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.

Proposed legislative change mandating retrospective release of identifying information: consultation with donors and Government response

“…Blyth, 2002; Chisholm, 2012). The Government's responses to the LRC's recommendations and to the results of the consultation indicate its sensitivity to this difficult exercise.…”

“…Discussion of donor anonymity usually incorporates discussion of the competing rights of donors and donor-conceived people (e.g. Blyth, 2002 ; Chisholm, 2012 ). The Government's responses to the LRC's recommendations and to the results of the consultation indicate its sensitivity to this difficult exercise.…”

Who's keeping count? The need for regulation is a relative matter

“…There is an increasing awareness that genetic information is important to the establishment of identity for the DI child and in preventative medicine (4,67), as well as an increasing ability for DI children to independently discover the identity of their donor through genetic data bases and the Internet. There is also an increasing body of opinion that recommends that disclosure of DI origins serve the best interest of the DI child (33,40,44,48,62), and there is the need to provide policy makers with criteria for setting sperm donor limits, to monitor the possible number of half-sibling matings that could result from the multiple use of sperm donors (8,17,103,104).…”

“…Although these DI offspring are not necessarily making contact with their donor fathers, halfsiblings are establishing contact with each other, and a new form of extended biological family is evolving (25,56). Having knowledge of the genetic heritage or genotype that an individual inherits from their parents (33,49,58,(61)(62)(63)(64)(65)(66)(67) is an important concern for many DI children (29,49). Genetic heritage determines an individual's hereditary potentials and limitations (66), and it is well documented that although the environment strongly influences the physical, mental, and emotional development of an individual (68,69), so do the genes inherited from both mother and father (61).…”

How do anonymous sperm donors signal credibility through their self-presentations?

“…Those who were aware, and were raised by heterosexual couples, could feel confusion and unease in talking about their genetic origin with their social father (Beeson et al, 2011). Donor-conceived offspring often felt that receiving information about their donor's identity could help them to make better sense of their own identity (Blyth, 2002) and preferred knowing the full story of their conception (Kirkman, 2003). Curiosity regarding their donor father was a major motif in the narratives of registrants of the international Donor Sibling Registry, and those who traced their father usually remained in regular contact (Jadva et al, 2010).…”