In most parts of the United States, donors are not obligated to disclose potential heritable health status. A proposed law could change that.
Laura-high hormones have been out of whack since she was 13. Her period was“Everywhere,” so her doctor gave her birth control, but hormonal problems continued to plague her. It got worse as she got older; she gained weight quickly and easily, and her anxiety peaked. “I could see that something was wrong,” Gao, 34, said.
But figuring out the root of the problem is complicated — because High only knows the medical history of one of her parents. The other, a sperm donor she had never met, knew nothing about, was a medical black box.
In her early thirties, she went to an endocrinologist for a blood test to try to understand the problem. Then she got a call she’ll never forget. “They called me, and they said, ‘Hey, laura-so it looks like you have a lump at the bottom of your brain. ‘” as it turned out, she had a tumor on her pituitary gland, a pea-sized structure at the base of the brain that makes and secretes hormones. “I thought, oh my God.” Fortunately, the tumor was benign, gao is now receiving medication to shrink it. But she was outraged that she did not know her biological father’s medical history.
In 2018, through a direct-to-consumer DNA test, she found her biological father’s cousin and three half-siblings conceived with the same man’s sperm. It turned out that one of her half-sisters had a very severe autoimmune disease, which is linked to hormones. Gao and her half-siblings had both contacted their biological father, trying to get at least his medical background, even if he didn’t want to pursue a relationship-but he never responded to their communication efforts.
Although the laws vary widely from country to country, it is notable that the US has so little oversight of its $1 one billion fertility industry. And the community of donors-those born in the United States through egg or sperm donations-is clamoring for change.
“A lot of us are sitting here, looking at what’s happening in Europe, the rest of the world and the UK, just wondering, when is this going to take hold in the US?” Said Tiffany & Co..Gardinerr, an atlanta-based lawyer and vice-president of communications at theUSsDonorrFertilityyCommissionn, the Council is a nonprofit organization that works to advocate for the rights and best interests of those who conceive through sperm, eggs and embryos.
Gardiner said it was important to consider the interests of the donor when she learned at the age of 35 that she had been conceived through a sperm donor. Gardiner said that when the parents’ medical background was not known, sperm donors“Are often most directly affected-either by diseases that can be prevented with the right screening and the right information, or by not knowing their family’s full medical history”. And then, “Through the efforts of generations, it affects not only us, but also our children.”.
Politicians are already listening. On July 7th Chris Jacobs, a New York state senator, introduced a “Stevens Act”, a federal law that would require egg and sperm donors to provide certain medical information. It will also require the reproductive tissue bank to verify this information and make it available to recipients, doctors and those conceived by the resulting donors. If passed, the law would require any donor to report to the bank whether they had a sexually transmitted disease at the time of the donation and, if so, what disease they were diagnosed with, “Including genetic disorder, schizophrenia and other serious mental illnesses… and mental retardation”; Any familial disease; and the names and contact information of any medical experts they have had contact with in the past five years.
The bill was prompted by the story of Stephen Gunnar, a 27-year-old schizophrenic who died of an opioid overdose in 2020, this is a serious mental illness associated with genetics. Stephen’s parents, Laura and Davy Gunnar, learned a year after his death that the sperm donor they used — donor 1558 — had died in a similar manner, he did not disclose that he had been hospitalized with behavioral problems before donating sperm.
Stories like Stephen Gunnar’s are not new in the donor pregnancy community and have led to lawsuits against reproductive-tissue banks. In one case, a family in Georgia sued a sperm bank after discovering that the sperm donor they used did not disclose a diagnosis of schizophrenia. He also lied about having a phd and an IQ of 160, all of which the sperm bank did not verify. In 2012, another couple sued a sperm bank because their child was born with cystic fibrosis, a rare genetic disorder, only to find that the donor had not been properly tested.
Some states have taken piecemeal steps to try to steer the industry toward providing information to groups conceived by donors. In 2011, Washington State became the first state to pass a law requiring clinics to collect a donor’s medical history and disclose that information to any pregnant child. In June, Colorado became the first state to abolish the anonymity of sperm and egg donors. As part of the change in the law, individuals who became pregnant were given the right to know the identity of the donor when they reached the age of 18, as well as the right to have access to non-identifying medical information prior to that time. And in 2021 December, Senator Pattrick, also inspired by the story of Stephen Gunnar, the New York State Legislature, introduced a bill, the state’s reproductive tissue bank is legally required to verify all donors’ medical histories for the past five years.
Currently, the American Society for Reproductive Medicine recommends psychological evaluation of donors and does not give historical hints of genetic disorder — but these are still recommendations, not binding laws. The reproductive tissue bank does not need to verify the medical records provided by the donor, which means that the donor can simply lie or omit information. Even if they provided the right information, there was no follow-up-the medical information provided at the time of donation was a microcosm of their state of health at the time and therefore did not reflect any subsequent diagnosis or medical development. In 2018, the Food and Drug Administration rejected a petition asking donors to provide medical updates after conception.
Screening for diseases with a genetic basis can run into ethical ambiguities,” said Sonia Suter, a University of Washington School of Law law professor who studies reproductive technology. In 2015, the UK’s largest sperm bank was found to have rejected donors classified as “Neurological disorder”, including those with dyslexia and autism. However, for many inherited diseases, the role of genetics remains obscure, “If we’re talking about a disease like cystic fibrosis, that’s pretty clear,” Suter says, “But when you’re talking about something like autism, yes, there’s a genetic component… … but it’s not neat . It is difficult to determine what the specific risks are . We don’t really know which genes are involved.”
Another aspect of the change that makes Suter nervous is the removal of medical privacy protections. She said a person’s medical records could include anything, such as evidence of an abortion. For post-Roy egg donors, this could lead to criminal charges,” she said, “But this is a very dangerous time to be able to take advantage of this in the never-ending battle against abortion for reproductive rights,” Suter said, adding that this broad retreat from health and privacy protections made the bill unlikely to pass.
In any case, Gao believes the bill could bring powerful benefits to people in her situation. She felt lucky that she and her doctor had found her tumor in time. But as she points out, others may not be so lucky. If successful, she said, the law reform“Will actually save lives.”.
