21 June 2010
Vardit Ravitsky is an assistant professor in the Bioethics Programs at the Faculty of Medicine, Université de MontréalAppeared in BioNews 563
The outcome of the current situation is that many US donor offspring will never have potential access to information about their donors (either non-identifying or identifying information subject to donor's consent to disclosure). This reality raises serious issues regarding the ethics of denying individuals the right to information about their genetic origins. It also makes it particularly important to collect data on the actual needs and desires of donor offspring, which could provide empirical support for future policy initiatives.
The release of a report on a new American study of young adults conceived through sperm donation on 31 May provides an opportunity to comment on the ethical ramifications of this US regulatory vacuum. The report itself is a popular presentation of the study's findings and, as such, it proposes one of many possible interpretations of the study's data. The empirical data itself, however, is rich and deserves the attention of prospective parents, policy makers, researchers and bioethicists.
The study was designed to probe the identity, kinship, well-being, and social justice experiences of donor-conceived adults. It is unique insofar as it contains the largest reported sample to date and its methodology successfully prevents selection bias to the extent possible. Furthermore, it is the first study of this scale which provides comparisons with adoptees and with individuals who were raised by biological parents.
Unsurprisingly, the data tells a complex story. For example, a majority of donor offspring favour the practice of donor conception (61 percent), believe that society should encourage people to donate sperm and eggs (73 percent) and think that health insurance plans should make it easier for people to have babies with donated sperm or eggs (76 percent). At the same time, on an individual level, a large minority say that the circumstances of their conception bother them (45 percent) and a much bigger percentage of donor offspring (43 percent) than that of adoptees (15 percent) or people raised by biological parents (6 percent) feel confused about who is a member of their family.
Although this multifaceted data can lead to various interpretations and proves the need for further research, one element clearly emerges: being told the truth about their conception and having access to information about donors are indeed perceived by donor offspring as an important element in their well-being. A very large majority (80 percent) feel that 'donor conception is fine as long as parents tell children the truth about their conception from an early age' or that telling early on 'makes it easier for the children'. In addition, 68 percent feel that they have the right to non-identifying information about their donor, 67 percent that they have the right to know his identity, and 63 percent that they should have the opportunity to form some kind of relationship with him. What surfaces is the importance of securing at least the possibility of access to information and the acute inadequacy of the current situation in the US.
The report presenting the study's findings makes some recommendations that may seem extreme and impracticable in the current US context, such as banning anonymous donations or the call to would-be parents to 'consider not conceiving a child with donated sperm or eggs'. It also makes important and realistic recommendations, such as the call for a large-scale longitudinal research study on the well-being of donor offspring, or for mandatory counselling of prospective donors and parents regarding what is known about the life experiences of donor offspring.
Another crucial recommendation supported by the study's data but missing from the report is the immediate creation of central confidential registries that would safely record all data related to genetic origins and genetic relatedness (i.e. the identities of donors, donor-offspring and donor-siblings) for an indefinite period of time. Such registries should be created now regardless of the current legal status of anonymous donation. They would ensure that if and when a change in policy becomes possible, future access to information may at least be technically possible.