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.
Pre-empting the Regulators
Charles Sims, the medical director of California Cryobank, thinks there is a better way. Under Sims' leadership, the three largest sperm banks in the country—California Cryobank, the Xytex Corporation, and the Fairfax Cryobank—have proposed a voluntary registry that would track donors and their offspring nationwide.
Many in the industry fear that even a private, voluntary registry will eventually be made public. "There will always be reservations," Sims concedes. But if the industry does not propose some system, he warns, government might step in. In the absence of a private registry, Congress is more likely to legislate one, effectively seizing control of banks' files. Any anonymity promises made to donors would be endangered, since the government never made any such promises.
Under the banks' proposal, the private registry would be administered by a nonprofit organization composed of participating sperm and egg banks. All the files would remain private; only an appointed registrar and the clinic that created them would have access. A board of directors would establish policies and procedures regarding access. The board would include liaisons from professional organizations, such as the American Society for Reproductive Medicine, the American Association of Tissue Banks, and the American Bar Association, as well as donors, offspring, and recipients.
While the final details have yet to be worked out, the registry would function mainly as a repository for records. The banks would still control their own files, reassuring donors that their identities will not be turned over by a third party later on. Offspring seeking information about their donors would be directed to the clinic in question. Only if a bank closes or goes out of business would the files be turned over to the board, ensuring records are not lost and that the offspring will always have a point of contact. The board would continue to protect the donor's anonymity, while providing necessary medical information to offspring.
Sims offers the blood-banking industry as an example. In 1947 a number of blood banks came together to form the American Association of Blood Banks, now known simply as the AABB, to set standards of care. The Food and Drug Administration didn't get involved until 1972, and even then the agency largely adopted the banks' guidelines. "AABB standards have always been the most detailed set of requirements for the practice of transfusion medicine," explains Herbert Perkins, a former chairman of the organization's standards committee. "They've covered areas that are not even included in FDA requirements."
Much the same has already happened in the sperm bank industry. The FDA did not set specific guidelines for disease screening of donors until May 2005. Prior to then, only New York, Maryland, and California had regulations in place. Professional organizations such as the American Society for Reproductive Medicine also provided guidelines, but these were not mandatory. Despite the absence of regulations, most sperm banks were already conducting screening tests, and many, including California Cyrobank, go beyond FDA requirements in the diseases and conditions they look for.
Self-regulation is not without its problems. While the AABB has been good at establishing standards, it has been less effective in conducting inspections of member banks and ensuring compliance. The system relies on volunteer assessors and does not have the resources the FDA does.
Sims agrees that enforcement is a serious challenge. Some issues—such as ensuring donors only donate a set number of times—will likely be "beyond the scope of a voluntary registry." (The American Society for Reproductive Medicine currently recommends limiting a donor to 25 live births per population area of 850,000 in order to prevent cases of accidental incest among offspring.) Initially, Sims believes, it is better to focus on the "principal goal" of the registry project: "to preserve the records that link a child to a specific donor." Once a registry is in place, he allows that there may be room for government oversight.
For now Sims is focused on winning the support of his competitors. A private registry might pose some risk to anonymity, but it clearly poses less risk than a government registry. And the increasingly vocal demands of donor offspring and their parents are creating pressure that likely will invite government meddling if the industry does not act first.
In the past, sperm banks have not always been very concerned about donor offspring. "I think too often we've seen our job as simply to help someone achieve a pregnancy rather than looking at…the welfare of the child," Sims says. Now, with offspring coming of age and more parents disclosing their children's status, such issues are much harder to ignore. The landscape has changed, Sims argues, and the banks must change with it. But not at the expense of donors and of would-be parents.
Registry as Rorschach
Many Europeans thought that by mandating a registry and banning donor anonymity they had solved the problem of offspring not having information about their biological parents. They soon found, though, that parents were getting around the ban by simply not telling their children about the circumstances of their conception. Most national registries release information to offspring only after they turn 18 and make a written request for it. But if the parents don't reveal their status, a donor-conceived woman or man might never know to ask. In Sweden a 2000 study found that almost 90 percent of parents who gave birth to a child conceived via donor insemination after 1985 had not informed their children of their origins.
Activists are now pressuring governments to take further steps. If a citizen has a right to know his donor's identity, they reason, he has a right to know that he is donor-conceived. In the U.K., members of Parliament have proposed that birth certificates should be specially marked to indicate use of donated gametes.
Few people predicted this level of involvement when the original law was implemented, but as Andrea Braverman says, the word registry is like a "Rorschach blot": Everyone sees in it what she wants. There is still a great deal of disagreement over what a registry should do, so Braverman, who has joined Sims' task force, thinks bottom-up incrementalism is the best approach. So does Nanette Elster, director of the Health Law Institute at DePaul College of Law. "Once you have laws, it's very hard to change them. It makes more sense to let things evolve."
For some, change might not come fast enough. Yet as Elster and Braverman note, those who rush to change the status quo often find themselves resorting to ever more intrusive means, which then choke off the use of sperm and egg donations. Clearly, parents who choose to use reproductive technology are being treated differently than those who employ other nontraditional means of producing or acquiring children. The law doesn't require parents to tell their children that they are adopted or that they are the product of an extramarital affair, Elster points out. "We don't question people about how their families come about except in this area," she says.
The use of reproductive technology has long been treated with suspicion. Practices that would be considered mundane were they to occur in the privacy of the bedroom are suddenly made to seem troubling or problematic when they occur in a laboratory. Witness the 2005 Indiana bill that sought to ban single women from becoming mothers "by means other than sexual intercourse." It's by this kind of thinking that "unauthorized reproduction" (in the bill's frightening language) becomes a crime.
Braverman is frustrated by activists who believe that "open is the only model." "Everyone's rushing in to say, 'We know donor-conceived children want to know their donors,' " she says. "No, we don't." She points to research by Joanna Scheib, a psychologist at the University of California at Davis, who has been following the first donor "identity release" program in the country. The program, started in 1983 by The Sperm Bank of California (TSBC), releases a donor's identity to his offspring when the child turns 18. Scheib, along with the sperm bank staff, expected that most offspring would want to meet their donors, but few of the eligible offspring have chosen to. "There are not a ton of people knocking down our doors for identity release," Scheib says. Elster too finds the "openness vs. anonymity" framework exasperating; what's more important, she says, is choice. "There isn't a one-size-fits-all answer here," she says. "Every family is different; every dynamic in a family is different. People might not all want to know."
For those who do, sperm and egg banks are now offering more information about donors and new "open donor" programs. Like TSBC's identity release, these programs provide the donor's name and personal information to the offspring, usually when he or she turns 18. According to a study by Scheib, in 2006 there were three times as many open donor programs in the U.S. as there were in 1996. These voluntarily open programs have attracted much larger donor pools than the government-mandated systems. The reasons for the difference are not yet clear. Scheib thinks the open programs have better recruitment strategies—e.g., staying open later, since donors who don't desire anonymity are usually older and have day jobs. In TSBC's case, successful recruitment may have something to do with the fact that the company accepts gay donors, which most banks don't. (Gay donors are more willing to be identified.) Seventy-five percent of TSBC's donors agree to be part of the identity release program, and Scheib has found that the ratio of open-identity to anonymous sperm donors in a program increases the longer the program has existed.
Sarah will not benefit from these programs, and she is in no hurry to mandate them for the sake of future donor-conceived children who find themselves in situations similar to hers. While she would like to meet her biological father, she says access to the medical records would be enough. "I don't fault the donors for wanting to remain anonymous," she says. "I just think that I have a right to my history."
A voluntary registry would be no panacea. The competing needs of donors, parents, and offspring probably will never be fully reconciled. Still, a move toward greater voluntary openness—through a registry and increased consumer options—would be a step forward. There's a temptation to see "transparency" as the solution to every problem, but as the European experience attests, complete transparency can be destructive, forcing parents to buy gametes overseas or refrain from disclosing their children's status.
What's needed is not blunt government decrees but discretion and delicacy, a way to balance, not eliminate, the conflicting interests involved. A mandated registry would make such balancing impossible. Banks themselves may yet respond with a solution that helps meet the needs of both donors and children while allowing couples to conceive those kids in the first place. Stamping out the sperm banks in the name of protecting their clients would be throwing the baby out with the bathwater.
Cheryl Miller is the editor of Doublethink magazine.