Summary

RFK Jr. is using private medical records to create a registry of people with autism in the United States.

The National Institutes of Health is helping to collect private medical records from government and commercial databases, including “prescription records from pharmacies, lab testing, and genomics records from the Department of Veterans Affairs and Indian Health Service, private insurance claims, and data from smartwatches and fitness trackers.”

Kennedy, a longtime critic of vaccination, has made the study of autism one of HHS’s primary goals. He has called autism “preventable” and claimed “he can find a cure for the condition by September.”

  • santa@sh.itjust.works
    76·
    6 hours ago

    This is fucking terrifying. How is this not a HIPAA violation?

    Edit: Fixed spelling. What can we do to protect ourselves and loved ones?!

    • Cuberoot@lemmynsfw.com
      331·
      15 hours ago

      Because it’s called HIPAA, not HIPPA. The second P is the one that stands for privacy.

      Fifty years ago, doctors would protect their patients by accidentally losing certain files if they didn’t think the authorities had a good reason for seeing them. Under HIPAA, they’re required to keep and maintain good records in case the government subpoenas them.

      • partial_accumen@lemmy.world
        15·
        15 hours ago

        For those trying to keep the spelling straight, it helps me to think the last two letters stand for “Accountability Act” meaning it can never be spelled “HIPPA” as there is only one “a”.