When Laura and David Gunner learned that their 27-year-old son Steven had died of an opioid overdose, the couple were grieved but not entirely surprised. They had struggled to help him overcome his addictions and erratic behavior for over a decade.

Seeking solace in the wake of Steven’s death in 2020, the upstate New York couple joined the Donor Sibling Registry, a website that connects sperm and egg donors with people designed by donor. They hoped to get in touch with the mothers and fathers of other children who, like Steven, had been conceived with sperm from a particular donor sold by a sperm bank in Fairfax, Va.

Donor 1558 had been described in his sperm bank profile as a college student playing guitar and hockey with blonde hair and brown eyes. The gunners were eager to see Steven’s features in the photos of donor 1558’s other offspring. They also wanted to let the parents of Steven’s half-siblings know that he suffered from schizophrenia, a psychiatric disorder that causes hallucinations and delusions, and which can be hereditary.

“I felt compelled to tell other parents about it,” Ms Gunner said, adding that Steven’s 18 half-siblings had been identified.

During interactions with other parents, the Gunners learned disturbing new information about Donor 1558: The handsome athletic music student was diagnosed with schizophrenia and died of an opioid overdose in 2018, at the age of 46 years old. And when Mrs Gunner later connects with Donor 1558’s mother, she learns that he has already been hospitalized for behavioral problems. For unknown reasons, he did not disclose this in a questionnaire he completed before donating sperm.

“The mourning has started again,” Ms. Gunner said. She believes Steven inherited a susceptibility to schizophrenia from his biological father.

Schizophrenia is often inherited, and having a parent with a mental illness increases the risk that the child will have it. But these children are “much more likely not to develop schizophrenia than to develop the disease,” said Dr Niamh Mullins, assistant professor of psychiatry at Icahn School of Medicine at Mount Sinai.

David and Laura Gunner believe their son Steven inherited a susceptibility to schizophrenia from his biological father.

Scientists have devised and rejected many theories about the causes of schizophrenia. Lynn DeLisi, a professor of psychiatry at Harvard Medical School who studies the disease, said scientists have now identified a few hundred genes, including those involved in brain development, which collectively can increase the risk of schizophrenia. Even so, she said, “How schizophrenia is transmitted remains a mystery. “

Researchers are studying possible environmental risk factors for schizophrenia, including heavy marijuana use and childhood physical or emotional trauma. In addition, efforts are underway to develop risk scores for schizophrenia based on genetic data. Such scores are not yet ready for clinical use, experts say. But if they do become available, Dr DeLisi said, “that’s something sperm banks should consider.”

Infertility treatment is a multi-billion dollar global industry, with hundreds of fertility clinics across the United States offering artificial insemination and in vitro fertilization. Despite its size, the industry is poorly regulated.

Steven Gunner was an active, outgoing boy, and his parents had no indication that he might develop schizophrenia.


Photo:

Laura Gunner

Clinics are required by law to track births resulting from IVF but not artificial insemination, experts say, so there is no reliable count of the number of children born after being conceived with sperm. from a donor. And while sperm banks ask donors to fill out health questionnaires, they don’t always verify the information.

Donors earn between $ 100 and $ 150 for each donation, according to Michelle Ottey, director of the consulting lab at Fairfax Cryobank, the sperm bank that sold donor’s sperm 1558. Men are encouraged to alert sperm banks of the problems. important medical conditions that arise after the donation, but do not always do so.

“There is currently no mechanism to ensure reliability beyond the honor system,” said Dov Fox, University of San Diego law professor and fertility industry expert, about the lack of information on the health of sperm donors. “Should we be able to rely on the health and safety of donors as we do in the cars we drive and the food we eat? Or is making babies just a dice game, however you do it? “

The Gunners, once childhood sweethearts who raised Steven and his younger sister in East Aurora, NY, have decided to push for change. They shared their story with their state senator, Patrick Gallivan, in November and encouraged him to draft legislation that would require reproductive tissue banks to check health and other types of information provided by donors. sperm, ova and embryos.

Some of the documents documenting Steven Gunner’s treatment, above, and a family photo album, below.

In December, Senator Gallivan introduced the Donor Conceived Person Protection Act. Under the proposed legislation, donors must waive confidentiality protections so that their medical records from the past five years can be verified.

The Food and Drug Administration requires sperm donors to test for infectious diseases like HIV and hepatitis. Additionally, some sperm banks test potential donors to see if they carry genes associated with rare inherited diseases like cystic fibrosis and Tay-Sachs disease.

But there’s no easy way to identify those at risk for schizophrenia, which is thought to affect around 1% of the population.

The Gunners had no indication Steven might develop the disorder. An active and outgoing boy, he loved listening to music – the Beatles were a favorite – and fishing with his father. He was the captain of his junior football team. He had a close relationship with his sister.

Sea glass jars at the Gunners’ house and a memorial to their son David Gunner installed.

But around the age of 15, Steven grew brooding. He got lost in the pot and the psychedelics and was delusional at times. Steven was diagnosed with schizophrenia at the age of 19.

The Gunners desperately tried to help their son, providing emotional and financial support. But in the years that followed, his parents said, Steven’s behavior became even more erratic. He stood in the yard wearing only a blanket, or had no shoes on the snowy days. Once, after an argument with his father, Steven hopped on a bus to California and was out of touch for so long that his parents thought he might be dead. He was in and out of mental health and drug rehabilitation hospitals and jailed several times, once after being involved in an assault.

Ms Gunner shared some of these sad details with the mother of donor 1558, whose identity was revealed following DNA testing on one of Steven’s half-siblings. In an interview, the mother of donor 1558 said she was devastated to see echoes of her son’s struggles in Steven’s, adding that she didn’t believe her son had tried to mislead the bank of sperm. “When my son died I thought it was over,” she said. “But it’s not. It’s his legacy.

Steven’s death was heartbreaking, said Dr Ottey of Fairfax Cryobank. In the decades since Donor 1558, Fairfax has improved the process of testing and interviewing donors and collecting and verifying their information, she said, adding that the email has also facilitated receipt of regular donor health updates. “We are doing our best to provide very good quality donors and good quality tested donor sperm,” she said. “The reality is that nothing is an absolute.”

Sean Tipton, advocacy and policy manager for the American Society for Reproductive Medicine, said legislative efforts like the one the Gunners are supporting could backfire. Not all medical conditions can be detected in donors, he said, adding that passing such laws could increase the cost of fertility treatments. Additionally, he said, the call for strict control over self-reported health data from sperm donors highlights a larger philosophical question about the control expectant parents can have when trying to conceive. a child.

“You can know everything about someone and that doesn’t tell you what their kids will be like,” Mr Tipton said.

Steven Gunner in December 2019, in a photo used for his obituary.


Photo:

David Gunner

The Gunners are still upset that donor 1558 was taken at his word when he said he had not been hospitalized. But they accepted the contradiction inherent in their advocacy for laws that – if they had been in effect when trying to start a family – would have meant the son they worshiped would never be born.

“We love Steven,” Ms. Gunner said. “But I saw the pain he went through. I would never have chosen that for him.

Steven Gunner died at the age of 27; his gravestone in East Aurora, NY

Write to Amy Dockser Marcus at amy.marcus@wsj.com

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