Donor conception and the search for information
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1 1 Donor conception and the search for information - APPROACHES TO INFORMATION RELEASE AROUND THE GLOBE Sonia Allan BA(Hons) LLB(Hons) LLM(Dist) MPH(Merit) PhD
2 DONOR CONCEPTION: A LONG HISTORY OF SECRECY 2 the historical origins of assisted conception are clearly tainted by doubts about the morality of the acts involved [including masturbation and instrumental substitution for sexual intercourse] and their legitimacy as medical treatment. Simone Bateman Noveaus
3 DONOR CONCEPTION: A LONG HISTORY OF SECRECY : donor insemination by Professor William Pancoast (reported 25 years later) 1890s: Dr Robert L. Dickson (research reported 40 years later)
4 DONOR CONCEPTION: PRESERVING DONOR ANONYMITY 4 Donor Doctor Husband Wife
5 DONOR CONCEPTION: PRESERVING DONOR ANONYMITY 5 Adultery? Illegitimacy? Paternity? Inheritance of the child from the donor and/or husband? 1960 UK interdepartmental committee, chaired by Lord Feversham: DI undesirable and should not be practiced donation is an activity which might be expected to attract more than the usual proportion of psychopaths.
6 DONOR CONCEPTION: PRESERVING DONOR ANONYMITY 6 Who/what is the focus of secrecy? Donors; doctors; recipient parents Religion? (Against natural law) Morality? (Adultery; Masturbation) Shame? (Infertility) Fears regarding parentage? Fears regarding rights & responsibilities? Fear of interference with family sphere (emotional/physical) Commercialisation? (Supply and demand)
7 DONOR CONCEPTION: A SHIFT TO OPENESS 7 In some countries the focus shifted to the child. There was and continues to be discussion of: Identity formation Medical history Consanguineous relationships Human rights (identity; genetic heritage; private and family life) Interests Equality Genetic relatives (i.e. siblings) Truth/Openness/Honesty Shift also in who accesses donor gametes
8 Jurisdiction Legislation Date of implementation Victoria (Australia) Infertility (Medical Procedures) Act 1984; Infertility Treatment Act 1995; Infertility Treatment Regulations 1997; Assisted Reproductive Treatment Act ; 1998; 2010; 2016; 2017 (respectively) Prospective; Retrospective Sweden Lag om insemination (Law on Insemination) 1984 (replaced by Genetic Integrity Act 2006) 18 March 1985 Prospective Austria Fortpflanzungsmedizingesetz. 275 Bundesgesetz. 1 July 1992 Prospective Switzerland Federal Act on Medically Assisted Procreation of 18 December 1998 FF 1996 III, 197 (LPMA) 1 January 2001 Prospective; Retrospective
9 Jurisdiction Legislation Date of implementation The Netherlands Wet donorgegevens kunstmatige bevruchting, 2002 ( ) Dual track A or B donors 1 June Western Australia Human Reproductive Technology Act 1991 (WA) 2004 New Zealand Human Assisted Reproductive Technology Act 2004 Norway Act on Biotechnology January 2005 UK Human Fertilisation and Embryology Authority 1 April 2005 (Disclosure of Donor Information) Regulations 2004 Finland The Act on Assisted Fertility Treatments (1237/2006) September 2007
10 Jurisdiction Legislation Date of implementation 10 New South Wales (Australia) Assisted Reproductive Technology Act January 2010 Prospective (retrospective with consent recommended, but pending) (register based) South Australia Assisted Reproductive Treatment Act 1988 (SA); Assisted Reproductive Treatment Regulations 2010 (SA). Prospective (clinic based) 1 July 2010 Wash Rev Code Ann Washington State (United States) July 2011 Prospective (clinic Based) NB. Subject to
11 Jurisdiction Croatia Legislation ZAKON O MEDICINSKI POMOGNUTOJ OPLODNJI (Law on Medically Assisted Reproduction, 12 July 2012) (Croatia), No: / Date of implementation July 2012 Prospective (Register Based) Uruguay Law Regulating Human Assisted Reproductive Techniques (22/11/2013 No ): 22 November 2013 Based on application to the Court. Argentina Código civil y comercial de la nación (Civil and Commercial Code of the Nation), Title V, Ch2, approved by Law 26,994. 1st of October 2014 Prospective (Birth registration, and medical records) 6 April 2015 Ireland Children and Family Relationships Act 2015 Act No. 9 of 2015 Prospective
12 Court Based 12 GERMANY 28 January, 2015, the German Supreme Court (Bundesgerichtshof) held that all children have a right of access information, regardless of age, and that that rights trumps any right the donor has to privacy. BGH, Urteil vom 28. January XII ZR 201/13. October 2016 Hanover Court reaffirms that a child's right to know about where they come from weighed more significantly than a sperm donor's right to determine how their personal information is shared. (Nb. Plaintiff 21 yr old female).
13 DUAL TRACK 13 Not statute or court based Donors choose whether to be anonymous or openidentity Recipients choose whether to use anonymous or open identity donor Places that allow for anonymous or open-identity donations: Canada, Denmark, Iceland, Hungary and the United States. But NOTE where the emphasis lies
14 Approaches to information Release 14 Mandatory Register (with/without notification) Held at birth records office (Victoria notification since 2010) (management to be transferred to VARTA in 2017) Held at Health Department (NSW, Netherlands, Switzerland (govt. dept), Croatia notification (parents), Ireland notification B/C, WA) Run by Stand-alone body (UK, Finland)
15 Approaches to information Release 15 Clinic based Compulsory (Austria, Sweden, Switzerland (retrospective), Washington State*, Germany) Determined by clinic (incl. open identity v anonymous) Court Application Uruguay, Argentina notification B/C,
16 Approaches to information Release 16 Voluntary Registers (with/without DNA testing) United Kingdom Voluntary DNA register pre 1991 donations/conceptions Voluntary donor sibling registry run by HFEA Australia (NSW, Victoria (potential for DNA testing with new laws), Western Australia ) Netherlands (DNA register) New Zealand (may voluntarily place information on HART register)
17 Retrospective? 17 Australia Victoria (laws passed 23 February 2016, commence March 2017) South Australia(current inquiry) Tasmania (current inquiry) Switzerland (Art 41 Federal Act on Medically Assisted Procreation of 18 December 1998 FF 1996 III, 197 (LPMA) (pre 2001 must ask clinics; post 2001 on register). Netherlands (2004) United Kingdom (2005) optional
18 With or without support services? 18 Information Release Notification? Counselling/support regarding access to information? Contact: Intermediary services for example: o liaise b/w donor and donor-conceived person regarding optional contact (letters, meeting?) Expectation counselling/support
19 19 Johnson Et. Al, JLM 2012
20 Thank you. 20 Want to know more? Contact:
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