For Donor-Conceived People, Data About Biological Parents Can Be Critical

Caren Chesler | February 1, 2019 | Health Care
Proposed measure would help New Jersey’s donor-conceived residents learn more about their medical history without sacrificing donor anonymity

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DNA
Cassandra Adams, 36, found out a little over a year ago that she was conceived with sperm from an anonymous donor. The man she called “dad” was not her biological father. She says she was doing some ancestry research just for the fun of it and submitted a DNA sample to 23andme. It came back that she was half Italian, from her mother’s side, and half Ashkenazi Jewish, which didn’t make sense to her at all. Her father was a Northern European mutt: part English, Dutch, French, and German.

“There was no Jewish. When I came back half Italian and half Jewish, I was suspicious. And then I matched with a half sister. That’s when things got strange,” said Adams, who lives in Jersey City.

She contacted her half-sister, and learned that the woman’s father had indeed donated sperm at one time. When she raised the issue with her parents, they finally came clean and told her that her father had fertility issues, and so they conceived her using donated sperm.

“The only thing (the clinic) told my parents when I was conceived was that they only used the sperm of healthy doctors,” she said.

No questions asked

The clinic claimed to have questioned donors about their medical history. But when she spoke to her biological father, he said the clinic asked him nothing.

“As long as you had sperm, and you didn’t have an STD, you were good to donate,” Adams said.

That’s a problem, because people not only benefit from knowing their medical history, but also it can hurt them not to have it, Adams said, noting that she’s heard of donor-conceived individuals who have suffered or died from medical ailments they could have addressed earlier had they known their families’ medical histories.

“A lot of people went in expecting to remain anonymous. That was as given,” Adams said. “Our position is that we are at least owed a basic medical history.”

Unregulated territory

There are currently no laws on what information a sperm-donation bank must keep. There aren’t even laws on how many times a single sperm donor’s specimen should be used, as there are in countries like the United Kingdom and Norway.

Essentially, the sperm- and egg-donor landscape is largely unregulated, making it hard for donor-conceived people to find out more about their origins — and for donors to remain anonymous. Services like 23andme and the Donor Sibling Registry, a matching site founded in 2000 for donor-conceived people, can ferret out brothers and sisters, which, in turn, can enable donor-conceived people to find their biological parents.

But there’s no state or federal data tracking how many babies are born as a result of sperm donations, and there’s no regulation requiring it. There is also no regulation requiring sperm banks to maintain health records or donor information.

Introducing the rule of law

Assemblywoman Valerie Vainieri Huttle (D-Englewood) is trying to change that. She introduced a bill, dubbed the Reproductive Donation Safety Act (A-3260/S-1037), which mandates that sperm banks apply for a license each year from the state Department of Health; follow standards for collection, storage, and distribution; and limit how much one person can donate.

Donors will also be required to fill out a form with their name and address and an information-sharing statement, in which they say whether they would like to be contacted or to remain anonymous — though in either case, they must provide health records. The information will be used to create a New Jersey Semen Donor Registry.

“I’ve been talking to donor-conceived adults, and the first question they have, frankly, is who are they? Do they have other siblings that they are not aware of?” Huttle said.

Time for a change

Sperm donation has been going on since at least the 1950s, when the fertility doctors themselves donated sperm or found people who would; the children conceived with that genetic material had no idea. After hearing donor-conceived adults tell their stories, she questioned why there weren’t sperm-donor regulations in place. Her bill calls for more transparency and safety, particularly when it comes to disclosing medical records.

“One of the main points of the bill would be for them to be able to find out, are they inheriting undisclosed genetic disorders? Do they have the proper medical information that is vital to them?” she said.

The bill may face an uphill battle. Huttle first introduced it in 2012 and it’s yet to have a hearing. When asked whether it was likely to get one now, Tiffany Smith, the senior press secretary for the New Jersey General Assembly Majority Office, would only say the bill is still under review.

“Bill A-3260 has not been released — or cleared — by the Assembly Health and Senior Services Committee since being introduced on February 12, 2018. This indicates that the bill is still under review,” Smith said.

Huttle’s not pushing her legislation too hard just yet, calling it a work in progress. She’s waiting to see what happens with legislative efforts currently ongoing in Illinois and California. She said there’s a hue and cry beginning to come from donor-conceived people, as they grow in numbers and begin to organize. It may take a grassroots effort on their part to finally make sure regulation keeps pace with science.

Everyone ‘should have the right to know’

That effort is certainly growing. Erin Jackson, 38, of San Diego, created a website in 2016 called We Are Donor Conceived, and followed it up with a Facebook page, which began with just 200 members and is now up to 900.

Jackson found out from her mother just a few years ago that she was conceived using donated sperm. Unlike some donor-conceived people, her efforts to meet her biological father were rebuffed. She sent him a letter and a photo of herself, but when he finally responded two years later, he said he was not interested in communicating with her.

Despite her own traumatic experience, Jackson wanted other donor-conceived people to benefit from the resources she had amassed in her own search.

“I think everyone, regardless of how they were conceived, should have the right to know who their biological parents are,” Jackson said, noting that there’s a reason ancestry.com is a multi-billion-dollar business. “It’s an essential part of being human, wanting to know where you come from.”

“I think that information is rightfully mine. It doesn’t belong to the state or the clinic or anyone but me,” she said