Donor Conceived Individuals and Access to Information about Their Genetic Origins: The Relevance and Role of Rights
Journal of Law and Medicine, 2012 Forthcoming
29 Pages Posted: 23 May 2012
Date Written: May, 22 2012
Abstract
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.
Keywords: human rights, donor-conceived
JEL Classification: K00, K39
Suggested Citation: Suggested Citation