Donor-conceived individuals and access to information about their genetic origins: the relevance and role of rights.
The 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.
Melbourne Law School, University of Melbourne, Carlton, Vic 3010, Australia.
John
J
Tobin
D022126:Access to Information / Q000331:legislation & jurisprudence*; D001315:Australia; D003219:Confidentiality / Q000331:legislation & jurisprudence; D005260:Female; D006806:Human Rights / Q000331:legislation & jurisprudence*; D006801:Humans; D008297:Male; D018587:Oocyte Donation / Q000331:legislation & jurisprudence*; D033283:Patient Access to Records / Q000331:legislation & jurisprudence*; D010375:Pedigree; D012661:Semen; D014019:Tissue Donors / Q000331:legislation & jurisprudence*; D014342:Truth Disclosure