Sperm-donor children face challenges in learning their medical history
By Emily Shenk,
Two days after giving birth to her first child, 28-year-old Kathleen LaBounty could hardly lift her legs. At first, she thought she had just been too active after delivery, but as her legs grew heavier, it was clear something was very wrong. It took LaBounty — normally a high-energy person — 30 minutes to walk five feet across her living room. The next morning, she was rushed into emergency surgery after a blood clot in her uterine wall began to hemorrhage.
Had doctors known that LaBounty was prone to such clotting — events during the birth of her second child confirmed this — they might have been able to prevent it. But there is a lot about her medical history that even she doesn’t know. LaBounty was conceived using an anonymous sperm donor, and her paternal medical records were not kept.
LaBounty is part of the first documented generation of donor-conceived children: those born in the late 1970s to mid-1980s, when sperm banks began to spread in the United States. These children are now adults, and caring for them has prompted a host of unanticipated issues, ranging from a lack of medical histories to the psychological impact of knowing the circumstances of their conception. Many donor-conceived children are finding out, often only by chance, that they are predisposed to certain illnesses. In one recent case in the news, a donor-conceived teen learned that his biological father, who provided sperm for at least 24 children, carried a genetic disorder that causes a potentially fatal heart defect.
According to the Centers for Disease Control and Prevention, 1 percent of babies born today in the United States are conceived through assisted reproductive technology, a proportion that has more than doubled since 1999. Anonymous sperm donation represents only a portion of these births, and solid statistics on how many children are conceived this way are unavailable because mothers are not required to report how they become pregnant. But as the 2010 film “The Kids Are All Right” made clear, sperm donation and its consequences have become a part of our culture.
In most states, adults who were conceived through sperm donation have no legal right to records about their donor. (This differs from adoptees, who can request access to their birth certificates in some states and can have varying levels of access to medical records.) Before 2005, when the Food and Drug Administration issued donor screening rules — specifying, for example, that sperm be tested for communicable diseases — there were no federal regulations of sperm banks. In addition to FDA regulations, some states have certificate requirements or licensing regulations. But for the most part, the industry has been left to create its own best practices.
Some sperm banks report that they have begun putting in place screening and updating procedures more stringent than the government requires, and the American Society for Reproductive Medicine publishes ethical guidelines regarding sperm and egg donation. But these rules have little value for people such as LaBounty who were conceived earlier.
Yet even for those people there have been changes. In July, a law went into effect in Washington state giving adults the right to medical and identifying information about their sperm donor. Although the law gives donors the option of vetoing disclosure of their identities, it guarantees that offspring will be able to access their medical histories in every case.
“It’s really landmark legislation,” said Naomi Cahn, a family law professor at George Washington University, though there are still questions about how it will be implemented. For example, sperm is often shipped across state lines. “In the absence of federal law,” Cahn notes, “it’s unclear what the rights are of any individual in each state.”
Keeping in touch
Some sperm banks are trying to assist the children they helped create. “As the patients and the offspring are growing and we’re finding out what possible issues there may be, we want to respond to that,” said Michelle Ottey, the director of operations at Fairfax Cryobank and Cryogenic Laboratories in Fairfax. To that end, Fairfax Cryobank has created a program by which donors commit to being identified if their offspring want to find them when they turn 18. About 25 percent of donors are participating.
Fairfax Cryobank also asks new donors to update their medical and personal information annually and has begun contacting old donors with the same request. So far, about 50 percent participate. Mothers of donor-conceived children can access this information on the sperm bank’s Web site, though without learning a donor’s name.
“This is allowing us to keep in touch with our donors even after they’ve stopped donating to let us know how their health is progressing,” said Ottey. “It’s all well and good to have their medical history as an 18-year-old when they’re donating, but we feel it’s just as important that we update that because things will develop over time.”
Greater access to donor records may come at a price. In the United Kingdom and in parts of Australia where sperm-donor anonymity has been banned in recent years, there have been shortages of donated sperm, though this may have been partially a consequence of restrictions on payment for sperm and limits on how many families can be formed using the same donor.
One donor, a 32-year-old from New York, said he donated sperm in 2002 to help pay for graduate school but would not have done so had he been required to update his medical records or reveal identifying information. He looks at sperm donation as a purely financial decision and says he isn’t curious about the children who may have been born using his sperm. “I guess it’s whether you believe in nature or nurture, and I’m much more of a nurture person,” he said.
Kathleen LaBounty, however, may never have the option to know more about her donor. The only information she has about him is that he was a medical student at Baylor College of Medicine, where LaBounty was conceived, sometime between 1979 and 1984. With the help of college yearbooks, she has written to nearly 600 possible donors in the hopes of finding her biological father, but has not been able to find him yet.
She believes that the only way sperm donation should be practiced is if the donors agree to be identified. “I think it’s the only way that is fair for the children,” she said. “Donor-conceived people need to have options available so that they can do whatever feels right for them. There needs to be less emphasis on the parents and the donors and their rights, because the children are the ones who have no say in this entire process — they’re just born into this situation.”
Shenk is an editor and freelance writer in Washington.