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Legal challenges to donor anonimity.

Abstract

Several legal principles challenge the current policy of gamete donor anonymity, and require that Canadian legislation clearly move toward a policy of open donor records. These considerations include provisions of the United Nations Convention on the Rights of the Child, Charter protections of equality for offspring of donors, privacy considerations for the offspring regarding their own lie choices and the provisions within Bill C-13 itself that emphasize the priority of the well-being of children.

On December 10, 2002, a 6-5 vote in the House Standing Committee on Health narrowly defeated an amendment to Section 18(3) of the Assisted Human Reproduction Act (1) that would allow the adult offspring of donor (2) conception to have access to identifying information about their genetic parents. The surprising failure to approve the amendment reverses the Committee's own December 2001 (3) conclusions that Canadian legislation on assisted reproduction must enable offspring to have access to such information. More important, passing Bill C-13 without such an amendment would establish--for the first time--a class of individuals who are specifically prevented by federal law from having access to accurate information about their genetic origins. While the trend in adoption law over recent decades has been toward openness, not all jurisdictions require open records; none, however, specifically requires that secrecy be maintained. Establishing a class of individuals whose genetic origins must be kept secret would be a serious mistake, and may leave the Canadian government open to significant legal challenges regarding human rights obligations and violations of the Canadian Charter of Rights and Freedoms. (4)

Donor anonymity has been an unstructured social experiment in which the results for donor offspring have been almost entirely ignored. There is no evidence that anonymity is best for offspring or social families, while infertility counselors (5) and donor offspring (6) themselves document common experiences of grief, loss, isolation, disconnection, struggles with identity formation, and anger at secrets being kept about them. Secrecy may damage social family relationships, especially if the truth comes out during a crisis. As with adoption, social families may fend a variety of age-appropriate ways to incorporate knowledge about, and even relationships with, the child's biological parent(s), but those who would prefer openness are able to give no details beyond acknowledging the involvement of an unknown donor.

The preamble to this legislation seeks to protect the "dignity" of persons affected by assisted conception techniques, but purposely hiding fundamental information about a person's identity is the opposite of treating them with dignity: it institutionalizes lying. Declining to provide an answer (deception by omission) is often insufficient to respond to children's questions about their origins; outright fabrication of lies is often required to keep the secret. Governments share the obligation to tell the truth to citizens, but are often complicit in deception about biological origins in birth certificates and, if the present legislative proposal is enacted, in the regulation of assisted conception.

Bill C-13 establishes at section 2(a) that "the health and well-being of children born through the application of these technologies must be given priority in all decisions respecting their use." While there is understandable distress at changes to the current ad hoc practice of donor anonymity, legislation must move toward a policy of openness on the grounds of human rights, Charter protections of equality, and privacy rights.

Human Rights

Article 8 of the United Nations Convention on the Rights of the Child (7) commits States Parties "to respect the right of the child to preserve his or her identity" and to provide "assistance and protection" when a child is deprived of "some or all of the elements of his or her identity". Other relevant articles prevent discrimination (art. 2), separation from parents except where necessary for the child's best interest (art. 9), and interference with privacy, family and home (art. 16). The UNCRC was unanimously adopted by the UN General Assembly in 1989, ratified by Canada in 1991, and is recognized by the Supreme Court of Canada as "the most universally accepted human rights instrument in history." (8)

Laws or regulations that purposely deny offspring access to identifying information about their biological parents would clearly violate the UNCRC. Instead, article 8 would seem to require legislation to provide offspring with information relevant to the genetic elements of their identity by opening previously sealed records, and articles 9 and 16 might even require facilitating donor offspring to meet genetic relatives. These protections for children may extend not only to offspring created by assisted reproduction, but also to the children raised by the donor him/herself, who may have legitimate interests in knowing about the existence of half-siblings. A child's perspectives on privacy, family and home may not be the same as those of their social and/or genetic parents, and the child's needs must take precedence.

Charter Equality Rights

Section 15(1) of the Charter states:
 Every individual is equal before and under the
 law and has the right to the equal protection and
 equal benefit of the law without discrimination
 and, in particular, without discrimination based
 on race, national or ethnic origin, colour,
 religion, sex, age or mental or physical disability.


Current anonymity policies create two categories of persons in Canada: those with legal access to a reasonably accurate birth certificate, and those whose genetic parentage is purposely concealed from them as a matter of policy. Accurate birth certificates typically exist even in cases of adoption, and steady progress toward opening adoption records has occurred in recent decades. Opening donor records to prevent discrimination against offspring can coexist with prevention of discrimination against infertile persons, (9) who may still access infertility treatments.

However, reproductive rights in common law are noninterference rights, consistently offering limited protections from sterilization or from interference in pregnancy, and to protect a right to use contraception or abortion. (10) Adults exercising their procreative liberties cannot interfere with the nondiscrimination rights of their offspring.

Privacy

The Supreme Court of Canada has recognized that "the right to liberty ... guarantees to every individual a degree of personal autonomy over important decisions intimately affecting their private lives." (11) However, adult offspring of anonymous donors are given less control over information regarding their own origins and familial relationships than are several unrelated parties: Party A (infertility clinic) has personal information about party B (the offspring); A may share this information about B with researchers, government regulators and others; however, B is prevented from learning or acting upon what A knows about B.

While privacy rights are commonly invoked to protect donors from having the facts of their involvement revealed, we must ask why it is not an equal violation of the offspring's privacy when others control important personal information about their genetic relations.

Offspring are similarly denied autonomy regarding private decisions such as whether to trace their genealogies or to develop personal relationships with near or distant blood relatives. It is not appropriate for social parents, donors, clinicians, legislators, or others to determine whether individual offspring should find kinship lines meaningful; this is a deeply personal choice with importance that varies widely among individuals. The formation of personal identity in adolescence may cause the denial of kinship information to be especially intimate and damaging.

Incomplete familial medical information significantly undermines one's ability to make important health care and lifestyle choices. Sections 14 to 18 of Bill C-13 would establish a registry of donor health information, but would require written consent by donors for the release of health information and includes provisions for the destruction of information. No provision is made for routinely updating health information beyond what was known at the time of the donation, despite the obvious implications that a family history of late-onset conditions would have for the health of the offspring. Concerns about violating the donor's medical confidentiality and ensuring up-to-date accuracy would both be relieved if offspring could contact their progenitors and/or extended relatives directly and ask for relevant information, just as most individuals do.

Ironically, donor privacy is not sufficiently assured under a policy of donor secrecy, as donor offspring (like adoptees and people with uncertain paternity) might trace their origins and confirm parentage through sleuthing, voluntary testing of potential relatives, and even genetic data banks. Legislation that specifically exempts donors from financial or custody obligations, and that strictly limits the number of offspring born from any donor, would offer better protection for donors. In any case, offspring who are seeking their origins report that they want information and a sense of kinship, not financial support, from their donor progenitors. (12)

Finally, past and future donations need not be regulated the same way. A legislative commitment to open donations in the future does not necessarily require that past donors suffer violations of the promise of privacy. However, just as agencies currently match mutually interested birth parents and adoptees, matching past donors and their offspring should be facilitated as they individually prefer. Counselling should be available to all parties involved as they make their decisions and adapt to the consequences.

Conclusion

Donor conception creates extended families with complicated genetic, social and emotional ties. The meanings of relationship are not subject to legislative control, which means that individuals must be given the reformation and support necessary to navigate their relationships as they see fit. A policy of donor secrecy denies individual and familial autonomy on these intimate relationships, violates the human rights of children to their full identity, creates discriminatory categories among offspring, violates the privacy rights of offspring (and perhaps others), and violates the commitment in Bill C-13 to the protection of children. There is simply no evidence that anonymity is in the child's best interests, and the preferences of procreating adults cannot be considered a compelling justification for such grave systemic injustices to their children.

The author would like to thank the Alberta Heritage Foundation for Medical Research and the Canadian Institutes of Health Research for their funding support.

(1.) Bill C-13, An Act respecting assisted human reproduction [Assisted Human Reproduction Act] 2d Sess., 37th Parl., 2002 (reinstating Bill C-56, 1st Sess., 37th Parl., 2002). online: Parliament of Canada <http://www.parl.gc.ca> [Bill C-13].

(2.) "Donor" is understood to be the provider of ova, sperm or an embryo who does not intend to be a social parent to the offspring conceived through assisted reproduction.

(3.) Canada, House of Commons Assisted Human Reproduction: Building Families, Report of the Standing Committee on Health, Chair: B.C. Brown, December 2001, online: Parliament of Canada <http ://www.parl.gc.ca>.

(4.) Canadian Charter of Rights and Freedoms, Part I of the Constitution Act, 1982, being Schedule B to the Canada Act 1982 (U.K.), 1982, c.11.

(5.) "Conference Reports: Donor Information Consultation--Providing Information about Sperm, Egg and Embryo Donors: 16 May 2002" (2002) 9 J. Fertility Counselling 16; "Conference Reports: Building Families through donor conception: an international forum on the personal, professional and public policy issues: 22-23 June 2002" (2002) 9 J. Fertility Counselling 18 [Building Families Conference]. Ken Daniels & Erica Haimes, Donor insemination: International Social Science Perspectives (Cambridge UK: Cambridge University Press, 1998); A.J. Turner & A Coyle "What Does it Mean to be a Donor Offspring?" Human Reproduction (2000)15:9 2041; Eric Blyth, et al., "The Implications of Adoption for Donor Offspring Following Donor-Assisted Conception" (2001) 6.4 Child & Family Social Work 295.

(6.) S. Franz & D. Allen (eds) Report to Health Canada: The offspring speak--an international conference of donor offspring Toronto: Infertility Network, 2001; Conference, ibid.

(7.) United Nations, Convention on the Rights of the Child, (GA Res. 44/25, 1989)Can. T.S. 1992, No. 3. [UNCRC].

(8.) R. v. Sharpe, [2001] 1 S.C.R. 45 at para. 177.

(9.) Cameron v. Nova Scotia (Attorney General) (1999), 177 D.L.R. (4th) 611 (N.S.C.A.).

(10.) Laura Shanner "The Supreme Court of Canada on Reproduction: Private Matters and Conflicting Interests" in Hugh Mellon & Martin Westmacott, eds., Political Disputes and Judicial Review (Toronto: Nelson, 2000) at 134; Laura Shanner, "The Right to Procreate: When Rights Claims Have Gone Wrong" (1995) 40:4 McGill L.J. 823.

(11.) R. v. Morgentaler [1988] 1 S.C.R. 30 at para 240.

(12.) Conference. supra note 5 at 18.

Upcoming Events

Joint Annual Meeting of the Canadian Bioethics Society and the American Society for Bioethics and Humanities, October 23-26, 2003 in Montreal. Information www.asbh.org/annual_meeting/index.htm

10th Canadian Conference on International Health--The Right to Health, Influencing the Global Agenda: How Research, Advocacy and Action can Shape our Future. October 26-29, 2003 in Ottawa. Information www.csih.org/what/conferences2003.html

Strengthening the Foundations: Health Services and Policy Research--Canadian Health Care. November 22-24, 2003 in Montreal. information http://ellisriley.on.ca/IHSPR/english/home.htm

National Health Law Conference 2004: Who Gets It? Who Decides? Issues of Access and Allocation in Health Care January 23-24, 2004 in Toronto. Information www.law.utoronto.ca/visitors_content.asp

Laura Shanner is an Associate Professor appointed to the John Dossetor Health Ethics Centre from the Faculty of Medicine and Dentistry (Public Health Sciences), University of Alberta, Edmonton, Alberta.
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Title Annotation:gamete donors
Author:Shanner, Laura
Publication:Health Law Review
Date:Sep 22, 2003
Words:2180
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