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Donor-Conceived Individuals’ Right to Know

In recent years, the interests of donor-conceived individuals have come to the forefront. They have become the center of a lively academic debate as well as a driver for support networks, educational campaigns, and legislative changes. While most countries still maintain the norm of protecting donor anonymity, a trend towards making donor identities available is gathering momentum as a growing number of countries adopt laws and regulations banning anonymity.

In the United States, disclosure of donor identity is regulated neither by state nor by federal law. Anonymity is legally permissible and still predominates. No central registry exists to record and safely retain information that would allow possible future linkage of donors and offspring or offspring related through their donor (and raised in different families). Compliance of donor insemination programs, sperm banks, and fertility clinics with professional guidelines regarding recordkeeping is voluntary.

In this legal and regulatory reality, many individuals with donor origins will never have potential access to information about their donors (either detailed nonidentifying information or identifying information subject to donor’s consent to release). Does this reality raise serious ethical concerns?

Some argue that having access to information about one’s ancestral and genetic origins is a fundamental human right that requires no empirical support. In the words of Baroness Mary Warnock, a leading British ethicist, “I cannot argue that children who are told of their origins . . . are necessarily happier or better off in any way that can be estimated. But I do believe that if they are not told they are being wrongly treated.”

Others argue that what underlies the right to know are empirical facts: knowing is essential for healthy family relationships, development of personal identity, psychological well-being and even health (consider the potential medical harms embedded in making false assumptions about half of your genetic heritage).

If we accept the second approach, which is ethically weaker, we need empirical data about the needs, interests, and life experiences of donor-conceived individuals, proving that being denied access to information about donors is indeed harmful. Unfortunately, the collection of such data is particularly challenging for a number of reasons.

First, research conducted with parents who used a donor to create their families shows that most do not tell their children the truth about the circumstances of their conception. This is true even in countries that have banned anonymity. Those who do not know that they are donor-conceived cannot be recruited to participate in research, which creates an insurmountable limitation to the study sample in any research on the life experiences of donor offspring.

Second, confidentiality issues make recruitment of this population exceptionally challenging and sample sizes are typically small (even the larger studies include less than 100 participants).

Third, typical recruitment strategies of research participants through support networks may lead to a significant selection bias, as it is likely that individuals are members of such networks precisely because they are suffering from identity issues or have specific interests.

Finally, because of these challenges, and because the majority of people with donor origins are still relatively young, no longitudinal studies (the gold standard in social science research) have been completed that would ideally follow individuals throughout life and record the impact of their unique status on various life stages and transitions.

Despite these challenges data have been consistently accumulating over the past decade from small studies conducted in different countries indicating that indeed donor-conceived individuals have a strong interest in having access to information about their donors. For example, in 2005 Scheib and colleagues asked 29 donor offspring, ages 12 to 17 years old, from a program that allows adult offspring to identify their donors whether they were planning to ask for their donor’s identity. The majority said they were moderately to very likely to request this information.

Three recent surveys with relatively large samples offer additional insights that can inform the ongoing debate about donor anonymity. A survey, published last spring in Reproductive BioMedicine Online, of 165 individuals who are members of a donor siblings support network is the first study to obtain systematic data from individuals conceived using anonymous sperm donation about their experiences searching for and contacting their donor and siblings with the same donor. The study acknowledges the limitations caused by the sample bias (since participants are members of a group that facilitates contact between donor-conceived individuals and their half-siblings or donor).

The findings indicate that the main reasons individuals were searching for their donor and donor siblings were curiosity about the characteristics of the donor and the desire to gain a better understanding of their genetic identity. Wanting to meet the donor and medical reasons were also significant. In the open-ended questions, many wrote about “the importance of knowing their genetic or ancestral history, and the sense of frustration they felt at not being able to access this information.”

About a third said that the search was prompted by a change in their personal circumstance or by reaching a developmental milestone, such as becoming a teenager, an adult, getting married, or having children. For those who had their own children, searching was a way of providing an ancestral history for their children.

The second is a survey of 485 adults conceived through sperm donation that was designed to “probe the identity, kinship, well-being, and social justice experiences of donor conceived adults.” It is the largest reported sample to date and its methodology of random sampling reduces sample bias.

Data from this survey show that donor offspring indeed perceive being told the truth about their conception and having access to information about donors as important to their well-being. Eighty percent felt 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 felt that they had the right to nonidentifying information about their donor, 67 percent that they had the right to know his identity, and 63 percent that they should have the right to have the opportunity to form some kind of relationship with him (although only 34 percent actually wanted some relationship).

A shortcoming of the study is that it was not peer-reviewed for methodological or more general scientific rigor. But the finding that offspring benefit from and value both donor information and being told the truth was obtained by another study of adult offspring published last spring in a peer-reviewed journal, Fertility & Sterility.

What clearly emerges from these surveys is the urgent need to secure at least the possibility of future access to information about donors. The current situation in the U.S. therefore raises serious ethical concerns. The human need to know where we come from includes a genetic component.

The current U.S. reality therefore calls for immediate action. First, existing mechanisms should be modified to assist in recordkeeping. The Food and Drug Administration currently requires that records pertaining to each donor be maintained for at least 10 years, which in this context is a very short period. The American Society for Reproductive Medicine recommends maintaining “a permanent record of each donor’s initial selection process and subsequent follow-up evaluations” and acknowledges that “a mechanism must exist to maintain such records as a future medical resource for any offspring produced.” The FDA should adopt this recommendation and require records to be kept indefinitely by individual donor insemination programs, sperm banks, and fertility clinics.

Second, a central registry should be created that would safely record all data related to sperm (and more generally gamete) donations for an indefinite period. At this point at least, this registry can remain confidential. If and when a change in policy becomes possible, it would ensure that future access to information would be possible. The efforts of a recent initiative to create a National Gamete Donor Registry have failed. The current vacuum calls for leadership from various stakeholders to create the appropriate mechanism to ensure that people with donor origins can, in the future at least, be treated fairly.

Vardit Ravitsky is an assistant professor in the bioethics program, faculty of medicine at the University of Montreal. Joanna E. Scheib is an associate adjunct professor in the department of psychology at the University of California, Davis, and research director of The Sperm Bank of California in Berkeley.

Published on: July 20, 2010
Published in: Human Reproduction

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