RFK Jr.’s Autism Registry Sparks Fears of Eugenics-Influenced Lists:
The disability community and marginalized groups have legitimate concerns rooted in historical events and current Trump administration policies.
Health and Human Services Secretary Robert F. Kennedy, Jr. linked “environmental toxins” to autism after a new CDC study showed a dramatic increase in the diagnosis of autism in children. Image credit: MSNBC News.
Three weeks ago, US President Donald Trump’s newly appointed Secretary of the Department of Health and Human Services (HHS), Robert F. Kennedy (RFK) Jr., unveiled his plans to exploit federal Medicare and Medicaid records to create a “real-world data platform” that would investigate what he refers to as “the root causes of autism.”
On Wednesday, May 7th, RFK Jr., a notorious vaccine conspiracy theorist, announced that the National Institutes of Health (NIH) would establish his new federal autism database. Mr. Kennedy’s new database will combine Medicaid and Medicare insurance claims with electronic medical records and additional data from the US Centers for Medicare and Medicaid Services (CMS).
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Image credit: Iowa News Now.
Secretary Kennedy’s press remarks on the autism database included his statement, “We’re using this partnership to uncover the root causes of autism and other chronic diseases.”
RFK has frequently pointed to increasing autism rates as proof of an epidemic of a “preventable disease” linked to certain environmental factors. He has promised “some of the answers” to uncover what he refers to as the “root causes of autism” by September 2025.
Dr. Jay Bhattacharya, the new NIH Director and a coronavirus conspiracy theorist who was vehemently opposed to COVID-19 public health mitigation efforts, said, “This partnership is an important step in our commitment to unlocking the power of real-world data to inform public health decisions and improve lives.”
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National Institutes of Health (NIH) Director Dr. Jay Bhattacharya (left) and HHS Secretary RFK Jr. (middle). Image credit: The New York Times.
“Linking CMS claims data with a secure real-world NIH data platform, fully compliant with privacy and security laws, will unlock landmark research into the complex factors that drive autism and chronic disease – ultimately delivering superior health outcomes to the Americans we serve,” Dr. Bhattacharya continued.
The announcements by Kennedy and Dr. Bhattacharya followed previous national public media assurances from other Trump administration officials that President Trump was not interested in the creation of “national disease registries” to “monitor Americans with autism.”
Approximately 36 percent of Americans are enrolled in Medicare or Medicaid, sparking widespread alarm among autistic people and disability advocates, many of whom fear inadequate safeguards for such sensitive private health information held in federal databanks that Mr. Kennedy now has access to.
The HHS Secretary’s long history of peddling false and easily debunked conspiracy theories about autism is influencing some advocates to draw historical parallels with Nazi Germany.
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Helen Tager-Flusberg is the Director of the Center for Autism Research at Boston University. Image credit: Boston University.
Autism advocates note that former German Chancellor Adolph Hitler’s regime targeted people with disabilities early on in its national eugenics campaign.
A petition on Change.org against the plan, supported by nearly 50,000 individuals, states: “We’ve seen this before — in history, in policy, in silence. And history tells us this: You don’t build a registry unless you plan to use it.”
Helen Tager-Flusberg, who directs the Center for Autism Research at Boston University and also leads the Coalition of Autism Scientists, told NPR, “CMS data includes certain information about individuals — age/date of birth, sex, where they live. It is possible to identify a person based on knowledge about these characteristics.”
A statement to the national press from the Autistic Self Advocacy Network (ASAN) read, “Members of this administration have repeatedly used eugenic language to talk about people with disabilities…This makes the administration seem like a particularly untrustworthy locus for a registry to track autistic people.”