Three families have filed lawsuits at the superior court in Ontario, Canada, against the major American sperm bank Xytex Corporation. All have children fathered by the same sperm donor, Donor 9623—a man who was advertised as “healthy and working toward his Ph.D.,” according to a piece in the New York Times. After learning his identity through a donor sibling group, recipients did some online sleuthing out of curiosity and discovered that he was neither: The man had schizophrenia, a malady that can run in families; had committed a burglary; and had lied about his level of education. Now, the families are suing for about $3 million in U.S. currency each, partly to prepare for the care their children may need if they start to show signs of mental illness. Nancy Hersh, a lawyer for the plaintiffs, told the Times that she represents at least a dozen other American, Canadian, and British families who are planning lawsuits related to the same donor.
Xytex has defended itself against the charge that it misled families, saying that the donor “reported a good health history and stated in his application that he had no physical or medical impairments. This information was passed on to the couple, who were clearly informed the representations were reported by the donor and were not verified by Xytex.”
Many families who purchase donor sperm don’t realize that verification of that nature would be almost unheard of in the world of commercial fertility banks. Regulation of this booming industry is notoriously loose. The Food and Drug Administration requires that donors be tested for certain infectious diseases, including HIV and hepatitis, and interviewed about their medical histories. Most reputable banks, including Xytex, go far above and beyond this standard, screening for the genes that are known to cause some of the most debilitating or fatal conditions, such as cystic fibrosis and Tay-Sachs disease. But banks also rely heavily on the information that donors self-report. Many ask for a family medical history going back two or three generations, but, as a Xytex representative told Self magazine in 2006, “If a donor says his Aunt Pearl died of a heart attack, we take him at his word. … We hope our donors are honest, but it is a risk we run. Sometimes we have kids who are adopted or who are sperm-donor kids themselves and they don’t know. You do the best you can with the information you have.”
Likewise, to verify a donor’s claims about his educational or professional accomplishments, banks may ask for an ID or a diploma and may conduct several rounds of interviews to check for consistency—but attempts to dig beneath the story they’ve been given generally stop there.
The parents who used Donor 9623’s genetic material aren’t the first to learn too late that their children are at high risk for life-changing illnesses. In 2009, the Journal of the American Medical Association published a study about an apparently healthy 23-year-old donor who passed on a genetic heart condition to at least eight of his 22 offspring. One died from heart failure as a toddler. In 2006, the Journal of Pediatrics set off a wave of pieces about the dangers of sperm donation with the story of five children who had inherited a serious blood disease from a donor at a Michigan sperm bank.
In some cases, families say banks fail to deactivate donors—or to notify their offspring—even when multiple reports have suggested that something is wrong. The Self story begins with the tale of Donor 1084 at the Fairfax Cryobank in Virginia, who passed along a disorder that cause allergies, asthma, and eczema so extreme that four of his offspring had skin that “peel[ed] off like an onion,” in the words of one mother. All four of the affected families had separately reached out the bank, in one case as early as 2002—but when Self reported the story in 2006, Donor 1084 was still active, with no warnings on his record. Writer Jennifer Wolff Perrine points out: “With some donors fathering dozens of children—rather than the two or three offspring the average man might have—relatively rare genetic diseases may end up touching many more families than they would have before sperm banking.”
As the sperm banks rightly point out in their own defense, babies made the old-fashioned way are also at risk of unforeseen illnesses: Heterosexual partners who become parents may also be unaware of dangers lurking in their own genetics or unable to predict how their codes will combine. The Fairfax Cryobank writes on its website, “We know that any healthy couple conceiving a pregnancy has a 3-4% chance of having a child with a birth defect. … We cannot guarantee that the risk is zero.”
The government could quantify that risk by starting to collect basic data about how many children are being conceived using donor sperm and about their health, as Yale sociologist Rene Almeling has argued. As Hersh, the lawyer for the families who purchased Donor 9623’s sperm, told the Times: “It is important that the public will be educated about the risks. It is a public health issue.”