Thursday, November 13, 2008

Voices of 85 Adults Conceived Via Sperm Donation

Study: The Voices of 85 Adults Conceived Via Sperm Donation
Infertility counselor (psychologist) Dr. Mahlstedt and I examined the attitudes and experiences of 85 adults conceived through sperm donation throughout the world through a study that will be published in the medical journal Sterility and Fertility in early 2009. The abstract was also presented in November 2008 at the American Society for Reproductive Medicine conference in California. I hope that the voices of these donor-conceived will be listened to and learned from. The highlights of our results include that:

-Most of our participants viewed the man who provided sperm as a biological father (versus donor).

-Most searched for him.

-Most wanted to know their donor and half-siblings.

-Most believed that the donor's name should be on the birth certificate in some manner.

-While only 1.2% of our participants had identifying information about their donors, 86.9% wanted to know his identity. More specifically, 35.7% of our sample wanted to meet him once, 26.2% wanted to establish a relationship, 25.0% wanted identifying information, 11.9% only desired nonidentifying information, and 1.2% didn't want anything.

-Most would not be egg/sperm donors themselves or use egg/sperm donation to conceive children.

-12.9% felt that sperm donation shouldn't be practiced at all, 1.2% supported only anonymous donations, 3.5% supported donors who provide some non-identifying information, 57.7% supported only donors who would release identifying information to offspring of any age, and

24.7% believed that donors who provide indepth nonidentifying information is acceptable.

**August 27, 2010 Update**
Our study was just mentioned in Psychology Today! The article contrasts the film The Kids Are All Right to actual data gathered from research on donor-concevied people.

Are the Kids Really All Right?
The interests and rights of people conceived by donor sperm
Published on August 27, 2010
Vardit Ravitsky and Joanna E. Scheib

In the recently released film The Kids Are All Right, two siblings track down their sperm donor and introduce him to their lesbian mothers. What ensues is a plausible unfolding of events when genetically related strangers meet. The film's portrayal of the desire to meet the donor is empathetic. It shows in a positive way how donors and offspring might interact, take interest in and learn about each other, and form a new kind of relationship -- not that of a father-child, but clearly one that matters to both parties. The film also does a good job of helping those of us who have always known our origins to understand why some donor-conceived people want to find their donor.

Disappointingly, however, the film fails real donor-conceived people, and even damages their likelihood of being able to find their donors. The film's portrayal of the interactions between the donor and the two parents play on prospective parents' fears that supporting their child's interest in exploring their identity and donor origins will wreak havoc with their family. The message seems to be that the only way a donor-conceived family can survive is to exclude all contact with the donor. Donor-offspring contact can be good, but ultimately everyone's best interests are served by not encouraging such contact and, in fact, perhaps even selecting an anonymous, never-knowable donor with whom contact is unlikely.

Does Hollywood reflect -- in the case of this film -- the emotional and social reality of donor-conceived individuals? The experience of contact between donors and parents? No research to date provides evidence that donor-conceived families are at risk for disruption due to donor-offspring contact. Evidence is accumulating, however, to support the idea that offspring interest in their donor origins is a normal, and not a pathological, part of psychological development. Evidence also shows that problems can result from avoiding talking about the donor origins of one's family and denying individuals access to their donor's information.

Yet the system is not designed to provide access to such information. In the United States, disclosure of donor identity is regulated by neither state nor by federal law. Donor 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 the same donor (and raised in different families). As a result, many individuals with donor origins will never have 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? Do donor-conceived individuals really want to have access to information about donors, as depicted in the film? To answer this question we need empirical data about their needs, interests, and life experiences. Unfortunately, the collection of such data is particularly challenging for a few reasons. For example, most parents do not tell their children that they were conceived using donor-sperm and confidentiality issues make it difficult to recruit this population.

Despite such challenges data have been 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 insight. A survey, published last spring in Reproductive BioMedicine Online, of 165 individuals who are members of an organization that connects donors and donor-conceived families 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 others who have the same donor. The findings indicate that the main reasons individuals searched 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 commonly cited. 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 them with an ancestral history.

The second recent survey is 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 believe that being told the truth about their conception and having access to information about donors is 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).

It is important that these findings be replicated, however, as the study had both ethical and methodological problems. And indeed another study of adult offspring published last spring (but without the problems) in the journal Fertility & Sterility also found that offspring benefit from and value both donor information and being told the truth, suggesting that at least this finding is grounded in reality.

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 knowing our genetic origins.

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. An earlier version of this essay appeared in The Hastings Center's Bioethics Forum.

No comments: