Information on genetic origins in donor-assisted conception: Is knowing who you are a human rights issue?

Abstract

It was not by my choice that my ancestral home is nothing more than a sample jar (Whipp, 2000)

There can be few more basic rights than a right to one's identity…a right not to be deceived about one's true origins (Freeman, 1996)

This article provides an overview of existing arrangements for the management of information on genetic origins in donor-assisted conception, that is, treatment involving sperm, eggs or embryo donation. The balance of this article reflects the fact that much of the debate on information on genetic origins in donor-assisted conception has been dominated by sperm donation. A detailed discussion of the rather different issues of egg and embryo donation would have added significantly to its complexity and length. The article considers what donor-conceived people wish to know about their genetic origins and how this might be seen as a human rights issue. The possibility of conflict between the interests and rights of donors and recipients of donated gametes or embryos is discussed, and possible policy and legislative options are outlined. The paper concludes that a donor-conceived person's own definition of their best interests should form the basis for the facilitation of access to information about their genetic origins.