RFK Jr.’s autism registry under fire

U.S. Health Secretary RFK Jr. has come under heavy criticism from people on the autism spectrum and many families, various advocates and specialized organizations after his recent statements on autism.

The National Institutes of Health is amassing private medical records from a number of federal and commercial databases to give to Health and Human Services Secretary Robert F. Kennedy Jr.’s new effort to study autism, the NIH’s top official said Monday.

— CBS News (@cbsnews.com) 2025-04-23T01:00:01.059Z

Having recently promised to discover the cause of autism through extensive research by the fall, RFK Jr. plans to roll out a series of measures, including a very contested autism registry.

According to RFK Jr., this national autism registry would aim to collect private medical data from multiple sources, such as insurance records, pharmaceutical information, data from connected watches and genetic analyses of people with autism spectrum disorder.

RFK Jr. has entrusted oversight of the National Autism Registry to NIH Director Dr. Jay Bhattacharya, known for his controversial positions during the COVID-19 pandemic.

Bhattacharya is currently in discussions with several agencies, including the Centers for Medicare and Medicaid Services, to collect sensitive personal data.

RFK Jr.’s registry has been widely criticized as intrusive and stigmatizing. Advocates and experts denounce the massive collection of private data without sufficient safeguards, fearing targeted surveillance of autistic people and political or ideological instrumentalization of this sensitive information.

At a recent press conference as U.S. Secretary of Health, RFK Jr. stirred up controversy by declaring that autism “destroys families” and calling it a “preventable disease”.

His comments were roundly criticized by advocacy groups and experts as stigmatizing and scientifically unfounded.

RFK Jr. went on to claim that autistic children, in his words: “will never pay taxes, will never write a poem, will never play baseball” and that “many of them will never go on a date”.

Comments that shocked many.

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