Robert F. Kennedy Jr. has been criticized for his plans to utilize private health data for an ‘autism registry’ in the U.S.
The Health and Human Services Secretary came under fire after it was revealed that the National Institutes of Health (NIH) is gathering private medical data to help his study on autism.
Comprehensive medical data from pharmacy chains, lab tests, genomic data, smartwatches, and insurance claims will be used to research autism.
Highlights
- Critics are opposing RFK Jr.'s plan for an 'autism registry' using private health data.
- Data from various sources will be used in a comprehensive autism study.
- Advocacy groups condemned RFK Jr.'s registry as a 'dystopian surveillance project.'
- RFK Jr. has pledged to know autism's cause by September, facing criticism for his timeline.
RFK Jr. plans to use private health data for a study on autism
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“The idea of the platform is that the existing data resources are often fragmented and difficult to obtain,” NIH Director Dr. Jay Bhattacharya said on Monday, CBS reported.
“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.”
Bhattacharya said the NIH is also trying to broaden agreements governing access to data from the Centers for Medicare and Medicaid Services.
Data from both federal and commercial databases will be used.
A new health database is also being developed to monitor Americans diagnosed with autism, and their information will be incorporated into the system.
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Georgia political organizer Seth Taylor, who has autism, strongly condemned the autism registry as “a dystopian surveillance project disguised as research.”
“As someone formally diagnosed with autism spectrum disorder as a toddler—and who has spent a lifetime navigating a world not built for minds like mine—I find RFK Jr.’s plan to track autistic people through a government registry not only chilling, but morally indefensible,” Taylor said.
“What he’s really doing is weaponizing pseudoscience and state power to pathologize neurodivergence,” Taylor continued.
“This registry echoes eugenic projects of the past—collecting data not to empower autistic people, but to diagnose, target, and ultimately eliminate us as we are.”
Image credits: Alex Wong/Getty Images
Advocacy groups have criticized RFK Jr. for claiming that autism is preventable and say he is perpetuating harmful stereotypes about people who are on the autism spectrum.
Several leading autism organizations, including The Autism Society and Autism Speaks, released a joint statement saying research must be guided by experts.
“Claims that Autism is ‘preventable’ are not supported by scientific consensus and perpetuate stigma,” they said.
“Language framing Autism as a ‘chronic disease,’ a ‘childhood disease’ or ‘epidemic’ distorts public understanding and undermines respect for Autistic people.
“Research must be guided by credentialed experts and inclusive of the complexity and diversity of the lived experiences of the Autism community—not redirected by misinformation or ideology,” the statement added.
Experts have criticized RFK Jr.’s pledge that he will know the cause of autism by September
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RFK Jr. has previously promoted theories linking vaccines to autism.
The NIH announcement comes after data from a Centers for Disease Control and Prevention study showed more than 3% of children in the U.S. have autism.
“They’ve again gone up dramatically, just in two years. We have in some states as low as one out of 20 boys having autism, one out of 31 kids,” RFK Jr. said while announcing the findings last week.
“And when I was, in my generation today, the rate of autism was 1 in 10,000. And this is just one disease. This whole generation of kids is damaged by chronic disease.”
Experts have attributed the rise in autism to better awareness, improved diagnostic criteria, and more comprehensive screening, rather than an actual increase in incidence.
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Earlier in April, RFK Jr. said he would know the cause of autism by September.
“We’ve launched a massive testing and research effort that’s going to involve hundreds of scientists from around the world,” he said.
“By September, we will know what has caused the autism epidemic, and we’ll be able to eliminate those exposures.”
The claim was again met with criticism from autism organizations.
The Autism Society said it finds RFK Jr.’s timeline and claim of an autism epidemic “to be harmful, misleading, and unrealistic.”
“Autism is a complex developmental disability shaped by genetic, biological, and environmental factors,” the organization said.
“It is neither a chronic illness nor a contagion, that qualifies harmful language like ‘epidemic,’ and to do so is both inaccurate and stigmatizing. Autistic individuals are human beings who deserve dignity, respect, and equitable civil rights.
“Leading disability organizations, the scientific community, and medical experts agree: more rigorous, science-based research is necessary, not speculation, oversimplified timelines, or diminished transparency.”
At a press conference on Tuesday, RFK Jr. also announced that his department would phase out synthetic food dye.
“We are going to get rid of the dyes and then one by one, we're going to get rid of every ingredient and additive in food that we can legally address,” he said.
RFK Jr. said the move was aimed at addressing chronic disease and improving food supply.