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extract concerning Donor H898
Rizzo’s children, ages 7 and 6, were at the center of one of the most ethically complex legal cases in the modern-day fertility industry. Three years ago, while researching treatment options for her sons, Rizzo says she made an extraordinary discovery: The boys are part of an autism cluster involving at least a dozen children scattered across the United States, Canada and Europe, all conceived with sperm from the same donor.
Many of the children have secondary diagnoses of ADHD, dyslexia, mood disorders, epilepsy and other developmental and learning disabilities.
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When she first found out about their many half-siblings, she consulted a genetic counselor, who she says told her the odds of so many blood-related children with autism occurring spontaneously was akin to all the mothers “opening up a dictionary and pointing to the same letter of the same word on the same page at the same time.”
“It was the donor,” Rizzo remembered thinking. “It had to be.”
A quick online search for the donor’s profile showed that sperm from a man matching his description was still being sold by at least four companies. She called them all, asking for information about his medical history — and to inform them of the autism cluster — but she says the representatives she reached told her she didn’t have any “evidence” that his sperm was responsible for the autism cases.
She turned to health-care regulators in New York and California, where the sperm banks were based. The response, Rizzo said, was that cases like hers are not part of their responsibility. (A spokeswoman for New York State said her department had no record of Rizzo’s complaint but urged her “to reach out.” A California spokesperson said the state would consider investigating her case as an “adverse event” related to a sperm bank.)
The Food and Drug Administration told her its oversight of the sperm-donor industry is limited to screening for sexually transmitted diseases.
Continues: https://www.washingtonpost.com/health/the-children-of-donor-h898/2019/09/14/dcc191d8-86da-11e9-a491-25df61c78dc4_story.html