Sperm Donor Linked To Autism Cluster -- Scientifically Fascinating, Legally Complicated

Parents turning to donor gametes ought to be fully informed -- or at least not actively deceived -- with respect to their future children’s genetic makeup.

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The Washington Post recently reported on how a single sperm donor has been linked to an extraordinary number of children diagnosed with autism spectrum disorder. The donor is known only by his code name, “H898,” which is how the sperm provider Idant Laboratories designated him. In the Washington Post article, Danielle Rizzo, a mother to two children conceived with H898’s sperm, describes the difficulties she has had with raising her two sons on the autism spectrum, but she’s also faced even greater difficulties trying to prevent the use of H898’s sperm for other patients.

When Rizzo first discovered that both her children were presenting with signs of autism, she reported it to the sperm bank. But she says she was totally brushed off. She then found out about at least 12 other children conceived from the same donor that also presented with signs of autism. She tried the sperm bank again, and then went to the authorities — – the Food and Drug Administration, as well as to heath care regulators in New York and California. Rizzo went to those states because Idant publicly claimed to be regulated by both. But Rizzo says that despite her pleas, no one was willing or able to help.

Ultimately, Rizzo sued the sperm bank.

Rizzo filed her 2017 complaint against Idant in Illinois state court, and Idant removed the case to federal court, in the Northern District of Illinois. In the complaint, Rizzo describes the great lengths that she went to in order to be sure that the sperm she used to conceive her children was safe, and that the donor was fully vetted. She chose Idant because of their promises that they followed the strictest standards, and were regulated by health authorities in both New York and California. She reviewed everything she could find on the company, including finding and reviewing Idant’s Securities Exchange Commission filings! Impressively thorough!

Particularly impressed by H898’s Master’s in Medical Photography, Rizzo tentatively choose him, but called and confirmed with Idant that they verified his background. Who knew that Medical Photography was a specialty?! But Idant assured Rizzo that they verified H898’s background information.

Of course, as these stories go, that was not the donor’s true background. At the time Rizzo viewed H898’s profile he did not, in fact, have a Master’s in Medical Photography. The donor didn’t even have a college degree, for that matter. Additionally, if the sperm bank had done even a little investigatory work, they would have found that H898 had gone to a school for children with learning and emotional disabilities; didn’t speak until he was three years old, and had been diagnosed with ADHD, as well as Pervasive Developmental Disorder (a form of autism spectrum disorder).

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This past spring, the lawsuit ended with Idant making an offer of judgment of $250,000, and Rizzo accepting the offer.

Should Banks Screen For Autism?

There are so many fascinating parts to this case! One is from a scientific perspective. There is so much we have yet to learn about autism. And, of course, about genetically passed traits. Autism is not something that the sperm bank could have tested for. Not to mention, there are those who don’t think autism should be screened, even if it could be. Some argue that this would be a step too far down the road to eugenics and designer babies, since the human population needs to be neurologically diverse. After all, some brilliant and famous people may have been on the autism spectrum — including Albert Einstein, Emily Dickenson, and Steve Jobs.

Rizzo notes that she did not sue simply because her children have autism, but instead to “right a wrong.” Her goal was for more oversight of the sperm banks.

Maybe It’s Time For A Little Oversight?

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Even if the sperm bank couldn’t have screened for autism or didn’t have an obligation to check into the donor’s background, it does seem like they should have done something once they were told about the large number of children showing autism characteristics by the same donor. At the very least, perhaps it would have been appropriate to disclose the issue to future potential buyers of H898’s sperm.

Wendy Kramer, founder of the Donor Sibling Registry, a website connecting donor-conceived persons with their genetically connected relatives, has been arguing for more oversight for decades. Through her work with the Donor Sibling Registry, Kramer has been on the receiving side of countless heartbreaking calls. These include calls from donor-conceived children finding themselves with hundreds of half siblings, to finding out that their mother’s fertility doctor was the “donor” and their biological father. Other countries have passed laws to protect children conceived from sperm and egg donation — limiting the number of children that can be born from one donor, keeping registries with the identity of the donors, and overseeing the entities providing the donation. However, Kramer points out, because most countries now import U.S. sperm (as local donors may be hard to find), local countries’ laws are almost meaningless. Kramer says until accurate records are required to be kept in countries like the United States and Denmark, the other problems can’t be fixed. Requiring accurate recording keeping — that can’t be that hard, right?

I’m certainly concerned with reducing the intellectual diversity of the population. But parents turning to donor gametes ought to be fully informed — or at least not actively deceived — with respect to their future children’s genetic makeup. That might be a more obvious case with other genetic conditions, such as cystic fibrosis. Autism spectrum disorder, understandably, is a little more difficult, since there’s wide variation in severity, ability, and in some cases, even higher-than-average skill levels. However, given how difficult parenting is already, I’m inclined to agree that parents ought to be able to make decisions based on as much as information as possible. So good for Rizzo for vindicating that right.


Ellen TrachmanEllen Trachman is the Managing Attorney of Trachman Law Center, LLC, a Denver-based law firm specializing in assisted reproductive technology law, and co-host of the podcast I Want To Put A Baby In You. You can reach her at babies@abovethelaw.com.