• J Law Med · Jun 2012

    Donor-conceived individuals and access to information about their genetic origins: the relevance and role of rights.

    • John Tobin.
    • Melbourne Law School, University of Melbourne, Carlton, Vic 3010, Australia.
    • J Law Med. 2012 Jun 1; 19 (4): 742-57.

    AbstractThe discourse of rights has increasingly been used to frame debates about access to information for donor-conceived individuals. This article seeks to clarify the moral and legal basis upon which human rights are relevant to this issue. It outlines the elements of a substantive rights-based approach which is then used to resolve 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. Secondly, 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 to take reasonable steps to support donor-conceived individuals in circumstances where donors refuse to provide their consent.

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