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is overseeing a plan to collect data on autistic people nationwide, which has drawn backlash from the public.
According to
reports, the National Institute of Health is creating a database of Americans’ private health records in line with Health and Human Services Secretary Robert F. Kennedy Jr.’s controversial plan to find a cause and cure for autism. The plan will cull data from pharmacy chains and private laboratories as well as from government agencies such as the Department of Veteran Affairs and potentially from Medicaid and Medicare.
NIH Director Dr. Jay Bhattacharya detailed the plan in a meeting with a panel at the agency, according to
NPR. “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,” he said while emphasizing that the data collected would be subject to “state of the art protections” for confidentiality purposes.
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Robert F. Kennedy Jr. has been persistent in promoting his incorrect views on autism, having recently stated at a press conference that those diagnosed have “regressed … into autism when they were 2 years old. And these are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted.” He also falsely claimed that vaccinations and environmental factors are the causes.
“Even among those with an intellectual disability, there’s huge variability,” Penn Center for Mental Health David Mandell said, refuting RFK’s autism claims. “People with Down’s Syndrome have an intellectual disability, but often are quite capable and can do all the things RFK points to.”
The plan has alarmed many who call it an “autism registry” and liken it to eugenics. “This idea is dangerous, unethical, and a serious threat to privacy. People with autism deserve dignity and respect—not surveillance by their own government,” New York State Assemblyman Angelo Santabarbara wrote in a post on X, formerly Twitter, adding: “I stand with advocates across the country in strongly opposing this proposal.” Santabarbara has a young child diagnosed with autism.
Senior counsel at the Electronic Privacy Information Center Sara Geoghagan touched on the breach of privacy involved. “The collection and processing of personal information, especially health-related information that can reveal health conditions in this way, is out of context and inappropriate,” she said in an interview.
