The Risks of a Federal Autism Registry
In April 2025, the director of the National Institutes of Health described a proposal to "develop national disease registries, including a new one for autism." Days later, officers walked again claims that the intention was to develop an autism registry, and as an alternative targeted on plans to create a real-world knowledge platform that may assist researchers get extra full knowledge. This was adopted by an announcement that NIH could be partnering with the Centers for Medicare & Medicaid Services to create an information platform aiming to "uncover the foundation causes of autism and different continual ailments.β
People within the autism neighborhood have expressed concern {that a} affected person registry like this carries potential dangers, together with diminished household and neighborhood belief, threats to knowledge privateness, and perpetuating dangerous narratives.
In immediatelyβs episode, Aaron brings his day job as AcademyHealth CEO into the present, sharing the newest findings, coverage battles, and what all of it means for actual individuals. Special due to Steph Lomangino, Suzanne Farris, and Elizabeth Cope, from whose Academy Health weblog put up this episode was tailored.
Related HCT episodes:
Aspartame and Autism: https://youtu.be/B3yh7-j5i2s
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Credits:
Aaron Carroll — Writer
Tiffany Doherty — Writer and Script Editor
John Green — Executive Producer
Stan Muller — Director, Producer
Mark Olsen β Art Director, Producer