ECONOMIC AND SOCIAL RESEARCH COUNCIL END OF AWARD REPORT

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1 ECONOMIC AND SOCIAL RESEARCH COUNCIL END OF AWARD REPORT For awards ending on or after 1 November 2009 This End of Award Report should be completed and submitted using the grant reference as the subject, to reportsofficer@esrc.ac.uk on or before the due date. The final instalment of the grant will not be paid until an End of Award Report is completed in full and accepted by ESRC. Grant holders whose End of Award Report is overdue or incomplete will not be eligible for further ESRC funding until the Report is accepted. ESRC reserves the right to recover a sum of the expenditure incurred on the grant if the End of Award Report is overdue. (Please see Section 5 of the ESRC Research Funding Guide for details.) Please refer to the Guidance notes when completing this End of Award Report. Grant Reference RES Grant Title Transnational Reproduction: An exploratory study of UK residents who travel abroad for fertility treatment. Grant Start Date 1 st March 2009 Total Amount 102, Grant End Date 30 th November 2010 Expended: Grant holding Institution De Montfort University, Leicester Grant Holder Professor Lorraine Culley Grant Holder s Contact Details Address Faculty of Health and Life Sciences 0.15a Hawthorn Building De Montfort University Leicester LE1 9BH Co-Investigators (as per project application): Dr Nicky Hudson Prof Eric Blyth Dr Allan Pacey Prof Frances Rapport Ms Wendy Norton lac@dmu.ac.uk Telephone Institution De Montfort University University of Huddersfield University of Sheffield University of Swansea De Montfort University 1

2 1. NON-TECHNICAL SUMMARY Please provide below a project summary written in non-technical language. The summary may be used by ESRC to publicise your work and should explain the aims and findings of the project. [Max 250 words] This study aimed to explore the motivations and experiences of UK residents who travel abroad for fertility treatment. Methods included a systematic review; interviews with 15 key informants and 51 people with experience of cross border fertility travel, and an interactive stakeholder workshop to discuss findings. Patient motivations for travelling abroad are complex. A desire for timely and affordable treatment with donor gametes was evident in a high number of cases (71%). However, most people gave several reasons including: the cost of UK treatment; higher success rates abroad and dissatisfaction with UK treatment. People travelled to 13 different countries, the most popular being Spain and the Czech Republic. Most organised their own treatment and travel. Contrary to anecdotal accounts, the average age of women seeking treatment (38 years) was only slightly higher than those seeking IVF in the UK and the multiple pregnancy rate (19%) was lower. While experiences of overseas treatment were broadly positive, participants discussed initial anxieties and practical difficulties in the UK pre- and post treatment. Our findings demonstrate the importance of technological, economic and cultural processes of globalisation: the centrality of internet use; the availability of cheap air travel; the global commercialisation of assisted reproduction and the growing commodification and transnational movement of gametes. Recommendations include: improving public funding of treatment in the UK; tackling the UK donor shortage; improving patient-centred care; improved information for fertility travellers; professional leadership in reducing potential adverse consequences of overseas treatment and provision of shared care with UK clinics. 2. PROJECT OVERVIEW a) Objectives Please state the aims and objectives of your project as outlined in your proposal to the ESRC. [Max 200 words] Infertility affects around 80 million women worldwide and over 40 million women are seeking assisted reproductive treatment. There appears to be a growing trend of people seeking infertility treatment outside their countries of residence, though there are few data on incidence of what is popularly known as fertility tourism. Many commentators in the UK and elsewhere have raised concerns about this phenomenon, suggesting potential risks for patients, offspring, gamete donors and healthcare systems at home and abroad. Existing studies are based on quantitative approaches and little is known about the experiences of those who travel abroad 2

3 for fertility treatment. This is especially the case for UK residents as there has been no published work on this issue. This qualitative research project therefore aimed to explore the motivations, and experiences of UK based individuals who travel abroad for fertility treatment. The objectives of the study were: to provide an account of the motivations, expectations, experiences and support needs of people who travel abroad for infertility treatment; to provide an enhanced knowledge base and recommendations for user support and regulatory policy and to make a contribution to the theoretical underpinning of globalising tendencies and global transactions in human body parts. b) Project Changes Please describe any changes made to the original aims and objectives, and confirm that these were agreed with the ESRC. Please also detail any changes to the grant holder s institutional affiliation, project staffing or funding. [Max 200 words] No changes were made to the project aims, objectives, staffing or funding. The project was completed within the scheduled timeframe. It was necessary however, to request a three month extension to the project in order that additional dissemination activities could take place within the budget period of the grant. This was agreed by the ESRC. This extension allowed attendance by team members at two additional dissemination events and has enhanced the scientific impact of the research. A small under-spend is due to two team members being located overseas for part of the study period during which time meetings and communication were undertaken by Skype and . This reduced travel and accommodation expenses for team members. In addition, all participants were English speaking and therefore no translation costs were incurred during data collection. c) Methodology Please describe the methodology that you employed in the project. Please also note any ethical issues that arose during the course of the work, the effects of this and any action taken. [Max. 500 words] The research strategy was based on an interpretivist epistemology, using qualitative methods to meet our objectives of exploring the motivations and lived experiences of those undertaking fertility travel, and the perceptions of other stakeholders engaged in this phenomenon. Given the absence of existing empirical research, the study was designed to be exploratory and inductive. The study had three phases: Phase one was a scoping phase designed to examine the current state of knowledge on transnational reproduction. This included a systematic narrative literature review and 15 interviews with key informants (clinicians, nurses, counsellors and patient support group representatives). A thematic analysis of these data informed phase two. Phase two (main study). This consisted of in-depth, semi-structured interviews with a purposive 3

4 sample of 51 users and intended users of overseas fertility clinics (41 women and 10 men), recruited from 6 different sources between June 2009 and June Interviews were recorded and transcribed verbatim. Demographic data were also collected from participants. Interview data were analysed using a thematic coding method in which a framework of emergent codes was developed, elaborated into analytic categories and applied to the transcripts in the qualitative software package QSR Nvivo8. To enhance the validity and interpretive authenticity of the findings all team members were involved in coding a sample of interviews. In addition to the thematic analysis, and in order to ensure descriptive validity on key findings, aspects of the interview data were also subjected to quantitative translation. This involved simple counting techniques to allow us to test and revise generalisations and increase the robustness of the conclusions. Phase three involved an interactive workshop with 22 stakeholders. Delegates included: fertility travellers; UK healthcare providers; counsellors; clinicians from overseas clinics; patient support group and professional body representatives; officials from the fertility regulatory body (HFEA) and academics. The workshop had several aims. First, to develop a more sophisticated understanding of the data (ontological authenticity). To do this we presented the preliminary data to delegates (in a number of formats: power point presentation; vignettes and themed posters) and invited discussion and comment. Second, we aimed to help in the appreciation of others viewpoints on the issue (educative authenticity) by using key pad voting technology and small group discussions to explore and highlight the diverse range of positions present amongst the delegates. Third, we aimed to stimulate forms of action (catalytic authenticity). To do this we facilitated structured debate (small and large group) about recommended actions for key stakeholders. Finally, we aimed to potentially empower people to act on the findings (tactical authenticity), which at a broader level relates to the impact of the study. The workshop also acted as a showcase for the research and represented an important networking opportunity for the team and for key opinion formers, policy makers and stakeholders. Advisory group. The project was guided by an advisory group of 24 people, including infertility service users, clinicians, support group representatives and policy makers. No unforeseen ethical issues arose during the study. d) Project Findings Please summarise the findings of the project, referring where appropriate to outputs recorded on ESRC Society Today. Any future research plans should also be identified. [Max 500 words] Our systematic review examined 54 papers on cross border reproductive travel in the English language international literature, including empirical research studies (18) and debate papers (36). The review identified significant limitations and gaps in knowledge of the incidence and experience of transnational reproduction (Hudson et al. 2011, Culley et al. 2010c). Interviews with 51 people undertaking overseas fertility travel demonstrated that existing discourses of the fertility tourist are in danger of essentialising what are often complex motivations. Donor gametes are in short supply in the UK and a desire for timely and affordable treatment with donor gametes (especially eggs) was clearly evident in a high number of cases (71%). Others were seeking treatment with their own gametes and gave a wide range of reasons for going overseas, including the cost of UK treatment, higher success rates abroad and 4

5 dissatisfaction with UK clinics (Culley et al. 2010b, Hudson & Culley 2010b). People travelled to 13 different countries, the most popular being Spain and the Czech Republic, primarily reflecting the availability of gamete donors, accessibility and affordability. There was little evidence of formal shared care arrangements with UK clinics: most participants organised their own travel, treatment, monitoring and follow up in the UK (Culley 2010e). Fertility travellers were predominantly from professional or managerial backgrounds reflecting a broader pattern of unequal access to reproductive technologies. Contrary to anecdotal evidence, women undertaking cross border treatment were only slightly older than women in UK treatment, with a mean age of 38.8 years (range 29-46) the multiple pregnancy rate (19%) for our participants was lower than that for treatment in the UK (submitted Human Reproduction). While experiences of overseas treatment were broadly positive, participants discussed initial (pre-travel) anxieties, and practical difficulties in the UK pre- and post treatment. Many would have preferred treatment at home, though some appreciated the sense of control that organising their own treatment gave them. Many found a more patient-centred approach in clinics abroad than in the UK (Culley 2010d, Culley 2011). Interviews with key informants demonstrated support for overseas fertility treatment as a legitimate choice for patients. However, many constructed cross-border treatment as inscribed with risks of various kinds deriving from concerns about quality, safety and standards, negligent practitioners, absence of counselling and increased incidence of multiple pregnancies (Culley & Hudson 2009b). Both key informants and fertility travellers discussed ethical concerns relating to the commodification of reproduction, the health and well-being of donors and the implications for offspring of patients using anonymous donors overseas (Hudson & Culley 2010a, Culley 2010c). Our findings demonstrate the importance of technological, economic and cultural processes of globalisation. The centrality of internet use; the availability of cheap air travel; the global commercialisation of the assisted reproduction industry and the growing commodification and transnational movement of gametes are all important features of the phenomenon (Culley & Hudson 2010 a&b). Future project related research will centre on the recruitment and experiences of gamete donors in the UK and abroad. e) Contributions to wider ESRC initiatives (eg Research Programmes or Networks) If your project was part of a wider ESRC initiative, please describe your contributions to the initiative s objectives and activities and note any effect on your project resulting from participation. [Max. 200 words] This project was not part of a wider ESRC initiative. 5

6 3. EARLY AND ANTICIPATED IMPACTS a) Summary of Impacts to date Please summarise any impacts of the project to date, referring where appropriate to associated outputs recorded on ESRC Society Today. This should include both scientific impacts (relevant to the academic community) and economic and societal impacts (relevant to broader society). The impact can be relevant to any organisation, community or individual. [Max. 400 words] Scientific Findings have been presented to scientific meetings of professionals working in the field of infertility in the UK and Europe, including papers and invited plenary presentations at 4 international meetings of fertility clinicians and an invited contribution to a post-graduate course for the International Infertility Counselling Organisation. A nursing audience was addressed at the 10 th Interdisciplinary Research Conference Transforming Healthcare through Research and Education (2009. Publications with implications for professional practice to date: Culley, L & Hudson, N. (2010) Why do people travel abroad for fertility treatment? What we don t know. Journal of Fertility Counselling 17 (1): Hudson, N. Culley, L. Blyth, E. Norton, W. Rapport, F. Pacey, A. Cross-border reproductive care: a review of the literature. Accepted for publication: Reproductive Biomedicine Online. Hudson, N. & Culley, L. Assisted Reproductive Travel: UK Patient Trajectories. Under review: Reproductive Biomedicine Online. Culley, L. Hudson, N. Blyth, E. Norton, W. Rapport, F. Pacey, A. Crossing borders for fertility treatment: motivations and destinations of UK fertility travellers. Under review: Human Reproduction. Substantive findings and methodological implications have been disseminated to social science academics via 8 papers at 6 international and 2 national conferences, including papers at the XVII ISA World Congress of Sociology, July 2010, the Society for Applied Anthropology in Mexico, March 2010 and an international, interdisciplinary symposium on cross border care at Cambridge University, December Publications to date: Culley, L & Hudson, N. (2010) Fertility Tourists or Global Consumers? A Sociological Agenda for Exploring Cross-border Reproductive Travel. International Journal of Interdisciplinary Social Sciences 4(10) Societal impacts Policy: Findings informed the development of an international professional code of practice for fertility clinicians produced by the European Professional Body: European Society of Human Reproduction and Embryology. 6

7 Evidence presented to the Nuffield Council on Bioethics Working Party on Human Bodies in Medicine and Research, May Report due Findings have been discussed by the Board of the International Society for Cross Border Care, which is considering international clinic accreditation. Interim findings discussed by the Human Fertilisation and Embryology Authority (UK regulatory body) Ethics and Law Horizon Scanning Seminar, May Findings contributed to Expert Workshop on intra-family gamete donation organised by HFEA who are developing a revised donor policy. Media: Interviews: BBC Women s Hour, Radio Five Live. Press: The Sunday Telegraph, BMJ, The Guardian, Bionews, Leicester Mercury, Yorkshire Post, Swansea Post, Western Mail. b) Anticipated/Potential Future Impacts Please outline any anticipated or potential impacts (scientific or economic and societal) that you believe your project might have in future. [Max. 200 words] An evaluation of the project by participants and key stakeholders planned for May Further publications in preparation for professional and academic journals including Human Reproduction, Fertility and Sterility, Qualitative Health Research. A summary will be made available via the project website ( This will be disseminated to participants and patient support groups (e.g. INUK, Daisy Network) and professional bodies (e.g. British Fertility Society). Potential to improve patient support. US based IVF Podcasts: Educational and historical IVF videos have recorded a podcast based on the study findings, available in It is aimed at improving awareness and understanding of patient experiences amongst academics and clinicians. Study findings will be used respond to the HFEA s current Public Consultation and Review on gamete and embryo donation in the UK. Invitations for contributions from professional groups and the media anticipated as the main findings are published in Invitations received from the Northern Nurses Fertility Forum, All Wales Midwifery and Reproductive Health Research Forum, and RCN Women s Health Forum. Potential to influence nursing practice. We are developing a KTP project with partners (NGDT, local NHS) to apply the findings to donor recruitment policy and practice. 7

8 You will be asked to complete an ESRC Impact Report 12 months after the end date of your award. The Impact Report will ask for details of any impacts that have arisen since the completion of the End of Award Report. 4. DECLARATIONS Please ensure that sections A, B and C below are completed and signed by the appropriate individuals. The End of Award Report will not be accepted unless all sections are signed. Please note hard copies are NOT required; electronic signatures are accepted and should be used. A: To be completed by Grant Holder Please read the following statements. Tick ONE statement under ii) and iii), then sign with an electronic signature at the end of the section. i) The Project This Report is an accurate overview of the project, its findings and impacts. All co-investigators named in the proposal to ESRC or appointed subsequently have seen and approved the Report. ii) Submissions to ESRC Society Today Output and impact information has been submitted to ESRC Society Today. Details of any future outputs and impacts will be submitted as soon as they become available. OR This grant has not yet produced any outputs or impacts. Details of any future outputs and impacts will be submitted to ESRC Society Today as soon as they become available. OR This grant is not listed on ESRC Society Today. iii) Submission of Datasets Datasets arising from this grant have been offered for deposit with the Economic and Social Data Service. OR Datasets that were anticipated in the grant proposal have not been produced and the Economic and Social Data Service has been notified. OR No datasets were proposed or produced from this grant. 8