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. ” Politicians have started to listen. On July 7, Chris Jacobs, a congressman for New York, introduced a bill called Steven’s Law , a federal law that would require egg and sperm donors to provide certain medical information.

It would also require reproductive tissue banks to verify that information and provide it to recipients, doctors, and resulting donor-conceived persons. If it passes, the law would mandate that any donor report to the bank if they have sexually transmitted infections at the time of donation; what, if any, medical conditions they have been diagnosed with, “including genetic disorders, schizophrenia, and other serious mental illnesses … and intellectual disabilities”; any familial medical conditions; and the name and contact info of any medical professional they’ve dealt with in the past five years. The bill’s introduction was motivated by the story of Steven Gunner, who died in 2020 at 27 after an opioid overdose, having lived with schizophrenia, a serious mental illness with a genetic link.

Steven’s parents, Laura and David Gunner, learned a year after his death that the sperm donor they had used—Donor 1558—had died in a similar manner and hadn’t disclosed that he had been hospitalized for behavioral issues before donating sperm. Stories like Steven Gunner’s are not novel in the donor-conceived community and have led to lawsuits against reproductive tissue banks. In one case, a family in Georgia sued a sperm bank after finding out that the sperm donor used had failed to disclose a schizophrenia diagnosis .

He had also lied about pursuing a doctorate degree and having an IQ of 160—all information the sperm bank failed to verify. In 2012, another couple sued a sperm bank after their child was born with cystic fibrosis, a rare genetic condition, and it turned out the donor wasn’t tested correctly. Some US states have taken piecemeal steps to try to corral the industry into providing information to the donor-conceived community.

In 2011, Washington became the first state to establish a law that requires clinics to collect donors’ medical history and to disclose that information to any resulting child. In June of this year, Colorado became the first state to abolish sperm and egg donor anonymity. As part of that law change, donor-conceived individuals earned the right to learn the donor’s identity when they turn 18, as well as the right to learn non-identifying medical information before that.

And in December 2021, Patrick Gallivan, a senator in the New York state legislature—also prompted by the story of Steven Gunner—proposed a bill that would legally require reproductive tissue banks in the state to verify the medical history of all donors from the past five years. Currently, the American Society for Reproductive Medicine recommends that donors be psychologically evaluated and have given no historical suggestion of a hereditary disease—but these remain recommendations, not binding law. Reproductive tissue banks aren’t required to verify medical records provided by donors, meaning donors can simply lie or omit information.

Even if they do provide the correct information, there’s no requirement to follow up—the medical information provided at the point of donation is just a snapshot of their health at the time and so doesn’t reflect any subsequent diagnoses or medical developments. In 2018, the US Food and Drug Administration rejected a petition that would have required donors to provide post-conception medical updates. Screening for conditions with a genetic basis can slip into ethically murky territory.

“Any time genetics is involved with respect to reproduction does raise disability issues,” says Sonia Suter, a professor of law at George Washington University Law School who studies reproductive technologies. In 2015, the largest sperm bank in the UK was found to be turning away donors with conditions the practice classed as “neurological disorders”—including dyslexia and autism. But in the case of many conditions with a heritable aspect, the role of genetics is still too muddy to inform reputable decisions.

“If we’re talking about something 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 tidy. It’s hard to establish exactly what the risks are.

We don’t really fully know what genes are involved. ” There is also another aspect of changing the law that makes Suter nervous, and that’s eliminating medical privacy protections. Someone’s medical records could include anything, she says—like evidence of an abortion.

For egg donors in a post- Roe world, that could result in criminal charges. “It’s on the one hand increasing the rights of donor-conceived people, which I’m in favor of,” she says. “But potentially using this in the endless battle against reproductive rights with respect to abortion is a very dangerous moment.

” This broad waiver of health privacy protection makes Suter think the bill is unlikely to pass. Regardless, High is convinced the bill could have powerful benefits for people in her situation. She feels lucky she and her doctors caught her tumor in time.

But as she points out, others might not be as fortunate. This law change, if successful, “literally will save lives,” she says. .