Melody Schreiber

US health secretary claims data will be used for research but has not addressed privacy concerns and potential misuse

Autism researchers and advocates are pushing back against the creation of an autism database – meant to track the health of autistic people in a major research study – and pointing to the ways such databases could be misused.

While the US Department of Health and Human Services (HHS) denies it’s a registry, the agency did confirm a sweeping database of autistic people will power a $50m study on autism. The health secretary, Robert F Kennedy Jr, said last week that he plans to announce results from the study within months.

After the US health secretary called for autistic people to be tracked, readers rebuked the idea that ASD is a tragedy

When Robert F Kennedy Jr announced a major project to track the health of people with autism, autistic people and their friends and families reacted with shock and anger.

They also expressed dismay and concern over the US health secretary’s incorrect and “weird” approach to autism spectrum disorder.

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Health secretary is planning wide-ranging monitoring of autistic people’s health record and cuts to disability services

Autism experts and autistic people are pushing back on Robert F Kennedy’s “terrible” approach to autism as the health secretary plans more expansive monitoring of autistic people’s health records and proposes cuts to disability services.

A huge study on autism proposed by Kennedy will draw upon private medical records from federal and commercial databases, and a new health registry will track autistic Americans, CBS News reported on Monday.