Genetic data, medical records: RFK Jr.’s autism registry under fire

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

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 the supervision of the National Autism Registry to NIH Director Dr. Jay Bhattacharya, known for his controversial stance 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.

The RFK Jr. register has been strongly criticized for being intrusive and stigmatizing. Rights activists and experts alike have denounced 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 remarks 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, never write a poem, never throw a baseball” and that “many of them will never go out on a date”.