Researchers and parents are sounding the alarm over an autism database the U.S. Department of Health and Human Services (HHS) is building for a major research study.
The agency denies the database is a registry, saying it would be used only to power a $50 million study whose results health secretary Robert F. Kennedy Jr. has promised within months, but advocates and researchers fear it could be misused, and tens of thousands of people have signed a petition against its creation, reported The Guardian.
“I’m a quiet person who likes to just be in the background,” said first-time petition creator Ryan Smith, a parent of two neurodiverse children who lives in Idaho. “But I feel really, really, really strongly about this, and I have to speak up for my kids who can’t speak for themselves.”
The petition gathered 35,000 signatures within 24 hours, and HHS seemingly backed off the plan after 50,000 people signed on.
“We are not creating an autism registry,” an HHS spokesperson said.
However, advocates say the "real-world data platform" could worsen the stigma around autism and prevent families from seeking diagnoses and care. They compared the database to policies enacted by Nazi Germany, which first targeted disabled people for elimination in the Holocaust.
"At worst, I worry that we’re on a slippery slope to eugenics,” Smith said. “My mind immediately goes to history and things that happened in Nazi Germany. That’s extreme, but it feels like a possibility.”
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Amy Marschall, a psychologist with autism, shares Smith's concerns.
“Are you going to use this as an excuse to take away my rights, to hold me against my will, to prevent me from having children, to take away my right to manage my own finances?” Marschall said.
Seven states — Delaware, Indiana, North Dakota, New Jersey, Rhode Island, Utah and West Virginia — already maintain mandatory autism registries, and the National Institutes of Health is exploring partnerships with other federal agencies, as well as pharmacy chains and insurance companies, to build the database.
“Why do you need my confidential information that I didn’t consent to give to you?” Marschall said. “Nobody is saying: ‘Don’t research us.’ Nobody is saying: ‘Don’t find ways to make our lives better.’ It’s: ‘Don’t research us without any of us on your research team – and find ways to support us, not ways to eradicate us.’”