Robert F. Kennedy Jr. is overseeing a plan to gather knowledge on autistic individuals nationwide, which has drawn backlash from the general public.
In response to stories, the Nationwide Institute of Well being is making a database of Individuals’ non-public well being information according to Well being and Human Providers Secretary Robert F. Kennedy Jr.’s controversial plan to discover a trigger and treatment for autism. The plan will cull knowledge from pharmacy chains and personal laboratories in addition to from authorities businesses such because the Division of Veteran Affairs and doubtlessly from Medicaid and Medicare.
NIH Director Dr. Jay Bhattacharya detailed the plan in a gathering with a panel on the company, based on NPR. “The concept of the platform is that the present knowledge sources are sometimes fragmented and tough to acquire. The NIH itself will typically pay a number of occasions for a similar knowledge useful resource,” he mentioned whereas emphasizing that the info collected can be topic to “state-of-the-art protections” for confidentiality functions.
Robert F. Kennedy Jr. has been persistent in selling his incorrect views on autism, having not too long ago said at a press convention that these identified have “regressed … into autism after they have been 2 years previous. And these are youngsters who won’t ever pay taxes, they’ll by no means maintain a job, they’ll by no means play baseball, they’ll by no means write a poem, they’ll by no means exit on a date. A lot of them won’t ever use a rest room unassisted.” He additionally falsely claimed that vaccinations and environmental elements are the causes.
“Even amongst these with an mental incapacity, there’s enormous variability,” Penn Heart for Psychological Well being David Mandell mentioned, refuting RFK’s autism claims. “Folks with Down’s Syndrome have an mental incapacity, however typically are fairly succesful and might do all of the issues RFK factors to.”
The plan has alarmed many who name it an “autism registry” and liken it to eugenics. “This concept is harmful, unethical, and a critical menace to privateness. Folks with autism deserve dignity and respect—not surveillance by their very own authorities,” New York State Assemblyman Angelo Santabarbara wrote in a submit on X, previously Twitter, including: “I stand with advocates throughout the nation in strongly opposing this proposal.” Santabarbara has a younger youngster identified with autism.
As the daddy of a younger grownup with autism and Chair of the Meeting’s Committee on Folks with Disabilities, I’m deeply disturbed by stories that the U.S. Secretary of Well being and Human Providers is proposing a nationwide registry to trace individuals with autism utilizing non-public medical… pic.twitter.com/qExU3feA6E
— Angelo Santabarbara (@AsmSantabarbara) April 23, 2025
Senior counsel on the Digital Privateness Data Heart Sara Geoghagan touched on the breach of privateness concerned. “The gathering and processing of non-public info, particularly health-related info that may reveal well being situations on this method, is out of context and inappropriate,” she mentioned in an interview.
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