• AngrySquirrel@lemm.ee
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    3 days ago

    Medication records from pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers will all be linked together, he said.

    The NIH is also now in talks with the Centers for Medicare and Medicaid Services to broaden agreements governing access to their data, Bhattacharya said. In addition, a new disease registry is being launched to track Americans with autism, which will be integrated into the data.

    Between 10 and 20 outside groups of researchers will be given grant funding and access to the records to produce Kennedy’s autism studies. Bhattacharya did not give details on how they would be chosen, but said their selection would be “run through normal NIH processes.”

    I don’t want to be on a federal autism registry, especially under this regime. How long before RFK announces his “Final Solution” for the “Autism epidemic”?

        • UniversalBasicJustice@lemmy.dbzer0.com
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          2 days ago

          If you have any history of diagnosis or treatment for ADHD you’re fucked if they get this far. These people don’t care about the differences. I’ve taken stimulants for a decade, and considering the only thing between this administration and those records are a call to Walmart? I’ve got my passport close and am job hunting in Sweden/Germany.

          • Uli@sopuli.xyz
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            2 days ago

            Oh, I’ve got zero history of diagnosis or treatment for anything. But it’s become very apparent I definitely have multiple things lol. I just don’t really see doctors and that will someday be a problem.

            So many people I know have been diagnosed and are on treatments though, and the fact that we’ve already gotten to the stage of disappearing protected classes despite court orders is troubling as hell to put it mildly. I want to believe we can still stop this before the worst happens, but securing a stable life elsewhere is frankly not a bad idea.

      • tischbier@feddit.org
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        3 days ago

        Yeah I’m very very glad I’m “just” ADHD. When I was diagnosed it wasn’t possible to be diagnosed as autistic and ADHD. They didn’t fully change that until I was well an adult. I was more ADHD as a kid so, ADHD it was.

        I didn’t realize until I was middle aged that I’m probably level 1 and on the spectrum as well as ADHD.

        So, it’s like you said, maybe a blessing in disguise. I just don’t want all my brethren and all of my sisters who did get diagnosed to face a horrible fate.

        Us neurodivergent need to stick together. Justice for all.

  • Sir_Kevin@lemmy.dbzer0.com
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    3 days ago

    While the selected researchers will be able to access and study the private medical data, Bhattacharya said they will not be able to download it. He promised “state of the art protections” to protect confidentiality.

    I’m willing to bet this whole database will be leáked within hours.

  • DaddleDew@lemmy.world
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    3 days ago

    “… a new disease registry is being launched to track Americans with autism …”

    This is unbelievafuckingbly ominous.