A Grieving Family Wonders: What If They Had Known the Medical History of Sperm Donor 1558?

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Steven Gunner’s biological father, who battled mental illness before a fatal overdose, had mental problems of his own

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Donner 1558 was described in his sperm-bank profile as a guitar- and hockey-playing college student with brown hair and brown eyes. Gunners Donner was eager to catch glimpses of Steven’s features in the photographs of the other offspring of 1558. They wanted to tell the parents of Steven’s half-siblings that he had schizophrenia, a mental disorder that causes hallucinations and delusions—and that can run in families.

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

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In conversation with other parents, the Gunners learned disturbing new information about Donner 1558: The handsome, athletic, music student was diagnosed with schizophrenia and died of an opioid overdose in 2018 at age 46 . And when Ms. Gunner later connected with the donor’s mother in 1558, she learned that she had once been hospitalized for behavioral problems. For reasons unknown, they did not disclose that they had completed a questionnaire before donating sperm.

“The suffering started again,” Ms. Gunner said. He believes that Steven inherited his susceptibility to schizophrenia from his biological father.

Schizophrenia often runs in families, and having a parent with a mental illness increases a child’s risk of developing it. But such offspring are “more likely to develop schizophrenia than not to develop the disease,” said Dr. Niamh Mullins said.

Scientists have formulated and debunked many theories about the causes of schizophrenia. Lynn Delici, a professor of psychiatry at Harvard Medical School who studies the disorder, said scientists have now identified a few hundred genes — including those involved in brain development — that may collectively increase the risk of schizophrenia. . Still, she said, “it’s still a mystery how schizophrenia spreads.”

Researchers are studying potential environmental risk factors for schizophrenia, including heavy marijuana use and physical or emotional trauma in childhood. In addition, efforts are underway to develop schizophrenia risk scores based on genetic data. According to experts, such scores are not yet ready for clinical use. But if they become available, Dr. “It’s something that sperm banks should be considering,” Delici said.

Infertility treatment is a multi-billion dollar global industry, with hundreds of fertility clinics in the US offering artificial insemination and in vitro fertilization. Despite its scale, the industry is loosely regulated.

According to experts, clinics are required to track births as a result of IVF, but not from artificial insemination, so there is no reliable matching of how many babies are born after conceiving with donor sperm. And while sperm banks ask donors to fill out health questionnaires, they don’t always verify the information.

According to Michelle Otte, consulting lab director at the sperm bank Fairfax Cryobank, which sells donor 1558 sperm, donors earn around $100 to $150 per donation. Men are encouraged to alert sperm banks to significant medical problems that may arise after donation but do not always do so.

Dov Fox, a professor at the University of San Diego School of Law and a fertility industry expert, said of the gap in information about the health of sperm donors, “there is no mechanism right now to ensure credibility beyond the honor system.” “Should we be able to count on the health and safety of the donor like we drive in cars and the food we eat? Or is the kids just making a crap, however you do it?”

The Gunners, once a childhood sweetheart who raised Steven and his younger sister in East Aurora, NY, decided to push for change. He shared his story with his state senator, Patrick Gallivan, in November, and encouraged them to enact legislation requiring reproductive tissue to verify the health and other types of information provided by sperm, egg and embryo donors. Banks will be required.

In December, Sen. Gallivan introduced the Donor Conceived Person Protection Act. As part of the proposed law, donors must sacrifice privacy protections so that their medical records for the past five years can be scrutinized.

The Food and Drug Administration requires sperm donors to be screened for infectious diseases such as HIV and hepatitis. In addition, some sperm banks test potential donors to see if they carry genes associated with rare hereditary diseases such as cystic fibrosis and Tay-Sachs disease.

But there is no easy way to identify people at risk for schizophrenia, which is thought to affect about 1% of the population.

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

But around the age of 15, Steven became depressed. He lost himself in pottery and psychedelics and sometimes became confused. Steven received a diagnosis of schizophrenia at the age of 19.

The Gunners did their best to help their son while providing emotional and financial support. But in the years to come, his parents said, Steven’s behavior became even more precarious. He would stand in the yard wearing only a blanket, or be fearless on a snowy day. Once, after an argument with his father, Steven caught a bus to California and remained out of touch for so long that his parents thought he might die. He was in and out of drug rehabilitation and psychiatric hospitals and was repeatedly jailed – once when he was involved in an assault.

Ms Gunner shared some of these sad details with the mother of Donner 1558, whose identity was revealed as a result of a DNA test from one of Steven’s half-siblings. In an interview, the mother of Donner 1558 said that she was devastated to see echoes of her son’s struggles in Stevenage, adding that she did not believe her son had tried to mislead the sperm bank. “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. Otte of Fairfax Cryobank. In the decades since the donation of Donor 1558, Fairfax has improved the process of testing and interviewing donors and collecting and examining their information, she said, adding that email also made it easier to receive regular health updates from donors. It is done. “We do our best to provide really good quality donors and good quality donor sperm,” she said. “Reality is nothing absolute.”

Sean Tipton, chief advocacy and policy officer for the American Society for Reproductive Medicine, said legislative efforts like backing the Gunners could backfire. Not all medical conditions can be detected in donors, he said, adding that enacting such legislation could increase the cost of fertility treatments. What’s more, he said, calls for stricter scrutiny of sperm donors’ self-reported health data expose a broader philosophical question about how much potential parents can control when trying to conceive a child.

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

Gunners are still upset that Donner 1558 was taken at his word when he said he had not been hospitalized. But they have come to terms with an inherent contradiction in their advocacy for laws that – when they were trying to start a family – would mean that the son they loved would never be born.

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

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