'Donor Conceived Individuals and Access to Information about Their Genetic Origins: The Relevance and Role of Rights' by John Tobin, forthcoming in the
Journal of Law and Medicine,
comments that
The discourse of rights has increasingly been used to frame debates about access to information for donor-conceived individuals. This paper seeks to clarify the moral and legal basis upon which human rights are relevant to this issue. It then outlines the elements of a substantive rights based approach which is then used to balance the competing rights of a donor and a donor-conceived individual. Three arguments are offered. First, donor anonymity must be prohibited prospectively and donor-conceived individuals must be entitled to information about their genetic parents. Second, a context-sensitive application of a human rights-based approach allows retrospective access to non-identifying information but precludes retrospective access to identifying information where a donor wishes to remain anonymous in circumstances where anonymity was guaranteed at the time of donation. Finally, despite this finding, a rights-based approach requires states to actively encourage such donors to consent to the release of identifying information and take reasonable steps to support donor conceived individuals in circumstances where donors refuse to provide their consent.
Tobin concludes that -
The following key findings emerge from the application of a substantive rights based analysis to the issue of access to information for donor conceived individuals. First, donor conceived individuals have a right to receive both identifying and non-identifying information about their biological parents and States have a positive obligation to ensure prospective access to such information. With respect to retrospective access to information, States must encourage donors to consent to the release of such information voluntarily. Moreover, the release of non-identifying information will be reasonable. But the mandatory disclosure of identifying information without consent is likely to be deemed unreasonable and thus represent a violation of a donor’s right to privacy in those circumstances where he was guaranteed anonymity.
The findings offered in this paper may not offer adequate solace to those donor- conceived individuals who are unable to access identifying information about their biological parents. But their identity rights are not absolute and they must yield to the rights of other individuals where access to information about their genetic identity would represent an unreasonable interference with a donor’s right to privacy. It is conceded that this is far from an ideal outcome from the perspective of donor- conceived individuals. At the same time, a rights based analysis still demands that states develop an effective system to enable access to donor identifying information prospectively. It also requires states to encourage donors who enjoy anonymity under old regimes to voluntarily consent to the disclosure of their identity. And it requires states to provide reasonable support and assistance, such as counseling, to donor-conceived children who are unable to identify their biological parents. A rights based analysis may not always offer them the remedy they are seeking, but it does not condemn them to exclusively bear the burden of historical practices, the harm of which has only now become apparent.
Indeed, perhaps the greatest lesson to be learned from the experience of donor- conceived individuals is for adults to recognize the consequences that follow when children’s interests are conceptualized in certain ways vis a vis their relationship with adults. In the context of assisted reproductive technology, the interests of adults were originally placed at the core of this technology and the interests of the children who were to be produced were, if not overlooked, then certainly not given adequate consideration. Anonymity for donors was informed by a range of considerations that spanned from protecting donors against potential inheritance claims to rendering them invisible and thus alleviating the need for the recipient parents to disclose the true biological origins of their child. These aims may not have been intended to cause harm to a child. On the contrary, an overwhelming majority of the adults involved in this practice would have believed that the child’s best interests would have been served by anonymity and non disclosure as to origins of their conception. But research tells us that this has not been the case and children born as a result of assisted reproductive technology often experience deep distress and anxiety as a result of their origins. A rights based analysis demands that the knowledge of these experiences must be used to ensure the creation of regimes that prohibit anonymity, encourage disclosure and support those individuals where it would be unreasonable for a State to insist on the disclosure of the identity of their biological parents.
