Egg and Sperm Donors Could Be Required to Share Medical Records

Laura High’s hormones have been out of whack since she was as young as 13 years old. Her period was “all over the place,” so her doctors put her on birth control, but the hormonal issues continued to plague her. As she got older, things only became worse; she was gaining weight quickly and easily, and her anxiety was through the roof. “I could tell something was wrong,” says High, who is 34 years old and works as a stand-up comedian in New York City.

But getting to the bottom of the problem was complicated—since High only knows the medical history of one of her parents. The other, a sperm donor she has never met and knows nothing about, was a medical black box.

In her early thirties, she went to an endocrinologist to get bloodwork done in an attempt to shed some light on the matter. Afterward, she got a phone call she will never forget. “They called me and they’re like: ‘Hey, Laura—so it looks like you have a mass at the bottom of your brain.’” It turned out that she had a tumor on her pituitary gland, the pea-sized structure at the brain’s base that is responsible for making and secreting hormones. “I was like, holy shit.” Luckily, the tumor was benign, and High is now on medication to shrink it. But she felt indignant about not knowing the medical history of her biological father.

In 2018, through a direct-to-consumer DNA test, she found the cousin of her biological father, as well as three half-siblings conceived with the sperm of the same man. It turned out that one of her half-sisters has very serious autoimmune diseases, which are linked to hormones. Both High and her half-siblings have reached out to their biological father in an effort to at least obtain his medical background, even if he does not wish to pursue a relationship—but he has never responded to their efforts to communicate.

While laws vary widely from country to country, the US is notable for how little it regulates its multibillion-dollar fertility industry. And the donor-conceived community—the collective of people born in the US through egg or sperm donation—is clamoring for change.

“So many of us are sitting here looking at the changes happening in Europe and other parts of the world and the UK, and just wondering, when is this going to take hold in the United States?” says Tiffany Gardner, an attorney in Atlanta and vice president of communications for the US Donor Conceived Council, a nonprofit devoted to advocating for the rights and best interests of people conceived through donated sperm, eggs, and embryos.

It’s important to consider the interests of donor-conceived people, says Gardner, who learned at 35 years old that she was conceived via a sperm donor. When a parent’s medical background isn’t known, the donor-conceived person “is often the one most directly impacted—either by developing a condition that possibly could have been prevented with the right screening and the right information, or just not knowing a complete medical history of their family,” Gardner says. This then “reverberates down through generations, and not only impacts us, but it impacts our children as well.”

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