The U.S. Needs a Sperm Donor Registry

A bioethicist says that the Fox show Almost Family demonstrates just one of the complicated situations born of reproductive technology.

Megalyn Echikunwoke, Emily Osment, and Brittany Snow in Almost Family
Megalyn Echikunwoke, Emily Osment, and Brittany Snow in Almost Family.
Fox Entertainment

What would it be like to suddenly learn that your biological father is not your father and that this stranger had sired dozens, or even 100, offspring who are your half-siblings and whom you’ll begin to meet?

That’s the premise of a new Fox TV series, Almost Family, which explores this dark side of our largely unregulated world of sperm donation. In the show, an in vitro fertilization doctor illicitly fathers “hundreds” of people while prospective mothers think they are being impregnated with sperm from donors. In the show’s opening scene, a daughter, who grew up with the father, meets a man in a bar and they have sex—only to later learn that they are half-siblings. This daughter fights with another woman over the same man, only to discover that they are half-sisters. They soon move in together with another newly discovered half-sister.

It’s a soapy show, and critics haven’t been kind to it. But it’s based on real scenarios: The rise of consumer genetic testing has revealed several doctors who, between the 1970s and 1990s, used their own sperm for their patients without informing the women. Whatever you think about the show’s execution, it offers an opportunity to explore the profound psychological and social dilemmas, as well as the underlying ethical and policy questions, raised by assisted reproductive technologies.

The stories of doctors secretly impregnating patients are uniquely horrifying, but the far more common problems here are associated with the use of sperm banks. Ten percent of all couples are infertile, a rate that’s growing, and about 17 percent of all American women aged 25–44 have used infertility services, which often includes turning to donor sperm. A few large sperm banks dominate the market, with websites letting prospective parents select traits such as hair and eye color, race and ethnicity, occupation, religion, educational degrees, height, and type of hair (curly, straight, or wavy). Companies then ship one or two vials, each containing millions of frozen sperm. Yet little oversight or regulation exists. These companies frequently do not track donors or how many children result from each donor, and they often have accidentally shipped the wrong sperm. One U.S. donor fathered 150 children. A British man has produced 800 and says he wants to hit 1,000.

In the worst-case scenario, half-siblings could thus unwittingly marry each other. In those cases, recessive mutations (such as those for cystic fibrosis or sickle cell anemia) that do not affect them could harm their children. Donors themselves could also later be found to have serious hereditary diseases. In 2006, for instance, it was revealed that a donor who created five children had transmitted a serious genetic mutation. The sperm bank was unable to find and contact him.

Unfortunately, most people created through strangers’ eggs and sperm will never know it. The American Society for Reproductive Medicine, the organization of IVF doctors, “strongly recommends” that parents inform their donor-conceived offspring. But more than 90 percent of heterosexual parents who use strangers’ eggs or sperm don’t tell their children, afraid that their children will love them less, despite research that shows parents should tell their children in age-appropriate ways. If left in the dark, offspring may find out on their own through direct-to-consumer genetic testing companies such as 23andMe and feel betrayed. Or a relative may blurt out in a fight, “He’s not even your father!” Families don’t always keep secrets well.

Medical information about our biological parents can also be critical, helping doctors to gauge our risks for various disorders. Yet some parents who use donor eggs or sperm don’t even inform their child’s pediatrician.

Adults have a right to that information—to their own origin stories. For these reasons, starting in the 1970s, adoption agencies, which had long sealed their records, preventing adoptees and biological parents from ever meeting, changed their policies and now release this information if both parties agree. Today, most adoptions are open, not closed. Yet parents who create a child through sperm donation search through hundreds of potential donors on company websites, looking for one who physically resembles the father, so as to help keep the secret.

Given problems with anonymous egg and sperm donation, Great Britain, Austria, Ireland, Iceland, Switzerland, and the Netherlands have all eliminated donor anonymity. The U.K., for instance, did so in 2009. Despite opponents’ arguments that donations would consequently disappear, the number of donations dipped slightly initially but then returned to prior levels. Ireland, in 2015, established a national registry, mandating that all adults who request copies of their birth certificates are notified that they were donor-conceived.

Unfortunately, in the U.S., anonymity remains the norm. Here, no mandatory registry exists to track who donated their genetic material or who the resultant children are. Sperm banks must screen donors for sexually transmitted diseases but otherwise are essentially unregulated in most states. An IVF patient established a voluntary Donor Sibling Registry for half-siblings to find each other, yet most donor-created individuals never learn that they were conceived in this way and thus do not even know to look.

The American Society for Reproductive Medicine recommends that men not father more than 25 births in a geographic region of 80,000 people. Only in 2018 did the organization recommend that clinics keep permanent records of donors and births, and that donors provide initial nonidentifying medical information. Nonetheless, most donations are still anonymous. Most clinics have also historically failed to follow key ASRM guidelines. For instance, guidelines say that only women over the age of 21 should donate eggs, given the complex issues involved, but clinics often seek donors who are as young as 18. It’s unclear whether or how many clinics and sperm banks now keep permanent records or potentially allow donor-created individuals, as adults, to contact their biological fathers (providing both parties involved agree). Such a guideline would still not prevent a doctor from surreptitiously substituting his own sperm, naturally, but it would make it easier for the offspring to find out about her donor and siblings.

The U.S. should follow the lead of European countries that have adopted more regulations. State medical boards should mandate that IVF doctors follow ASRM guidelines, and sperm banks should be licensed and better regulated. ASRM or other professional organizations should require adherence to guidelines. Donors—who are healthy and generally in their 20s—should provide updates about relevant medical information as they age. Currently, the Centers for Disease Control and Prevention and the Society for Assisted Reproductive Technology seek to collect some data from clinics annually, such as numbers of IVF cycles conducted and children born, but doctors aren’t required to comply. Many physicians fail to provide data, and over time, the amount of unreported information has been increasing. Those clinics that fail to list information have, in fact, been increasing their market share. Presumably, they realize that nonreporting carries no penalty.

The CDC should mandate such reporting and also ask clinics how many sperm donor–conceived individuals they create each year, how many individuals are matched to a particular donor, and how many have requested information.

Some doctors argue that providing such additional information to the CDC will be costly, but the IVF industry has been immensely profitable, with private equity firms rapidly buying up clinics. Electronic medical records can also facilitate such data gathering. Research about donors’, parents’ and these offsprings’ views and experiences regarding these issues is also needed.

The characters in Almost Family present an exaggerated version of the new world we’re navigating, but they highlight the problems that, without additional data and required guidelines or regulation, are only going to worsen. Thousands of us and our friends and relatives were conceived by donors but don’t know it—yet.

Future Tense is a partnership of Slate, New America, and Arizona State University that examines emerging technologies, public policy, and society.