Egg and sperm donors could be required to share their medical records

The Hormones of Laura High have been out of whack since she was 13 years old. Her periods were “everywhere,” so her doctors put her on birth control, but hormonal issues continued to plague her. As she got older, it only got worse; she gained weight quickly and easily and her anxiety was through the roof. “I knew something was wrong,” says High, who is 34 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’s never met and doesn’t know about, was a medical black box.

In her early thirties she went to an endocrinologist for blood tests to shed some light on the matter. Then she got a call she will never forget. “They called me and said, ‘Hey, Laura — so it looks like you have a mass at the bottom of your brain.'” It turned out she had a tumor on her pituitary gland, which is the pea-sized structure the base of the brain responsible for making and secreting hormones. “I thought, holy shit.” Luckily, the tumor was benign and High is now on medication to shrink it. But she was outraged at not knowing her birth father’s medical history.

In 2018, through a direct DNA test, she found her birth father’s cousin, as well as three half-siblings conceived using the same man’s sperm. It turns out that one of her half-sisters has very serious autoimmune diseases linked to hormones. Both High and her half-siblings have reached out to their birth father for at least his medical background, even if he doesn’t want to be in a relationship — but he’s never responded to their efforts to communicate.

While laws vary greatly from country to country, what is striking in the US is how little it regulates its multi-billion dollar fertility industry. And the donor-begotten community — the collective of people born in the United States through egg or sperm donation — is crying out for change.

“So many of us are sitting here looking at the changes happening in Europe and other parts of the world and in the UK and just wondering when will that hit the United States?” said Tiffany Gardner, an Atlanta Attorney and Vice President of Communications at the US Donor Conceived Council, a non-profit organization dedicated to the rights and well-being of people conceived by donated sperm, eggs and embryos.

It’s important to consider the interests of donors, says Gardner, who found out she was conceived by a sperm donor at the age of 35. When a parent’s medical background is unknown, the person conceived by a donor is “often most directly affected — either by developing a condition that might have been prevented with the right screening and information, or simply because it isn’t.” knows how her family’s medical history goes,” says Gardner. This “then radiates for generations and affects not only us, but also our children.”

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