What happens when a sperm donor doesn't disclose a genetic disorder?

If you've decided to build your family via the sperm donor route, it's likely that you're willing to accept that certain things about your child's biological father are going to remain unknown. His favorite sport, for example. Whether he's afraid of heights. How he really feels about his own mother.

But you'd want to know whether or not he had a genetic disorder. A heart defect. That he developed cancer later in life. That's the kind of thing you have to disclose when you donate sperm, right?

Not necessarily.

Tyler Blackwell, 15, found out that his sperm donor father had a heart condition and genetic connective tissue disorder when he finally made contact with his biological aunt. His biological father, she said, he had died at age 43, when his aorta ruptured; two of his uncles and his grandmother also had the same genetic disorder. After a quick trip to Johns Hopkins Medical Center in Baltimore for a baseline screening of his heart, Tyler discovered that he had the same life-threatening heart condition, too.

The donor, whom the Blackwells refer to as "John," had fathered at least 24 children via three different sperm banks. At least half of them could have inherited his genetic disorder. And none of the sperm banks had been notified about it.

Right now, recipient families are not legally entitled to information, including medical information, about the donor whose sperm they choose. And sperm banks and fertility clinics aren't obligated by law to do any genetic testing on their own.

"Donor screening consists of reviewing the donor's relevant medical records for risk factors for, and clinical evidence of, relevant communicable disease agents and diseases." The U.S. Food and Drug Administration's guidelines state. "These records include a current donor medical history interview to determine medical history and relevant social behavior, a current physical examination, and treatments related to medical conditions that may suggest the donor is at increased risk for a relevant communicable disease." They list several contagious diseases, like HIV and Hepatitis B, for which testing is mandatory.

But genetic testing? Testing for diseases like cystic fibrosis or fragile X syndrome? Voluntary, at best-and not always done. And even if testing is conducted, the FDA only requires clinics to keep files on hand for 10 years, which means that adult children conceived via sperm donation may not be able to access that medical information even if it exists.

"There are no rules or regulations about donor identification, testing donors, monitoring numbers of children or medical records," Wendy Kramer, the co-founder of the Donor Sibling Registry, told ABC News. "No one is watching. There are no laws. They don't keep track."

On Friday, a new law goes into effect in Washington state that requires sperm and egg donors to provide fertility clinics with their identifying information and medical history. Under the new law, offspring age 18 and older can seek out their donors, as long as the donors haven't signed an affidavit of nondisclosure. The aim is to give people conceived via donated tissue a chance to solve a future medical emergency, just as people who have been adopted currently can.

In Tyler's case, such information could have helped him years earlier. There's no way to know whether Tyler's 24 half-siblings are aware of their potential medical issues.. "[John] should never have been a sperm donor," Kramer told ABC. "How could such a thing happen in this era of medical advances and an explosion of genomic information about the causes and inheritance of disease, especially in the most medical advanced country in the world?"

But that brings up another, bigger question: If we use genetic screening to rule out potential sperm or egg donors, will regulators eventually insist on genetic screening to rule out people who shouldn't conceive on their own?

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