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.
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 donor anonymity. But faced with political pressure from donor-conceived activists and others, they eventually opened their registries to offspring. In societies where children have the legal right to know the identities of their biological parents, anonymous donation is effectively banned, and the supply of sperm and egg donors immediately plummets.
Consider the United Kingdom. Since 1991 the Human Fertilization and Embryology Authority has overseen all infertility treatments and research in the U.K., including a central registry of gamete donors. Its registry is one of the largest in the world, with information on every treatment cycle involving donor eggs, sperm, and embryos. Since 1995 offspring have been able to find siblings through the U.K. DonorLink, a voluntary registry funded by the Department of Health.
As of April 2005, after two years of intense debate, the children of donors won legal access to the registry, destroying the possibility of anonymous donation in Great Britain. Any donor today must be registered and must agree to the release of his or her identity to the offspring when they come of age. Offspring born prior to the new law can receive nonidentifying information about their donors, including occupation, interests, and religion.
As a result, the donor pool in Britain has shrunk drastically, driving patients to travel abroad or purchase gametes through the Internet. A recent U.K. government report found that the number of insemination treatments fell by about 30 percent in 2006, despite a small increase in sperm donors. Most of those new donors, the report found, were “directed donors,” friends or relatives donating exclusively for one couple’s use. Patients without such help may wait up to two years.
The shortage has left many would-be parents in an impossible situation. Writing in The Guardian this past July, a woman named Naomi Anderson described her “tussle” with British bureaucracy. In 2006 Anderson’s husband was diagnosed as azoospermic (with no sperm). Faced with a two-year wait for a donor, Anderson—who was then in her mid-30s, her “fertility in freefall”—went into a panic. She appealed to the Human Fertilization and Embryology Authority to allow her to use an American donor and was denied. In her second appeal, she stressed her husband’s “North American background” and was approved. What, she wondered, of those “who have no connection with any other country”?
Their prospects appear dim. There are now barely 300 men in Britain willing to be sperm donors. The number of donors in the Netherlands has likewise dropped, with women traveling to neighboring Belgium for fertilization. (See “Shopping for Fertility Markets,” page 44.) Couples in Australia face up to a two-year wait for sperm.