The federal government’s purported plan to track Americans who have autism, which social media users have referred to as an “autism registry,” has been heavily criticized.
On Tuesday, CBS News reported that the National Institutes of Health—a body within the Department of Health and Human Services, which is headed by Secretary Robert F. Kennedy Jr.—was overseeing the launch of a registry to measure Americans with autism amid a wider plan to collect patient data for autism research.
Newsweek was not able to independently verify CBS News’ reporting and has contacted the NIH for comment.
Why It Matters
Autism is on the rise. According to the Centers for Disease Control and Prevention, in 2022, 1 in 31 children had been identified with autism spectrum disorder. In 2000, 1 in 150 children were diagnosed with autism.
Kennedy has repeatedly spoken about an “autism epidemic” in the U.S., saying the rising number of diagnoses was due to environmental rather than genetic factors—a claim that researchers and advocacy groups dispute.
The health secretary also hired David Geier, a figure previously criticized for treating autistic children with puberty-blocking drugs, to lead a federal study on the causes of autism.
Health and Human Services Secretary Robert F. Kennedy Jr. at a news conference in Salt Lake City on April 7. Health and Human Services Secretary Robert F. Kennedy Jr. at a news conference in Salt Lake City on April 7. AP Photo/Melissa Majchrzak
What To Know
Critics of the reported plan to collect Americans’ private medical records to give to researchers working on Kennedy’s study have reacted in anger.
One user on X, formerly Twitter wrote: “This isn’t about health. This is about control. It’s about fear. It’s about marking people. People like me. Neurodivergent people.”
According to CBS, citing NIH Director Dr. Jay Bhattacharya, data from medication records held by pharmacy chains, private insurer claims and smartwatches would be linked for the Health Department’s autism study.
The study would also use patient data collected by the Department of Veterans Affairs and Indian Health Service. Bhattacharya said people’s confidentiality would be protected.
CBS News reported that a registry to track Americans with autism would be integrated into the data.
Fred Guttenberg, a gun violence prevention activist, wrote on X that the policy was “designed to hurt people.”
Richard Angwin, an X user with more than 190,000 followers, wrote: “RFK Jr.’s autism registry is a chilling overreach, tracking private medical data without consent violates HIPAA and echoes eugenics. It’s not about health; it’s about control. Stop this now.”
What People Are Saying
Health and Human Services Secretary Robert F. Kennedy Jr. said in a statement on April 15: “The autism epidemic has now reached a scale unprecedented in human history because it affects the young. The risks and costs of this crisis are a thousand times more threatening to our country than COVID-19. Autism is preventable and it is unforgivable that we have not yet identified the underlying causes. We should have had these answers 20 years ago.”
Jay Bhattacharya, the director of the National Institutes of Health, told advisers during a presentation Monday: “The idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource. Even data resources that are within the federal government are difficult to obtain.”
What Happens Next
Kennedy has said the Health Department will know the cause of autism by September.
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