Who's your daddy? Children of sperm donors are seeking more information about their once-anonymous fathers, sometimes at the risk of the fertility industry itself.

• Author: Miller, Cheryl

EIGHT YEARS AGO, a woman we'll call Sarah discovered that she was not biologically related to the father she had known all her life. Sarah, her mother revealed, was "donor-conceived." Her parents, after trying without success for a pregnancy of their own in the late 1970s, turned to a fertility center, where Sarah's mother was artificially inseminated with sperm from an anonymous donor. At the time sperm banks did not offer detailed donor profiles. Upon discovering the truth, Sarah was told what her parents had been told about her biological father: He was a medical student, possibly of Scandinavian ancestry.

Sarah, who describes her family as "loving and stable," was shocked. Today she is also sick. A year before finding out about her conception, she began to experience severe, unexplained bladder problems. She has been seeing doctors at Johns Hopkins; so far they haven't figured out the cause. Recently married, Sarah worries that she may pass the illness on to future children. The medical history of her biological father could provide a crucial piece of the diagnostic puzzle.

But in the early days of artificial insemination, clinics often shredded or burned files to ensure donor anonymity and client privacy. Sarah's father's identity may be locked away in storage somewhere, or it may have been destroyed. Although aware of the likely futility of her search, Sarah still continues--writing the clinic, nurses, her doctor--in the hope that someone can help.

Faced with stories like this, the fertility industry and a few state governments are trying to come up with a way to ensure that future donor-conceived children will have access to their fathers' medical files. A national registry, for example, could allow banks to monitor how many times a man donates semen and how many children are born from his seed, to share updates about medical issues and to facilitate long-term research on health outcomes.

But any such registry poses a threat to the privacy of sperm and egg donors, and to an industry whose very existence depends on some measure of discretion. In Europe and Australia, national governments created mandatory, centralized registries that activists succeeded in opening to the public, eliminating the possibility of anonymous donation. The result: Donors ceased to come forward in adequate numbers, and the waiting lists for sperm and ova have grown very long. For women nearing the end of their fertility, such regulation may mean they never achieve pregnancy.

[ILLUSTRATION OMITTED]

In the long run, some kind of registry probably is coming to the United States. But what should it look like? Who should control it? And who will have access to it?

The End of Anonymity

While few American clinics still actively destroy files, sperm banks and egg donor agencies that go out of business do not always preserve records of donor identities. The sperm bank industry is fairly consolidated, with only a few major players, but there are hundreds of egg donor agencies, many of which are side practices of local physicians. Andrea Braverman, a psychologist who has worked in the field for over a decade, was employed by one such agency in Philadelphia for 15 years. "That place folded last fall," she tells me. "I think of all those people I saw and all those records. I still wonder, where are they?"

Access to medical information has become a major issue as scientists learn more about the hereditary aspects of disease. Most clinics now offer detailed medical histories along with sperm and ova, but donors may not know at the time of donation whether they are at heightened risk for breast cancer or heart disease--information that could possibly save a life.

In Europe many mandatory government-run registries initially respected...