donor conceived children to be told about their origins, and they expressed surprise that this research was not explicitly covering this issue. Finally, as with sperm donors, egg donors felt that the clinics were too often very communicative and helpful in the lead up to the donation, but that afterwards their Donation review October 19 Authority meeting Annexes part

262 commitment to their donors was poor. They too felt that clinics should be held more responsible for the holistic after-care of everyone involved donors, recipients, partners and even donor conceived children. My only concerns are more to do with the clinics: they should have much better follow up and aftercare, and they should seriously improve the quality and quantity of the counselling they give 6.4. The Views of Donor-Conceived Adults The difference in attitudes amongst donor-conceived children was extreme, at opposite ends of a continuum. These attitudes were dependent on how the donorconceived child had found out about being donor-conceived Donor conceived adults who have known since birth Those who had known since they were small children were very relaxed about donation and being donor conceived. They described their approach to the issue as live and let live, and they expressed a great deal of sympathy for their parents unable to conceive without a donation. Many genuinely struggled to see why anyone would have a problem with donation, and argued that everything should be put in place to encourage as many young adults to donate as possible. As a group, they were amongst the most relaxed about regulation, and felt that any regulation which put potential donors off should be assessed and reformed to stop that happening. This group had grown up being given information about donation, talking about the issues involved and resolving any questions, confusions and potential conflicts with their parents. It got to the point where we said, Dad, it s ok, put the book away (children s book on donor conception), we know! This group didn t raise the issue of anonymity, for them it wasn t an issue, and many said they could understand why some donor conceived adults would want to find their donor, however for them, they d always known they were donor conceived and so had little interest in their genetic father or mother. As far as regulation was concerned, they were happy to see compensation and reimbursement increased to make it possible for a broader range of donors to be able to come forward, and they also wanted to see payments simplified, even to the extent of introducing lump sums. As outlined in the specific section dealing with compensation, this group, uniquely amongst the sub-groups were prepared to support payments to compensate for inconvenience, in the hope that if this was the case, a broader range of donors would come forward Donor conceived adults who found out as adults Donation review October 19 Authority meeting Annexes part

263 This group found it extremely difficult to understand how their parents had not told them when they were younger, and most of their attitudes were framed by this. Some were incandescent and incredulous, others were trying to understand their parents motivation and point of view, but all were struggling to deal with the information that they were donor conceived and to redefine their lives and identities with this in mind. Like the sperm donors who had been amongst the first to donate, these donor conceived children talked about their parents lies or at best delusion. They were deeply cynical of the companies and organisations involved in donation and felt their own needs were largely ignored by the business. To these donor conceived adults, it was distressing at least, and incomprehensible at worst, that their parents thought that lying to them about their origins and identity would be something they should, or could, do. For some it had meant that their relationship with their parents had broken down. For others, it had put extreme stress on those relationships. However, they were also damning about an industry which seemed to have completely factored out their potential feelings from their procedures and practices. Some argued they had been treated as commodities, as goods they could produce for their vulnerable, desperate parents without (any, or due) consideration of how they might feel as the product of a donation for which people were paid. (Issue of compensation, reimbursement and benefits in kind) That s a horrendous question. That there s money involved at all just makes me feel so (sighs deeply) Money when I first learned about that I was really resentful they re paid. You think, oh great, what were their reasons for doing it? Hardest of all for some of this group was the idea that they potentially (or probably) had tens or in the hundreds of donor siblings, all conceived via a donor who had been paid for his sperm. They argued that the powers that be should have been much quicker to realise the consequences of donation on the donor conceived child, and that a regulator should have been set up much sooner. They talked about the lack of regulation in the time they had been conceived, arguing that it beggers belief. Some of this group felt it was very important indeed that they try to make sure their voice be heard amongst the other lobbyists in the donation business, others were trying to redefine and rework their family relationships with the new knowledge in mind. Certainly all felt that it was crucial that the donor conceived adults voices be sought out, and that regulation and legislation pay much more attention to them. At one extreme it was argued that conception via donation was simply wrong, and that if it was the right of a donor conceived child to reject the validity of donor conception, then no donor conception should be allowed, since the opinions and beliefs of the donor conceived child it creates cannot be known at that point. Donation review October 19 Authority meeting Annexes part

264 Most argued that it would be unreasonable to stop a process which gave so many families such happiness, but that donation in general needs to be far more robustly and aggressively regulated. This group argued that if donation was to continue, the price to be paid should be that the donor conceived child should be protected from being lied to. Thus, they argued, the minimum requirements should be as follows : All parties involved should be given high quality, independent counselling to assess their suitability and to support them throughout the donation process, including after the donation/ receipt Clinics being held much more responsible for everything they profit from And a space on every birth certificate to indicate whether a child has been donor conceived or not so that no parent be allowed to lie to their child, however benign their intentions. Most also felt that there was pitifully little support for donor conceived children, particularly in the difficult period when they try to work out how they feel about being donor conceived, and about their families. They cited the support networks, services and resources available for adopted children, and pointed out the differential. They felt their identity resolution process was far more difficult than that for adopted children, but yet argued there almost no resources available for donor conceived children. There are loads of organisations for adopted children, but we ve got very little to have a more definitive DNA test. Where are the clinics when that s got to be paid for? They were particularly concerned that as well as support to help them resolve their identity, that more help and support in finding their donor siblings and donor parents should be available run by donor conceived children and adults for donor conceived children and adults Overview of Attitudes to Regulation (Across All Respondents) Whilst there were clearly differences in attitudes to the regulation of donation across the sample, some shared themes emerged. The most distinct was the suspicion of the motives of clinics in such a process: thus there was a general feeling that the clinics needed to be independently and robustly monitored and regulated to make sure that they were behaving appropriately. They re the ones making the money out of this, they should take much more responsibility for supporting everyone involved (Egg donor) They re very quick to take the donation, but not quite like that when it comes to dealing with the donors (Sperm donor) There should be far more robust monitoring and regulation of their records. What they have to do is not that complicated or difficult, but they seem to get it so wrong so Donation review October 19 Authority meeting Annexes part

265 Existing Regulation often. And if they re not using the material to its best effect, then that s almost criminal (Sperm donor) Secondly, given the enormous variation in cases, most argued for a flexible approach to regulation, as well as one based on a holistic view of the process, with the interests of the donor conceived child, as well as the donor and recipient family, at its heart. It s never going to be easy to simple, but the clinics have only one aim in mind, and everyone else involved is so emotional. People need to make sure that proper support is in place for donors, recipients, everyone involved (Egg donor) Certainly the subject was seen to be such a complex and difficult one that respondents argued for a simple and transparent system of regulation, and felt that the more complex and opaque the regulation, the more easily people, particularly donors, would be put off getting involved. The more conditions you put on it, the more you ll put people off (Online forum with the general public) There were, however some key differences within the sample, with some (particularly donor conceived adults who discovered later in life and those who had donated sperm some time ago) arguing for tougher regulation, and others (particularly donor conceived children who were told from infancy) arguing for lighter touch regulation. The chart below outlines the rough positions the different sub-groups took. Overview of attitudes to regulation DC told as children General public? DC discovered as adults Donated sperm recently Donated sperm some time ago Weaker Egg donors Stronger Donation review October 19 Authority meeting Annexes part

266 Chart Two A few respondents raised the issue of the regulation of private donations and clinics outside of the remit of the HFEA. Given this was not part of the main objectives for the research we have not raised this issue within the main body of the report. However, these minority views are outlined briefly in Appendix C Reactions to Compensation, Reimbursement and Payments in Kind Underlying most respondents (across all sub-samples) attitudes to this topic was a strongly held belief that no-one should make money out of donating and that any compensation or reimbursement given should avoid attracting donors for the wrong reasons. The lump sum they pay in Spain, the worry is that people will do things for monetary reasons. You would just have people queuing up round the block to do it. It s hard to make sure people are doing it for the right moral reasons, you can t ever regulate that. (Egg donor) What they re talking about is paying people to give away their own children any payment, it just demeans the sanctity of human life. (Donor conceived adult) If the amounts were huge like America they may want to cash in and make a profit for it. I therefore think that amounts should not be too high in money, but realistic to reflect the time/ commitment/ emotional decision/ loss of work time etc. involved (Online forum with the general public) However, most also expressed a desire that citizens from all walks of life should be able to donate and receive donations, and that compensation and reimbursement should be at a level which meant no-one was put off by costs involved Compensation General public and donors Respondents often mentioned that compensation should be available to all, with those who were able to turn it down being able to donate that money to charities who could then use that money to improve the process: a charity to provide better information and support for donor conceived children; and/ or a charity to fund research to improve success rates for creating embryos and successful pregnancies. All felt that a limit needed to be set on any money paid to or claimed by donors, a limit which should be at a nominal level but which realistically acknowledged the expense involved in donating but without being enough to incentivise them to donate. Donation review October 19 Authority meeting Annexes part

267 Very difficult one! How can you compensate someone who potentially is giving you the opportunity to begin life? Yes, they are deserving, but how do you reward the discomfort that they have to endure to do so? Is cash enough? I don t know. There is the possibility then that we would have people donating eggs and sperm willy nilly for money. What are the ethics involved? (Online forum with ethnic minority respondents) Whilst all argued that it was very important indeed that the process be, and be seen to be fair to all involved, they also felt that this need for fairness needed to be balanced against a need to avoid over-complication (such as having different levels of compensation and reimbursement for men and women). The money was nothing to do with it, and if they started making it any more complicated (by tailoring payments to income for instance), then it would definitely put more donors off (Sperm donor) There was some considerable discussion of the terms used in this context: members of the general public in particular were sensitive about any terms which implied payment or profit. Terms such as compensation were similarly problematic, implying donors had lost something. Generally, it was felt that gamete donation was a unique type of donation and couldn t be compared with any other kind whether that be blood or organ donation. The resulting child was felt to change the whole nature of the donation and thinking about compensation and reimbursement. Some objected quite strongly to the comparison of gametes and jury service, feeling that it trivialised the value of gamete donation. For me it would be a set limit with no exceptions, even if that set per hour or per day. I again appreciate that that there is more physical and mental impact being a donor than doing jury service - but donors should be doing it for the right reasons - not always to raise a few quid (Online forum with the general public) In order to ensure that people from all income levels were able to take the time out and physically attend clinics, most approved of the payment for loss of earnings, however it was felt that this should be a straightforward flat rate to make this as fair as possible. To sum up then : the general public and donors felt that compensation for loss of earnings and expenses were fair, but that the process should be as simple, and as transparent as possible. Donor conceived adults Donor conceived adults, who had found out as adults, tended to be extremely uncomfortable with any monetary transaction associated with donation, however they also accepted that if donation is legal, well regulated and properly supported, that it would only be by providing compensation that a good cross section of society would be encouraged to donate. There was no ideal answer for them: it was a matter of Donation review October 19 Authority meeting Annexes part

268 balancing the need for a broad range of donors with eliminating financial motivation from the process. How can you prevent children being turned into commodities within this process? (Donor conceived adult) It s just the knowledge that money changes hands. It s not right, but you can t see how it s possible without at least covering out of pocket expenses. Oh, it s just so difficult (Donor conceived adult) Finally, we specifically prompted respondents to consider the idea of compensation for inconvenience, which is currently not paid. The discussions around this proposition were very interesting indeed. A large proportion of the respondents were extremely uncomfortable with the idea. They felt that the existing system was fair and appropriate, and that the introduction of compensation for inconvenience would bias the financial side of donation to payment, or making money, and thus function as an inducement. Again, this separate compensation or payment was felt to make the process yet more complicated, and thus be potentially off-putting for donors. Most felt that a simpler, single compensation should be paid, rather than a combined compensation for x and compensation for y. A few within the sample a few egg donors and donor conceived adults who had found out as very young children - felt that it would good for the system to provide a simple thank you (rather than compensation for inconvenience ) over and above reimbursement and compensation for loss of earnings at the level of 20 to 50, however this was not a common suggestion. Those who suggested it argued that there were other checks and balances in place to ensure donors were acting for the right reasons, and that such a token thank you would rather be a simple gesture to recognise the importance of the donation made. However, for the majority it was felt that another type of payment would overcomplicate the process, and would edge the payments made towards an unacceptably high level of compensation. Most respondents felt that compensation for inconvenience was unquantifiable, and actively resisted having to try to put a figure on this. The feeling was that any donor (who was doing it for the right reasons) would expect a level of discomfort and should not be specifically compensated for that. Uniquely amongst the samples included in the research, donor conceived adults who have known since birth were prepared to see payments to compensate for inconvenience made, again in the hope that such payments would allow a broader range of donors to come forward. In contrast, donor conceived adults who found out as adults wanted to see payments and financial compensation remain at the token level, but like others, also wanted to see the system become completely transparent. Donation review October 19 Authority meeting Annexes part

269 Reimbursement General Public The issue of reimbursement was felt to be a relatively easy question: most, except for a few donor conceived adults who wanted money completely taken out of the system, felt that it was only fair that any expenses donors had incurred in the process of donating should be reimbursed. Indeed many members of the general public in particular, struggled to separate out compensation and reimbursement since they were both mechanisms for making sure that donors were not out of pocket. (N.B. Once again, they kept arguing that the reimbursement and compensation should be as straightforward, transparent and simple as possible to be seen to be fair, and easy to administer. Whilst few accepted the idea of a lump sum, there was general support for a simple, single reimbursement/ compensation payment.) However, in relation to reimbursement of expenses as an issue, given this was a simple reimbursement of what had been paid, most were comfortable with the idea of some receiving more than others, particularly so that those in rural areas can donate. Again, they didn t wish to dwell too much on the detail of this, otherwise they felt it would become so complicated as to be a disincentive to donors. Donors Similarly, donors argued that the process of claiming and receiving compensation and reimbursement should be simplified and that pressure should be put on clinics to improve their processes and administration. They complained that clinics could be slow to provide reimbursement, disorganised and not always following the letter of regulation. Many argued that they hadn t claimed personally, or hadn t claimed the full amount they were entitled to, but the general feeling was that it should be offered, and that no donor should be out of pocket because they had donated. The principles are all fine, I agree that donors should be paid for their loss of earnings, and have their expenses paid, but in practice it seemed to be an awful lot more complicated than it needed to be. And the clinic wasn t always clear about what you were entitled to and what you weren t I didn t bother in the end (Sperm donor) There were also some complaints about having to incur some unnecessary expenses because of the inflexibility of the clinics. The donors, but also the general public argued that they should be forced to open extended hours so that donors didn t have to take too many days/ too much time off work. I can't imagine it would take more than a couple of hours so if clinics were open until 9pm people could come after work and if they were serious about it I don't think that would be too much of an inconvenience. (Online forum with the general public) The 250 limit sounded reasonable for most, as it was at a low enough level to avoid incentivising and inducing the wrong sort of people from donating. Donor conceived adults Donation review October 19 Authority meeting Annexes part

270 Again this group was split between those who were extremely uncomfortable with the whole idea of money being involved in the creation of a child, and those who had very little problem with increasing the sums available to compensate/ reimburse donors to encourage the maximum number possible to donate. I m sorry, I seem to keep saying the same thing, I m so uncomfortable with the idea of money exchanging hands at all (Donor conceived adult) I can t see why it shouldn t be more that way you d encourage more people to donate (Donor conceived adult) Benefits in kind Across the board respondents found the issue of benefits in kind a very difficult, complex and controversial issue, one which they struggled to resolve. Most argued that they could see both sides of the argument. Donors and the general public were generally of the view that in balance, such benefits were a good thing, provided robust and in depth counselling was provided, and if the couple involved were prevented from access to benefits in kind unless they were judged to be reasonable, and not just looking for a baby at any price. Donor conceived adults who had found out as adults tended to be against it in principle, on the grounds that no-one had a right to have a child, and that the practice pandered to parents desperation and commoditised children. This said, however, all respondents struggled with arguments for and against. They recognised that for couples having problems conceiving, unable to afford IVF (which was generally seen to be very expensive and difficult to source), a benefits in kind arrangement would give them opportunity they otherwise wouldn t have. They argued that if someone was trying to conceive themselves then the value of benefit in kind would never be an incentive, that such couples would necessarily only be donating because they too desperately wanted to have children. No-one goes through all that unless they really want to have children, and if it means they have the chance to have a child that otherwise they wouldn t have, then I don t see the problem (Egg donor) Finally, respondents often pointed out that no money actually changed hands, and therefore no-one was technically profiting from a benefits in kind arrangement. I know what it s like to struggle to conceive, and if I couldn t have had children it would have been incredibly hard. I think it s not really comparable to money, and if it gives them the chance of a child, you can t say no to that, can you? Donation review October 19 Authority meeting Annexes part

271 On the other hand, most respondents had varying levels of discomfort with the arrangement : (Egg donor) significant discounts or even free treatment was felt to be a cash equivalent for some It doesn't feel right someone else receiving a discount in treatment, once they have donated their eggs. At the end of the day, you are donating a part of you, on perhaps several occasions, for monetary gain, (Online forum with ethnic minority respondents) there was a concern that unfair pressure would be put on less well off couples to donate; I m not sure about benefits in kind, part of me thinks its a good idea as the cost implications may really help the couple trying to conceive. However, this also puts added pressure on the couple who may have been against the idea of being a donor but it may seem like the only way for them to achieve their family. (Online forum with the general public) it was felt that such arrangements would bias the type of eggs available that it would be much more likely that a woman from a less well off background would be much easier to persuade to donate; So the vast majority of eggs that will be available will be from low income families. That s fair! (Donor conceived adult) You just worry that pressure will be put on couples that can t afford IVF and that s not right (Donor conceived adult) related to this, respondents argued that it was unfair that those unable to afford IVF without donating a proportion of their eggs were less likely to have a successful pregnancy as they had fewer eggs to use in IVF cycles; The one thing about that is that the donor s only left with half their eggs to implant, which cuts down their chances (Sperm donor) for many this system felt like social engineering and therefore essentially unfair; finally, some respondents, particularly donor conceived adults, were uncomfortable with the idea that some couples would obtain what would in normal circumstances amount to thousands of pounds worth of treatment if they donated. They argued that clinics put undue pressure on couples to donate, and that it devalued life and the donor conceived child resulting from the process. For donor conceived adults (who d found out as adults) the arguments against were more powerful than the arguments for. They felt it put far too much pressure on couples to donate. Their concern was that couples would not be given the time and Donation review October 19 Authority meeting Annexes part

272 space to consider the consequences of donation, and that the clinics would put pressure on them as they wanted the donated eggs to use. I think that should stop immediately. How can a couple make a rational decision if they re being promised a chance they d otherwise not have (Donor conceived adult) They were also suspicious that such deals pandered to wealthy couples desire to have the perfect family, with those who could afford the donated material and IVF cycles benefiting at the cost of lower income families chances of conceiving (because of their reduced number of eggs). OK, you give us half your eggs and we ll give you a chance of having a baby. Otherwise forget it. It s awful (Donor conceived adult) Whilst few respondents managed to resolve these difficult and competing thoughts, most felt that it was difficult to deny lower income families access to donation, and so they tended to argue that the current practice could continue, on two conditions : that clinics provided excellent, appropriate counselling for all involved; that the clinics were robustly and independently monitored and regulated. Sperm sharing and freeze sharing across all respondents The practice of sperm sharing was also very controversial indeed, as it seemed to be encouraging the very un-british and unfair practice of queue jumping. Again, the worry was that it would put undue and unfair pressure on partners, but that more than this, it would put pressure on couples to involve people who otherwise wouldn t be involved in the process such as friends, or family members. Not sure about the pooling system, I feel the donor may feel obliged to donate to a stranger when perhaps they would not consider this under normal circumstances. (Online forum with the general public) For most respondents, this practice seemed to represent an unholy marketing exercise, a way of increasing the supply of donations to clinics. They argued that if clinics could not persuade men to donate under normal circumstances, then they should not be allowed to leverage a situation when couples were in crisis to their advantage. Finally, there was some confusion about freeze sharing. Many found it difficult to envisage when this would be appropriate, and many assumed that the storage of gametes would be free. Certainly the mention of a value of 500 underlined their concerns about clinics commercialisation and their motives Reactions to Family Donation (N.B. Two types of intra-family donation were covered in the discussions : mixing gametes of genetically related family members (e.g. cousins), and donation which does not involve mixing gametes of genetically related family members (e.g. one sister donates her eggs to another sister). Donation review October 19 Authority meeting Annexes part

273 This was an issue everyone within the sample felt to be important and very difficult. Most argued that relationships within any family can be difficult, and given the emotionally charged context infertility produces, extreme care should be taken when thinking about intra-family donation. Many felt that the resulting confusion of relationships of intra-family donation was a significant concern. They argued that the donor conceived children would find the roles within the family at best confusing, and at worst, seriously weird. They argued that people in normal families are capricious, illogical, and selfish, and that thus they are a dangerous, emotionally charged context in which to think about donation. This can cause family feuds in the future, if one family member donates and in the future his child dies or they can't have children then there will always be a thought that this is my child. If there are cultures where families marry within families or casts then this would definitely cause problems. Not just through families but genetical problems. (Online forum with members of ethnic minorities) However, most also felt that it would be very difficult to refuse or fail to offer help to a family member who was desperate to have children. Indeed, throughout the discussions, many respondents raised this circumstance as the only one where they personally would consider donating. I would want to help out my family for example if my sister needed some help I would do that for her for nothing. (Online forum with the general public) As a general principle, all felt that no-one should ever be allowed to pressurise someone into donation, and family members were perhaps most under suspicion as being prone to this. Again most respondents found it very difficult to say it shouldn t be allowed although they had real concerns about family donation. They identified some basic conditions and requirements for any family involved in intra-family donation. There was a need for all to be well informed by an independent (i.e. not only clinics who stood to benefit from the donation and subsequent IVF), credible and trusted source. Family members needed to agree on the ground rules before donation went ahead, and then stick to those rules (e.g. how many attempts they would make, what they would do with any gametes not used, how and when they would tell any resulting child about their origins etc.). I did two cycles, and they failed. She s still really desperate to have a child, but I just don t think it s a good idea to go through it all again. I m really sad for her, but you have to think (Egg donor) (N.B. Respondents were particularly concerned about the infertile couple putting significant pressure on the potential donor such that their health was compromised, e.g. by asking them to have more than one donation if the first didn t work etc.) Donation review October 19 Authority meeting Annexes part

274 They felt it was extremely important that families thought long and hard, and talked about, the welfare of the donor conceived child and resolved concerns they had about their quality of life, confusion about the roles within the family, and conflicting advice or even parenting given to them by the family members involved in donation. We sat down and agreed it all, when they d tell the child etc. That was really important to me, I wanted us to have our story straight (Egg donor) Whilst counselling was highlighted as critical throughout this report, it was felt to be absolutely key and essential in relation to intra-family donation. Most respondents wanted to see compulsory counselling for all involved before, during and after donation. I could never watch my sister go through that whilst having a family of my own. Whatever part is played within the process clinics MUST give counselling and naturally staff must be fully qualified, everyone copes with things differently before, during and after! (Online forum with the general public) Even given these conditions above, many respondents across all the groups included in the research struggled with intra-family donation. They argued that any normal family would have difficult and dynamic relationships, and that when there is a misunderstanding within a family, it can be very damaging to many involved. They also argued that families are very individual and that blanket regulation would necessarily be inappropriate. They were also all acutely aware that if someone in their own family was struggling to conceived, they would like to think that they would be willing to help. The only exception, once again, was provided by donor conceived adults who had been told as young children. They argued that nowadays, families were very dynamic, mixed bodies, and that family donation should be accepted and talked about. Interestingly, a couple of egg donors who had donated to a family member argued that with hindsight, they would not offer to donate within their family in the future. They pointed out that even within the most rational and open family, emotions in this context would necessarily run high, and that there was a degree of pressure which was difficult to deal with. Generally, however, the majority of respondents were reluctant to recommend any change, and argued that the HFEA should have clear best practice advice for clinics, and that the key service of counselling should be mandatory. You can t lay down a set of hard and fast rules, it s difficult with families. Counselling is crucial, everyone involved should be made to go through it and be approved as being emotionally stable enough (Sperm donor) In terms of making decisions about what the circumstances under which sperm/ egg mixing should be allowed, respondents even donor conceived adults who had found out as children - were generally astonished to be asked. Further, many had Donation review October 19 Authority meeting Annexes part

275 assumed that there would be strict rules already in place to prevent incestuous mixing. They argued that they were not qualified or appropriate people to make that decision, but felt that at least incestuous equivalents would not be allowed. Good God. I would have thought that was a no brainer. Of course it (incestuous equivalents) should be banned. For all sorts of reasons (Donor conceived adult) That s shocking. Even with cousins I think it s too close look at all the genetic problems they ve got when they allow it in natural relationships (Egg donor) Mixing of gametes of immediate family members (who are genetically related) poses an extreme risk to the welfare of the child and should be banned immediately. Frankly, it is astounding that this is not already banned. First-cousin genetic parenting should also be robustly discouraged or banned. (Sperm donor) The pooling scheme was again felt to be very controversial as it would a) put unfair pressure on the family member to accept making a donation into a clinic s pool (rather than donating to help the specific family member/ couple), and again most were extremely uncomfortable with the idea of queue jumping, particularly in such an emotionally charged context. Once again, respondents expressed a hope that the HFEA s best practice guidance, and the mandatory provision of counselling would help resolve some of the issues they had identified. My sense is that guidelines rather than controls should be applied here. Essentially, if some types of family donation are banned, those people who are thinking of it are more likely to go outside the licensed system. Counselling and guidance seem the better option to me. (Online forum with those with an active faith) Like others involved in the donation process, donor conceived adults who had found out as adults felt that the issue of intra-family donation was an incredibly difficult one, although some felt that at least they might have had a better chance of being told earlier about their identity and origins if they had been conceived via a donation from one (or two) members of their family Reactions to Family Limit Most respondents had a background awareness that in the early days of donation, men were able to donate regularly over a period of years. They had the impression that this had been stopped because of the risk of consanguinity and the need for genetic variety in donated material. As someone who donated when there were no limits, I think it s vital that there are limits. There are so many reasons to worry anyway, but to know there s a risk of two young people forming a relationship like that (Sperm donor) Donation review October 19 Authority meeting Annexes part

276 They felt that it could be assumed that limits had been introduced, and that some procedures would be in place, to distribute donated gametes geographically to reduce the risks involved. Again you have to go back and look at how the clinics manage the material. And it s not good enough. (Sperm donor) Interestingly, most of the general public were shocked that the current limit had been set at ten families. They tended to multiply this by an average of 2-3 children per family, and so interpreted this as a donor being able to create up to 30 children. For almost all members of the general public, this was a very high number, and if anything, they felt that if the limits be changed they should be lowered. I think 10 is too much although it is good to know that this upper limit is rarely carried out and I like that the donor can specify a lower limit. If anything I think the limit should be reduced not increased (Online forum with those with an active faith) They had a number of concerns: They were so cynical about the clinics management of donors and their gametes, that they suspected they would not adequately manage and track the distribution of the material. They were also concerned about the psychological effect of multiple donor siblings on donor conceived children. After having read this I am tending to agree with this limit of 10 people. Mainly because if all the children wanted to contact their donor in later life both the child and donor would feel 'closer'. If I was a donor child and I thought I could possibly have say 50 donor siblings out there I think I would find that very hard to deal with. (Online forum with the general public) A few donors felt that the limit could or should be raised, however they were very much a minority. So long as they re on top of the distribution of the material, I ve not got a problem with it. My main concern is consanguinity (Sperm donor) Indeed the majority view was that the limit of 10 should certainly not be increased, and that the number could usefully be lowered, particularly if clinics managed the donations more efficiently. The donors were even more cynical about the clinics management of the donated gametes and were also concerned about the impact on the donor conceived child. I suspect some ended up outside the UK. I know they had an agreement for exchanging it, but they managed that extremely badly. So I may have tens of children in the UK and many more overseas Donation review October 19 Authority meeting Annexes part

277 Donation review October 19 Authority meeting Annexes part (Sperm donor) Donors were also very aware that any donor currently making a donation could expect to be contacted in 18 years time, and this had an impact on their attitude to the family limit. Most of those who had recently donated felt that given they had accepted the removal of anonymity and were still happy to donate, they had thought through the possibility that the donor conceived child might want some kind of relationship with them. They therefore wanted to see the family limits set at a level which allowed them a reasonable chance of providing the kind of relationship the donor conceived child would want. Donor conceived adults, perhaps not surprisingly, felt that the limit was very important indeed, and most felt that the current limit of 10 was set too high. They argued that the idea they might have 20 to 30 donor siblings difficult to deal with. All donor conceived who had found out as adults wanted to see the family limit significantly reduced, and talked about their right to have only as many donor siblings as they could expect to form some kind of reasonable relationship with. It should be limited to the number of people you could realistically have some kind of relationship with if you want (donor siblings) Some went further, and argued that the limit should be brought down to 1 family only because of the importance of donor conceived siblings being able to have a proper relationship with one another. The more there are (donor conceived siblings) just means there s going to be a lot of half brothers and sisters to deal with and children for the donor to deal with. Most people would want to trace their donor and it would be a lot for that donor to juggle and it would be impossible for the donor to have a relationship with more means a poorer relationship. (Donor conceived adult) Most respondents understood the implications of donor shortages, and understood the argument for using donations for more families. However, on balance, they felt that increasing the limits was not the right way to resolve the shortage and to do so would be at the cost to the donor conceived children (in terms of both the increased risk of consanguinity and reducing their chances of forming any kind of meaningful relationship with the donor siblings). When provided with information on family limits, most respondents were shocked at the very low usage. They had expected that clinics would use all, or at least a very high proportion, of something so valuable as donated gametes. They argued that pressure and sanctions should be put on clinics to improve their performance. Respondents pointed out that clinics were profiting from donations, and thus they should take more responsibility for managing and using a higher proportion of the donations already made. Some within the general public sample argued that donations were so valuable that there should be a one-child limit for recipients to allow the maximum number of couples access to donated material. They felt that keeping donated gametes in

278 case the couple wanted more children later was unfair to those couples who had difficulty obtaining donated gametes. However, the general consensus was that the current limit is high enough, even too high, and that the guiding rule when setting such limits should be the risk of consanguinity and the right of the donor conceived child to have few enough donor siblings to allow them a reasonable relationship with one another. Some, particularly donor conceived adults, felt that the risk of consanguinity would only be resolved when all donor conceived children are guaranteed to be told that they are donor conceived. For some this meant a note on their birth certificate indicating they were donor conceived. I don t know how other donor conceived children manage it if they weren t told. For me it s a big part of my identity and I know that if I was contemplating getting intimate with someone, I would have already talked about being donor conceived. You hope that if they were donor conceived too that they d bring it up too, so no, I don t think there d be much of a chance that we make that mistake (Donor conceived adult) The view amongst the sample was that a solution to the donor shortage should be sought by improving the clinics and their management of their precious donations, and that raising the limits on the number of families a donation can be used to create was not the solution. Donation review October 19 Authority meeting Annexes part

279 APPENDIX A FACT SHEETS STIMULUS USED WITHIN THE FORUMS AND INTERVIEWS Compensation, reimbursement and benefits in kind What do you think about compensation for sperm, egg or embryo donors? Should donors be compensated for the time and inconvenience involved with the process of donation? If so, what is a fair amount? Is the current system working well or does it need to be changed? We d like to know what you think a fair and moderate compensation scheme looks like and what ethical principles the scheme should be based on. What is the current policy? Compensation Our current policy allows sperm and egg donors to claim reasonable expenses in connection with their donation (e.g., travel costs). Donors may also be compensated for loss of earnings up to for each full day (as for jury service), with a limit of 250 for each course of sperm or egg donation. Clinics must keep a record of the expenses and compensation they pay, including receipts. We do not allow donors to be compensated for the inconvenience associated with donation. Clinics can only give donors compensation for expenses incurred within the UK. So, clinics cannot currently bring in donors from other countries. However, they can import eggs or sperm from abroad. Benefits in kind We also allow egg or sperm sharing, which is a benefits in kind system. Egg sharing is where a woman donates some eggs at the same time as undergoing IVF treatment herself. In return, the clinic can offer a significant reduction in the cost of her treatment. Sperm sharing schemes is where couples can get a reduction in their treatment costs, or are moved up the waiting list, in return for the male partner (or another person they provide as a donor) donating their sperm. Freeze sharing schemes allow women to store their eggs for future treatment (free for about 5 years) in exchange for donating some of their eggs. What changes would be possible within the law? Outright payment for donation is not allowed by European law. Because the act of giving is generous and humane, the law does allow donors to receive compensation for Donation review October 19 Authority meeting Annexes part

280 inconvenience. This is different and additional to compensation for expenses and loss of earnings. The HFEA decides what kind of compensation should be given to donors within these legal limits. Currently we permit compensation for expenses and loss of earnings. Other countries have implemented the European law differently. For example, in Spain egg donors are given a lump sum of around 760 to cover their expenses, loss of earnings and inconveniences. In France, however, donors receive compensation for their travel expenses only. What does donation involve? Before donation Clinics must offer counselling to all donors; many insist that they undergo counselling before donation takes place. Egg donation Egg donation is an invasive procedure. Before starting, donors are tested for infectious and genetic diseases. They are then given a series of hormone injections to help develop and mature eggs within the ovaries. Once the eggs are matured, they are collected, under anesthetic, by inserting a needle into the ovaries through the vagina. Donors will probably need at least the day after the operation off work. Serious side effects are possible, but rare; it is common for donors to feel tired, abdominal pain, bloating, mood swings and headaches. Egg sharing Women donating eggs in an egg sharing arrangement undergo the same procedures and are subject to the same requirements as egg donors. Some of the eggs collected from the egg sharer are used for her treatment and some are donated for use in another woman s (or sometimes for two women s) treatment. The egg sharer and the egg recipient do not meet each other. Sperm donation Sperm donation is less invasive than egg donation, but usually more time consuming. It starts with blood tests for infectious and genetic conditions, as well as giving a semen sample so that sperm quality can be checked. Sperm donors are then asked to produce semen samples over several weeks or months. The donor needs to abstain from sex and alcohol for at least two days prior to each donation. Sperm donors have to go back to the clinic six months after their last donation to have further screening tests. After the donation Donors are asked to provide biographical information and a message to any child born from their donation. Since the law was changed in 2005, children born from a donation will be legally entitled to access identifying information about the donor once they reach the age of 18. Donors have no financial or legal obligations towards the child. What motivates people to donate? Little is known about what motivates people to donate sperm or eggs, but what is known suggests that: Donation review October 19 Authority meeting Annexes part

281 some donors want to help a friend, family member or stranger to have a family in other countries some wish to receive financial compensation most egg sharers would not donate if there were no incentive to do so many egg sharers want to both help themselves and to help someone else. Certainly in relation to egg donation the benefits in kind are part of the reason why people donate, but a main motivator appears to be a desire to help others. What principles should be kept in mind? The question of whether donors should be financially compensated and, if so, how much, evokes strong views. There are competing principles and concerns. Some of the principles relevant to the issue of financially rewarding donors include: Altruism (selflessness) Fairness Free choice Welfare of the future child Safety Respect for family life Pragmatism (a practical solution) It may not be possible to reach a solution that respects each principle equally. For example: to emphasise altruism we could insist that donors do not receive financial compensation. This would mean, however, that donors could end up out of pocket, while clinics may make money from their good will, which could, in turn, conflict with the principle of fairness. How could the current system change? Compensation Our current policy tries to ensure that donors do not benefit from their donation. It allows them to be compensated for loss of earnings and expenses but not for inconvenience. Feedback from clinics, however, suggests that some donors end up being out of pocket and that the system is more complex than it needs to be. Ensuring donors are not out of pocket or paying some sort of compensation for inconvenience may remove a barrier to donation. Benefits in kind Offering treatment services in exchange for donation is controversial. Some believe that benefits in kind provide a powerful incentive to donate and are, in fact, no different from paying donors. Others see it as improving access to treatment for people who would otherwise be unable to afford IVF at the same time as increasing access to donor eggs for those who need them. Concerns have been raised that egg sharing may cause psychological harm to the donor if she is unsuccessful with her treatment, but the recipient conceives. However, these concerns have not been borne out in the small number of studies on the experience of unsuccessful sharers. Overall, the limited knowledge about egg sharers experiences of treatment suggests that they feel adequately prepared and the majority are satisfied with their treatment. Donation review October 19 Authority meeting Annexes part

282 Family limit for donated sperm and eggs Do you think the number of families created with sperm or eggs from a single donor should be capped? Should the current limit of 10 families be raised? Or should it be lowered? What is the current policy on the family limit? Clinics must ensure that sperm (or eggs) from a donor are used to create no more than 10 families; There is no limit on the number of children within each family. Donors can specify a lower limit if they wish. Sperm imported from abroad may be used for more than 10 families worldwide (i.e., the family limit only applies in the UK). The current limit is based on the perceived social and psychological interests of donors and donor-conceived people in maintaining a relatively small number of siblings/children. It is also there to minimise the possibility of two children from the same donor having a relationship with each other without knowing they are genetically related. How do fertility clinics keep to the family limit? Keeping within the family limit is straightforward if a clinic recruits donors and uses the sperm or eggs for their own patients. However, some clinics particularly sperm banks - recruit many donors and pass the sperm onto other clinics within the UK. These recruiting clinics are responsible for ensuring that the 10 family limit is not exceeded and have procedures in place to do so, based on guidance in our Code of Practice. We know that there are some operational difficulties with how clinics monitor and enforce the limit. What do we know about donors and how their donations are used? The majority of egg and sperm donors, registered since the removal of donor anonymity in 2005, agree for up to 10 families to be created from their donation. The majority of donation clinics think that most donors (apart from those donating to a friend or family member) would be prepared to donate to more than 10 families. Is the family limit ever reached? Less than 1% of donors create 10 families. On average sperm donors create one or two families, with one or two children in each family. On average, clinics use sperm from one donor to treat only six patients, with an average of two cycles of treatment per patient. In addition, 19% of sperm donors registered with the HFEA are never used. Should the family limit be changed? The majority of sperm donations rarely result in 10 families. Any rise in the family limit would unlikely lead automatically to an increase in donor supply unless operational difficulties are addressed. The two main considerations when thinking about whether the limit should be raised, lowered Donation review October 19 Authority meeting Annexes part

283 or kept the same are: 1. The risk of two children from the same donor having a relationship with each other without knowing they are genetically related The risk depends on: how widely sperm from one donor is used (i.e., if all samples are used at one clinic or at a number of clinics across the UK) the population of the area where the donor treatment is provided how mobile the population is (sperm from one donor may be used just at one clinic in a low population area, but this only presents an increased risk if the children born from that donor reside in the same area). 2. Psychological effects on donors and donor-conceived people Some people feel that it is in the interests of donor-conceived people (and their parents) to have a small number of genetic siblings and that the limit should be in line with the number of people a donor can have a meaningful relationship with. This is based upon the assumption that all people born in these circumstances know that they are donorconceived. As part of this consultation we will aim to find out more about the impact of donorconceived people having multiple siblings and the impact this has on donors own children. Donation review October 19 Authority meeting Annexes part

284 Family donation What are your thoughts on sperm and egg donation between family members? How should this form of donation be regulated? We want to know what you think. Within a family, who can donate? Family donation is most common between sisters, cousins and brothers. However, we have had reports of donations from: mother to daughter daughter to mother niece to aunt father to son, son to father Potentially, there are two ways to conceive through family donation: Creating an embryo with eggs and sperm from family members who are genetically related (e.g., mixing sperm and eggs of first cousins) Creating an embryo with eggs and sperm from family members who are not genetically related (e.g., mother to daughter egg donation) Why donate sperm and eggs to family members? Receiving sperm or eggs from a family member is an attractive option for some as it: maintains a genetic link between the donor recipient and their subsequent child can avoid long waiting lists at the fertility clinic overcomes the uncertainty of using an unknown donor in treatment However, it can also raise additional ethical and social issues, such as: confusing genetic/social relationships for children how to tell the child about their origins and managing non-traditional relationships throughout life the potential for pressure to be placed on donors by family members What is our current policy on family donation? We do not currently have any specific rules on donation between family members. We don t say who can donate to who or what special considerations clinics take into account when they are presented with requests for donation between family members. Instead, we issue general guidance on donation which covers the welfare of the future child, consent and counselling. Some clinics have developed models of good practice and may, for example, require both donors and recipients to undergo counselling, both separately and together, before treatment commences. Some clinics have introduced pooling schemes. If a brother, for example, wishes to help his infertile sister, but cannot donate to her directly, he could donate to an unknown woman and, in exchange, his sister would be prioritised for sperm from an unknown donor. Donation review October 19 Authority meeting Annexes part

285 The law does not ban the mixing of sperm and eggs between family members including close family members, such as a brother and sister. However, no mixing of gametes between close relatives is known to have occurred in the UK and a clinic would need to consider any such request in the context of their legal duty to consider the welfare of the child. How should family donation be regulated? There are a number of possible options for the regulation of family donation: Bans We could ban the mixing of sperm and eggs between close, but not necessarily genetically related, relatives (i.e. those who would otherwise be banned from having sex with each other under incest laws, which would include, for example, an adoptive father and daughter); or We could ban the mixing of sperm and eggs only between close genetic relatives as only the mixing of their sperm and eggs poses a medical risk to the future child. Additional guidance to clinics We could issue best practice guidance to clinics, or We could ask clinics to have a strategy in place to handle cases of family donation; or We could encourage the counselling profession to issue best practice guidance to clinics. Leave things as they are We could leave things as they are, as clinic staff have been dealing with family donation for several years with no reported problems and no mixing between close relatives (e.g. brother and sister or father and daughter). Donation review October 19 Authority meeting Annexes part

286 APPENDIX B DISCUSSION GUIDES CPR1206 HFEA General Public Discussion Guide Stimulus to be fed in throughout the Forum to allow us to probe spontaneous concerns/ thoughts/ ideas/ opinions. (N.B. Respondents have been supplied with a full explanation of how the Forum works, MRS rules, and the aim of the research prior to the Forum opening) Day 1 Q1 Thank you so much for volunteering to take part in this Forum. I m sure it s going to be extremely interesting. Can I also just remind everyone that your Username is NOT your real name, so everything you say on this Forum is completely confidential. The first thing I d like to do is to ask you a little bit about yourself just so we get a sense of whose company we re in on the Forum! Can you tell us very briefly: - Do you live with family/ friends and who are they? - Are you working/ studying/ looking for work, and what kind of thing is that? - If you manage to get a spare minute where you can do just what you d like to what do you do! Blind Q2 This is a very open question and you ll not be able to see how others have answered until you post your own. Q3 If I say donating sperm or eggs what sort of words/ phrases/ associations spring to mind. Don t think about this too hard, we just want to see what your immediate, top of mind associations with sperm/ egg donation are. This isn t scientific, so just let it flow! Can you now tell us a bit about how those impressions/ associations have built up : - how much would you say you know about egg/ sperm donation - how much would you say you know about the whole process of donating what do you know, what do you feel you don t know - what motivates people to donate do you think, and what stops others from donating? - how do you personally feel about donation what concerns do you have, what do you feel is good about it Donation review October 19 Authority meeting Annexes part

287 Upload pdf Q4 And finally for today Day 2 Blind Upload pdf Q1 Q2 Here is a short factsheet from the HFEA about The Changing Landscape of Donation. Can you please have a read through this. - what do you think having read through information about donation in the UK - have you changed your mind about anything, is there anything you would like to raise now you know more? - what issues do you feel are most important when talking about egg and sperm donation now? That s it for today don t forget to log in again later and see what others have said and to check whether I d like to know more about your opinions. Have a good day, look forward to seeing you online later! Welcome back! Today we re going to be talking in depth about compensation for donors. I m going to ask you to read through some information shortly, however, I d love to know what you think before you read through that. What do you think about compensation for donors what kind of compensation should they get, do you think (Again, you won t be able to see what others have written until you post your own thoughts) Here is some further information from the HFEA. Please take a moment to read this through. - how do you now feel about compensation - should they get expenses (travel and subsistence, child care fees) and what should that include - should they be compensated for loss of earnings and again what should that be - and how about compensating donors for the physical discomfort and potential psychological effect and what thoughts do you have on what that should be Q3 Thinking about an overall limit for compensation what do you feel that should be (what would you compare it with when you re deciding how much that should be a daily rate, comparison with jury service payment, maternity leave payments etc.)? Donation review October 19 Authority meeting Annexes part

288 Q4 Q5 Q6 How do you feel compensation for donating your eggs should compare with compensation for donating your sperm? Talk us through how you make that decision please. Finally we turn to benefits in kind. After reading through the information, how do you feel about donors being offered benefits in kind - what do you think this should include - and should there be a limit on this and if so, how should it be limited? That s it for today many thanks for your comments. If there s anything else you feel should be raised in relation to compensation and benefits in kind, please use this tab to raise whatever you feel to be important whether I ve mentioned it already or not. Day 3 Blind Q1 Thank you! Welcome back again Day Three already! Today we ve got quite a lot to do, to I ll crack on. First topic (of 2) today is donations given to family members. How do you feel about one member of a family donating to another? - what concerns do you have - when would you say it s acceptable/ a good thing - what rules would you put in place about donating to family members and why (between whom, when, after what preparation etc)? Upload pdf Q2 Please click on this link and it will download a pdf which talks through some of the issues involved. Once you ve read through the document, please work your way through the following questions. - in your own words, do you think family donation should be controlled/ regulated and why/ why not - do you think family members (genetically related/ not genetically related) should be allowed to donate to one another and under what circumstances - if this donation was allowed, what rules would you want to see (e.g. clinics to give guidance to family members donating; counsellors to provide guidance to clinics; clinics to have a strategy in place before allowing family members to donate to one another) Blind Q3 Donation review October 19 Authority meeting Annexes part

289 Upload pdf Q4 Q5 Finally, I d like to talk about the limits on the number of families any one donor can create. Before I ask you to read some information on this what are your own thoughts on this? Now please read through this last factsheet. - what do you think after reading this? - what do you feel should be the maximum number of families that can be created using one donor s sperm or eggs, and what led you to think that Finally please use this tab to give us any other thoughts you have on the subject of donation anything you feel relevant! We re just love to hear what your thinking is, particularly now that you ve read through more in-depth information about donation. Donation review October 19 Authority meeting Annexes part

290 Outline Discussion Guide (Donors/ donor conceived adults) - Introduction, Code of Conduct, purpose, anonymity - broad discussion of knowledge and understanding of issues involved in donation : spontaneous concerns/ issues/ topics they want to talk about (moderator to list those concerns etc., and to work through them in turn, starting with respondents own agenda, then working through the prompted list below) - comparison of issues involved from each of the following : o sperm donation o egg donation o donor conceived adults - once all their spontaneous concerns, thoughts and issues probed and discussed in depth, moderator to raise the following : o what do they feel motivates people to donate o what do they see as the barriers to donation o how do they personally feel about donation o o what are their thoughts on what the general public know/ feel about donation how do they feel about the HFEA s Factsheet The Changing Landscape of Donation - moderator to then prompt the issue of Compensation, reimbursement and benefits in kind : what are the respondent s spontaneous thoughts on this issue (respondent given the HFEA Factsheet on compensation and benefits in kind) o o o o o o how do they feel about compensation should donors get expenses (travel & subsistence, child care fees) and what should that include should donors be compensated for loss of earnings and again what should that be and how about compensating donors for the physical discomfort and potential psychological effect; what do they think that should be how do they feel about an overall limit for compensation, what would that be, and what would they compare it with how about benefits in kind : how do they feel about this, particularly in the light of the factsheet what do they think it should include should there be a limit on this, and what should that be o how would they compare their thoughts on compensation to egg donors vs. compensation to sperm donors (and why) - moderator to then prompt the issue of Family donation : what are the respondents spontaneous thoughts on this issue (again respondent given the HFEA Factsheet) o how do they feel about each type of family donation and why o how do they feel family donation (each type) should be controlled/ regulated and why/ why not o if family donation was to be allowed (one or both types depending on their comments so far) then what rules would they want to see in place (e.g. clinics to give guidance to family members donating; counsellors to provide guidance to clinics, clinics to have a strategy in place before allowing family members to donate to one another) - moderator to then prompt the issue of Family limit for donated sperm and eggs : what are the respondent s spontaneous thoughts on this (respondent given the HFEA factsheet) o o how do they feel about limits being placed and why what do they feel should be the maximum number of families that can be created using one donor s sperm or eggs, and why - any other issues brought up and covered - thank and close Donation review October 19 Authority meeting Annexes part

291 APPENDIX C Views on Private Donations Background Many respondents made reference to non-regulated donation, in which private arrangements are made between donors and recipients, whether through personal contacts or matching services. HFEA felt that this was a topic which was a legitimate one to raise and debate, however because it was raised by so very few people, and since the question of the support for and regulation of private donations was not part of their consultation, it was decided to address this issue within an Appendix. Many respondents raised the problem of what they called dodgy, unregulated or purely commercially-oriented websites, which attempted to facilitate contact between potential recipients and donors. The assumption generally was that such websites, and non-regulated services were aimed at encouraging sperm donation. There was also some concern about informal or private arrangements between recipient and donor. Their concerns about matching and informal services usually clustered around worries about health and screening, and the potential for unfair pressure to be put on those involved. The overwhelming majority of those participating in the research felt very uncomfortable about such informal arrangements and matching services, and felt that the solution to their unregulated practices should be either a ban on their operation, or failing that, for all potential recipients and donors to ignore and avoid them. However, one donor in particular felt very strongly - that such services should, rather, be supported by a regulator such as the HFEA. He argued that finding a donor through this route could be faster and more information about the donor than is available through licensed clinics could be given to the recipient. He also argued that some preferred a known donor arrangement, in which there could be some relationship between donor and the child born. HFEA should end its attempts to denigrate and persecute the private donor community, and should recognise that this is a preferred choice for many recipients who wish to have face-to-face contact with their donor, and/or an ongoing relationship. HFEA should lobby government to bring private donations within a proper legal framework, thus removing the underground nature of the community. In particular, protection from spurious paternity claims should be enacted as a matter of urgency. The donor made a number of other suggestions about helping such donors, which has been forwarded to the HFEA. Donation review October 19 Authority meeting Annexes part

292 Annex K: Report on the clinic meetings Donating sperm and eggs: have your say Centre meetings report In February and March 2011 the HFEA held a number of meetings at licensed centres across the UK to discuss the HFEA s public consultation, Donating sperm and eggs: have your say. The purpose of these meetings was to explore current practice around sperm and egg donation and to seek views on the impact of possible changes to donation policies on clinics, donors, patients and donor conceived people. The meetings primarily focused on: Donor compensation, reimbursement and benefits in kind Donor usage and the donor family limit However, they also included a brief discussion on: Donation between family members Wider donation issues Four meetings were held (in London, Bath, Birmingham and Glasgow) which were attended by a range of centre staff who are involved or interested in donation, including nurses, embryologists, counsellors, doctors, quality managers and those directly involved in donor recruitment. Approximately 40 people registered to attend the London and Birmingham meetings, with 20 people registering for the Bath meeting and 10 people for the Glasgow meeting. On the day, however, many more people attended the meetings than were registered. A mixture of staff from NHS centres and private centres attended the meetings. Donor compensation and reimbursement The consultation sought views on whether donors should be compensated for one or more of the following categories: Inconvenience Loss of earnings Expenses Participants explored the impact of increasing or decreasing donor compensation on clinics, donors, patients and donor conceived people. Impact on clinics Participants expressed a mixture of views about whether changing donor compensation would impact upon clinics differently depending on whether they were NHS or privately funded. Some were concerned that an increase in donor compensation might adversely affect NHS centres who may struggle with financing an increase. Potentially this could lead to NHS centres no longer recruiting donors and withdrawing or limiting donor treatment. Also some thought that some private centres might pass the increased cost of compensating donors on to patients. Impact on donors Participants discussed the impact of increasing donor compensation on the number of people willing to donate. Most suggested increasing compensation would motivate more Donation review October 19 Authority meeting Annexes part

293 people to donate; although a few argued donor numbers would remain the same as donors are not motivated by money, especially since the removal of anonymity (for example, currently some donors do not claim expenses or loss of earnings). Some expressed concern that donors motivated by increased compensation may not fully consider the implications of donating. More counselling would therefore be required to allow clinics to identify those who had not fully considered the implications of donation. Some participants suggested people are discouraged from donating because the current compensation levels do not fully compensate people for their loss of earnings (ie, some donors are left out of pocket ). Some donors also feel insulted when asked to provide evidence of earnings, loss of earnings, receipts etc, to receive compensation. As a consequence, donors may fail to return for final a screening test which means that the sperm cannot be used and the time spent recruiting and handling him is wasted. Participants agreed that if compensation was further decreased, donors numbers would drop in the UK and more patients would seek donor treatment aboard. Some participants argued that there is a correlation between higher donor compensation levels in Spain and the higher number of donors available. Others, however, thought that demand is met in Spain because donation is anonymous and therefore reinstating donor anonymity (not increasing compensation) would increase donor numbers in the UK. Impact on patients There were a mixture of views about the impact of changing the compensation system on patients seeking donor treatment. Some suggested that patients would be happy for compensation to be increased if this led to shorter waiting lists for donor gametes and would mean fewer patients would seek treatment abroad. One participant suggested it was preferable to increase compensation in the UK, even though this may be less ethically desirable than maintaining current rates, if it meant more patients could be treated in the UK regulated environment. Others suggested patients would prefer to use donors who were motivated by altruism. Patients do not want to perceive that they are buying the services of a donor or buying a baby. However most patients would be happy for donors to receive modest compensation, ie, not life changing amounts of money or a system where donors could make a living from donation. Impact on donor conceived people Participants discussed the potential impact of increasing donor compensation on donor conceived people. Most participants argued that the impact on donor conceived people is unknown. Some questioned whether a donor being motivated by money was necessarily a bad thing. Others suggested donor conceived people would not be happy for their donor to have been motivated by money. Participants expressed the importance of donors considering the lifelong consequences of their donation, (ie, possible contact with donor conceived person) and donating for the right reasons. Some argued that the impact on the donor conceived is likely to depend upon the information given by their parents. Some may feel untroubled by compensation for the donor, instead feeling happy that their parents wanted them. They highlighted the discrepancy which exists paying for IVF treatment but not donor gametes. If the culture changed and it was generally accepted that donors were paid it might not have a negative effect on the donor conceived person. Donation review October 19 Authority meeting Annexes part

294 System of compensation The consultation sought views on the system of administering compensation for expenses, loss of earnings and inconvenience and asked whether egg and sperm donors should be compensated in the same way. Compensation for expenses and loss of earnings No objections were raised to compensating donors for their expenses or loss of earnings. The majority of participants agreed donors should receive a fixed amount of compensation for sperm and egg donation, rather than varying the amount from donor to donor or centre to centre. Introducing a fixed level of compensation would reduce the administrative burden faced by clinics which are currently required to keep a record of each donors exact travel expenses and loss of earnings, including receipts. A fixed level of compensation would be less confusing for donors who would be clear from the beginning how much compensation they would expect to receive. Some suggested that compensation levels should be higher for more sought after gametes such as of those from ethnic minority groups. However others argued that this would be the beginning of a slippery slope, leading to a market in gametes. Concerns were raised that giving donors a lump sum could be considered a form of payment rather than compensation. Some suggested that if a person ends up better off as a result of being a donor, then it is no longer donation. Participants suggested that people should not be incentivised to donate, but nor should donors be disincentivised due to strict compensation rules. Compensation for inconvenience Many participants questioned how the inconvenience experienced by a donor could be measured. For example, a donor who is in full time employment might suffer more time inconvenience compared to a donor who is unemployed. Also, people with less money may be more motivated to donate if a fixed amount of compensation for inconvenience was introduced. In addition, such a policy might not be fair in cases where different donors visit centres a varying amount of times yet receive the same level of compensation. Participants expressed mixed views on whether egg and sperm donors should be compensated at the same level. Some felt that sperm donors should receive more than egg donors because of the longer time commitment; whereas others argued that egg donors should receive more due to the invasive procedure involved. Level of compensation Participants were concerned that if centres were to set their own compensation levels those centres which were larger or privately funded (with more money) would set higher levels of compensation and therefore attract the most donors. In turn this would negatively impact upon smaller and NHS centres which could not afford to compensate donors at the same level. Introducing a fixed level of compensation would allow both NHS and private centres to plan the costs of their donor programmes accordingly. In terms of the amount donors should receive in compensation some would like the HFEA to specify broad boundaries for compensation; however most participants were unsure of what those boundaries should be. Some suggested that we should look at how other EU countries have reached the compensation structure they have in place and how this has impacted on supply. Benefits in kind Donation review October 19 Authority meeting Annexes part

295 The consultation sought views on whether donors should be offered benefits in kind, for example free or discounted treatment, for their donation. We also sought views on the value of these benefits and whether they should be limited. Impact of abolishing benefits in kind Participants agreed that abolishing benefits in exchange for donation would decrease the number of donor eggs available as fewer patients would be willing to take part in egg share arrangements. It was argued that abolishing egg sharing would mean limiting patient choice and access to treatment and lead to more people seeking treatment abroad. Participants suggested that there had been no reported problems with egg sharing and therefore this practice should be allowed to continue. To avoid cases where egg sharers were unsuccessful in their treatment whilst recipients were successful, egg sharers were selected on the potential of a good outcome for all involved. Egg share cases should therefore be managed on a case by case basis on the basis of patient choice and clinical judgement. Motivations of egg sharers They expressed a mixture of views about the extent to which egg sharers are motivated to donate by financial or altruistic reasons. Some suggested egg share donors were financially motivated to donate (to receive free or reduced treatment), whilst others felt egg share donors also donated for altruistic reasons. Cases were sited where the partner of a woman in a same sex relationship, receiving treatment with donor sperm, will become an egg donor in return for receiving donor sperm. Also, some egg share donors will donate for a second time (without receiving benefits in kind) to create a sibling for the same recipient family. However, most did agree that if fertility treatment was fully funded by the NHS, the number of women choosing to egg share would decline significantly. More research on the long term health implications of egg sharers should be carried out. Participants discussed a perceived inconsistency in a policy where egg sharers can receive treatment amounting to a higher value than non-egg share donors can receive in financial compensation. However, it was suggested that egg share donors and non-egg share donors have different motivations for donating and therefore should receive different levels of compensation. Cap on benefits in kind Participants suggested that introducing a cap on benefits in kind lower than the cost of treatment may drive women to donate a number of times to fund their treatment. Capping the value of benefits in kind could also lead to more patients who cannot afford treatment in the UK to seek treatment abroad. In practice capping egg sharing could also be problematic as the cost of treatment is different among clinics. Others suggested that the cap for egg donation should be same for egg sharing. Family limit The consultation sought views on whether the 10 family donor limit should be raised, lowered or remain the same. Currently donors can donate to up to 10 families, although there is no limit on the number of children which can be created within each of these families. In practice most sperm donors do not create 10 families, though more research is needed to understand why. Participants were surprised that HFEA figures suggest sperm donors rarely create 10 families. In their experience donors are often maximised to their full potential, especially in private centres. Donation review October 19 Authority meeting Annexes part

296 Reasons why the family limit is not met Participants explored possible reasons why the donor family limit is not reached in some cases: Sperm donors are registered too early (ie, before the sperm is ready to be released) and may not end up being used at all. Sperm donors do not donate enough sperm samples to create 10 families. Under the current compensation system, donors have little incentive to come back for repeat visits and for the required six month screening tests. There is a mismatch between the CMV status of some donors and patients which prevents the use of the sperm. Centres may accept donors with poorer semen quality because of the shortage and this sperm may not result in births. Donor sperm is imported from abroad for the use of one patient. Pregnancy slots are held for a number of years or are reserved by patients to use in the future. Patients may only choose donors who have resulted in pregnancies, therefore some donors will not be chosen. Following the removal of donor anonymity, sperm donors are limiting the number of families they wish their sperm to be used for. One clinic said 50% of donors restrict the family number to less than 10. Ways the HFEA can maximise donor usage Possible ways the HFEA could help to maximise donor usage were explored. Some argued that the current family limit is too low and that the family limit should be based on the statistical likelihood of a donor conceived person meeting their half siblings. To help minimise the risk of consanguinity, clinics could disperse donor sperm more widely. The risk could be further reduced by more parents telling their children that they are donor conceived. Others argued that until donor usage was maximised, increasing the family limit would not be effective. Increasing the limit would have no effect on increasing egg donation as egg donors are used to create fewer families. Other participants were happy with maintaining the 10 family limit and argued patients and donors were comfortable with the current limit. Some patients do, however, raise the risk of consanguinity with nurses or counsellors and those patients would be worried further if the limit were increased. Other ways to maximise donor usage Participants suggested other ways, outside of raising the limit, to maximise donor usage. Increasing donor compensation could lead to donors making more visits to the clinic and producing more samples, therefore increasing the number of families a donor can be used for. Clinics could maximise usage by sharing their donor sperm with other centres. Some suggested that re-instating donor anonymity would also increase the number of families a donor would be happy to create. Donation between family members The consultation sought views on whether, and how, donation between family members should be regulated. Currently the HFEA issues general guidance on donation, which covers the welfare of the future child, consent and counselling, but does not give specific guidance on donation between family members. Additional regulation on family donation Donation review October 19 Authority meeting Annexes part

297 Participants expressed a mixture of views about whether to introduce additional regulation on family donation. Participants agreed the number of cases involving family donation were increasing. Some suggested the rise in family donation was as a result of the shortage of unknown donors. Participants emphasised the importance of counselling and careful management of family donation cases. There was agreement that clinics are already negotiating though the complex issues involved in family donation. Some therefore suggested that no additional regulation or guidance is needed. Others thought guidance from the HFEA may provide extra clarity and support for clinics working with family donation. Most participants agreed that mixing the gametes of close genetic relatives should be prohibited. Others, however, suggested that an explicit prohibition is unnecessary as mixing gametes of close genetic relatives would not be possible under the welfare of the child requirements. Concerns were raised over the additional regulatory burden on clinics if guidance on family donation were introduced. Participants were unsure how the HFEA would regulate or inspect a clinic s practice of family donation if further regulation were introduced. Wider donation issues The consultation sought views on what action, besides amending HFEA policy, could be taken to increase the availability of donated sperm and eggs in the UK. Participants suggested the following actions, besides amending HFEA policy, which could be taken to increase availability: A greater focus on advertising and education around donation. For example, a national campaign would increase awareness around donation and encourage more people to donate. Smaller campaigns can have a limited success. Raising the egg donor age limit from 35 years to 37 years. This would reflect the age at which women are screened for Down s syndrome. Increasing the import of donor eggs for treatment in the UK. This would encourage more patients to seek treatment in the UK rather than seek treatment abroad where the risks may be greater. Encouraging sperm sharing schemes to increase the number of sperm donors. Re-instating donor anonymity. Donation review October 19 Authority meeting Annexes part

298 Annex L: Ipsos MORI public opinion poll Donation review October 19 Authority meeting Annexes part

299 7 Attitudes towards Sperm Egg and Embryo Donation A report for the Human Fertilisation and Embryology Authority June 2011 Donation review October 19 Authority meeting Annexes part

300 Donation review October 19 Authority meeting Annexes part

301 Contents Introduction Background and Objectives Methodology Interpreting the Data Summary Main findings Motivations for and Barriers to Donating Eggs, Sperm or Embryos Appendices Appendix 1: Technical details Appendix 2: Statistical reliability Appendix 3: Definition of social grades Appendix 4: Topline Appendix 5: Full Questionnaire Donation review October 19 Authority meeting Annexes part

302 HFEA: Attitudes towards Sperm Egg and Embryo Donation Introduction Background and Objectives This report presents the findings of a survey among the UK general public, conducted by Ipsos MORI on behalf of the Human Fertilisation and Embryology Authority (HFEA). The findings documented below deal specifically with a subsection of the survey which explored the motivations and barriers around donating sperm, eggs or embryos. They are taken from a broader report commissioned by the HFEA examining public attitudes towards fertility treatment and regulation, which was based on the full survey. Methodology Questions were placed on the Ipsos MORI Capibus survey, a weekly omnibus survey of the general public. We interviewed a nationally representative quota sample of 1,000 British adults in 163 different sampling points between 21 May and 3 June Owing to a scripting error on the initial survey, question 10 of the additional questionnaire was rerun on a new sample of 1,008 British adults in 163 different sampling points between 11 and 17 June This question was preceded with questions 1 to 3 as warm-up questions. The data for the two set of questions 1 to 3 are comparable, but the original set (asked from 21 May 3 June) have been used in this report. Data have been weighted by age, social grade, region, tenure, ethnicity, working status and gender to ensure results are reflective of either the UK or British populations where appropriate. Interviews were conducted face-to-face, in respondents homes, using CAPI (Computer Assisted Personal Interviewing). Further information on the Capibus methodology can be found in Appendix 1. Interpreting the Data Where percentages do not sum to 100, this may be due to computer rounding, the exclusion of don t know categories, or multiple answers. Throughout the report, an asterisk (*) denotes any value of less than half a per cent, but greater than zero. Donation review October 19 Authority meeting Annexes part

303 HFEA: Attitudes towards Sperm Egg and Embryo Donation Where net figures are discussed, this is expressed in plus (+) or minus (-) and refers to the difference between the two most favourable ratings minus the two least favourable ratings (for example, % satisfied minus % dissatisfied). It should be remembered that a sample, rather than the whole population of adults participated in the survey. Therefore, all results are subject to sampling tolerances, which means that not all differences are statistically significant. Crudely speaking, overall results are accurate to within +/-3 percentage points 95 times in 100, but this assumes that a perfectly random sample has been achieved (in practice, margins of error may be slightly larger). Further information relating to statistical reliability can be found in Appendix 2. In the graphs and tables, the figures quoted are percentages. Note that the base may vary the percentage is not always based on the total sample. Caution is advised when comparing responses between small sample sizes, where the margins of error will be higher. As aforementioned, this report documents the findings of a subsection of the survey. However, for context we have included a full questionnaire in Appendix 5. Donation review October 19 Authority meeting Annexes part

304 HFEA: Attitudes towards Sperm Egg and Embryo Donation Summary Perceptions of Egg, Sperm and Embryo Donation Altruism whether towards an acquaintance or a stranger and financial compensation are most frequently mentioned as motivations for donating eggs, sperm or embryos. On the other hand, embarrassment and insufficient knowledge of the process are seen as the main barriers. Embarrassment is particularly an issue among younger men. Guarantees of anonymity are only mentioned as a motivation to donation by 7%, but concerns over anonymity are cited as a barrier by 12% of people. Confirming expectations surrounding anonymity of donation may help to address some of the barriers to donation, in terms of privacy and potential future impact. People from ethnic minority backgrounds are more likely than white people to express moral or religious objections to donation, and, should the HFEA wish to communicate with these groups, these are concerns which it would need to address. There is scope for the HFEA to review the incentivisation of donation. The majority of people either believe that donors should not be compensated at all, or else should only receive compensation for costs directly incurred by their donation i.e. travel, subsistence and loss of earnings. The current maximum compensation for the donation of eggs ( 250) is broadly in line with the level which people would consider adequate ( 275). However, the perceived acceptable level of compensation for donation of sperm is lower than current awards, at approximately 180. Perhaps reflecting their greater unease with the donation of eggs, sperm and embryos, ethnic minorities cite a greater number of reasons for compensation than white people, and also set the adequate level of financial compensation higher. This may make it difficult to attract donors from these communities, particularly given their preexisting concerns. Restrictions on donor family limit Mention of a current 10 family limit increases the number of families which people think an individual donor should be allowed to donate their eggs or sperm to. When asked without this knowledge, people set the limit at 3.29 families on average. This compares to the 4.89 families people set as a limit for donation when told the current restrictions still well below the actual limit. Donation review October 19 Authority meeting Annexes part

305 HFEA: Attitudes towards Sperm Egg and Embryo Donation Main findings Motivations for and Barriers to Donating Eggs, Sperm or Embryos As Figure 1 shows, people are equally likely to view altruism towards an acquaintance and personal gain as reasons why people donate eggs, sperm and embryos. Just over onequarter mention helping a friend or family member to have a family of their own (29%) or financial compensation (28%) respectively as motivations. Helping a stranger to have a family of their own is a less attractive motivation (23%). Figure 1: Motivations for donation Q What, if anything, do you think would motivate people to donate their eggs, sperm or embryos for the use of other people in fertility treatment? Helping a friend or family member to have a family of their own Financial compensation Helping a stranger to have a family of their own Anonymity/guarantee that the child would not be given the donor s details Discounted fertility treatment services If it could be done locally Wanting to pass on genes to the next generation More information/awareness/advertising Wanting to increase birth rate Altruism Other Nothing/None of these Don t know/refused Base: 1,000 British adults aged 15+ Top 10 mentions 3% 3% 2% 2% 1% 1% 2% 7% 8% 19% 23% 29% 28% There are various differences between demographic groups. Helping a friend or family member is cited by more women than men as a motivator (32% versus 25%). Anonymity is an important motivator among younger men, with almost a fifth of year olds (17%) thinking that donor anonymity would motivate people to donate, compared to seven per cent on average. Ethnic minorities are more likely than average to see discounted fertility treatment services as a motivator (10%, versus three per cent overall). Perhaps contrary to what might be expected, financial compensation is a stronger motivator among the middle classes than those from less affluent backgrounds (31% of ABC1s cite this, compared to 24% of C2DEs). Donation review October 19 Authority meeting Annexes part

306 HFEA: Attitudes towards Sperm Egg and Embryo Donation As Figures 2 and 3 highlight, the main barriers to donating tend to relate to the impact on the donor (37%). Specifically, one-fifth (20%) say embarrassment is one of the main barriers. A quarter (25%) say lack of information is a barrier, with one fifth (18%) saying they would not know how to go about donating. A minority (three per cent) cite practical barriers to donating. In particular, although financial compensation is among the most frequently mentioned ways to encourage people to donate, few (three per cent) see inadequate financial compensation as one of the main reasons not to donate. However, among those that see the impact on the donor as a main barrier to donating, financial compensation becomes the strongest motivator (39%, compared to 28% overall), ahead of helping a friend or family member (35%). Figure 2: Main barriers to donation Q What, if anything, do you consider to be the main barriers preventing people from donating sperm, eggs or embryos? Embarrassment Not knowing enough about the donation process/ wouldn t know how to go about donating Lack of anonymity/potential to be contacted by child once they reach 18 Moral objection Religious objection Not knowing who you are donating to The time/hassle/disruption of donating Pain/physical discomfort/needing to take medication Psychological impact/having genetically related offspring/raised by others Don t agree with fertility treatment Don t know/no answer Base: 1,000 British adults aged 15+ Other Top 10 mentions 5% 7% 8% 9% 9% 12% 11% 10% 18% 17% 20% 23% Donation review October 19 Authority meeting Annexes part

307 HFEA: Attitudes towards Sperm Egg and Embryo Donation Figure 3: Main barriers to donation (overarching themes) Q What, if anything, do you consider to be the main barriers preventing people from donating sperm, eggs or embryos? Impact on donor 37% Lack of information 25% Objections/personal opinion 20% Practical barriers 3% Other categories 18% Don t know 23% Base: 1,000 British adults aged 15+ Younger men are most likely to note embarrassment as a barrier to donating (33% of year old men say this, compared to 20% overall). Among women, the pain/physical discomfort/need to take medication associated with donating is a stronger barrier than among men (10% versus six per cent). Ethnic minorities are more likely than white people to have a religious objection to donating (16% versus nine per cent). Donation review October 19 Authority meeting Annexes part

308 HFEA: Attitudes towards Sperm Egg and Embryo Donation The level of financial compensation Even though three in ten spontaneously mention financial compensation as a way to motivate people to donate, when asked about what, specifically, people should be compensated for, a third (35%) say nothing, which we can see in Figure 4 below. A quarter (26%) think compensation should be limited only to the tangible financial losses as a result of donating, such as expenses (22%), loss of earnings (16%) or childcare fees (five per cent). Figure 4: Type of compensation for donation Q For what, if anything, should people be compensated if they donate their eggs or sperm to patients receiving fertility treatment? Nothing Travel and subsistence Loss of earnings Child care fees Emotional/psychological impact Disruption Physical discomfort Financial reward Their time Other None of these Don t know 5% 4% 4% 4% 2% *% 1% 6% 16% 20% 22% 35% Base: 1,000 British adults aged 15+ Those aged are particularly likely to take the view that financial compensation should only account for these financial losses (35%, compared to 26% overall). By contrast, younger people aged are more likely to think that people should be compensated for the emotional or psychological impact (10%, versus four per cent overall) or as a financial reward (seven per cent, versus two per cent overall). Ethnic minorities also tend to think there should be compensation for a wider range of reasons than white people. Whereas two-fifths (37%) of white people think nothing should be compensated for, only one-fifth (19%) of ethnic minorities think this. Ethnic minorities are also more likely to say that there should be compensation for disruption (10%, versus four per cent of white people) and physical discomfort (nine per cent, versus three per cent). Donation review October 19 Authority meeting Annexes part

309 HFEA: Attitudes towards Sperm Egg and Embryo Donation Looking at the amount of compensation that people consider adequate for women donating eggs, two-fifths (38%) again say this should be nothing, while a further one in nine (11%) say only out-of-pocket expenses should count. These responses are similar when considering the amount for men donating sperm, with 39% saying there should be no compensation, and 11% saying this should be limited to expenses. As Figure 5 shows, the mean 2 amount of compensation people think should be awarded for donating eggs ( 275) is higher than for donating sperm ( 178). Although the desired compensation for donating eggs is close to the real amount currently given for loss of earnings ( 250), the amount people think is adequate for donating sperm is actually lower. Figure 5: Level of compensation for donation Q How much money, if any, would you consider to be adequate financial compensation in return for donating eggs/sperm to a fertility patient once? Total Men Women Mean amount Gender Eggs Sperm White BME Age group Ethnicity Base: 1,000 British adults aged 15+ The mean amount that people think women and men should get for donating eggs or sperm is higher among women than men, ethnic minorities than white people, and among younger than older people. 2 Mean calculated using the middle value of all codes with a fixed range and 1.5 times the value of the highest code (i.e. more than 5,000 taken as 7,500) Donation review October 19 Authority meeting Annexes part

310 Agenda item 6 HFEA (13/07/11) 604 Restriction on donor family limit A majority support some level of restriction in the number of families individuals should be able to donate their eggs or sperm to. This number varies dependent on how the issue is addressed. When simply asked how many families one donor should be able to donate their eggs or sperm to more than one quarter (27%) say that there should be no limit. However, when the question is framed in the context of existing legislation stating a maximum of 10 families, only one fifth (20%) say there should be no limit. Moreover, it is evident from Figure 25 that people are more likely to anchor to the current legal limit of 10 when the question is framed in this context. 3 Figure 6: Donation limits V1 V2 How many families, if any, do you think one donor should be allowed to donate their eggs or sperm to? As you may know, donors can currently donate eggs or sperm to a maximum of 10 families, although there is no limit on the number of times they can donate to these families. Information about a donor can be released to the child when they are 18 years of age. How many families, if any, do you think one donor should be allowed to donate their eggs or sperm to? Mean response % saying 10 families Version Version 1 2% Version Version 2 9% Base: 508 British adults aged 15+ (V1); 500 British adults aged 15+ (V2) 3 3 Mean calculated using the middle value of all codes with a fixed range and 15 for 15+ Donation review - Annexes

311 Agenda item 6 HFEA (13/07/11) 604 Appendices Appendix 1: Technical details The survey was conducted using the Ipsos MORI Capibus, a weekly, face-to-face omnibus survey of British adults aged 15 and over. As the HFEA regulates fertility treatment throughout the UK, the tracker survey was extended to include Northern Ireland. The Capibus team use a two-stage, random location design to select respondents to take part in the weekly survey. These stages are described in detail below. Stage One: Selection of Primary Sampling Units The first stage is to define primary sampling units which will be fixed for at least one year. For the tracker survey, a total of 157 Local Authorities were randomly selected from our stratified groupings with probability of selection proportional to size, including three sampling points from Northern Ireland. For the additional survey, 163 Local Authorities in Britain (i.e. excluding Northern Ireland) were randomly selected in the same way. This ensured that the most populated areas in the country were well represented in the sample. Stage Two: Selection of Secondary Sampling Units The second stage of sampling happens every week on Capibus. At this stage, one output area (OA) is randomly selected from each Local Authority, this then becomes the secondary sampling unit. An Output Area (OA) is a very small area made up of between 60 to 100 addresses. Although we could just choose OAs each week completely at random and set our interviewer quotas for sex, age, working status and social grade a common approach for ensuring a sample is nationally representative we use the MOSAIC geo-demographic system in the selection process. Adopting this approach helps to eliminate possible bias in the sample caused by interviewing people all with the same background. Using MOSAIC allows us to select OAs with differing profiles so we can be sure we are interviewing a broad crosssection of the public, since clearly even people of the same age and working status may have a different viewpoint depending on their background. Because the sampling process is repeated every week, the Capibus sample is matched wave on wave, making it ideal for taking successive measurements on the same issue. Donation review - Annexes

312 Agenda item 6 HFEA (13/07/11) 604 Weighting All information collected on Capibus is weighted to correct for any minor deficiencies or bias in the sample, which ensures that results are designed to be representative of all UK or British adults where appropriate. Capibus uses a rim weighting system which weights to National Readership Survey defined profiles for age, social grade, region, tenure, ethnicity and working status within sex. Donation review - Annexes

313 Agenda item 6 HFEA (13/07/11) 604 Appendix 2: Statistical reliability Because a sample, rather than the entire population, was interviewed, the percentage results are subject to sampling tolerances which vary with the size of the sample and the percentage figure concerned. For example, for a question where 50% of the people in a (weighted) sample of 500 respond with a particular answer, the chances are 95 in 100 that this result would not vary more than +4 percentage points from the result that would have been obtained from a census of the entire population (using the same procedures). The tolerances that may apply in this report are given in the table below. 4 Size of sample on which survey result is based Approximate sampling tolerances applicable to percentages at or near these levels 10% or 90% + Donation review - Annexes % or 70% + 50% responses 6% 9% 10% 200 responses 4% 6% 7% 500 responses 3% 4% 4% 1,000 responses 2% 3% 3% 1,039 responses 2% 3% 3% Source: Ipsos MORI Tolerances are also involved in the comparison of results between different elements of the sample. A difference must be of at least a certain size to be statistically significant. The following table is a guide to the sampling tolerances applicable to comparisons between subgroups for this survey. Size of sample on which survey result is based Differences required for significance at or near these percentage levels 10% or 90% 30% or 70% 50% 200 versus 200 7% 9% 10% 1,039 versus 920 (versus 2005 survey) 3% 4% 4% 4 These sampling tolerances assume a perfect random sample. In reality, sampling tolerances may be higher due to clustering of interviews and weighting of responses.

314 Agenda item 6 HFEA (13/07/11) 604 Source: Ipsos MORI Donation review - Annexes

315 Agenda item 6 HFEA (13/07/11) 604 Appendix 3: Definition of social grades Social Grades Social Class Occupation of Chief Income Earner Percentage of Population A Upper Middle Class Higher managerial, administrative or professional 4 B Middle Class Intermediate managerial, administrative or professional 21.9 C1 Lower Middle Class Supervisor or clerical and junior managerial, administrative or professional 29.2 C2 Skilled Working Class Skilled manual workers 20.6 D Working Class Semi and unskilled manual workers 16.2 E Those at the lowest levels of subsistence State pensioners, etc, with no other earnings 8.1 Donation review - Annexes

316 Agenda item 6 HFEA (13/07/11) 604 Appendix 4: Topline o o This topline shows the findings for Q2, Q3,Q7, Q8 and Q10, which relate to the donation of eggs, sperm or embryos. For context, a full questionnaire is shown in Appendix 5. Interviews conducted face-to-face in respondents homes between 21 May and 3 June 2010 (Q2-Q8) and between 11 and 17 June 2010 (Q10) in 163 sample points across Britain. o Figures are based on a representative sample of 1,000 British adults aged 15+ for Q2 to Q8 and 1,008 British adults aged 15+ for Q10, unless otherwise stated. o o o Data have been weighted to the known population profile. All figures are in percentages. Numbers may not always add up to 100% due to computer rounding or multiple answers. o * denotes a figure less than 0.5% but greater than 0%. Q2. What, if anything, do you think would motivate people to donate their eggs, sperm or embryos for the use of other people in fertility treatment? UNPROMPTED Helping a friend or family member to have a family of their own % 29 Financial compensation 28 Helping a stranger to have a 23 family of their own Anonymity/guarantee that the 7 child would not be given the donor s details Discounted fertility treatment 3 services If it could be done locally 3 Wanting to pass on genes to the 2 next generation More information/awareness/ 2 advertising Wanting to increase birth rate 1 Altruism 1 Compassion 1 Other 2 Nothing * None of these 8 Refused to answer 1 Don t know 18 Donation review - Annexes

317 Agenda item 6 HFEA (13/07/11) 604 Q3. What, if anything, do you consider to be the main barriers preventing people from donating sperm, eggs or embryos? % Impact on donor Embarrassment 20 The time/hassle/disruption of 9 donating Pain/physical discomfort/needing 8 to take medication Psychological impact/having 7 genetically related offspring/ raised by others Fear/scared of consequences 1 Not knowing the child 1 Lack of information Not knowing enough about the 18 donation process/wouldn t know how to go about donating Not knowing who you are 9 donating to Objections/personal opinion Moral objection 11 Religious objection 10 Don t agree with fertility 5 treatment Practical barriers Inadequate financial 3 compensation Lack of access to 1 facilities/distance to travel Other categories Lack of anonymity/potential to be 12 contacted by child once they reach 18 Medical conditions/not wanting 3 to pass on genetic condition(s) Not wanting to reproduce 2 Disagreement between partners * Other 2 Don t know 23 No answer * Donation review - Annexes

318 Agenda item 6 HFEA (13/07/11) 604 Q7. For what, if anything, should people be compensated if they donate their eggs or sperm to patients receiving fertility treatment? UNPROMPTED % Nothing 35 Travel and subsistence 22 Loss of earnings 16 Child care fees 5 Emotional/psychological impact 4 Disruption 4 Physical discomfort 4 Financial reward 2 Their time * Other 1 None of these 6 Don t know 20 Q8.a Q8.b How much money, if any, would you consider to be adequate in return for donating eggs to a fertility patient once? UNPROMPTED How much money, if any, would you consider to be adequate in return for donating sperm to a fertility patient once? UNPROMPTED Q8.a) Eggs Q8.b) Sperm % % Nothing Out of pocket expenses i.e travel, loss of earnings and child care fees Up to , , More than 5, A discount on fertility treatment if * * needed for themselves or a partner Don t know Refused 2 2 Mean** ** Mean calculated using the middle values of codes Up to 10 through to More than 5,000 Donation review - Annexes

319 Agenda item 6 HFEA (13/07/11) 604 Q10. (v1) Q10. (v2) How many families, if any, do you think one donor should be allowed to donate their eggs or sperm to? UNPROMPTED Base: Half of the sample (508) As you may know, donors can currently donate eggs or sperm to a maximum of 10 families, although there is no limit on the number of times they can donate to these families. Information about a donor can be released to the child when they are 18 years of age. How many families, if any, do you think one donor should be allowed to donate their eggs or sperm to? UNPROMPTED Base: Half of the sample (500) v1 v2 % % None * 1 7 * * * More than Should be no limit Don t know Mean Donation review - Annexes

320 Agenda item 6 HFEA (13/07/11) 604 Appendix 5: Full Questionnaire Q1. SHOWCARD (R) Which, if any, of the following do you consider to be infertility? Just read out the letter or letters that apply. MULTICODE OK A An illness 1 B A fact of life 2 C A medical condition 3 D A social condition 4 E Something that would not worry 5 me F Something that stops you living 6 life to the full G God s will 7 Other (PLEASE SPECIFY) 8 None of these 9 Don t know 0 Q2. What, if anything, do you think would motivate people to donate their eggs, sperm or embryos for the use of other people in fertility treatment? DO NOT PROMPT MULTICODE OK Anonymity/guarantee that the 1 child would not be given the donor s details Discounted fertility treatment 2 services Financial compensation 3 Helping a friend or family 4 member to have a family of their own Helping a stranger to have a 5 family of their own If it could be done locally 6 Wanting to pass on genes to the 7 next generation Wanting to increase birth rate 8 Other (PLEASE SPECIFY) 9 Nothing 0 Refused to answer X Don t know Y Donation review - Annexes

321 Agenda item 6 HFEA (13/07/11) 604 Q3. What, if anything, do you consider to be the main barriers preventing people from donating sperm, eggs or embryos? DO NOT PROMPT MULTICODE OK Impact on donor Embarrassment 1 Pain/physical discomfort/needing 2 to take medication Psychological impact/having 3 genetically related offspring/ raised by others The time/hassle/disruption of 4 donating Lack of information Not knowing enough about the 5 donation process/wouldn t know how to go about donating Not knowing who you are 6 donating to Objections/personal opinion Don t agree with fertility 7 treatment Moral objection 8 Religious objection 9 Practical barriers Inadequate financial 0 compensation Lack of access to X facilities/distance to travel Other categories Lack of anonymity/potential to be Y contacted by child once they reach 18 Medical conditions/not wanting 1 to pass on genetic condition(s) Not wanting to reproduce 2 Other (PLEASE SPECIFY) 3 Don t know 4 Donation review - Annexes

322 Agenda item 6 HFEA (13/07/11) 604 Q4. Thinking now about who is eligible for fertility treatment, which groups of people, if any, do you feel should not be eligible for fertility treatment on the NHS? DO NOT PROMPT MULTICODE OK People who have NOT had 1 private fertility treatment People who have had private 2 fertility treatment People who have already 3 received NHS fertility treatment previously People who have children 4 already People who are over 40 5 People who are over 50 6 People who are over 60 7 People who are too old [IF 8 ACTUAL AGE STATED CODE IN OTHER SPECIFY] Same sex couples/homosexual 9 couples Single people/single 0 women/single men Those who can afford private X treatment NHS treatment should be Y available to everyone NHS treatment should not be 1 available to anyone Other (PLEASE SPECIFY) 2 Don t know 3 Q5. SHOWCARD (R) As you may know, the NHS provides some funding for fertility treatment but this varies across the country. Which, if any, of the following groups of people do you think should be prioritised for NHS treatment? Just read out the letter or letters that apply. MULTICODE OK A People who are over 40 1 B People who are over 50 2 C People who are over 60 3 D People who have a genetic 4 condition E People who have had private 5 treatment but been unsuccessful F People with no other children 6 G Same sex couples 7 H Single women 8 I Those who cannot afford private 9 treatment J Younger People 0 K Everyone X L No-one Y Other (PLEASE SPECIFY) 1 None of these 2 Don t know 3 Donation review - Annexes

323 Agenda item 6 HFEA (13/07/11) 604 Q6. SHOWCARD (R) Which, if any of the following, do you consider to be the biggest health risk to patients receiving fertility treatment? SINGLE CODE ONLY A Anaesthetic 1 B Infection 2 C Lack of knowledge of genetic 3 background of the donor D Miscarriage 4 E OHSS (Ovarian Hyper- 5 Stimulation Syndrome) i.e. the risk of over-stimulating the ovaries F The possibility or risk of having 6 twins or triplets Other (PLEASE SPECIFY) 7 None of these 8 Don t know 9 Q7. For what, if anything, should people be compensated if they donate their eggs or sperm to patients receiving fertility treatment? DO NOT PROMPT MULTICODE OK Travel, accommodation and 1 meal expenses Child care fees 2 Loss of earnings 3 Disruption 4 Physical discomfort 5 Emotional/Psychological impact 6 Other (PLEASE SPECIFY) 7 Nothing 8 Don t know 9 Donation review - Annexes

324 Agenda item 6 HFEA (13/07/11) 604 ASK ALL Q8. ROTATE A AND B a) How much money, if any, would you consider to be adequate in return for donating eggs to a fertility patient once? DO NOT PROMPT MULTICODE OK b) How much money, if any, would you consider to be adequate in return for donating sperm to a fertility patient once? DO NOT PROMPT MULTICODE OK A) EGGS B) SPERM Nothing 1 1 Out of pocket expenses i.e. 2 2 travel, loss of earnings and child care fees Up to More than 5000 X X A discount on fertility treatment if Y Y needed for themselves or a partner Don t know 1 1 REFUSED 2 2 Q9. ROTATE A AND B a) What, if any age, should be the upper age limit for women receiving fertility treatment? DO NOT PROMPT MULTICODE OK b) What, if any age, should be the upper age limit for men receiving fertility treatment? DO NOT PROMPT MULTICODE OK A) WOMEN B) MEN No upper limit or younger X X 55 Y Y Don t know 5 5 Donation review - Annexes

325 Agenda item 6 HFEA (13/07/11) 604 ASK HALF THE SAMPLE Q10. How many families, if any, do you think one donor should be allowed to donate their v1 eggs or sperm to? DO NOT PROMPT SINGLE CODE ONLY Should be no limit 1 Don t know 2 ASK HALF THE SAMPLE Q10. As you may know, donors can currently donate eggs or sperm to a maximum of 10 V2 families, although there is no limit on the number of times they can donate to these families. Information about a donor can be released to the child when they are 18 years of age. How many families, if any, do you think one donor should be allowed to donate their eggs or sperm to? DO NOT PROMPT SINGLE CODE ONLY Should be no limit 1 Don t know 2 Donation review - Annexes

326 Agenda item 6 HFEA (13/07/11) 604 Annex M: Economic impact assessment Impact assessment of changes to HFEA policy on gamete donation Prepared by NCC-WCH, June 2011 Section 1 - Introduction The HFEA has requested health economic support from the RCOG (National Collaborating Centre for Women and Children s Health [NCC-WCH]) in preparing an Economic Impact Assessment report as part of a review into policies relating to egg and sperm donation. The aim was to evaluate four areas of policy under review by the HFEA, to obtain the views of fertility clinics of the impact of changes in policy, and to develop an economic model to forecast the financial impact under specific conditions. The audience for the Impact Assessment report is the HFEA. The report will be used to inform guidance to fertility clinics offering donor treatment (sperm and egg) in the private sector and the NHS. This report considers four specific areas of policy that are under consideration, by the HFEA, in relation to egg and sperm donation. It also outlines the economic considerations which should inform the decisionmaking process relating to each policy. i) Compensation and re-imbursement ii) Benefits in kind iii) Family limit iv) Family donation The aim of this assessment is to consider the impact of a change in HFEA policy on a) the administrative burden on clinics providing fertility treatment and b) the supply of donors. The health economics group at the NCC-WCH, in consultation with the HFEA, drafted a questionnaire which sought views on the economic impact of specific changes in HFEA policies on gamete donation. An interview was conducted with a senior member of staff at three clinics representing different geographical areas, who were contacted directly by the NCC-WCH. This provided some background insight into current practice as well as contributing to content for the questionnaire. The NCC-WCH group also developed an economic model which synthesised some of the data collected in the survey into specific scenarios to explore. The model considered the economic impact of a change to the compensation policy for egg and sperm donors. The model is a hypothetical one because there are so many unknown outputs. One of the aims of a change in policy -296-

327 Agenda item 6 HFEA (13/07/11) 604 would be to increase egg and sperm donation but in the absence of the change having taken place there is no evidence of what effect, if any, a given policy change would have. The model inputs allow a decision-maker to evaluate the impact of an increase in the number of donors and see what impact that has on costs and revenues given the other assumptions. It should be remembered that the costs and revenues are different for egg and sperm donation and therefore the economic impact of any change of compensation policy will be different according to the type of donation. The following section outcomes the economic considerations and background information gathering which informed the survey questions. Section 3 outlines the methods used and section 4 reports the results of the questionnaire and economic modelling. The final section draws some conclusions from the findings. Section 2 - Economic considerations This section outlines the background to the impact assessment; it draws on economic theory, HFEA policy and interviews with staff at three fertility clinics prior to the development of the questionnaire. 2.1 Overview The HFEA has recently consulted on possible changes to the policies governing compensation paid to egg and sperm donors. Whilst the law prohibits strong financial incentives to donate, it is thought that current policies might pose a disincentive to donation with donors potentially being left out of pocket by current compensation arrangements. Current policy allows sperm and egg donors to claim reasonable expenses in connection with their donation (e.g. travel and child care costs). Donors may also be compensated for loss of earnings up to for each full day (as for jury service), with a limit of 250 for each course of sperm or egg donation. Clinics must keep a record of the expenses and compensation they pay, including evidence of loss of earnings and expenses. The policy options for compensation considered in this report are: 1) Receipted expenses plus compensation for loss of earnings (LOE) without a cap on the maximum daily rate 2) Receipted expenses plus LOE set at a universal rate for all donors regardless of earnings 3) No change to expenses or LOE payments plus an additional fee per course for the inconvenience of donating 4) One lump sum to cover all expenses, LOE and inconvenience paid to all donors regardless of actual expenses or earnings. This section describes economic theory as it relates to reimbursement and compensation for donated eggs or sperm used in fertility treatment

328 Agenda item 6 HFEA (13/07/11) 604 Consideration of the economic consequences of a change in reimbursement policy underpin the specific questions in the survey. It also provides a framework for analysing the responses to the survey and what the findings mean for future policy on compensation. This section is in two parts: the first part looks at the economic theory of supply as it relates to sperm and egg donors. It considers the economic factors that increase or decrease the likelihood that a potential donor will donate. The second part considers the economics of production. It considers the changes in costs related to changes in compensation and the impact of these changes on fertility clinics total revenue and profit. To inform the survey, interviews were conducted with representatives from three fertility clinics. Data from these interviews is included here as in some cases the responses given support the economic theory and in some cases they differ from it. These insights contribute to the overall conclusions of the report Impact of changes in policy on donors incentives to supply Neoclassical economic theory predicts that sperm and egg donation will occur so long as the marginal (or additional) benefit exceeds the marginal (or additional) cost to the donor. The marginal benefit includes the financial compensation but can also include aspects of altruism. All other things being equal, the greater the marginal cost of donation arising from travel expenses, loss of earnings and inconvenience, for example the fewer donations there are likely to be. Any change in compensation could lead to changes in the supply of donors if these changes alter the real or perceived marginal costs or benefits to individuals considering becoming a donor. It is therefore important to understand what these real or perceived marginal costs or benefits are. In economic terms, there is no fee for donating sperm or eggs for fertility treatment. The individual donor makes a free decision to donate eggs or sperm. They do so for altruistic reasons (considered in economic theory the same as gift-giving): there is welfare gain to an individual from knowing they have done a good thing. The principle of HFEA policy is that, although donors are not paid, they should nevertheless not suffer any financial loss as a result of their act of altruism. They are reimbursed exact travel and childcare expenses, providing the donor documents his or expenses. The cap on the value of compensation for loss of earnings, both per visit and per donation period, means that some donors can suffer a financial loss from donation. In addition, there may be other barriers to donor supply and retention which are not recognised by this policy. These may be described as psychic costs to individuals. Psychic costs relate to the stress or unhappiness to an individual of a transaction. For example, there may be a loss of privacy to an individual in having to ask an employer for proof of earnings to submit to a fertility clinic. There may also be psychic costs associated with the inconvenience of formfilling at every visit to the clinic to reclaim each individual expense. The financial value of the inconvenience of donating is not usually known to an individual; people are not often asked to consider how much they would be -298-

329 Agenda item 6 HFEA (13/07/11) 604 willing to be paid in compensation to do something inconvenient to them. However, if financial compensation is perceived to be too low, this may be revealed in a reduction of people willing to become or remain donors. The system of reimbursing actual expenses is transparent and fair in the sense that no individual is out of pocket for their actual expenses, and no one receives more than they are due. The drawback is that the individual does not know in advance how much they will receive. A system of paying the same compensation to all donors may appear more equitable. It would also allow individuals to weigh up before making a decision whether the value of the compensation adequately reimburses their forecasted monetary and psychic expenses. Economic theory would suggest that, if the value of the compensation is lower than an individual s value of their donation, they will not enter the market. A system of reimbursing receipted expenses means that individual donors have no incentive to under or over consume; on the other hand they have no incentive to keep their expenses low. A system of capping the daily rate on expenses imposes an incentive to reduce expenses, although the level of the cap would be important as economic theory suggests that this may also lower the supply of donors if it is believed by individuals that the daily rate will not cover their actual expenses and additional psychic costs (the inconvenience) of donating. Changing the rules on the compensation for loss of earnings to match loss of earnings exactly may be fairer in terms of reimbursement of financial loss, but it also means that individuals who earn more will receive more compensation than others for the same act of donation. This may not seem fair to some donors and may be a barrier to participation. 2.3 The impact of a change in reimbursement policy on a clinic s total revenue and profit Changes in compensation arrangements can have an economic impact on the clinics in two ways, by altering the total amount that is paid out to donors and/or in the administrative costs associated with processing claims for reimbursement. In a market where there is high demand for a service, it is usually believed that raising the fee (or price ) paid to suppliers (compensating donors to a higher level) will be in the firm s advantage. Total revenue will continue to rise if the marginal benefit (income from selling fertility treatment) is less than the marginal cost of recruitment of donors. All other things being equal, clinics should continue to offer more fertility treatment when marginal costs are less than marginal benefits and will maximise profits where marginal cost equals marginal revenue. However, a change to the reimbursement policy will not only affect the money paid out to new donors but will affect all current donors as well. Clinics will only increase their total revenue if the total paid out to all donors leads to a sufficiently high increase in supply. Whether a change in reimbursement policy affects supply will depend on how many donors are already registered, how many more donors would be -299-

330 Agenda item 6 HFEA (13/07/11) 604 incentivised to register if the compensation arrangements were to improve, and the additional revenue to the clinic from additional donors. This can be illustrated as follows: consider the situation where a clinic is allowed to offer a lump sum payment to compensate actual expenses, loss of earnings and inconvenience. In some cases, this may increase the amount a donor would be entitled to under the current system of compensation (for example, those on higher incomes). This could lead to an increase in the number of donors willing to register. However, the same lump sum would also have to be offered to all the current active registered donors who had been willing to donate at the lower rate of compensation offered before the policy change. The increase in compensation to this group is an increased cost to the clinic without any additional revenue. If only one additional donor was registered by a clinic under the lump sum compensation arrangements, but 25 existing donors had their compensation increased under the new system, then depending on the value of that increase, the additional revenue gained from the extra donor could be offset by the additional cost of payments to the other 25 donors. In this case, the clinic would not have any incentive to increase compensation even if it increased the number of donors, and increased the amount of fertility treatment they could offer. Fertility clinics have large fixed costs (staffing, accommodation and equipment). Information from the interviews suggested that there was capacity to increase supply up to a threshold without the need to increase staff or equipment. In addition, there may be economies of scale in increasing activity. For example, to store five samples rather than one would not take five times as long, more like one and a half times as long as one sample. This reduces the average cost per sample stored. Also, blood tests can be bought cheaper in higher quantities, reducing average cost. Although some costs such as recruitment increase with higher volume of donors, these may not be important for clinics as these additional costs are more than compensated by the increase in income generated by the increased activity. Each new donor also means increased costs for the clinic (e.g. counselling, testing, collection and storage of samples etc). Only if the total increase in cost is less than the total revenue will the clinic make a profit. 2.4 Benefits in kind The HFEA currently permits clinics to supply free or reduced-price fertility treatment as a benefit in kind, in exchange for the donation of eggs or sperm. The policy options under consideration in this assessment are either to introduce a financial cap on the value of benefits in kind or prohibiting them altogether, on the basis that such benefits may not be equitable. Whilst there may be equity grounds for introducing a cap, economic theory posits that such a cap would incur an efficiency loss, that is, a loss of treatments that could have been provided if benefits in kind had been allowed to reach a free market (see Figure 1). Figure 1. Deadweight welfare loss by capping benefits in kind -300-

331 Agenda item 6 HFEA (13/07/11) 604 This graph shows a situation where the HFEA has capped benefits in kind, at a level P cap. In a free market, equilibrium would have been reached at a price of Pe and a Quantity of Qe, where demand equals supply. The societal welfare 5 implications of a market with capped benefits is denoted by the shaded colour regions in Figure 1. The societal or total welfare from this market is given by: Societal Welfare = Consumer Surplus + Producer surplus This equation says that societal welfare (or total benefit) is a sum of net benefit to fertility clinics (consumer surplus) and the net benefit to donors (producer surplus). Consumer surplus is denoted by the regions A, B, and E and is the value that the fertility clinic places on the gametes they buy over and above the price they pay for them (PeQe). The producer surplus is the income the donor receives over and above the cost they incurred (C,D,F). If benefits in kind were capped at P cap donors would only be willing to supply Q cap. This is less than the quantity Q** that clinics would want to pay at that the capped value. The discrepancy between the two is known as the excess demand and means that the market is characterised by shortage of egg sharers. This also has an adverse impact on societal welfare. The consumer surplus is now given by the regions A, C, E and the producer surplus by the region F. However, compared to the market equilibrium the overall societal 5 The concept of societal welfare is rooted in a branch of economics known as welfare economics. At its simplest societal welfare can be understood as the overall well-being of a society which is determined by the summation of the welfare of all the individuals in that society

332 Agenda item 6 HFEA (13/07/11) 604 welfare loss has been reduced by regions B and D, which are no longer part of producer or consumer surplus. This loss, denoted by the gray shaded regions, is referred to as the deadweight welfare loss. This is an important concept because it means that, when a benefit is capped, donors, clinics and recipients lose out overall. There is a clear equity-efficiency trade-off between capping payments which may be more fair and not capping payments which maximises the amount of fertility treatment that can be offered overall. Currently, egg donors are offered reduced price or free treatment. This is likely to increase the number of women willing to donate overall although it may have, in theory, reduced the willingness of some women who donate eggs for purely altruistic reasons without wanting payment of any kind. All other things being equal, the higher the level of contribution towards treatment, the more women should be willing participate in egg-sharing. In summary, economic theory states that when a market is in equilibrium, societal welfare is maximised. A change in policy that changes the marginal costs and benefits to donors will change the number of donors until a new equilibrium is reached where marginal cost equals marginal benefit. Policies that move the market away from its equilibrium state for reasons of equity or ethics may do so at the expense of donor supply. Whether this is an acceptable trade-off is a normative question that cannot be answered by positive economic theory or the analysis of empirical data. The cost to fertility clinics of a change in reimbursement to any new arrangement is made up of both a change in financial payments to new and existing donors and the cost of administration. Relative to compensation payments, administration is likely to be a small part of the total variable cost of supplying fertility treatment which determines income. Therefore, a change in administrative time, however large, is less likely to significantly affect the price charged for fertility treatment than a change in payments to donors. 2.5 Views of three fertility clinics Three clinics agreed to be interviewed, one offering mostly private treatment with egg sharers only (no sperm donors only, all sperm is purchased); one offering 50% of treatment on the NHS with sperm donors and egg sharers; and one offering mostly private treatment with sperm donors and egg sharers. One respondent said egg sharers change their decision to share eggs on the basis of the value of the benefits in kind offered by a clinic. She went on to say a woman who had failed fertility treatment in the NHS may be especially sensitive to the value of benefits in kind. Egg sharers are highly motivated to complete a course of donation because of their own investment in the treatment outcome. Attrition or loss of egg donors over time is far more of a problem with altruistic donors. These are women who are not seeking treatment themselves but who agree in principle to donate their eggs to help others. When it becomes clear to them what the processes will involve, some of them decided not to proceed

333 Agenda item 6 HFEA (13/07/11) 604 Another respondent said that sperm donors drop out because they have reached their maximum loss of earnings limit, meaning the earnings compensation for subsequent visits is zero. Respondents thought removing the financial caps on expenses or loss of earnings would have a positive impact on supply of sperm donors, subject to lump sum payments being sufficiently high. All respondents said that donor fertility treatment was constrained by a lack of supply, leading to waiting lists. One respondent said clinics with relatively low waiting times can attract patients and that waiting time can be as big a deterrent as cost. One respondent explained that a sperm donor visit can create approximately 2-10 vials. The typical price of a vial is around 250 to 300 but can be as high as 850. Therefore a typical market value of one donor s visit is between 500 and 3,000. At this price, and where demand for treatment is high, an increase in the supply of sperm donors will increase total clinic revenue. Section 3. Methods This section is in two parts. The first describes the survey methods and the second part describes how the economic model was developed 3.1 The survey The survey was drafted after discussion between the HFEA and the NCC- WCH. Background information was obtained from three fertility clinics approached by the HFEA to provide this information. One respondent from each of these clinics was interviewed by a member of the NCC-WCH research team. The focus of the survey was on the four policy areas covered in the HFEA Donating sperm and eggs consultation. The survey was designed to collect data from clinics on current and future activity and costs. It also included an open question for the respondents to provide their views and opinions on the issues raised in the questionnaire. The NCC-WCH provided the draft questions to the HFEA, whose designers produced the final survey on SurveyMonkey (an online web-survey provider). The online survey was designed to be completed by individual clinics within a set time-period. Clinics did not have access to data from other clinics. The survey was not anonymous and additional routine data on activity and throughput was added to the survey by the HFEA for each clinic. The data analysis is structured as follows: sub-sections are arranged by question or group of questions relating to the same policy theme. The data are reported in summary tables and graphs. Data are sub-divided into responses about sperm donation and egg sharing/donation separately. Data are analysed by type of funding of the clinic, that is, mostly NHS or mostly private. A clinic providing both NHS and private treatment was categorised as NHS if 50% or more of its funding came from the NHS. A clinic was categorised as private if less than 50% of its funding came from the NHS

334 Agenda item 6 HFEA (13/07/11) 604 At the end of each sub-section, there is a text summary of the data analysis presented in the section. These summaries inform the final conclusion at the end of the report. 3.2 The economic model A "what-if" model was developed so that the economic impact of a change in reimbursement on clinics could be assessed under different scenarios. While certain inputs can be estimated from the questionnaire or other sources, the change in donor supply as a result of the policy change in particular is a key unknown. The model allows this value to be varied to see how this impacts on clinics in terms of both their revenues and costs. The model allows other "what-ifs" to be explored, for example to what extent savings in administrative time affect the surplus/loss. A model was created using Microsoft Excel to assess the possible economic impact of changes to the compensation policy for egg and sperm donors. The model is a hypothetical one because there are so many unknowns about the future impact of a change in policy. One of the potential goals of any change in policy would be to increase egg and sperm donation, but there is no current evidence of what effect, if any, a given policy change would have. The model inputs allow the user to say what-if the number of donors increased by 10% and see what impact that has given the other assumptions. The model also allows three different automated two-way sensitivity analyses to be undertaken. Sensitivity analysis involves varying model inputs to assess how important they are in determining the outputs. It can give insights into how important they are collectively and alone in terms of driving the model s results, and allow a relationship between the two variables on model s outcomes to be observed. It graphically shows the different threshold combinations for surplus and loss for the two variables being varied. Section 4. Results of the survey Fourteen clinics out of sixty responded to the questionnaire. The results are organised by question or groups of related questions and, where relevant, the data is reported for egg donation and sperm donation separately. The policy options for compensation considered in the survey were: 1) Receipted expenses plus compensation for loss of earnings (LOE) without a cap on the maximum daily rate 2) Receipted expenses plus LOE set at a universal rate for all donors regardless of earnings 3) No change to expenses or LOE payments plus an additional fee per course for the inconvenience of donating 4) One lump sum to cover all expenses, LOE and inconvenience paid to all donors regardless of actual expenses or earnings

335 Agenda item 6 HFEA (13/07/11) Background data Table 1 shows the source of clinic funding and the number of egg-sharers and sperm donors per clinic in Table 1. Mean average number of donated gametes, by source of clinic funding, 2010 (n=8 of 10 who responded to this question) Number sperm Number of egg Visits per sperm donors, Mean donors, Mean donor**, Mean (range) (range) (range) Private clinic) (n= 22 (0-60) 47 (0-100) 18 (10-25) 4) NHS clinic(n= 4)* 4 (1-7) 8 (2-14) 12 (4-20) All clinics 13 (0-60) 30 (0-100) 15 (4-25) + includes clinics with mixed NHS and private work if private work is more than 50% *includes clinics with mixed NHS and private work if private work is 50% or less **those agreeing to a ten-family limit only Summary Table 1 shows that, of responders to our questionnaire, NHS clinics had on average recruited fewer sperm or egg donors than private clinics, but that the number of visits by sperm donors consenting to a ten-family limit was within the same range for both. 4.2 Effect on supply of sperm donors of a change in reimbursement Figure 2 reports the responses of the ten clinics which responded and shows forecast change (higher or lower) in the number of sperm donors for each of the policy options (1-4). Table 2 shows the same responses grouped by the type of clinic (NHS or private). It shows the average projected change in the number of sperm donors, taking into account that some clinics forecasted a rise in supply of donors and some forecasted a fall. The results are for a small number of donors overall and in a small number of clinics. Only eight clinics provided numerical data that could be analysed, so the results should be interpreted with caution. Fig 2. Change in supply of sperm donors with a hypothetical change in reimbursement policy, all clinics (n=9 of 10) -305-

336 Agenda item 6 HFEA (13/07/11) 604 1) Receipted expenses plus compensation for loss of earnings (LOE) without a cap on the maximum daily rate 2) Receipted expenses plus a capped LOE payment set at a universal rate for all donors regardless of earnings 3) No change to expenses or LOE payments plus an additional fee per course for the inconvenience of donating 4) One lump sum to cover all expenses, LOE and inconvenience paid to all donors regardless of actual expenses or earnings. Table 2. Prediction of the proportional change (unweighted) in sperm donors by reimbursement policy and by type of funding (n=8 of 10) PRIVATE (n = 4 ) + NHS (n = 4 )* Average number of donors in (range 0-60) 4 clinics Percentage change in the number of donors receipted expenses + compensation for actual loss of earnings +1% +33% Percentage change with receipted expenses plus compensation for loss of earnings at a set daily rate for +3% +33% each visit (no overall cap) Percentage change with receipted expenses plus compensation for inconvenience of 500 per course of donation Percentage change with compensation of 500 per course of donation for expenses, loss of earnings and inconvenience +6% +93% + 5% (range 1 7 ) 4 clinics +53% + includes clinics with mixed NHS and private work if private work is more than 50% *includes clinics with mixed NHS and private work if private work is 50% or less Summary Both private and NHS clinics estimated a rise in supply of donors for all policy options compared with the status quo. Option 3 (no change to receipted expenses and no change to LOE but an additional 500 inconvenience payment) was forecast to increase supply by the greatest amount. The predicted rise in the NHS clinics was higher than the predicted rise in the private clinics. The baseline number of donors is smaller for the NHS clinics (4 donors in 2010 versus 22 donors in the private sector) therefore the higher predicted rise of 93% for option 3 translates to four additional donors in the NHS, compared with one additional donor predicted by the private sector. 4.3 Effect on supply of egg sharers/ donors of a change in reimbursement Respondents were asked to estimate how changes in payments and benefits in kind would impact on supply of egg donors or egg-sharers. Figure 3 reports the data for the nine clinics which responded. Table 3 shows the same

337 Agenda item 6 HFEA (13/07/11) 604 responses grouping the clinics by the type of funding (NHS or private). It shows the average projected change in the number of egg sharers/donors for each clinic taking into account that some clinics forecasted a rise in supply of donors and some forecasted a fall in supply. Fig 3 Change in supply of egg donors with a hypothetical change reimbursement policy, all clinics (n=9 of 10) Table 3. Projected change in the numbers of egg sharers with a change in reimbursement policy, by type of funding (n=7 of 10) PRIVATE + NHS* Average number of donors in (range 0 100) 4 clinics 8.3 (range 2-14) 3 clinics Percentage change if receipted expenses + No change +57% compensation for actual loss of earnings Percentage change if with receipted expenses No change +57% plus compensation for loss of earnings at a set daily rate for each visit (no overall cap) Percentage change if with receipted expenses +11% +46% plus compensation for inconvenience of 500 per course of donation Percentage change if with compensation of 500 per course of donation for expenses, loss of earnings and inconvenience +11% +11% + includes clinics with mixed NHS and private work if private work is more than 50% *includes clinics with mixed NHS and private work if private work is 50% or less Summary NHS clinics reported a rise in supply of donors for all policy options compared with the status quo. Private clinics predicted no change to the supply of egg sharers/ donors with the first two options and an increase in supply for options -307-

338 Agenda item 6 HFEA (13/07/11) and 4. The baseline number of donors was higher in the private sector, (average 47 donors compared with 8 in the NHS funded sector) so the estimated rise for option 3 was predicted to lead to four new donors per clinic in the NHS sector and five new donors in the private sector. One clinic s response showed a predicted a greater increase in supply for option 4 than that for option 3 which represented a higher rate of reimbursement to the donor. This suggests that the clinic s response may not have been accurately recorded in the on-line survey, and may have skewed the results. 4.4 Question Impact on administrative workload of a change in reimbursement policy The survey asked respondents to consider the administrative burden of a change in reimbursement policy from a system of itemising expenses to a lump sum payment. Seven clinics gave qualitative answers. Table 4 shows the estimated administrative time required per donor for a course of sperm or egg donation. It also shows the predicted change in administrative time required per donor if the policy on reimbursement were to change from itemised expenses to a lump sum payment. The data are analysed by type of provider (NHS or private). The estimated cost of administrative time is also reported in the table. Table 4. Current administrative cost per hour, average administrative time per donor and forecast change from itemised expenses to lump sum reimbursement, by type of provider PRIVATE NHS * + Mean cost per hour of administrative time (range) Mean hours per course of donation (range) Number clinics which provided data Percentage change in administrative time changing from itemised expenses to a lump sum payment 44 ( ) 17 ( 10-22) Eggs Sperm Eggs Sperm 1 (0-2.5) 4 (1 7) 5.5 (1 7.8 (1 10) 20) 4 clinics 3 clinics No change 4 clinics 5 clinics -15% -35% -35% + includes clinics with mixed NHS and private work if private work is more than 50% *includes clinics with mixed NHS and private work if private work is 50% or less Summary The current administrative time was reported to be between 1 and 6 hours for egg donors and between 4 and 8 hours for sperm donors. The reported range was wider in the NHS sector. The cost of administrative time was higher in the private sector, over double the cost of the NHS sector and with a wider range of costs reported

339 Agenda item 6 HFEA (13/07/11) 604 All clinics predicted a fall in administrative time required if a policy of a lump sum payment was adopted, although there was no reported change in the administrative time needed for egg donation in the private sector. The NHS clinics forecast a larger fall in administrative time required. NHS clinics predicted that the time saved would be equal for egg donation and sperm donation. Private clinics predicted the time saving would be greatest for sperm donation. Private clinics have a higher number of sperm and egg donors overall. 4.5 Charges for treatment involving donated sperm and eggs The survey asked respondents to consider whether the change in administrative time required to process compensation to donors would have an effect on the fees for treatment involving donated sperm or eggs. Clinics were asked which policy options would affect fees charged to patients. Only two clinics responded, both in the private sector. Effect on charges for treatment with donated sperm The response from both clinics was that a change to reimbursement policy would not affect the fees charged for fertility treatment involving donated sperm. One said that fees would increase with option 1 due to administrative costs. The view of two NHS clinics was that a change to reimbursement policy would not make a difference to the fees of fertility treatment involving donated sperm. Two clinics suggested that there would be a rise in fees, although one stated that this could be offset by the increase in NHS donor availability. Effect on charges for treatment with donated eggs Two private clinics said there would be no change in fees for treatment involving donor eggs resulting from a change in reimbursement policy. Two private clinics said that fees would probably increase. Two NHS clinics said there would be no extra charges based on these options and two NHS clinics said there would be an increase, depending on the level of compensation. One NHS clinic stated that this increase would be offset by the benefit of having more egg donors available. Additional comments were: - Administrative time for paying expenses is a red herring- to use this as an argument to bring in lump sum payments rather than paying in an increased but itemised manner clouds the argument. The savings to a department in administration time are paltry compared to the savings that would be made from administrative and clinical time if less time needed to be spent in recruiting donor- this is the biggest strain on a department and would lessen relative to the amount of recompense the donor receives (more money = more donors)

340 Agenda item 6 HFEA (13/07/11) Many more hours spent on donor recruitment and equipment-nitrogen fridges to house donor sperm samples and on call for fridges with stored sperm. - The reduction in admin time will depend on the way the lump sum is paid. If it is split, in the case of donor sperm, into many portions, so that one payment for each donation/ejaculate, then there would be very little saving in time. However, if the payment is given only at the end of the whole course of donation, then there would be significant reduction. Summary There was no consensus as to whether a change in reimbursement policy would lead to a rise in the fees charged for fertility treatment with either donated eggs or sperm. The qualitative responses suggested that, in the case of sperm donation only, private clinics might be less likely than NHS clinics to pass additional costs on to patients, but the numbers who responded is too small to make a strong inference from this data. The written responses suggested that the administrative cost of reimbursement policies may not be important compared with other costs associated with donor recruitment and may be offset by donor availability. 4.6 Benefits in kind The questionnaire asked clinics to state the financial value of the benefit currently offered to egg-sharers. Three clinics responded: one reported a value of 2,950; one reported it as a free cycle of IVF including drugs and blood tests; one clinic charges a reduced fee of 400 to egg sharers, which represents a reduction of up to 3,500. Clinics were asked to estimate the likely impact on the number of egg sharers that could be recruited if the HFEA capped the value of benefits in kind to 1,500. Four clinics responded, all estimating that they would recruit fewer egg sharers. They were also asked to estimate the likely impact on the number of egg sharers if the HFEA prohibited benefits in kind altogether. Four clinics responded, all saying they would recruit fewer egg sharers. The survey asked respondents to estimate the lowest value of benefits in kind they could offer to egg sharers whilst still being able to maintain a viable benefits in kind service. None of the clinics responded to this question. The following statements were also offered: - The situation with egg donation in the UK is poor. Banning egg sharing would make it even worse. - The impact of a cap on benefits in kind would lessen if payments to altruistic donors were increased- this cannot be treated as a separate issue as the link is very real. Greater payment to egg donors would change egg donation/sharing significantly - previous egg sharers might donate in order to generate income to finance their own treatment - the ethical implication of this need to be considered very carefully - there is an increased risk to the patient from increased numbers of egg -310-

341 Agenda item 6 HFEA (13/07/11) 604 collections and there is a risk (though small) that damage may occur through OHSS etc. - Prohibiting benefit in kind would completely discourage egg sharing. It would increase medical tourism for recipients even more. It would stop altogether the possibility of treatment for patients who do not fulfil NHS criteria. - 95% of our egg donation cycles are egg sharers. Reduced benefits or withdrawal of benefits would result in a significant loss of donors, more patients would be forced to travel abroad for egg donation. - Whilst in principle I am not against payments to gamete donors, to prohibit egg sharing and substitute it with (highly) paid egg donors is unconscionable. It will unethically create opportunities for licensed centres (or force them) to expose more non-patients to avoidable risks of IVF treatment making the egg donor industry hostage to market forces. I doubt it very much that this is the long term solution for the UK clinics and patients facing donor egg shortages. Egg sharing policies conceived and refined by the HFEA are spreading worldwide because they are consistent with how women patients feel about their act of donation, making a distinction between rewarded gifting and cash awards. If the current HFEA estimates about the current demand for donor eggs are correct, then I firmly believe that egg sharing put in with proper education and practical guidance can fulfil our requirements without the need to succumb to market forces. Summary The value of benefits in kind can be free treatment or a significant reduction in the fees charged. All respondents who provided an opinion estimated that any cap or prohibition of benefits would result in fewer donors. Respondents said a cap or prohibition could lead to a significant decrease in donors, and could increase medical tourism. 4.7 Family limit Clinics were asked what proportion of sperm donors consent to family limits of different sizes and the numbers of families that resulted from donors consenting to a ten family limit. Figure 5 shows the proportion of sperm donors consenting to a ten-family limit for the clinics which provided data, analysed by type of funding. Fig 6 shows the range of family sizes created by donors who agree to a ten-family limit, analysed by type of funding. Fig 5. Proportion of men consenting to family limits of different sizes (n=6 out of 10) -311-

342 Agenda item 6 HFEA (13/07/11) 604 Fig 6. Size of actual family created by men consenting to a ten-family limit, by type of funding (n=5 out of 10) The respondents were asked to consider the threshold for family limit below which the clinic would no longer be able to maintain a viable sperm donation programme. Five clinics responded. Table 5. Reported family limit threshold for the service to no longer be viable, by clinic funding (n=5) NHS clinics Private clinics The questionnaire then asked respondents to estimate the change in treatment cycles if the ten-family limit was either raised or lowered

343 Agenda item 6 HFEA (13/07/11) 604 Table 6. Estimated change in cycles of treatment if the family limit for sperm donors were higher or lower than the current ten-family limit (n= 5) Type of funding Increase in cycles if family size was limit to 15 (%) Decrease in cycles if family size was limited to 5 (%) Private Private Not reported 20 NHS NHS NHS Summary The majority of sperm donors in both sectors consent to a ten-family limit, which is the highest number currently permitted. The proportion of men who consent to a ten-family limit is higher in the NHS sector but the numbers are too small to show statistical significance. The data was also insufficient to identify any difference between NHS and private clinics in the actual number of families created from donors who consent to a ten-family limit. Three of the five respondents predicted a 50% increase in the number of cycles of treatment that could be offered if the family limit policy was increased. Four out of five respondents predicted a 50% to 60% fall in treatment cycles if the family limit was reduced to five families per donor. 4.8 Family donation Respondents were asked the number of requests they receive for family donation per year. Five clinics responded and the results are reported in figure 7 below. Fig 7. Number of requests for family donation per year (n=5) Respondents were also asked to consider the financial impact on the clinic if they were required to provide separate counselling sessions for donors and recipients within families. Five respondents answered this question all of whom said that this would not result in any change as they already provide -313-

344 Agenda item 6 HFEA (13/07/11) 604 separate consultations for family donation. Finally, the survey asked respondents to consider the administrative impact of a ban on donation between close family members (e.g. brother to sister). Three clinics responded, and all said that an introduction of this policy would not represent a change in practice as they do not offer this kind of family donation. Summary Clinics receive between two and ten requests for family donation per year. There would be no financial impact on their practice if the HFEA were to require clinics to provide separate counselling sessions for those considering family donation as this is already in place. None of clinics in the survey offer a gamete donation service for close family relatives. 4.9 Open-ended responses At the end of the survey, respondents were offered the opportunity to make any additional statements arising from the questions asked. Four respondents commented on this section but one comment related to filling in the survey online. The other three comments are below: We should consider known donors separately as these often skew the figures. They will usually only consent to one family and not want any compensation etc. With sperm donors, the usefulness of increasing the family limit may be outweighed by the difficulty in obtaining sufficient samples to successfully help say, 15 families for example. More patients would have treatment but perhaps fewer would become pregnant before the sperm ran out. Change for the sake of change is counterproductive. It must come with delimitation, not confusion or paranoia about how the centres apply the guidelines. It is essential to have a co-ordinated national approach to donation. This issue needs to be a matter of public education to encourage both egg and sperm donors to come forward. We encounter problems with stored embryos created using donor sperm. These embryos block a pregnancy slot, they may be stored for many years and in some cases may never be used, denying another patient the use of that precious donor sperm. 5. Economic modelling Scenario Sperm donation This section illustrates how economic analysis can be used with data derived from the survey questionnaire to make additional insights into the possible impact of a change in policy on costs and revenue to fertility clinics. The model is not based on real financial data, but on responses to the questionnaire by clinic representatives. It illustrates the financial impact of different reimbursement policy options based on a set of assumptions. It shows which one is more favourable, using these assumptions, and which ones may be less favourable. The model inputs are shown in Tables 7 and 8 for the current reimbursement policy and for option 4 (a lump sum payment of 500), respectively

345 Agenda item 6 HFEA (13/07/11) 604 Table 7. Inputs for current policy Variable Value Source Notes No. of sperm 13 Questionnaire The clinic average based on the donors per clinic survey responses Expenses 100 Dummy value Loss of Earnings 250 Maximum current reimbursement for loss of earnings Administrative cost 124 Questionnaire The mean administrative time per course of sperm donation was 6.5 hours, with the mean cost of one hour of administrative time estimated at 19 in the NHS. 6.5 x 19 = 124 Table 8. Inputs for option 4 Variable Value Source Notes Change in donors +20% Questionnaire Most conservative value in the survey for the predicted increase in sperm donors. (Range 20%-60%) Lump sum 500 Option 4 payment Administrative cost 80 Questionnaire Survey responders estimated that this would reduce the administrative time by a mean value of 35% Marginal costs of a new donor Marginal revenue from a new donor 200 Dummy value 12,500 Dummy value 6.5 x 0.65 x 19 = 80 With these inputs the model suggests that a clinic with 13 current sperm donors would be better off by approximately 29,000 by a change in policy to a 500 lump sum per course of donation. The drivers of this are shown in Figures 8 to 10. This is because the increased cost of compensation is more than offset by the additional revenue that the clinic predicts it can make from the additional donors. Holding all other inputs constant, the model shows that the break-even threshold for marginal revenue is 1,310. Similarly, the break-even threshold for an increase in donors is 1% if it is assumed that the clinic can make 12,500 in revenue from each new donor

346 Agenda item 6 HFEA (13/07/11) 604 Figure 8. Administrative and reimbursement cost per patient Figure 9. Total administrative and reimbursement cost Figure 10 shows in more detail the relationship between marginal revenue and change in the number of donors -316-

347 Agenda item 6 HFEA (13/07/11) 604 Figure 10. Total administrative and reimbursement cost Figure 11. Profit/loss thresholds for different combinations of change in donors and the marginal revenue obtained from new patients Figure 11 shows the combinations of changes of supply in donors and the marginal revenue per course of treatment with donated sperm at which the clinic makes a profit, fixing all the other model parameters. The shading indicates that at low marginal revenue, a high increase in supply is needed for the policy change to be profitable to the clinic. If there is only a small increase in donors, this can still be profitable for the clinic providing there is proportionally higher marginal revenue associated with additional donors to remain in profit

348 Agenda item 6 HFEA (13/07/11) Conclusions and further research 6.1 Overview Only 14 clinics registered to respond to the online survey, and of those, only 13 clinics provided any data. None of the respondents provided answers to all the questions (where, for example, they did not provide a service), and, for some questions, less than half the clinics responded. Because of small sample size, all analyses of the data needs to be treated with extreme caution as the analyses are not generally powered to identify statistically significant differences in responses either by scale of business based on donated gametes or by the type of funding (mostly NHS or private). Furthermore, many of the questions asked responders to predict the effect of a change in policy on future donor supply. This kind of data is inherently unstable because it asks the responder to quantify an unknown. There may also be scale effects in the responses to the survey. This means the responses may differ systematically depending on the baseline number of donors. For example, an increase of 100% of donors for a clinic with three current donors is a far smaller change in the number of new donors than an increase of 100% for a clinic that already has 100 donors. It is very possible that this scale difference in current donor activity may have skewed the data on projected activity adding to the instability of the results. 6.2 Compensation and benefits in kind Despite the caveats above, the responses to the survey concur with the economic theory set out in Section 2 of this report, that is, the higher the level of compensation payments (marginal benefit) to sperm donors or to egg sharers in benefits in kind relative to their costs, the higher the predicted supply. Taken at face value, private clinics have a higher number of sperm and egg donors. However, it was not possible to identify whether any of the differences in responses between NHS and private sector are based on real differences (which would be identified in a random sample of clinics and sample size powered to identify this difference). Also, it is not possible to interpret whether the differences in responses by type of funding (mostly NHS or mostly private) is due to differences in the types of business these clinics represent or a difference in the scale of activity using donor gametes as private clinics reported a far higher level of activity than NHS clinics. If all responses are taken at face value, the survey suggests that changing the policy of reimbursement from receipted expenses plus a capped loss of earnings payment to a lump sum payment (with or without receipted expenses as well) will have the greatest impact on the supply of donors. Option 3 (lump sum payment for inconvenience plus receipted expenses) will have the biggest impact in terms of the number of clinics which predicted this would increase supply of sperm donors and the magnitude of the increase in supply predicted. By contrast, options 1 and 2 had the biggest reported increase in egg donors by NHS clinics, but no change predicted by private clinics. It is not possible to interpret this difference given the small numbers of respondents to the survey as it may be due to chance

349 Agenda item 6 HFEA (13/07/11) 604 Respondents predicted the administrative time per course of donation would fall for sperm donation if a policy of a lump sum payment was introduced. However, private clinics predicted no change in administrative time for egg donation. Given this, the overall administrative cost as a proportion of the total cost is fairly small. This means that fertility clinics are not likely to cease offering donor treatment with a change in reimbursement policy due to the consequent change in administrative costs alone. However, using the economic model developed for this Impact assessment, the output suggests that there are scenarios where a change in reimbursement policy may lead to an increase in payments to donors without a sufficient increase in supply. If these conditions were to exist, then at least some clinics may end their donation service on the basis of economic viability. The impact of a change in reimbursement to supply is unpredictable and therefore it is not possible to determine, give the available data, whether any of the proposed options will have a positive or negative impact on the total revenue and profits of a fertility clinic In summary, although administrative costs may change, the supply of donors is a more important in determinant of the financial health of a fertility clinic. There are important unknowns in the analysis of the future financial impact of a change in reimbursement policy. The first is the marginal revenue per donation used in fertility treatment, that is, the additional income to the clinic from one additional donation. The second is the marginal revenue from treatment with donated gametes. The third important variable is the impact on supply of a change in donor reimbursement policy. The economic model was highly sensitive to small changes in these variables. The output from all the permutations of these model parameters are not reported here as there are so many of them. 6.3 Family limit and intra family donation Only five clinics provided data on family limit. However, taken at face value, the survey shows that most men donating sperm consent to a ten-family limit. The data was insufficient to identify any difference in the number of families actually created from donors who consented to a ten-family limit. Respondents predicted a rise in families created if the limit was raised and a fall if the limit was lowered. The clinics responding to the survey receive between two and ten requests for family donation per year. All reported that they already offer counselling and do not offer donation between close relatives thereby preventing the mixing of gametes between genetic relatives. 6.4 Future research The limitations of the online survey have been described. An economic model of the financial impact of a change in HFEA policy requires more robust estimates of the main parameters that drive net profit. These values may not be easy to obtain, but an attempt to identify a consensus in the industry of these parameters would be beneficial. Financial data from individual clinics is sensitive information, but at an industry level, it may be possible to obtain -319-

350 Agenda item 6 HFEA (13/07/11) 604 some agreement across clinics of a range within which the true values are likely to lie. For example a consensus-based survey with a set number of rounds of agreement could be designed to identify: The marginal cost and revenue from a new donor Average expenses per course of donation (current) Average expenses with a new policy for reimbursement (future) Average loss of earnings with cap (current) Average loss of earnings with no cap (future) -320-

351 Agenda item 6 HFEA (13/07/11) 604 Appendix A Description of a whatif model to explore the economic impact of a change in compensation policy for egg and sperm donors Introduction The HFEA has recently consulted on possible changes to policy governing compensation for egg and sperm donors. Whilst it is accepted that there shouldn t be strong financial incentives to donate, it is thought that current policies might be a disincentive, with donors potentially being left out-ofpocket by current compensation arrangements. Economic theory predicts that donation would occur so long as the marginal benefit exceeds the marginal cost. The marginal benefit would include any financial compensation but can also include aspects of altruism 6. However, other things being equal, the greater the marginal cost of donation arising from travel expenses, loss of earnings and inconvenience, for example the lower that donation is likely to be. Clearly changes in compensation arrangements will have an economic impact on the clinics involved in the collection of egg and sperm from donors, as these are costs that have to be met by them. However, it is also thought that different compensation arrangements may impose a different administrative burden on clinics and therefore this also has to be considered as part of the economic impact. Finally, there is the potential for changes in compensation to lead to changes in the supply of donors, especially if these changes address real disincentives. Any increase in the number of donors means that not only do people who would have donated under the previous arrangements get rewarded differently but that the total number of donors being rewarded is changed. Each new donor also means increased costs for the clinic (e.g. counselling, testing, collection and storage of samples etc). However, an increase in donors also increases the amount of treatment cycles the clinics can provide and there are often long waiting lists. This means that increased donation generates additional revenue streams for the clinic. The economic impact can be broken down into a number of simple equations: 1Compensation currently paid per donor 2Current number of donors 3Compensation paid per donor under new arrangement 6 It is recognised that for altruistic donors that the marginal benefit from compensation may be a complex relationship -321-

352 Agenda item 6 HFEA (13/07/11) 604 4Number of donors under new arrangement 5Administration cost per patient under present arrangement 6Administration cost per patient under new arrangements 7Additional costs associated with a new donor (excluding costs relating to compensation) 8Additional revenue arising from a new donor 9 Change in compensation payments = (3 x 4) (1 x 2) 10 Change in compensation administration costs = (6 x 4) (5 x 2) 11 Additional costs of new donors = 7 x (4-2) 12 Additional revenue from new donors = 8 x (4-2) It is perhaps useful to think in terms of the overall economic impact on clinics as the change in profit or surplus arising from the policy change. Profit or surplus is simply the difference between revenue and costs and so from the equations above: 13 Surplus = 12 - ( ) Economic theory suggests that the profit maximising firm would support a policy where the increase in revenue more than offset any increase in costs or, in other words, where the value of 13 above is positive. A simple model using Microsoft Excel was created to assess the possible economic impact of changes to the compensation policy for egg and sperm donors. The model is a hypothetical one and because there are so many unknowns the outputs should be considered as part of a what-if analysis. So, for example, one of the likely goals of any change in policy would be to increase egg and sperm donation but in the absence of the change having taken place we have no evidence what, if any, effect a given policy change would have. So the model inputs allow the user to say what-if the number of donors increased by 10% and see what impact that has given the other assumptions. It should be remembered that the costs and revenues are different for egg and sperm donation and therefore the economic impact of any change of compensation policy will be different according to the type of donation. The model considers the following impacts on costs and revenue to a clinic: A change in the proportion of donors resulting from a change in policy: This is a key unknown but is potentially the key economic impact of any change in compensation policy. The model essentially makes a simplifying assumption that the quantity of eggs/sperm donated per donor is fixed but it should be remembered that changes to compensation arrangements could lead to greater donation by existing donors as well as increasing the supply of new donors. Conceptually the issues are the same but the additional costs and -322-

353 Agenda item 6 HFEA (13/07/11) 604 revenue (see below) from increasing supply from existing owners are likely to be different to the additional costs and revenues arising from new donors. Changes in reimbursement of expenses, loss of earning and inconvenience: These represent the three kinds of payment that might be paid under any change in policy. There are a wide number of permutations in terms of how compensation might be paid as the result of any policy change. This could range from the payment of a lump sum to the introduction of inconvenience payments or an increased allowance for loss of earnings. However, it is important to recognise that data entry in this what-if model doesn t have to capture the variety of options available. What matters in terms of the economic impact on the clinic is how the change effects the average compensation payment per donor. The summation of these three inputs gives that average payment. Administration cost: This is intended to be the average cost of processing compensation payments per donor. Costs of new donor: Aside from the costs arising from compensation payments there are other costs to the clinic of new donors (e.g. counselling, testing, collection and storage of samples). This input is intended to capture those costs. Marginal revenue per donor: Increasing donors increases the samples collected which allows the clinic to provide more treatment or, in the case of sperm, to sell samples to other clinics offering treatment. Therefore, new donors increase the revenue streams for clinics and this input is intended to reflect the additional revenue made as a result of a single new donor. Understanding the results a hypothetical example The model s default inputs are shown in Figure A.1 below. Figure A.4. Illustrative model inputs -323-

354 Agenda item 6 HFEA (13/07/11) 604 With these inputs the model suggests that the clinic would be 3,000 worse off as a result of the change of policy. What drives this result? First, the average compensation payment per donor has increased by 140 (see Figure A.5.). Second, the increase in compensation payments means that the total donors has increased by ten, and these all receive the new higher level of compensation. Although, the administrative cost is reduced by 1,000 this doesn t fully offset the increase in compensation paid. Overall, the compensation and administration cost is increased by 11,000 (see Figure A.6). In addition, the ten new donors incur an additional 2,000 in cost, making a total cost arising from the policy change of 13,000 which isn t offset by the 10,000 increase in revenues (see Figure A.7.). All these figures can be accessed from the charts menu. The model allows various thresholds to be explored. For example, holding all other model inputs constant at their default value it can be shown that there would need to be a 54% increase in donors for the clinic to reach break-even ( 16 surplus). Or, holding all other inputs constant, the marginal revenue would have to be 1,300 per patient for the clinic to break even (with higher values leading to surplus)

355 Agenda item 6 HFEA (13/07/11) 604 FigureA.5 Figure A.6 Figure A

356 Agenda item 6 HFEA (13/07/11) 604 Two way sensitivity analyses 1) Varying the marginal cost and marginal revenue All other inputs are held constant at the value the user has pre-defined, which doesn t have to be their default values. In the example shown below the marginal cost (cost of new donor) was varied between 50 and 1,000 and the marginal revenue was varied between 500 and 10,000. All other inputs were set at their default value (see Figure A.4). The results are shown in Figure A.9. It illustrates the intuitive result that for higher marginal costs, higher marginal revenue is necessary in order to achieve a surplus. Figure A.9. Two way sensitivity analysis showing profit and loss for different combinations of marginal cost and marginal revenue 2) Varying the change in donors and marginal revenue Again the user selects a lower and upper value for both variables. In the example shown below, see Figure A.10, the increase in donors is varied between 0 and 100% and the marginal revenue is varied between 500 and 10,000. Figure A.10. Two way sensitivity analysis showing profit and loss for different combinations of marginal revenue and change in patients -326-

357 Agenda item 6 HFEA (13/07/11) 604 Clearly, when there is no increase in donors then the policy change will result in a loss, at least with the other inputs held constant at their default values, as there is an increase in administration costs without any offsetting increase in revenues. However, only a small increase in patients is needed initially to produce large falls needed in the threshold marginal revenue values needed for surplus. As marginal revenue falls, the increase in patients has to be more substantial in order to achieve surplus. Again this finding is intuitive given relationship 12 described earlier 3) Varying the change in donors and marginal cost The user selects a lower and upper value for both variables. In this example the increase in donors is varied between 0 and 100% and the marginal cost is varied between 50 and 1,000. Other inputs are held at their default value. The results of this analysis are shown in Figure A.11. Figure A.11. Two way sensitivity analysis showing profit and loss for different combinations of marginal cost and change in patients Even with a very low increase in marginal cost, there has to be a substantial increase in donors to reach break-even. Such an increase is needed to compensate for the increased compensation payments being paid. As the marginal costs increase then naturally a larger increase in patients is needed to compensate additionally for this

358 Agenda item 6 HFEA (13/07/11) 604 Annex N: Responses from organisations Donating sperm and eggs: Have your say Summary of responses from organisations The below organisations responded to the consultation: Donating sperm and eggs: have you say: Aberdeen Fertility Centre A licensed Treatment & Storage centre based in Aberdeen. Alliance for Humane Biotechnology (AHB) Altrui Association of Clinical Embryologists (ACE) BASW PROGAR (Project Group on Assisted Reproduction) British Fertility Society (BFS) British Medical Association CARE Centre for Family Research, University of Cambridge Christian Concern and the Christian Legal Centre The Alliance for Human Biotechnology is an international non-profit corporation dedicated to raising public awareness about the social implications of genetic engineering and reproductive technologies. Altrui is an organisation which aims to find a specific type of donor for couples. They take the couples preferences into account, and then look to advertise for this type of donor. The Association of Clinical Embryologists is the professional body of and for embryologists in the UK. It aims to promote high standards within the profession through the provision of advice, support and information to its members. The British Association of Social Workers is a professional body for social workers. The Project group on Assisted reproduction is administered by BASW. PROGAR use the knowledge of BASW on infertility counselling, donor concerns and other issues to then contribute to policy issues affecting the sector. The British Fertility Society is a group open to those who are involved in the science and practice of human fertility, reproductive medicine and biology. They promote high standards within the field (for both training and practices) and liaise with other interested groups to promote areas of mutual interest. The British Medical Association (BMA) is the doctors' professional organisation representing all branches of medicine in the UK. A religious organisation which aims to bring Christian insight and experience to matters of public policy. The Centre for Family Research is based at the University of Cambridge. It conducts research into families, in terms of genetics and bio-ethics. Christian Concern is a UK religious group which aims to provide a 'Christian voice' into the law, media and government. The Christian Legal Centre is a sister organisation which provides legal assistance to people who have stood for their Christian belief and may have faced some type of repercussion as a result

359 Agenda item 6 HFEA (13/07/11) 604 Church of England Church of Scotland Council for Responsible Genetics Cryos International Donor Conception Network Committee Human Genetics Alert Infertility Network (Canada) Infertility Network UK International Donor Offspring Alliance NGDT Progress Educational Trust (PET) Royal College of Nursing Midwifery & Fertility Nurses Forum Royal College of Physicians Royal College of Obstetricians & Gynaecologists The Church of England is a Protestant denomination of Christianity. The Church of England is a part of the Anglican Church The Church of Scotland is the national church in Scotland and part of the Anglican Church The Council for Responsible Genetics is an American based non-profit, non-governmental organization which fosters debate about the social, ethical and environmental implications of genetic technologies Cryos International is the umbrella company for a number of Cryos centres located around the world which are sperm banks. The Donor Conception Network is a UK based 'self-help' network for families, couples, individuals who have used or been conceived by donor gametes. Their main aim is to support and guide those who have, or plan to, use donor gametes. Human Genetics Alert (HGA) is a secular, independent public interest watchdog group, based in London, UK. Infertility Network Canada is an independent, registered Canadian charity, which provides information and support to infertile couples, advocates for reform on particular issues and aims to develop public understanding of the ART field Infertilty Network UK is a UK based group which offers information and support to anyone affected by fertility problems. They campaign for improved awareness and access to treatment. The International Donor Offspring Alliance was set up in 2007 to act as an advocate for those conceived through the use of donor gametes. It asserts that all donors should be able to find out the manner of their conception and their biological parents. The National Gamete Donation Trust was set up in It is a UK government funded charity which raises awareness and seeks to alleviate any shortage of gametes. The Progress Educational Trust aims to bring timely influence to bear on policy makers as new advances and issues arise. They produce BioNews, a weekly newsletter reviewing the latest issues within the scientific/medical field. The Royal College of Nursing, Midwifery and Fertility Nurses Forum is a group set up to promote high standards of practice and increase awareness of midwifery and reproductive health. The Royal College of Physicians is independent membership organisation that engages in physician development and raising standards in patient care. The Royal College of Obstetricians and Gynecologists encourages the study and advancement of the science and practice of obstetrics and gynecology

360 Agenda item 6 HFEA (13/07/11) 604 Scottish Council on Human Bioethics South East Post Adoption Network (SEPAN) UKDonorlink Registrants Panel The Association of Biomedical Andrologists British Infertility Counselling Association The Scottish Council on Human Bioethics is an independent charitable organisation composed of professionals from various disciplines associated with medical ethics. The South East Post Adoption network is a group of practitioners who have experience in Family Placement and Post Adoption Work. They work to help people who were not brought up by their genetic parents. UK Donorlink is a voluntary contact register set up to allow people conceived through donor eggs/sperm to get in touch with their donors, half brothers and sisters etc. The Association of Biomedical Andrologists was formed in August 2004 as a professional body to provide support for laboratory scientists in the United Kingdom who undertake clinical andrology in their daily work. BICA is the only professional association for infertility counsellors and counselling in the UK. BICA seeks to promote the highest standards of counselling for those considering or undergoing fertility investigations and treatment. The Anscombe Bioethics Centre The Wales Gene Park and Techniquest The Anscombe Centre is a Roman Catholic academic institute that engages with the moral questions arising in clinical practice and biomedical research. Was created by the Wales Gene Park and Techniquest, for up to 30 pupils per session, which encourages debate about the social and ethical issues surrounding the National DNA Database. It is inspired by Democs. See report at Annex A. Comment on reproductive ethics (CORE) Comment on Reproductive Ethics was founded in 1994 by Josephine Quintavalle and Margaret Nolan. It is a public interest group focusing on ethical dilemmas surrounding human reproduction, particularly the new technologies of assisted conception

361 Agenda item 6 HFEA (13/07/11) 604 Changing Landscape This section of the consultation sought to gather information on the wider barriers and facilitators of sperm and egg donation in the UK. We asked: What action, besides amending HFEA policy, do you think could be taken to increase the availability of donated sperm and eggs in the UK? (please select more than one if appropriate): 1) A change to the law to enable donors to be paid for their donation, which is currently prohibited 2) A change to the law to allow donors to be anonymous, which is currently prohibited 3) A change to the law - other (please specify) 4) A change to professional guidance on donor screening 5) A change to professional guidance - other (please specify) 6) Increasing people s awareness of, and educating people about, donation 7) Carrying out national donor recruitment campaigns 8) Other (please specify) 9) None -331-

362 Agenda item 6 Option 1 Option 2 Option 3 Option HFEA (13/07/11) 4 Option Option 6 Option 7 Option 8 Option 9 Organisation Organisation A change A change A change A change A change to Increasing Carrying Other None type to the law to the law to the to professional awareness out to enable to allow law - professio guidance - of, and national donors to donors to other nal other educating donor be paid be guidance people recruitment anonymous on donor about, campaigns screening donation Patient organisations Professional Bodies Clinics and donor recruitment centres INUK DCN NGDT Altrui ACE BFS BMA RCOG Royal college of Nursing Midwifery & Fertility Nurses Forum Cryos International The Aberdeen Fertility Centre The Assisted Conception Unit, Jessop Wing The Bristol Centre for Reproductive Medicine Midland Fertility Services Sussex downs fertility centre -332-

363 Agenda item 6 HFEA (13/07/11) 604 Other organisations SWCRM The London s Women s Clinic and the London Sperm Bank The London s Women s Clinic Swansea BASW PROGAR The Council for Responsible Genetics The Centre for Family Research The Progress Educational Trust The South East Adoption Network The Alliance for Humane Biotechnology Table 1: Options selected by organisations to the question, what action, besides amending HFEA policy, do you think could be taken to increase the availability of donated sperm and eggs in the UK? -333-

364 Agenda item 6 HFEA (13/07/11) 604 Patient organisations Both INUK and the DCN opted for increasing people s awareness of, and educating people about, donation, as a way of increasing donor numbers in the UK. The DCN also opted for carrying out national recruitment campaigns. The Infertility Network Canada used this section to put forward its view that payment and anonymity are ethically wrong. It argued that donor recruitment should be done by an independent, non-profit organisation whose primary concern, training & focus is on the long term needs & welfare of donors, patients & offspring. Donor organisations The NGDT s view is that effective communication of HFEA guidance, is important to ensure best practice and most efficient use of gametes, e.g. clarification when donors are registered; how to export to other clinics; clarification on sibling use; clarification on clinical use such as CMV; age of donors. The NGDT advises that the following will also help to improve practice: improve information on the HFEA website standard HFEA information on every clinic website HFEA should communicate not only to PRs but also to donor coordinators improved clinic care NGDT funded to train clinics in better management of donors clinics should be advised to improve their liaison with potential and actual donors clinics should be encouraged to see donors as precious commodities rather than nuisances feedback from donors MORI poll to be set up to test the view of the general public set up central body to organise recruitment and management of gametes allowing more research in alternative ways of creating gametes stimulate cooperation between blood organisations implement a culture that enables people to donate during work time The NGDT recognises that payment could increase the availability of gametes, however it believes this can be achieved in other ways if the intention is there and resources are made available. Altrui suggests that the law should allow all donors to be compensated for their time, not just if they are employed. It also chose option 6 as a way of increasing donor numbers. Donor conceived and/or parent organisations The International Donor Offspring Alliance stated that the consultation question presupposes that the HFEA should be increasing the availability of donated sperm and eggs. Its view is that donor conception is fraught with ethical concerns, and that -334-

365 Agenda item 6 HFEA (13/07/11) 604 it is by no means clear that donor conception should be promoted or made more widely available. UK Donor Link does not believe that there is a shortage of donors in the UK. Instead, it argues that donors are currently underutilised. In addition, clinics could convert more prospective donors into active long term donors by keeping recruitment timescales short, contacting them at regular and timely intervals and avoiding leaving them hanging for long periods of time with no feedback or updates. It is against a change in the law to reinstate donor anonymity. Professional bodies ACE recommends a change to professional guidance, specifically a reduction of the quarantine period where NAT testing is used. It also argued for option 6 in conjunction with national and local recruitment campaigns, in association with stakeholders, including HFEA and ACE. BICA make the following points with regard to donor recruitment and retention: The welfare of the child is paramount at every stage. Apart from increasing financial outcomes, the donor shortage needs to be reviewed in a more creative way, looking at existing availability and use, and actively promoting a range of donation types as an altruistic concern. There is no case made for changing the existing rewards system. Implications counselling should be mandatory for all parties involved. Different standards must not be applied to known and stranger donors. Provision of long term support for recipients and donors and other parties involved, to ensure continual welfare of the child issues and family openness. Any desire to increase donor supply should not be at the expense of ensuring the preparedness of donors and recipients for the long-term implications of donor conception. The Association of Biomedical Andrologists maintain that extended storage periods may help ensure donors reach the family limit and hence increase availability of donor sperm. In addition it argues there is room for improvement with regard to: Adherence to good practice with regard to donor sperm quality Good practice around the recruitment, testing, processing and cryopreservation of sperm donors and highlights its guidelines for good practice on sperm processing and cryopreservation and the ABA training schemes. Use of viral positive donors, provided informed consent is in place. Clinics and donor recruitment centres Cryos International in addition to the options highlighted above it advocated a removal of anything that may prevent donors interest in becoming donors. This includes limiting donor compensation and HFEA-forms (MD form and D form) and screening requirements

366 Agenda item 6 HFEA (13/07/11) 604 The London Women s Clinic, Cardiff, argued that donors should receive free treatment in exchange for donating or have a donation cycle and a second cycle for oneself to give both a better chance. The London Women s Clinic and The London Sperm Bank maintains that HFEA guidance regarding donor recruitment and use has de-motivated the clinics as well as the donors. This may in itself have caused a problem with gamete supply. The ability of clinics to satisfy demand is dependent on properly designed and funded recruitment campaigns. Religious organisations CARE argued that the HFEA does not have responsibility for donor recruitment and is stepping very close to its remit by consulting on this, particularly with a biased approach that assumes all respondents agree with the need to increase availability of donated gametes. CARE is also sceptical about the extent of real need for donors. It is concerned that increased availability and commercialisation will simply encourage expansion of demand, not simply meet present demand. CARE argues that, if there is a shortage, it is likely to be complex. It argues that potential donors will be beginning to appreciate that the potential costs and rights due to children born of donation may outweigh the desires of infertile parents to have a child who is partly genetically theirs. Perhaps more donors appreciate the significance of creating a child genetically theirs but who they are unlikely to have any meaningful relationship with. The Christian Concern and the Christian Legal Centre is opposed to egg and sperm donation and therefore do not believe that it is appropriate to increase the availability of donated sperm and eggs in the UK. It argues that it is essential that any donation remain an altruistic act and that any children created as a result of donation should be able to identify their genetic donor parent and any genetic sibling The Church of England notes that whilst changes in the law may increase availability of donors; it does not believe changes should be made. The Church of Scotland advocates no action to increase donor availability. Other organisations BASW PROGAR advocates no change. It reaffirms the importance of the removal of anonymity to donor conceived people and has seen no evidence that re-introducing anonymity or payment would increase supply. It also argued that professional guidance should be evidence based and focused on protecting children, patients and donors, including from social and emotional harm. It argues for the importance of counselling, long term support for donors, (donor) partner consent and compelling donors to provide a pen portrait and reasons for donating. It is PROGAR s view that the priority should not be to increase supply at all costs but that any increase in supply should only be achieved if certain conditions are met, in particular those to do with lifelong implications for donor-conceived people, donors and their kinship networks

367 Agenda item 6 HFEA (13/07/11) 604 The Council for Responsible Genetics argues that, since virtually no long-term studies of the health effects of egg harvesting have been done, women cannot provide informed consent to donation. In addition it opted for 6 as a way of improving donor recruitment. The Centre for Family Research, University of Cambridge argues that the best route for increasing donors in the UK would be through awareness, education and centralised national recruitment campaigns. It also think it is very important that these campaigns seek to change attitudes more broadly, tackling the stigma currently associated with sperm donation and valuing the contribution donors make. It believes it is important for donors to be treated well (information, waiting times, clinic atmosphere, politeness of staff) and given due respect. The better their experience is, the more positive they will feel about themselves and their donation. And they will be more likely to introduce further donors, which could be a very effective recruitment strategy. Mirror donation schemes, which seem to be working well in some European countries, also offer a possible means of increasing donorsupply. Additionally, it feels it is important to point out the current ineffective use of sperm. Developing protocols to ensure that existing supplies are used more efficiently may have a significant impact on shortages. The Progress Educational Trust opted for 1, 6 and 7. It argues that society should encourage - but not compel - its citizens to become donors. While formal campaigns to improve awareness and understanding of gamete donation are valuable and important; just as people help one another overcome adversity, helping one another overcome infertility a should be recognised as an important part of social solidarity The Alliance for Humane Biotechnology argues that all financial incentives should be eliminated so that altruism is genuine

368 Agenda item 6 HFEA (13/07/11) 604 Compensation This section asked separate questions on expenses, earnings, and inconvenience. Expenses 1a) In principle, do you think donors should be compensated for expenses they incur during the process of making a donation (e.g., the cost of a train fare to the clinic)? Sperm donors Yes/No Egg donors - Yes/No 1b) In practice, how do you think a donor s expenses should be compensated (select a scheme for sperm donors and a scheme for egg donors)? Sperm donors A fixed amount of money that is the same for all sperm donors (please specify an amount in ) A variable amount of money according to the donor s actual expenses Other (please specify) Egg donors A fixed amount of money that is the same for all egg donors (please specify an amount in ) A variable amount of money according to the donor s actual expenses Other (please specify) It s important for us to understand the reason(s) for your answers above. Please give a brief explanation. 1c) Do you think donors should be compensated for expenses they incur outside the UK (e.g., the cost of travel to a clinic in the UK from Asia or Europe)? Sperm donors Yes/No Egg donors Yes/No Please give an explanation of your answer or provide any further comments, including how compensation should apply to overseas donors, whose eggs or sperm are imported in to the UK. Earnings 1a) In principle, do you think donors should be compensated for earnings they lose during the process of making a donation (e.g., for time off work to attend clinic appointments)? Sperm donors Yes/No Egg donors Yes/No 2b) In practice, how do you think a donor s loss of earnings should be compensated for (select a scheme for sperm donors and a scheme for egg donors)? Sperm donors A fixed amount of money that is the same for all sperm donors (please specify an amount in ) -338-

369 Agenda item 6 HFEA (13/07/11) 604 A variable amount of money according to the donor s actual earnings lost Other (please specify) Egg donors A fixed amount of money that is the same for all egg donors (please specify an amount in ) A variable amount of money according to the donor s actual earnings lost Other (please specify) Inconvenience 3a) In principle, do you think donors should be compensated for the disruption and discomfort associated with the process of making a donation (e.g. the inconvenience and side effects of hormone injections for egg donors and the inconvenience of numerous clinic visits for sperm donors)? Sperm donors Yes/No Egg donors Yes/No 3b) In practice, how do you think a donor should be compensated for the routine disruption and discomfort associated with the process of making a donation (select a scheme for sperm donors and a scheme for egg donors)? Sperm donors A fixed amount of money that is the same for all sperm donors (please specify an amount in ) A variable amount of money according to the donor s actual disruption and discomfort experienced Other (please specify) Egg donors Egg donors A fixed amount of money that is the same for all egg donors (please specify an amount in ) A variable amount of money according to the donor s actual disruption and discomfort experienced Other (please specify) -339-

370 Agenda item 6 HFEA (13/07/11) 604 Compensation Patient organisations INUK stated compensation for expenses, loss of earnings and inconvenience should be given to donors. Expenses and loss of earnings should be variable, according to the donor s actual expenses and should be dependent on proof of expenses and salary lost. With regard to inconvenience, a fixed amount of money should be given to all donors, but did not specify an amount. The IN Canada thought that variable expenses should be given to donors; however no compensation should be provided for loss of earnings or inconvenience. Reimbursing lost wages opens the door for this to be used as a loophole to pay the donor. and Offspring may be deeply disturbed by the thought that donation took place for money. Both the INUK and the IN Canada do not believe non-uk expenses should be provided, as is concerned that such a system may be exploited. Donor organisations The NGDT put forward two alternative consultation responses, a principled view and a compromised view. Principled view: the NGDT believes that donation should be a purely altruistic act. With sufficient and sustained investment in training, awareness programmes and recruitment, the NGDT believes that it is possible to recruit an adequate number of altruistic donors to meet demand. On this view, only expenses should be reimbursed to donors, according to actual expenses incurred. Compromised view: This view recognises that funding for awareness and training are limited. It also recognises that the NGDT s principled view is not always supported and that professionals and patients might prefer to support a less complex and more commercial approach. On this view, in addition to variable expenses, egg and sperm donors should receive a fixed amount, which is the same for all donors of 350. On this view 350 is a small thank you and, for most people, not appealing enough to make impactful choices purely based on financial gain. Altrui advocates a variable amount to cover actual expenses and loss of earnings; the latter must be adjusted in line with inflation. No money should be given for inconvenience as this is tantamount to payment; however Altrui believes that a thank you in kind, which could be listedi.e. spa day, flowers, theatre tickets etc up to a certain amount should be permitted. Non-UK expenses should not be paid: It will encourage donors to charge recipients high sums of money (currently about 15,000) and recruitment outside the UK cannot be properly regulated and should not be encouraged. Drawing from its experience, Altrui concludes: -340-

371 Agenda item 6 HFEA (13/07/11) 604 We believe that the call to increase payment/compensation coming from clinics is possibly premature and maybe more of a reflection of their methodology for recruiting donors. There seems to be little evidence that serious dedicated time has been given to the recruitment of altruistic donors and as a result this has led to the belief that money is needed as a inducement to come forward as donors. Our experience, early though it might be, suggests otherwise. Donor conceived and parent organisations The International Donor Offspring Alliance stated that no compensation should be given to donors for expenses, loss of earnings or inconvenience. It is also against the reimbursement of non-uk expenses. Both the UK Registrants Panel and the DCN Committee believe that variable expenses should be given to donors, according to what the donors actually spend. The UK Registrants Panel does not advocate compensating for loss of earnings, however the DCN Committee believe that loss of earnings can be compensated to a variable amount: If gamete donors were to be offered a fixed sum, it cannot be for lost earnings. Neither of these organisations endorse compensation for inconvenience. As the DCN Committee believe that doing so would detract from the gift relationship associated with donating and that: Some donor conceived people will be disturbed by the thought that their donor may simply have donated for the money, a motivation that may be seen as disreputable. Neither the UK Registrants Panel nor the DCN Committee believe that donors should be reimbursed for non-uk expenses. Professional bodies The Royal College of Nursing Midwifery & Fertility Nurses Forum believes that direct expenses should be reimbursed to donors, excluding loss of earnings and childcare. It does not endorse an inconvenience payment: If a nominal fee is applied to donation, we then move towards a commercially coercive exercise, which in our view is inducement. The BFS polled its members on the consultation questions and reported the results in its response. It advocates for a variable expenses to be given to donors, if receipts are produced. 52% of its members wanted to see variable compensation levels whilst 33% wished to see fixed amounts. The BFS advocates a system whereby actual loss of earnings are compensated for based on individual circumstances. Those members that thought a fixed amount should be given, amounts ranged from 150 for sperm donors to 3,000 for egg donors due to the time they have to attend clinics. With regard to inconvenience, 52% responded that donors should receive compensation and 32% responded that donors should not receive compensation. Of the 52% that indicated donors should receive compensation; 8% said that it could be apportioned to average earnings whilst the remaining 92% gave figures of ranging between for sperm donors and 600-3,000 for egg donors. 80% indicated that donors should not be compensated for costs outside the UK

372 Agenda item 6 HFEA (13/07/11) 604 The BMA believes that donors should not be out of pocket and argues: It would not be fair to give a fixed amount since this would not reflect the actual costs incurred. For convenience, however, there should be a limit of 10 or 15 below which receipts are not required. The BMA takes the view that donors should be paid a fixed amount in lieu of earnings in light of the fact some donor s loses will be indirect, for example taking annual leave. The BMA does not give a specific amount, but argues that the current level of per day is low and should be increased to a more realistic level. It is clear that the total amount should not be enough to act as an inducement to donation. With regard to inconvenience, the BMA does not have a settled view. Of its members that argued in favour of compensation, arguments centred on: Egg and sperm sharing is permitted and this is a form of payment; others should therefore be able to benefit. People are inconvenienced by their act of donation and may experience pain and discomfort. Compensating for this will increase the number of people willing to donate. Adults who have capacity should be free to make up their own minds whether to donate given that there is no risk of harm to a third party. Compensation would need to be set at a reasonable limit to comply with the EU Tissues and Cells Directive. The amount offered is therefore unlikely to be so high as to encourage people to act contrary to their better judgement. There is a changing ethos within society which represents a move away from altruism towards a more commercial approach. The law is also moving closer towards recognising property claims in excised material, including gametes (see Jonathan Yearworth and others v North Bristol NHS Trust [2009] 2 All ER 986). Those who oppose compensation argue that: Compensation is fundamentally different from egg sharing. With egg sharing any risks a woman is taking are for her own benefit. Women should not be given a financial incentive to take risks. Those most likely to donate will be impoverished women or, perhaps, those facing rising university fees or significant personal debt. There is a reluctance amongst people to donate that is not connected with expenses or inconvenience offering compensation would encourage people to act contrary to their better judgement. Donation has lifelong implications with the possibility of donor conceived people contacting the donor in the future. The replacement of altruism with commerce in this area would have implications for other areas of medical practice where altruism is the norm

373 Agenda item 6 HFEA (13/07/11) 604 The BMA also advocate for non-uk expenses to be given to donors: It would be difficult to justify treating UK citizens more favourably than those from other countries, particularly those within Europe. The RCOG advocated a fixed level of compensation for donors, to encompass expenses, loss of earnings and inconvenience. The amount stated is 100 for sperm donors and 1000 for egg donors: There will be a price to anonymity, should this amount be set sufficiently high enough this will inevitably lead to improvement in the number of donations while still being within the framework of the current Parliamentary Acts governing donation. The RCOG also supports the payment of non-expenses where known donors are used for couples. The ACE specify that sperm donors should get a fixed amount per ejaculate for expenses; egg donors should get a fixed amount per cycle started. In both cases this should be not for profit, but self sustainable. In addition, both egg and sperm donors should be compensated for loss of earning and inconvenience which: Should be incorporated into one fixed payment per sample/per egg collection cycle started, which is the same for all donors ACE does not believe that non-uk expenses should be given as it: Seems unethical and would feel more open to exploitation Having third party agreements with specific clinics who ethically manage their donor programmes would be more appropriate. BICA acknowledge that: a potential way forward in addressing donor shortage and assisting prompt treatment in the UK might be to offer increased donor payment as this might encourage more people to donate. A ceiling of 500 could be an appropriate compensation limit. It argues that such a one-off payment could encourage more donors to come forward for mixed altruistic and financial reasons. BICA also suggests that compulsory implications counselling prior to donation would help ensure donor s psychological well-being is maintained and simultaneously address the donor shortage issue. It suggests, however, that many UK counsellors are not in favour of increasing compensation and concludes that: Consensus is that both sperm and egg donors are offered a variable amount of money to cover their legitimate expenses and according to their actual earnings lost. The Royal College of Physicians argues for the status quo, and would not support giving a lump sum to cover expenses, loss of earnings or inconvenience. The Association of Biomedical Andrologists argue that any payment system must be simple to implement. Whilst it recognises a range of opinions between altruism and commercialisation of donation, it comments that money is a likely driver for donation: A consensus figure of up to 50 for inconvenience with additional reasonable travel costs per donation are considered adequate compensation payment, there was also a view that a maximum figure with some local discretion might have merit: there must be clarification on expenses per donation or per course

374 Agenda item 6 HFEA (13/07/11) 604 With regard to imported sperm: There is a concern that imported donors are treated in a very different manner from local donors and this is not limited to payments there seems little in the way of being able to check the details resulting in different levels of scrutiny and potential inconsistencies between different donors depending upon their origin. It also highlights that there is some anecdotal evidence that clinics profit from the sale of donor sperm when selling to secondary centres: It is recognised that in some respects clinic charges are business decisions, however there is concern regarding the appearance of an undesirable exploitation of some donors. Clinics and donor recruitment centres Cryos International advocates compensation scheme to cover expenses, loss of earnings and inconvenience, for sperm donation. According to our experience there is (almost) no correlation between money compensation and supply of donor semen. Only if the compensation is less than approx. 20. Even if the compensation is 100 or higher, there is no significant increase in the numbers of donors or numbers of donations per donor. A variable amount according to the donors quality and volume (sperm donors) is optimal. It is waste of money to pay for low quality/volume. However, there should be a maximum. For instance 50 per donation. With regard to egg donation, it recommends 5000: Pay what it takes to meet the demand. Otherwise people will find alternatives abroad. Cryos does not advocate reimbursement of non-uk expenses. Sussex downs fertility centre recommends a fixed amount of compensation of 1000 for sperm donors and 3000 for egg donors. It also advocates for overseas donors to be paid non-uk expenses. Aberdeen Fertility Centre believes that donors should have the option of claiming expenses if they want to, but it should not be compulsory: For sperm donors, what constitutes a course of donation needs to be clearly defined; there also should be a minimum amount of donations sperm donors need to make before they qualify for compensation and there should be a cap on the amount of expenses that can be claimed. For egg donors, it advises that the calculation of expenses will be easier and that egg donors should not be expected to produce receipts for every trip. Aberdeen specify that donors should be able to claim if they have lost earnings. For sperm donors, evidence from their employer would be required: If they are losing earnings then that amount should be a set rate as earnings can be highly variable; the amount should be calculated per donation to a maximum amount.. For egg donors: If they are losing earnings then compensation should be calculated around the amount of time required to be away from the workplace and again that rate should be standard. Aberdeen does not advocate compensation for inconvenience or for the cost of travel outside the UK; with the regard to overseas donors: We considered this scenario to be most likely in familial donation, but such a choice should be on the part of the family and paid for by them

375 Agenda item 6 HFEA (13/07/11) 604 The London Women s Clinic and The London Sperm Bank think that variable expenses and loss of earnings should be given to donors. It does not, however, believe that non-patient egg donors should be recruited under any circumstances: The safety of ovarian stimulation and how the risk-to-benefit profile of non-patient egg donors is different from that of IVF patients. In addition, London Women s does not believe that inconvenience should be compensated for, not does it believe non-uk expenses should be reimbursed. The Assisted Conception Unit, Jessop Wing, Sheffield does not believe that donors should receive an incentive to donate and that actual expenses and loss of earnings should be reimbursed to donors, with no inconvenience payment. However, by means of thank the donor: we believe that it would be appropriate to be able to give a small gift to the donor as a token of appreciation at the end of the donation, e.g. flowers, cinema or shopping vouchers.. Sheffield does not believe that donors should be reimbursed for non-uk expenses. The London Women s Clinic Swansea advocates variable compensation for expenses and loss of earnings, covering the actual costs incurred. It does not believe donors should receive compensation for inconvenience, or reimbursed for non-uk expenses. The South East fertility clinic believes that donors should receive variable compensation for expenses and loss of earnings; with regard to the latter:. I believe we would need to trust the donor to state a reasonable and justified amount. The South East fertility clinic believes variable inconvenience compensation should be provided to sperm donor and egg donors should receive a fixed amount of 1000: There is a distinction here between sperm and egg donors based on the total number of visits required and hence the amount of disruption experienced. I have experienced sperm donors visiting from between 10 and 60 times and perhaps the compensation can be calculated based on frequency. I would like to see sperm donors receiving for every 3 months of (frequent) donating. SWCRM advocate a fixed amount of compensation to cover expenses, loss of earnings and time: That would make it much easier and more transparent to the donor and the clinic. It believes that non-uk expenses should not be paid to donors: We would not recruit from abroad as the travel costs etc would be too large. Religious/ Ethics organisations CARE does not believe that donors should be compensated for expenses, loss of earnings or inconvenience: the reality is that some level of financial loss is likely to be incurred with gamete donation. No compensation (nor indeed expenses) should be given to a donor if he or she could perceive this compensation as a financial incentive to donate. This is why we believe that it would be best to prohibit all expenses but, at the very least, to ensure only actual expenses incurred are reimbursed. CARE strongly opposes paying donors on the basis that it would incentivise people to donate and it effectively questions the monetary value of an egg and correspondingly, the child. For similar reasons, the payment of non-uk expenses is also opposed

376 Agenda item 6 HFEA (13/07/11) 604 Both the Christian Concern and the Christian Legal Centre and the Church of Scotland oppose any sort of compensation to donors, stressing the value of altruism: Those wishing to make such donations should be prepared to cover their own expenses as part of the donation. (Christian Concern). The Church of Scotland is opposed to gamete or embryo donation. The Church of England advocates variable compensation for expenses and loss of earnings. It is against inconvenience payments on the basis that it risks coercing people to donate and thus undermining informed consent; it is also argued it is wrong to comodify human bodily material: At the same time, altruism does not require individuals to be out of pocket for the services they render, so actual reasonable expenses ought to be offered. The Church of England states that, in principle, non-uk expenses should be permitted: actual reasonable expenses ought to be available, but care ought to be taken to ensure that there is a need for such donors and that any travel for is for the purposes of donation alone and not a means of funding travel primarily for other purposes. The Anscombe centre argues that payment for gametes increases the commodification of conception and the exploitation of donors. In addition, it believes that payment has the potential to undermine informed consent and suggests payment may have a negative effect on parents and children. Other The Scottish Council on Human Bioethics and the Council for Responsible Genetics are against any form of compensation to donors The Centre for Family Research believes that variable compensation should be paid to donors, for their expenses: it makes sense for the compensation of expenses to be based on the actual amount of expenses incurred. With regard to loss of earnings, it is argued that those who are not in paid employment should also be compensated for their loss of time: We feel it is important for this fixed amount to be set in a transparent and accountable way, and for it to be a reasonable amount. We therefore feel that comparisons with Jury service ( per full day) are quite useful. The importance of treating sperm and egg donors equally is also emphasised: While egg donors experience more (physical) inconvenience during their donation, sperm donors are required to make more lifestyle compromises and need to spend considerable time in total. An inconvenience payment for donation is not advocated, nor is the payment of non-uk expenses. With regard to the latter, it argues that, with ease of transporting gametes, there is little practical reason for donors themselves to travel. Second, it argues It would be possible for the system to be seen as one in which donors receive a free trip to the UK. and that it may exacerbate the existing tendency for women in certain (disadvantaged) parts of the world acting as reproductive providers for women in other (more advantaged) parts of the world

377 Agenda item 6 HFEA (13/07/11) 604 The South East Post Adoption Network argues that donors should be reimbursed for UK travel expenses only and that no other compensation should be paid to the donor. The Human Genetics Alert argues that out of pocket expenses and loss of earnings should be given to donors, however expenses should be capped at 300. Compensation for inconvenience should not be given to donors. It argues that there is no evidence such compensation will encourage more altruistic donors. In addition, Allowing compensation payments to donors will also price the NHS out of the market. It does not advocate the payment of non-uk expenses. PET advocates the variable compensation to donors for expenses and inconvenience, according to the actual, documented, losses. It believes inconvenience should be compensated by a fixed amount. It recommends seeking legal Counsel as to what this fixed amount should look like commensurate with recent legal precedent. It argues that non-uk expenses should be compensated for, although in practice it is unlikely for donors to chose to travel to donate. Comment on Reproductive Ethics represented its views to the HFEA via a video, Eggsploitation, which represent its concerns regarding payment to egg donors. A summary of which is provided below: The DVD was produced by the Center for Bioethics and Culture Presents arguments against egg donation by focusing on health risks to women, presenting argument through testimonials and individual case stories All cases concern women in the US, where a non-regulated commercial system operates and where substantial payments are offered Elite donors are targeted. Payment appeared to be significant motivating factor 17,405 cycles using donated eggs were carried out in the US in 2007 (CDC data) and the US IVF sector is worth $6.5 billion Potential health risks associated with egg donation were outlined Argues that there is little published peer reviewed research on egg donation and an absence of data on the long term health outcomes of egg donors All case studies concerned examples of women who suffered serious medical outcomes, which were either directly linked to donation (e.g. death following OHSS) or where they speculated that egg donation had been causal factor (e.g. link to cancer). Examples of serious health outcomes included: OHSS, cancer, stroke, artery puncture, loss of fertility and death All the donors featured in the video regretted their decision and stated that they had not been provided with information about health risks A medical researcher suggested that compensation should be limited to covering expenses only In June 2009, New York State began to offer compensation for donors to provide eggs for research (it was suggested that $60,000 has being offered)

378 Agenda item 6 HFEA (13/07/11) 604 It was suggested that medical research using donor eggs was an expansion of the market A representative from CORE featured towards the end of the video and expressed concerns that the research sector would be able to offer very high incentives to donors. She also suggested that, in the treatment context, older, richer women were buying a commodity from younger ones. It was suggested that there are no adequate protections in place for donors

379 Agenda item 6 HFEA (13/07/11) 604 Benefits in kind 4a) In principle, should donors be offered benefits in kind for their donation? Sperm donors Yes/No Egg donors Yes/No 4b) In practice, what do you think benefits in kind should include (select more than one if necessary) (select a scheme for sperm donors and a scheme for egg donors)? Sperm donors Reduced waiting time for treatment Reduced price or free fertility treatment Reduced price or free storage of sperm Other (please specify) Egg donors Reduced waiting time for treatment Reduced price or free fertility treatment Reduced price or free storage of eggs Other (please specify) 4c) In practice, do you think the value of benefits in kind should be limited and if yes, how should it be limited? Sperm donors No, the value should not be limited Yes, the value should not exceed other types of compensation (expenses, loss of earnings, routine disruption and discomfort) Yes, the value should not exceed that of an average cycle of fertility treatment, e.g., 5000 for a cycle of IVF Yes, the value should be limited (please specify an amount in ) Egg donors No, the value should not be limited Yes, the value should not exceed other types of compensation (expenses, loss of earnings, routine disruption and discomfort) Yes, the value should not exceed that of an average cycle of fertility treatment, e.g., 5000 for a cycle of IVF Yes, the value should be limited (please specify an amount in ) -349-

380 Agenda item 6 HFEA (13/07/11) 604 Patient organisations Both the IN Canada and INUK state that no benefits in kind should be given in exchange for donation The DCN emphasise the importance of counselling and argue that egg sharing is different to egg donation to the extent that: We test the practice of egg donation by looking from the viewpoint of donor conceived people who ask what sort of person was my donor and why did she donate? The answer that can be given she was also someone who was having difficulty having children and needed help, so the clinic helped her and she helped us. Donor organisations Altrui argues that sperm donors should not be permitted to receive benefits in kind, but egg donors should be able to receive reduced waiting times and other benefits: For altruistic egg donors a thank you should be permitted up to a certain value e.g for a spa day, theatre tickets or similar On a principled view, the NGDT believe that no benefits in kind should be offered in exchange for donation. On a pragmatic view, it advocates benefits for both sperm and egg donors, including: - Reduced waiting time for treatment - Reduced price or free storage of gametes or embryos - Reduced price on vasectomy (sperm donors) - Reduced price on fertility treatment - Reduced price on any medical or non-medical treatment carried out by treating clinic to either self or spouse The NGDT state that: Once the principle of trading is accepted, it shouldn t matter what the barter is However, the value of benefits should not exceed other types of compensation: 350 is a small thank you and, for most people, not appealing enough to make choices purely based on financial gain. Donor conceived and parents organisations Neither the UKDonorlink Registrants Panel nor the International Donor Offspring Alliance wish to see benefits in kind given in exchange for donation. Professional bodies ACE advocates the provision of reduced price treatment in exchange for egg and sperm donation; the value of treatment should not exceed value of free treatment cycle. It argues that, given NHS funding of IVF is limited: sharing agreements can enable access to treatment, if ethically managed and counselling is available it is an appropriate treatment option

381 Agenda item 6 HFEA (13/07/11) 604 BFS believes that benefits in kind should be available in the form or reduced waiting times, treatment and storage costs; however the value of such benefits should not exceed the value of other types of compensation: Only 46% responded to this question of which: 41% agreed that it should not exceed compensation 33% said it should not exceed cost of treatment 8% said a fixed amount 16% said no limit The RCOG advocate benefits in kind in the form of reduced waiting times, treatment and storage costs, with no monetarycap: This is already being performed with egg sharing and sperm sharing, removing this will increase the need for cross border reproductive care. All of these strategies will contribute and be effective. Royal College of Nursing Midwifery & Fertility Nurses Forum do not think that any benefits in kind should be provided to donors. The BMA believe that benefits in kind should be available to donors, including the reduced price of treatment and storage. It argues that other people will be disadvantaged by allowing reduced waiting time in return for egg donation. The BMA does not have a specific view on whether the value of benefits should be capped: although it does not oppose the offer of free IVF treatment in return for donation. BICA expresses concern that increased use of egg sharing may result in its being seen as commonplace and that its particular challenges may receive less detailed attention. It advocates mandatory counselling for both parties and suggest that Publicising egg sharing among the lesbian community, is important [lesbian couples] tend to be open with their donor conceived children about their origins, and would likely be open to egg sharing. Religious organisations None of the religious organisations which responded to our consultation believe that benefits in kind should be given to donors. The Church of Scotland state that The very concept of donation is betrayed by the introduction of any form of inducement to participate. It sites a 2003 study in Belgium which shows a drop in the number of egg sharers following the introduction of state funded fertility treatment. (study is quoted in HFEA literature on benefits in kind). The Christian Concern and the Christian Legal Centre stated that: Sperm and egg donors should not be offered benefits in kind for their donation as this would amount to a payment for gametes. CARE stated its strong objection to benefits in kind: Providing benefits in kind would effectively be an inducement to donate eggs or sperm, in the same way as direct monetary payments would be. Fertility centres Herts. and Essex Fertility Centre argues for maintaining the current benefits in kind provision and provides evidence of successful outcomes in its clinic for both donors and recipients. In addition, it argues that abolishing eggs sharing would mean limiting treatment options for donors who also require treatment and may remove the possibility of having a child completely. Further, it states that It is only when dealing with these patients that you get an idea of just how much they want to be able to -351-

382 Agenda item 6 HFEA (13/07/11) 604 help someone else and who is in the same desperate situation as themselves. It is a situation where both parties feel very comfortable with the idea that they are helping each other, and therefore desperately want success for the other couple too. The Sussex downs fertility centre, Aberdeen fertility centre and SWCRM object to benefits in kind, Aberdeen state: It is possible that this could be viewed as coercion in that patients may feel that donating their gametes may be the only way for them to afford treatment. The London Women s Clinic, The London Sperm Bank and the Assisted Conception Unit, Jessop Wing think that benefits in kind in the form of reduced waiting times, treatment and storage costs, should be offered. The South East fertility clinic think that reduced treatment should be offered, the value of which does not exceed the cost of treatment cycle. The London Women s Clinic Swansea think that the value of benefits shouldn t exceed the value of other types of compensation Other BASWA PROGAR believe that benefits in kind should not be offered to donors: Given our views against the introduction of payments commercialisation and inducement, as set out above, we do not support any payments in kind services. The Centre for Family Research, University of Cambridge think that benefits in kind in the form of reduced waiting times, treatment and storage costs, should be offered: We think benefits in kind can include any benefits that help a donor to pursue their own attempts at conception (now or in the future). It believes that the value of benefits should not exceed the value of an IVF cycle, however: We feel that it is much more important to consider the nature and purpose of the benefit, rather than simply its value or monetary worth. We think the important principles to consider here are those of parity (equivalence) and reciprocity. A woman or a man making a donation is enabling someone to have the chance to have a child; we therefore think that an appropriate benefit-in-kind is one which in turn gives the donor a chance to have their own child. Benefits-in-kind of this nature (i.e. cheaper fertility treatment or other benefit enabling the donor to pursue their own goal of having a child) are significantly different to cash remuneration in that they are non-fungible and nontransferrable. PET believes that that benefits in kind in the form of reduced waiting times and treatment and storage costs, should be offered. In addition, clinics should offer greater flexibility to donors in appointment times and free parking spaces. In an ideal scenario, it might be possible to meet demand for donor gametes without offering benefits in kind. Since this is not the case at present, and since we believe that autonomy is the most important principle relating to gamete donation, we conclude that there is scope to encourage donation by offering a variety of benefits in kind

383 Agenda item 6 HFEA (13/07/11) 604 With regard to the value of benefits in kind, PET states: We believe that the only consistent and coherent way to interpret the law as it exists is to limit the value of benefits in kind so that they do not exceed the value of other types of compensation. Human Genetics Alert believe that sperm donors should not be entitled to benefits in kind, but egg donors should be offered reduced waiting times: Egg sharers should only receive small benefits that are genuinely in kind, such as being given more rapid access to treatment. The Council for Responsible Genetics does not believe that benefits in kind should be offered. i Daniels, K. (2007) Anonymity and openness and the recruitment of gamete donors. Part I: semen donors, Human Fertility, September, 10(3), p151 ii Daniels, K., Curson, R. and Lewis, G.M. (1996) Semen donor recruitment: a study of donors in two clinics, Human Reproduction, vol.11, no.4, pp iii Yee, S. (2009) Gift without a price tag: altruism in anonymous semen donation, Human Reproduction, Volume 24, Issue 1, pp.3-13 iv Ernst, E. et al. (2007) Attitudes among sperm donors in 1992 and 2002: a Danish questionnaire survey, Acta Obstetricia et Gynecologica (2007); 86; pp v Ekerhovd, E.,and Faurskov, A. (2008) Swedish sperm donors are driven by altruism, but shortage of sperm donors leads to reproductive travelling, for Reproductive Medicine, Department of Obstetrics and Gynaecology, Sahlgrenska University Hospital, Göteborg, Sweden vi Purewal, S. and Van Den Akker, O.B.A. (2009) Systematic review of oocyte donation: investigating attitudes, motivations and experiences, Human Reproduction Update Advance Access, May 14, p. 499 vii Thorn, P., Katzorke, T. and Daniels, K. Semen donors in Germany: A study exploring motivations and attitudes (2008), Human Reproduction (2008), November, 23(11); pp viii Cook, R. and Golombok, S. (1995) A survey of semen donation: phase II the view of the Donors, Human Reproduction, vol.10, no.4, pp ix Purdie, A. (1994) Attitudes of parents of young children to sperm donation implications for donor recruitment, Human Reproduction, vol.9, no.7, p1355 x Lui, S.C. et al. (1995) A survey of semen donor attitudes, Human Reproduction, vol.10, no.1, p.234, xi Daniels, K. et al (1996) Donor insemination: the gifting and selling of semen, Social Science Medicine, Vol. 42, No. 11, p1521 xii Pedersen, B., Nielsen, A.F.,Lauritsen, J.G. (1994) Psychosocial aspects of donor insemination: Sperm donors - their motivations and attitudes to artificial insemination, Department of Obstetrics and Gynaecology, Aalborg Hospital, 9000, Aalborg, Denmark (Abstract) xiii Valle, Dr A.D. (2008) Anonymous semen donor recruitment without reimbursement in Canada, Reproductive BioMedicine Online, vol. 17, Suppl. 1, p15 xiv Lyall, H, Gould, GW and Cameron, IT (1998) Should sperm donors be paid? A survey of the attitudes of the general public Human Reproduction, vol13, Issue 3, pp

384 Agenda item 6 HFEA (13/07/11) 604 xv Purewal, S. and Van Den Akker, O.B.A. (2009) Systematic review of oocyte donation: investigating attitudes, motivations and experiences, Human Reproduction Update Advance Access, May 14, p499 xvi B. Steinbock Payment for egg donation and surrogacy The Mount Sinai journal of medicine, New York Volume: p255 xvii Daniels, K. (2007) Anonymity and openness and the recruitment of gamete donors. Part 2: Oocyte donors, Human Fertility, December,10(4), p223 xviii Brett, S. (2008) Can we improve recruitment of oocyte donors with loss of donor anonymity? A hospital-based survey, Human Fertility, June,11(2), p101 xix Pennings, G., Vayena, E. & Ahuja, K. (2012) Balancing ethical criteria for the recruitment of gamete donors. In Richards, M., Pennings, G. & Appleby, J. (eds.) Reproductive donation: policy, practice, and bioethics. Cambridge: Cambridge University Press. xx Pennings G. Mirror Donation (2007); Journal of psychosomatic obstetrics and gynaecology 2007;28(4): xxi Haimes, E. Issues of gender in gamete donation (1993); Social Science and Medicine, 1993 Jan; 36(1); pp xxii Blyth, E., Frith, L and Farrand, A (2007) UK gamete donors reflections on the removal of anonymity: implications for recruitment, Human Reproduction, vol.22, no.6, pp xxiii Hudson, N., Culley, L., Rapport, F., Johnson, M and Bharadwaj, A. (2009) Public perceptions of gamete donation: a research review pp xxiv Simons, E., Ahuja, K., Egg-sharing: an evidence based solution to donor egg shortages (2005), The Obstetrician and Gynaecologist, Vol 7; Issue 2; pp ; April 2005 xxv Craft I, Thornhill A Would 'all-inclusive' compensation attract more gamete donors to balance their loss of anonymity? Reprod Biomed Online Mar;10(3): xxvi G. Pennings Commentary on Craft and Thornhill: new ethical strategies to recruit gamete donors Reproductive Biomedicine Online Volume 10, Issue 3 (2005), p xxvii Daniels K. Recruiting gamete donors: response to Craft and Thornhill. Reprod Biomed Online Apr;10(4) p 430 xxviii Mellström, C, Johannesson, M (2010) Crowding out in blood donation: was Titmuss right? Journal of the European Economic Association Volume 6, Issue 4, xxix Frey, B. and Oberholzer-Gee, F. The Cost of Price Incentives: An Empirical Analysis of Motivation Crowding- Out. The American Economic Review Vol. 87, No. 4 (Sep., 1997), xxx K. Ahuja et al. Egg sharing and egg donation: attitudes of British egg donors and recipients (1997); Human Reproduction; Volume 12; No12; pp xxxi Pennings et al, Cross-border reproductive care in Belgium, Human reproduction, Vol. 24, No. 12, pp , 2009 xxxii E. Blyth and B. Golding, Egg sharing: a practical and ethical option in IVF? Expert Review of Obstetrics & Gynaecology, 3 (4). (2008) p. 465 xxxiii Rapport, F. (2003), Exploring the beliefs and experiences of potential egg share donors ; Journal of Advanced Nursing; Vol 43; Issue 1; pp xxxiv Working party on sperm donation services in the UK, Human Fertility, Vol. 11, No. 3, pp , 2008 xxxv Ferraretti, Semen donor recruitment in an oocyte donation programme, Human Reproduction, Vol. 21, No.10, pp , 2006 xxxvi Report on the Regulation of Reproductive Cell Donation in the European Union, (2006) European Commission, view online at: xxxvii Egg donation should involve incentive to the donor in line with current regulations, Presentation by Prof. Antonio Pellicer at the COGI Conference Berlin 2010 xxxviii Report from the Commission to the Council and European Parliament on the promotion by Member States of voluntary unpaid donation of tissue and cells (2006), Commission of the European Communities, p3, view online at: xxxix Egg donation should involve incentive to the donor in line with current regulations, Presentation by Prof. Antonio Pellicer at the COGI Conference Berlin 2010 xl 2008 guidelines for gamete and embryo donation, p40, ASRM Practice Committee, vol. 90, no 3, November

385 Agenda item 6 HFEA (13/07/11) 604 xli Financial compensation of oocyte donors, The Ethics Committee of the American Society for Reproductive Medicine, Birmingham, Alabama Fertility and Sterility (2007), vol. 88, p306 xlii Financial compensation of oocyte donors, The Ethics Committee of the American Society for Reproductive Medicine, Birmingham, Alabama Fertility and Sterility (2007), vol. 88, p306 xliii Give and take? Human bodies in medicine and research, The Nuffield Council of Bioethics Consultation, view online at: n_paper.pdf xliv Guidelines for Phase 1 Clinical Trials (2007), Association of the British Pharmaceutical Industry, view online at: xlv Human Tissue Act 2004, view online at: xlvi Code of practice 2 Donation of solid organs for transplantation Payment, advertising and commercial dealings, The Human Tissues Authority, section 42 xlvii Reimbursement of Living Donor Expenses by the NHS, Department of Health, view online at:

386 Donating sperm and eggs A Joint Response to the Human Fertilisation and Embryology Authority s Consultation on Donating Sperm and Eggs, from the Wales Gene Park and Techniquest Introduction The Wales Gene Park and Techniquest have worked together on several projects to explore young people s attitudes towards genetics and reproductive issues such as a Citizens Jury on the topic of Designer Babies, a Mock Trial on the National DNA Database (both to feed into consultations and funded by the Wellcome Trust), and an art project on The $1000 Genome (funded by the Beacon for Wales). Recently, the Wales Gene Park and Techniquest have collaborated together again to explore young people s responses to donor sperm and eggs. On 28 th March 2011, a consultation event was held at Techniquest, the science centre in Cardiff Bay, to allow young people aged to debate the issues described in Donating sperm and eggs and to compile a response to the questions posed therein by the Human Fertilisation and Embryology Authority (HFEA). The event involved presentations, voting and a discussion. This paper summarises these responses. Recruitment All secondary schools in Wales were contacted to see if their post-16 students would be interested in attending this consultation event. Attendance was free. Sixth form students from a school in the Vale of Glamorgan attended with their teachers and a total of 17 participants completed the voting forms. Programme The event began with an introduction about the organisations and people within these organisations responsible for the event, an explanation about a consultation, and the role of the HFEA. This was followed by talks about donor sperm and eggs in the media, the change in family structure, trends in donations of sperm and eggs, and the reasons why people opt for donated sperm and eggs. A factual description about in vitro fertilisation and insemination as well as the procedures involved in donating sperm and eggs was given, before a short presentation on compensation, reimbursement and benefits in kind. This was followed by a talk which presented the case for and against the current family 1

387 limit for donated sperm and egg and a presentation which explored the issues surrounding the donation of gametes to family members. Question and answer sessions and voting took place at different time points throughout these presentations. Each person filled in their own voting form, however, participants completed their forms individually or in small groups of 4-5 to discuss the questions before making their decisions. Post-voting discussions were held to explore the participants opinions. The young people were reassured that it was their own opinions that were being sought and were encouraged to write additional comments on their sheets for the HFEA. Voting Seventeen participants voted on a series of questions that endeavoured to capture their views on the consultation questions set by the HFEA. These are presented in the charts below. The results of voting from the young people (7 female, 3 male) and adults (5 female, 2 male) have been separated. DONOR COMPENSATION, REIMBURSEMENT AND BENEFITS IN KIND The number of young people for Donor compensation, reimbursement and benefits in kind was nine as there was one joint teacher/pupil completed questionnaire. Expenses In principle, do you think donors should be compensated for expenses they incur during the process of making a donation (e.g. the cost of a train fare to the clinic)? Number of votes Yes No Yes No Young people Adults Sperm donors Egg donors All participants believed that sperm and egg donors should be compensated for expenses incurred during the process of making a donation. 2

388 In practice, how do you think a donor s expenses should be compensated? A fixed amount of money A variable amount of money Other A fixed amount of money A variable amount of money Other Number of votes Young people Adults Sperm donors Egg donors Most participants believed that a variable amount of money should be given to sperm and egg donors as compensation for their expenses (sperm donors 11 votes; egg donors 11 votes). There was less support for giving donors a fixed amount of money to compensate for expenses (sperm donors 3 votes; egg donors 5 votes). No other method of compensation for expenses was suggested. Discussions with participants revealed that those who supported compensation of a variable amount of money believed that this would be a fairer method of compensation for donors as travel expenses will vary between individuals. Do you think donors should be compensated for expenses they incur outside the UK (e.g. the cost of travel to a clinic in the UK from Asia or Europe)? 9 8 Number of votes Young people Adults 1 0 Yes No Yes No Sperm donors Egg donors 3

389 All but one participant (1 out of 16) thought that donors should not be compensated for expenses incurred outside of the UK. Some participants expressed concerned that some donors could abuse this system and use it as a guise for a paid holiday. One participant recommended for the donor s sperm or egg to be transported from abroad and not the donor. Earnings In principle, do you think donors should be compensated for earnings they lose during the process of making a donation (e.g. for time off work to attend clinic appointments)? Number of votes Yes No Yes No Young people Adults Sperm donors Egg donors Unlike compensation for expenses, compensation for lost earnings was not a unanimous vote. Four participants believed that sperm and egg donors should not be compensated for loss of earnings. 4

390 In practice, how do you think a donor s loss of earnings should be compensated for? 7 Number of votes Young people Adults 0 A fixed amount of money A variable amount of money Other A fixed amount of money A variable amount of money Other Sperm donors Egg donors Not all participants answered this question as some did not believe in compensation for earnings. Most participants who answered this question believed that donor should be given a variable amount of money (11 out of 14 votes) with the other participants believing that a fixed amount of money should be given. No participant put forward another method of compensation. Participants who thought that donors should be given a variable amount of money as compensation believed this would be a fairer system as the loss of earnings will vary between donors. There was also concern from participants that a fixed amount may benefit some donors financially and dissuade higher earners. 5

391 Inconvenience In principle, do you think donors should be compensated for the disruption and discomfort associated with the process of making a donation (e.g. the inconvenience and side effects of hormone injections for egg donors and the inconvenience of numerous clinic visits for sperm donors)? 9 8 Number of votes Young people Adults 0 Yes No Yes No Sperm donors Egg donors Most participants believed that sperm donors should be compensated for disruption and discomfort (9 out of 16 votes), but there was more support for compensation for egg donors (12 out of 16 votes). In practice, how do you think a donor should be compensated for the routine disruption and discomfort associated with the process of making a donation? Number of votes A fixed amount of money that is the same for all sperm donors A variable amount of money according to the donor s actual expenses Other A fixed amount of money that is the same for all egg donors A variable amount of money according to the donor s actual expenses Other Young people Adults Sperm donors Egg donors 6

392 Not all participants answered this question as some did not believe in compensation for disruption and discomfort. The number of votes between compensating sperm donors for disruption and discomfort with a fixed amount of money which is the same for all sperm donors (5 out of 11 votes) and compensating with a variable amount of money according to the donor s actual expenses (6 out of 11 votes) was divided fairly equally. However, most adults supported a fixed amount of money (3 out of 4 votes) whereas most of the young people supported a variable amount of money (5 out of 7 votes). Most participants believed egg donors should be given a variable amount of money according to the donor s actual expenses (8 out of 13 votes), however, some believed a fixed amount of money should be given (5 out of 13 votes). No participant suggested an alternative method for compensation. Reasons given by participants for a variable amount of money as compensation included that it would be fairer because the level of discomfort experienced by donors would vary between individuals. Participants also suggested that it may encourage donors to come forward for donations and it ensured that donor is donating for the right reasons. One participant suggested that a fixed amount of money (e.g. 40) should be given as a gesture of appreciation. Benefits in kind In principle, should donors be offered benefits in kind for their donation? 6 5 Number of votes Young people Adults 0 Yes No Yes No Sperm donors Egg donors Most participants believed that sperm and egg donors should not be offered benefits in kind for their donation (9 out of 16 votes for both sperm and egg donors). Most of the adult votes (5 out of 7 votes) did not support the benefit in kind scheme adults whereas the young people s votes was balanced equally between Yes and No. 7

393 4 Number of votes Young people Adults 0 Reduced waiting time for treatment Reduced price or free fertility treatment Reduced price or free storage of sperm Other 4 Number of votes Young people Adults 0 Reduced waiting time for treatment Reduced price or free fertility treatment Reduced price or free storage of eggs Other Not all participants answered this question and participants could select more than one option. Reduced price or free fertility treatment was the most popular option (5 votes for sperm donors; 4 votes for egg donors) followed very closely by Reduced waiting time for treatment (4 votes for sperm donors; 3 votes for egg donors). Reduced price or free storage of sperm/eggs was the least popular option with two votes for sperm donors and one vote for egg donors. No participant put forward an alternative approach for benefits in kind. 8

394 Equality impact Do you think any of the compensation, reimbursement and benefit in kind scheme options would have a disproportionate effect on any groups of people on the basis of their age, disability, ethnicity or race, religion, gender or sexual orientation? 5 Number of votes Yes, some groups will be disproportionately affected No I have no view Young people Adults Participants were asked to consider whether their policy choices would affect any groups of people. The most popular answer was Yes, some groups will be disproportionately affected (5 votes) followed closely by No (4 votes) and I have no views (4 notes). One participant who voted Yes believed that compensation, reimbursement and benefit in kind scheme would impact on ethnic groups because there is a shortage of eggs and donors from ethnic groups with the reimbursement/compensation/benefit in kind practices currently in use. Participants who voted No believed that the benefit in kind scheme could affect some groups disproportionately, but that the reimbursement and compensation scheme, if the compensation was given as a variable amount, may encourage groups who are not donating at present to donate. Participants also commented that the shortage of donors from certain groups is likely to be caused by cultural attitudes, not from compensation. FAMILY LIMIT FOR DONATED SPERM AND EGGS The number of young people for Family limit for donated sperm and eggs was nine as there was one joint teacher/pupil completed questionnaire. 9

395 Family limit What do you think should be the maximum number of families that can be created using one donor s sperm or eggs? 6 5 Number of votes Young people Adults 0 A limit lower than 10 families A limit of 10 families A limit of more than 10 families No family limit Most participants believed that the limit should be lower than 10 families (9 out of 16 votes). Few of these participants suggested a value for the limit, but those who did recommended a limit of 1 family. There was also support for a limit of 10 families (6 out of 16 votes) and these participants considered this limit acceptable because less than 1% of donors reach the 10 family limit. There was one vote for a limit of more than 10 families. This participant believed there was a need for a higher family limit because they believed there will be an increase in the number of cases of infertility and therefore the limit of 10 families needed to be raised. The family limit that this participant suggested was that it should be the same as the limit set in the Netherlands, which is 25 families. 10

396 Equality impact Do you think any of the family limit options would have a disproportionate effect on any groups of people on the basis of their age, disability, ethnicity or race, religion, gender or sexual orientation? Number of votes Yes, some groups will be disproportionately affected No I have no view Young people Adults The most popular options were No (6 votes) and I have no view (6 votes). Fifty per cent of the No votes were from the young people compared with 100% of the I have no view votes. Some participants who voted No reasoned that this limit would affect all groups and that if this area was regulated properly, it would not affect a group disproportionately. There were two votes for Yes, some groups will be disproportionately affected with one participant stating that interracial IVF is not usually performed or wanted. FAMILY DONATION The number of students for Family donation was nine as there was one joint teacher/pupil completed questionnaire. One young person did not answer the first question in this section and one adult did not answer question three. 11

397 Family donation Which of the following approaches do you think we should take towards mixing sperm and eggs between family members? Number of votes No further regulatory control Prohibit the mixing of gametes between close relatives who are either genetically related or unrelated Prohibit the mixing the mixing of gametes between close relatives who are genetically related Young people Adults Most participants did not believe that gametes between genetically related close relatives should be mixed (9 out of 17 votes). Some participants believed that no further regulatory control was required (5 out of 17 votes) and there was only one vote supporting the prohibition of mixing of gametes between close relatives either genetically related or unrelated. Participants who did not support the mixing of gametes between genetically related close relatives said that it could cause genetic disorders and disabilities in the child, and also problems within family relationships. One participant felt that their response was an instinctive response and needed more in-depth knowledge of the subject area in order to make a rational decision. Which of the following approaches do you think we should take towards donation between family members? 7 Number of votes Young people Adults 0 No further regulatory control Issue guidance to clinics on handling donation between family members Invite the counselling profession to produce guidance for clinics on handling donation between family members Require clinics to have a strategy in place to deal with cases of donation between family members 12

398 Participants could select more than one option. There was most support from participants for clinics to have a strategy in place to manage cases of donation between family members (11 out of 29 votes). There was also some support to invite the counselling professions to produce guidance for clinics on handling donation between family members (8 out of 29 votes) and for guidance to be issued to clinics on handling donation between family members (7 out of 29 votes). There were two votes for No further regulatory control. Participants said that guidance was needed because it would help people cope emotionally with the relationship issues and risks which surround donation. In addition, participants believed that guidelines should be issued by a separate body, the Government or by those with professional knowledge of the area and not clinics because clinics may have a vested interest for couples to have treatment. Participants thought that this issue was a complex subject requiring much careful consideration and needed to be closely regulated. Equality impact Do you think any of the family limit options would have a disproportionate effect on any groups of people on the basis of their age, disability, ethnicity or race, religion, gender or sexual orientation? Number of votes Yes, some groups will be disproportionately affected No I have no view Young people Adults Of the participants who answered this question, there was most support for No (9 out of 15 votes) and participants commented that the same rules would apply to all groups and that no discrimination should occur. One participant who voted I have no view said that they needed more information to give their opinion. SUMMARY The advantage of an exercise such as this, is that it provides participants with an opportunity to discuss and debate the issues before reaching a decision. It allows people 13

399 to reflect on the issues while also considering what others might also consider acceptable public policy. The strongest viewpoint to emerge was that donors should be compensated for expenses, although this did not extend to international travel. In addition, there was strong support for reimbursement of earnings and compensation for inconvenience with most participants suggesting that variable amount of money would be fairer system and would not dissuade higher earners. There was very little support for a family limit of more than 10 families with most participants opting for a 10 family limit or lower, with some stating that the limit should be set at one family. The reasons given by the participants for their decisions showed that they had given careful consideration to the many issues in this area such as the shortage of donors and the psychological effects on the relationship between donor-conceived children and their siblings and donor parent. With regards to gamete donations to genetically related close relatives, most participants decided that this was unacceptable for both psychological and physical health reasons. There was also much support for this area to be regulated and guidance offered to patients because of the emotional and physical risks, but that these guidelines should not be issued by parties who may a vested interest for couples to have treatment. ACKNOWLEDGEMENTS The Wales Gene Park and Techniquest would like to thank everyone at the Wales Gene Park and Techniquest who helped to make this a successful event with particular thanks to the students and teachers of Stanwell School. 08 April

400 Approved by members... Signed by the Chair... Minutes of the Authority meeting 14 September 2011 confidential meeting, held at Finsbury Tower, Bunhill Row, London EC1Y 8HF Members There were 15 members in attendance, 10 lay members and 5 professional members. Four members were unable to attend and sent their apologies. Members present: Observers Lisa Jardine (Chair) Alan Thornhill Andy Greenfield Anna Carragher David Archard Emily Jackson Sally Cheshire Gemma Hobcraft Ermal Kirby Jane Dibblin Neva Haites Rebekah Dundas Susan Price Ruth Fasht Lesley Regan Apologies: Hossam Abdalla Debbie Barber Mair Crouch Lillian Neville Ted Webb, Department of Health Steve Pugh, Department of Health Staff in attendance Alan Doran Peter Thompson Mark Bennett Nick Jones Emer O Toole Danielle Hamm Hannah Derby Chris O Toole Juliet Tizzard Rachel Fowler Paula Robinson Joanne Anton Nick Spears Anna Rajakumar Diane Malcolm 1. Apologies, Welcome and Declaration of Interests 1.1. The Chair opened the meeting, welcoming members to the first Authority meeting in Finsbury Tower, where the HFEA was now based Apologies were received from: Hossam Abdalla Debbie Barber Mair Crouch; and Lillian Neville. Page 1 of 12

401 Human Fertilisation and Embryology Authority Minutes of the Authority meeting held on 14 September Declarations of interest were requested. Alan Thornhill declared an interest on the basis that he worked in a licensed centre. 2. Minutes of Authority meeting on 13 July Members agreed the minutes subject to two changes: at paragraph 5.6 members asked that country be changed to UK, and at paragraph 6.3 members asked that the names of two members be removed and substituted with the description two clinical members. 3. Matters arising from the minutes of the previous meeting 3.1. There were no matters arising from the minutes of the previous meeting. 4. Chair s Report 4.1. The Chair began her report by congratulating the following members on their re-appointment to the Authority: Lesley Regan Debbie Barber Mair Crouch Jane Dibblin Gemma Hobcraft; and Lillian Neville The Chair informed members that the Appointments Commission would be announcing these reappointments later in the week. She welcomed the reappointments, on the basis that stability of membership would be an important advantage to the Authority over the coming months, ensuring an experienced group of members to guide the organisation The Chair informed members that she had written to Public Health Minister Anne Milton about a number of issues arising with internet based operations offering services which might be licensable activities under the Human Fertilisation and Embryology Act. The Authority had sought clarification of the meaning and scope of the term procurement. According to the clarification received, procurement of gametes meant any process by which gametes were made available. A number of internet sites were thereby potentially brought within the Authority s licensing regime. A Chair s letter had therefore been sent to all licensed centres reminding them of their obligations should they enter an agreement with any such website. Furthermore, the Chief Executive had written to a number of the internet sites to let them know that if they procured gametes then they must contact the Authority, since they would require a licence in order to continue. Where websites were just putting people into contact with each other, however, they did not require an HFEA licence The Chair informed the Authority that she had attended two interesting and informative HFEA meetings last week: a meeting of the Multiple Births Page 2 of 12

402 Human Fertilisation and Embryology Authority Minutes of the Authority meeting held on 14 September 2011 Stakeholder Group (which she had chaired), and a meeting of the Scientific and Clinical Advances Advisory Committee (SCAAC) Finally, the Chair advised the Authority about a number of recent and forthcoming meetings, including a meeting with Lord Winston which took place on 5 September, a meeting scheduled for 19 September with Valerie Vaz MP, who was sitting on the Public Bodies Bill Committee, and a meeting (in the company of the Chief Executive) with Jo Williams and Cynthia Bower of the CQC, on 17 October. 5. Chief Executive and Directors Reports 5.1. Building on the Chair s remarks welcoming members to the HFEA s new premises, the Chief Executive reported that the move had gone very well, with an exemplary effort made by HFEA staff, particularly by the facilities and IT teams. Staff had settled in well and found CQC colleagues extremely welcoming and helpful. Relocation with the CQC would sustain the integrity of the HFEA as a high performing regulator by reducing the costs of running and housing the organisation, thereby allowing resources to be focused on the organisation s performance of its core functions. Over the next few months the organisation would continue to reduce in size but without compromising its ability to regulate the sector The Chief Executive informed members that following the review of scientific methods to avoid mitochondrial disease, completed earlier in the year, the Department of Health had written to the Chair to ask the Authority to take on the next stage of the work: a constructive public dialogue. It had been proposed that the Authority work collaboratively with ScienceWise on this project. The Chief Executive asked members to confirm that they were content for the Authority to take on this work. Members agreed that they were The Chief Executive reported that there had been some further coverage about the charity To Hatch which had been granted a licence by the Charity Commission to run a lottery where fertility treatment would be offered as a prize. The lottery appeared to have been put on hold for the present; meanwhile the Authority put out a strong statement on this and the Authority s view on the matter had also been set out in correspondence with Ian Lucas, Member of Parliament for Wrexham, following a letter he received from concerned constituents A few weeks ago an article had been published in the Daily Mail about a rise in the number of incidents reported to the HFEA. This followed a request for these figures made under the Freedom of Information Act by a lawyer. The story was later repeated by the Guardian. The Authority had issued a statement in response to the original article. This statement had been reproduced by the Daily Mail in part and by the Guardian in full. The statement said that the increase in the number of incidents was due to a greater willingness by centres to report incidents; however, the number of the most serious (category A) incidents had reduced over the previous year. Page 3 of 12

403 Human Fertilisation and Embryology Authority Minutes of the Authority meeting held on 14 September The Chief Executive reviewed other media coverage over the previous few weeks, including a BBC television programme broadcast a few days earlier entitled Donor Mum the children I ve never met. The programme followed the process through which an egg donor made contact with the children born as a result of her donation. In addition, there was coverage of the issue of egg donation on the BBC programme The One Show, which ran a story highlighting the shortage of egg donors The Chief Executive informed members that, possibly related to the coverage of gamete donation in the media, there had been a spike in the number of requests for information to the HFEA register team. The organisation was currently exploring whether requests might be expected to continue at this new rate or whether this situation was temporary. One important factor was that a number of donor conceived individuals were now reaching the age at which they could request information from the HFEA. If the new levels were attributable to this change then they might be expected to continue, in which case adjustments might have to be made to ensure sufficient staff were trained to handle requests of this nature Ted Webb from the Department of Health (DH) was invited to comment on media reports that funding was running out for the organisation UK DonorLink (a voluntary contact register for the donor-conceived) which would accordingly be halting registration of new members. Mr Webb informed the Authority that UK DonorLink had been given a grant by DH for the rest of the current year, and that options for longer-term funding of the organisation were being explored Mark Bennett, Director of Finance and Facilities, updated members about the reduction in HFEA treatment fees. He reminded members that this reduction had been made possible because the Authority had committed to cut its costs by 1.5M. Now that approval had been granted from DH and HM Treasury, the Chair would formally notify clinics that from 1 October 2011 treatment fees would be 75 for IVF and for donor insemination. This represented a reduction of about 28%, with Grant-in-aid being reduced by a similar percentage. For some clinics, this would be a substantial financial saving. He emphasised that the HFEA would expect the reduction in treatment fees to be passed on to patients Mark Bennett noted that members had previously informally agreed to Jerry Page being a full member of the Audit and Governance Committee. Having considered the proposal circulated via , members were asked to formally agree Jerry Page a suitable person, which would enable the Chair to appoint him. This they did Finally, Mark Bennett informed members about some data protection issues which had arisen following the recent change of premises. A full report of these issues was still being sought from the organisation contracted for the move Nick Jones, Director of Compliance, informed members that the Authority s new internal database: Epicentre had been launched the previous week and represented significantly improved functionality in relation to previous data systems. Members were encouraged to view the new database via Page 4 of 12

404 Human Fertilisation and Embryology Authority Minutes of the Authority meeting held on 14 September 2011 their usual secure access to the HFEA intranet but asked to be mindful that this information was not in the public domain Peter Thompson, Director of Strategy and Information, informed members that next week a workshop would be held on the second part of the Donation Review The routine legal update paper was tabled for members. The paper was subject to legal privilege. 6. Internal Governance Review 6.1. This item was presented by Peter Thompson. He was accompanied by Tim Coles of Field Fisher Waterhouse solicitors, who had provided external legal advice throughout the production of the report. Mr Coles had been asked to attend the discussion of the report by the Authority in case questions were raised which required a legal opinion Peter Thompson opened by explaining that he intended to draw out the report s main findings, taken broadly in the order they were presented in the report. To begin, he would discuss the methodology he had used, then would offer observations about past events, following which he would draw conclusions about present arrangements and offer five recommendations for future improvement Commenting on terms of reference for the review, Peter Thompson emphasised that he had been asked to review the adequacy of the Authority s revised governance arrangements. This he had taken as a request to consider whether the reforms implemented over the past three years had created governance arrangements which were fit for purpose measured against good practice in 2011, not whether they were better than those that existed in This was not, however, to lose sight of the fact that the current arrangements were the product of a programme of change which was in turn, prompted, in part, by the events covered in the report. Thus, one aspect of the report was to look back and see what lessons could be learnt from this period, but fundamentally it was a forward-looking document Peter Thompson described the research methodology employed and the process followed in respect of the drafting and the publication of the report He explained that he did not consider that it would be appropriate to give members a blow by blow account of the events relating to the licensing of centres 0157 and 0206, which formed the substance of chapter two of the report. Instead, he next related the observations made in the report on issues of governance under the headings: Licensing, Enforcement, Panorama and Crisis Management Peter Thompson then moved on to a description of the changes to the Authority s governance arrangements which had been made in relation to licensing and enforcement, pointing out that current arrangements were markedly different from those formerly in place. Members were given examples from the report in support of this conclusion; including the new Page 5 of 12

405 Human Fertilisation and Embryology Authority Minutes of the Authority meeting held on 14 September 2011 separation between the inspection function and the licensing function, improved transparency, improved equality of arms, and clearer processes and procedural rules Members were further informed that the HFEA was not especially behind the curve in before these changes were implemented. Indeed one of the reasons for the Hampton and Macrory reviews of regulation for the Government in 2005 and 2006 had been an appreciation that the regulatory field had developed in a disjointed fashion, and there had not been a good set of modern standards in common use across the sector Peter Thompson expressed his confidence that because of the changes adopted, governance arrangements at the HFEA stood up very well when judged against modern regulatory standards. However, he appreciated that there was still some more work to do, and to that end he was proposing five recommendations for further action, based on the report s conclusions. These were: 1. That the Authority should consider further bespoke legal training focussing on the limitations of the powers to revoke, vary or suspend a licence in relation to non-compliance with the amended Act. 2. That the Authority should establish some criteria on the issues to take into account when deciding to seek a warrant. 3. That the Authority should try to establish an MOU (Memorandum of Understanding) with ACPO (Association of Chief Police Officers) setting out the respective roles of the Authority and the Police in exercising the criminal sanctions set out in the amended Act. 4. That the Authority should agree that a new SOP (standard operating procedure) for media handling should be drawn up, paying particular attention to how the HFEA deals with ongoing regulatory actions. 5. That the Authority should revise its guidance on information access, to address the interplay between formal statutory access regimes and media enquiries Members warmly commended the report, thanking Peter Thompson for its scope and readability Members asked Peter Thompson to reflect on the changes designed to ensure consistency of decision-making and the extent to which consistency of licence committee membership was fundamental to these. Although there was now one Licence Committee, fluctuation in members attendance of Committee meetings can occasionally occur due to availability. To what extent might these fluctuations compromise consistency of decision-making? Peter Thompson assured members that the reduction to a single Licence Committee had been only one of several measures undertaken to improve consistency of decision-making, and was by no means the most important of those. Indeed, uppermost had been the suite of decision making tools and procedures now in place. In light of these, consistent Licence Committee membership was now less important than it had been in In addition, he emphasised that it was an unusual feature of the centre 0157 and 0206 licensing decisions that these spanned several different Page 6 of 12

406 Human Fertilisation and Embryology Authority Minutes of the Authority meeting held on 14 September 2011 Licence Committee meetings; differences in membership impacted much more critically on consistency because of this factor. He explained that the important thing is for an organisation to be self-conscious about its decision-making models and the advantages and disadvantages of each model. One important advantage of the new governance arrangements was that they are sufficiently robust to allow flexibility on this issue Members discussed the separation of functions which had been set up to improve governance of the organisation. A few members expressed the view that these separations had some disadvantages associated with them. In particular, it was now more difficult for Authority members to acquire their former familiarity with what happened in the organisation on a day to day basis Peter Thompson replied that he understood the issue being raised, and that this had also been discussed at executive level. He suggested that now the organisation had reached a point where it could be confident that its current governance arrangements met modern regulatory standards, the Authority was in a strong position to consider whether and how members could become more closely involved in the work of the executive This suggestion was taken up by the Chief Executive, who suggested that it might be constructive to explore how members might further contribute their views about how the organisation performed its core functions. The executive took away as an action the consideration of how members might have further input outside of formal Authority meetings Members considered the five recommendations in the report. These were all accepted by members In discussing the second recommendation (that the Authority should establish criteria for obtaining a warrant), members suggested that advice might be sought on this issue, including advice from other regulators who had already established such criteria, and external legal advice, possibly from a criminal lawyer In discussing recommendation three (that the Authority should attempt to establish an MOU with ACPO), members agreed that here, also, advice should be sought from other organisations who might already have explored this idea. Furthermore, members agreed that if ACPO were not interested in establishing an MOU with the Authority, it would still be worthwhile to establish what the Authority s responsibilities would be in any interactions with the police Peter Thompson put a further recommendation to members, concerning the material used in drafting the report. The report contained extensive footnotes and stood for itself. However, following today s publication of the report, the Authority might expect to receive requests under the Freedom of Information Act, asking for more of the material upon which the report was based. Generally, it was better to pro-actively publish the material concerned, rather than react to the expected FOI requests individually. Accordingly, members were asked to agree the following statement. Page 7 of 12

407 Human Fertilisation and Embryology Authority Minutes of the Authority meeting held on 14 September In accordance with the spirit of the review and subject to its statutory obligations, the HFEA intends to publish the material referenced in the review as fully as possible. Following publication of the review at the September Authority meeting, the HFEA will proceed to determine the scheme and timetable by which it will publish these documents and will confirm this in the near future Some members expressed a concern that placing this material in the public domain could lead to attempts to reinterpret the events of and that those concerned had rights to privacy to be respected. Peter Thompson replied that he accepted this but it was nonetheless clear that these considerations would not be accepted under the FOI Act as reasons not to comply with requests for information. Given this, he explained, time and effort might be minimised by taking a proactive approach to this issue Members agreed the statement in principle. However the executive was asked to be mindful of the requirement to have explicit consent from those individuals affected, where relevant, and to have regard to the costs involved in preparing the material for publication. Decision The Authority agreed to adopt the five recommendations presented to them in the report, and the further recommendation relating to the publication of the evidence referenced in the report, subject to the minor caveats and stipulations above. 7. Multiple Births 7.1. Juliet Tizzard, Head of Policy and Communications, introduced this preliminary discussion about the Authority s approach to setting the year four target for multiple births. She reminded members that the year three target of 15% had been in place for 6 months, and she presented a number of slides setting out how the sector had responded Evidence was presented that elective single embryo transfers, as a proportion of all embryo transfers, had increased from under 5% in January 2008 to nearly 25% in May Over the same timeframe, multiple pregnancy rates had decreased whereas overall pregnancy rates had been maintained. The first target, covering January 2009 to March 2010, was for a multiple birth rate of 24%. Over that period the sector achieved a rate of 21.5%. The second target, covering April 2010 to March 2011 was 20%, and the data available to date indicated that clinics had achieved an actual rate of 17-18%, again coming in under target Juliet Tizzard updated members about recent developments, including the revision and re-launching of the consensus statement, which now had the support of the Royal College of Paediatrics and Child Health. She drew members attention to the fact that the reduction in treatment fees being introduced in October would be followed next April by a zero fee for frozen embryo transfer following single embryo transfer. Page 8 of 12

408 Human Fertilisation and Embryology Authority Minutes of the Authority meeting held on 14 September Members were informed that the sector had responded well to the targets set, whilst maintaining pregnancy rates. The challenge would be to ensure that the momentum sustained thus far was continued through to the successful imposition of a 10% target Juliet Tizzard described a number of key issues related to setting the fourth target, in the context of the points raised at the previous week s meeting of the Multiple Births Stakeholder Group. One of these points was that it had always been known that the 15% rate would prove more stretching for clinics than the previous targets. Only two clinics were likely to exceed the current target; however, it seemed possible that more clinics would not meet the 15% limit. As the target rate came down, clinics would need to modify their strategies, including reviewing their patient selection criteria. This took time to do and for the effects to be monitored. However, it was important not to lose the momentum gained thus far Juliet Tizzard suggested a number of options for members to consider when the issue was brought back to them in December or January for a decision. These were: introducing a fourth target in April 2012 extending the third target period for a further 6 to 12 months, or extending the third target whilst at the same time setting the fourth target so that clinics could begin to prepare themselves She suggested that the executive analyse the year two final results and the first part of the year three results and bring the analysis back in December or January to inform the Authority s decision about the next target Members noted the information presented to them and the suggested timings for their decision. Members indicated that their instinct was to take a steady approach to the implementation of the next target and to understand how the sector had responded so far and what challenges it faced before making a decision about when to set the fourth year target. 8. Ten Family Limit 8.1. The Chief Executive introduced this paper followed by a presentation from Rachel Fowler about how breaches of the ten family limit could be difficult to spot using electronic register data only and required manual checking, for example to check whether patients had been registered twice under different names Nick Jones informed members that a recent examination of register data using the methods described had brought to light five cases since 2006 (when the recommendations of the Seed Review came into force) where a donor had been used for the creation of more than ten families. The Authority had a clearer handle on this issue than it had in the past, and, depending on the steer from members, it might be appropriate to take a closer interest in this issue in future, and to signal to centres the intention to do so. Furthermore, while the HFEA would expect centres to retain ownership of their compliance with the 10 family limit, there might be more Page 9 of 12

409 Human Fertilisation and Embryology Authority Minutes of the Authority meeting held on 14 September 2011 the HFEA could do to help centres to comply by means of monitoring use of donor sperm For a sense of scale, members asked how many sperm donors had been used since the Seed Review. They were told it was in the region of 1,000 to 1,200. Members concluded that this was a relatively small problem and that it should be treated proportionately. On the other hand, members were mindful that when a donor consented to his sperm being used in the creation of ten families then this was what he would believe happen, and this belief was shared by the donor conceived and by their families. Breaches of the ten family limit constituted a significant breach of trust, therefore, and could impact adversely on the perception of the sector even when they happened in small numbers Members noted the recommendations being made by the executive. They agreed to implement the first three recommendations immediately and that the other recommendations should be brought back to a future Authority meeting for a longer discussion. Decisions 8.5. Members agreed to: issue a Chief Executive s letter signalling the Authority s intent on this issue and reminding centres of their responsibilities with regard to checking information available to them before using donated sperm undertake a management review of the instances where new families were created beyond the limit after April 2006 and which had not been reported to the HFEA under its adverse incident reporting protocol and to determine what, if any, further action would be necessary with each reported to the ELP or LC as appropriate; and where the Authority knew the 10 family limit had been breached, the recruiting centre should be instructed to ensure those donors were not used again save, of course, for siblings and embryos in storage. 9. Regulation of Research 9.1. Dr Chris O'Toole, the Head of Research Regulation and Clinical Governance, introduced this item. Chris O'Toole introduced a number of recommendations designed to streamline the licensing of research regulation. Members were asked to agree the following recommendations: that a new compliance cycle be introduced for research licences, wherein, in the absence of a change to licensed premises, or other indications that an inspection should be undertaken, research centres applying to renew their licences would not be inspected prior to the renewal of the licence but, provided the licence was renewed, would be inspected the following year Page 10 of 12

410 Human Fertilisation and Embryology Authority Minutes of the Authority meeting held on 14 September 2011 that interim inspection visits relating to research centres be refocused to centre on a comprehensive audit of a proportion of records with a view to ensuring that embryos were only used in accordance with regulatory requirements that applications to vary a research licence to change the research purposes under which the project is licensed, be sent out to peer review prior to being considered by the Research Licence Committee that the Executive Licensing Panel should begin to consider applications to renew research licences, in accordance with current standing orders that the report Research in the UK about research using embryos be published, including the information contained in Appendix 2; and that information on the number of embryos used in research each year be published on an annual basis. Decision 9.2. Members welcomed and agreed the above proposals. However they asked that consideration by ELP of applications to renew research licences took place with oversight by the Research Licence Committee Two members had minor amendments to suggest on the report, and agreed to communicate these to Chris O Toole after the meeting. 10. Professional Engagement Strategy The Authority noted that this item was for information and that members were being asked to note the professional engagement terms of reference. Because of lack of time, members agreed that they would not discuss the item at the meeting, but any comments they had to make would be circulated by Update from Committee Chairs Ruth Fasht updated the Authority about work recently undertaken by the Compliance Committee, particularly in relation to the relicensing project and changes to Direction Sue Price reported on the recent SCAAC meeting, which had considered different ways of storing sperm; alternative ways of deriving pluripotent stem cells (other than from embryos), and the complicated ways in which a research project could be subject to licensing both under the Human Tissue Act and the Human Fertilisation and Embryology Act. 12. A.O.B The Chair reported that the first licence issued by the Authority was issued on 1 August She invited members to partake of a celebratory cake after the meeting. Page 11 of 12

411 Human Fertilisation and Embryology Authority Minutes of the Authority meeting held on 14 September Date of next meeting The next meeting would be on Wednesday 19 October, at Inmarsat (by Old Street station) in London. Page 12 of 12

412 Authority Paper Paper Title Directorates Report Agenda Item 6 Paper Number [HFEA (19/10/2011) 614] Meeting Date 19 October 2011 Author For information or decision? Paula Robinson Information 1. Introduction 1.1. Directorates Report Summary The attached paper summarises the main performance indicators, with commentary from the most recent CMG review of the document (on this occasion, this was done at the September meeting, and is therefore based on August data) Improvements have been made to the presentation and format, following requests by CMG and Authority. The full graph showing treatment cycles is now included, instead of the smaller, less detailed version trialled earlier. In addition the KPI target level is now shown on the summary trend lines, together with a column showing whether the aim is to exceed, match or stay beneath that target figure. This helps to add context to the visual information, making it easier to understand what the data shows about current performance Recommendation 1.4. The Authority is invited to note the summarised Directorates Report. Paula Robinson Head of Business Planning October 2011

413 HFEA Performance Scorecard Key Performance and Volume Indicators: August Performance Data Indicator Performance RAG Trend since April 1 Aim 2 Notes Average number of working days taken for the whole licensing process, from the day of inspection to the decision being communicated to the centre. Decisions made: - By ELP - By Licence Committees Percentage of PGD applications processed within 4 months (88 working days) working days % (3/3) - 16 ELP Licence Committee % 83% % 100% % 90% Maintain 60wd or less No KPI tracked for workload monitoring purposes Maintain 90% or more KPI: Less than or equal to 60 working days. (New, stretching, target we need to track this for a few months to see if this is the right target). Volume indicator (no KPI target). ELP handling majority of decisions, as intended. KPI: 90% processed (i.e. considered by LC/ELP) within 4 months (88 working days) of receipt of completed application. Staff sickness absence rate (%) per month. 2.2% 2.8% 1.3% 1.3% 1.2% 3.0% 2.2% Maintain 3% or less KPI: Absence rate of 3%. Public sector sickness absence rate average is 8 days lost per person per year (3.5%). 1 Blue dashed line in all graphs = KPI target level. This line may be invisible when performance and target are identical (e.g. 100%). 2 In what direction are we trying to drive performance on this indicator? Are we aiming to exceed, equal, or stay beneath this particular KPI target? 2

414 Indicator Performance RAG Trend since April 1 Aim 2 Notes Percentage of Opening the 100% Maintain at KPI: 100% of complete 100% 100% 100% 100% 100% 100% Register requests responded to (18/18) 100% OTR requests to be within 20 working days responded to within 20 working days (excluding counselling time) Percentage of requests for contributions to Parliamentary Questions answered within Department of Health deadlines 100% (1/1) 100% 100% 100% 100% 100% 100% Maintain at 100% KPI: 100% of PQs to be answered within deadlines set by the Department of Health Number of visits to the HFEA website 43,235 (cw 37,010 in same period of previous year) This year Last year No KPI tracked for general monitoring purposes Volume indicator showing general website traffic compared with same period in previous year. Cash & Bank Balance Percentage of invoices paid within 30 calendar days 2,803k 100% (97) 2,691,000 2,453,000 2,297,000 2,520,000 2,803, % 100% 98% 99% 100% 750,000 Decrease to 750k or less 95% Maintain at 95% or more KPI: Balance not to exceed DH limit of 750k. Should stabilise once fee reduction takes effect. Plans under consideration to spend balance. KPI: 95% of invoices to be paid within 30 calendar days Debts collected within 60 calendar days 86% 95% 89% Maintain at 85% or more KPI: 85% of debts to be collected within 60 calendar days from billing 81% 81% 85% 86% 3

415 IVF Treatment Cycles Report & Billed 4

416 Summary Table: Scorecard area KPIs / RAG Status Red Indicators and Management Comments on Controls General Note: Grey indicators below are volume, rather than performance, indicators. Over time, as we establish baseline performance for new indicators, it will be possible to set appropriate performance targets for some of these. Others will always remain as volume indicators, providing ongoing operational context and management information about capacity and pinch-points. Regulatory Operational Performance 9 1 R A No red indicators. The one amber indicator is associated with the signing off of Licence Committee minutes, unavoidably delayed by annual leave this month. 10 G Neutral (Volume indicators) Capacity R No red indicators. 1 1 A G 1 Neutral (Volume indicators) Corporate Governance 7 2 R 3 5 A G 3 projects were flagged as red risk in August. These are: - Epicentre (delayed). [Subsequently lowered to amber upon launch on 1 September.] - Online Submissions (dependent on the completion of Epicentre). Expected to change to amber soon after Epicentre launch. - Licensed Activities project. Risk will reduce around November. Neutral (Volume indicators) 5

417 Scorecard area KPIs / RAG Status Red Indicators and Management Comments on Controls Information Provision R No red indicators. 2 A 3 G Neutral (Volume indicators) Financial Performance R A G The HFEA s bank balance continues to exceed the DH target. Cash balance is likely to continue to rise until the effects of the fee reduction begin in November s receipts from clinics. Increased payments, including from provisions, in the second half of this financial year may also impact. An SMT discussion is planned on the historic surplus / balance. Consideration will be given as to whether this can be re-directed to meet resourcing requirements within DH controls. Additional CMG Commentary 22 September meeting (August updates): - Overall performance is satisfactory. - Comments on bank balance see text beside pie chart above. - The projects on red are being well controlled and mitigations are in place. The red ratings reflect internal resource and workload pressures rather than any specific crisis. Epicentre has become amber since August. Since the online submissions project is linked to Epicentre completion, this project s risk rating will also reduce soon. The licensed activities project will take longer than first anticipated. The potential complexity of the project and its many interdependencies were not sufficiently appreciated at the outset. Again, mitigating controls are in place and the project is being delivered. The risk rating is expected to reduce around November when the licensing exercise should be complete, including any requested representations hearings (of which there may now be 2). 6

418 Authority Paper Paper Title Business Plan Objectives for 2012/13 Agenda Item 9 Paper Number [HFEA (19/10/11) 615] Meeting Date 19 October 2011 Author For information or decision? Recommendation Resource Implications Implementation Communication Organisational Risk Paula Robinson, Head of Business Planning Decision The Authority is asked to approve the objectives outlined for the next Business Plan, for further development over the coming months. In budget Business Plan to be finalised by 1 April 2012 for delivery in 2012/13 business year. For publication on the HFEA website in due course. Low early planning leaves sufficient time for any necessary adjustments and resourcing decisions Annexes Annex A Business Plan Objectives for 2012/13 Business Plan Objectives 2012/13 Page 1 of 7