Disability Advocates, Civil Rights Groups Sound Alarm on RFK's Reported Autism 'Registry'

Dozens of public health, disability rights, and civil rights groups on Monday raised "significant concerns" about a walked-back proposal from the National Institutes of Health—an entity within the U.S. Department of Health and Human Services—to create a national autism registry.

Their concern stems from April comments first reported by CBS News from NIH Director Jay Bhattacharya, who said during a meeting that NIH intends to create national disease registries, including one for autism. However, HHS later said it is not creating a national registry for people with autism, walking back Bhattacharya's comments.

However, NIH is moving forward with creating a "real-world data platform," which Bhattacharya also discussed during that meeting. The platform will partner with federal health insurance programs and use information from Medicare and Medicaid in order to determine the "root causes" of autism, according to Health and Human Services Secretary Robert F. Kennedy, Jr.

Kennedy has drawn pushback for his comments about autism in the past, including when he recently cast autism as a "tragedy" and an epidemic that "destroys families."

In a Monday letter addressed to Kennedy, the groups argue that even though HHS has said it is not creating such a registry, "the larger platform's unclear purpose and potential for abuse necessitates that HHS and NIH engage with disability and civil rights advocates and implement fundamental safeguards."

According to New York Timesreporting on the database, it "is not clear precisely what kind of research will be conducted."

David Mandell, a professor of psychiatry and longtime autism researcher at the University of Pennsylvania, told the Times it's "the registry without the word 'registry' in it."

"We are creating a tool, and tools can be used for good and for evil," he also said. "I know a lot of researchers—and I like to think of myself as one—who have used this kind of tool for good. And I'm really concerned that that's not what happens."

According to the letter, lack of clarity around what NIH specifically plans to do has led to "immense concern" among autistic people, their families, researchers, and privacy advocates.

"HHS and NIH's failure to engage with autistic people and autistic advocates has exacerbated this lack of clarity," the letter alleges.

Letter signatories include the American Civil Liberties Union, the Autistic Self Advocacy Network (ASAN), and the Autism Society of America.

The groups outline three steps they say NIH and HHS can take to help establish trust around its proposed platform: "Meaningful communication with autistic people and advocates; fundamental privacy safeguards to prevent misuse and abuse; and ensuring the data platform advances the well-being of autistic people, people with disabilities, and the public health while minimizing potential harms."

The groups wrote that some data collection can enable better understanding of how to meet the needs of people with disabilities, but "disabled people in the United States have a long and troubled history with governmental efforts to find and track disability for the purpose of eliminating it."

"It's no secret that this proposal has created a lot of fear and confusion in the autistic community," said Colin Killick, executive director of ASAN, in a statement on Monday. "We continue to advocate and support research into autism that autistic people want conducted, but it is critical that autistic people's private data not be shared without our consent. We hope the administration answers our questions to shine light on how autistic people and our rights will be protected."