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.”

    • andros_rex@lemmy.world
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      23 hours ago

      The school Hans Asperger sent autistic children to:

      Am Spiegelgrund was divided into a reform school and a children’s ward, where sick and disabled adolescents were unwitting subjects of medical experiments and victims of nutritional and psychological abuse. Some died by lethal injection and gas poisoning; others by disease, starvation, exposure to the elements, and “accidents” relating to their conditions. The brains of up to 800 victims were preserved in jars and housed in the hospital for decades.

    • Razzazzika@lemm.ee
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      20 hours ago

      Wonder if they’re gonna rebrand Aspbergers again as ‘the people useful to society’ again.

    • dogs0n@sh.itjust.works
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      1 day ago

      Yes. The nazis tried to cure autism… (/s if it’s not obvious).

      Seriously, why are you comparing this to Nazis.

      • funkless_eck@sh.itjust.works
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        23 hours ago

        Why would you not? Unless you were sure there were checks and balances in places to ensure it doesn’t happen. Say, something like, not tracking disabled people, and/or, not abandoning judicial process and habeas corpus, and/or respect for legal precedence and norms that affirm trust in the process

        • dogs0n@sh.itjust.works
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          23 hours ago

          It does, to me, seem like a violation of privacy (looks like patients have no consent in whether their private data is collected).

          But, personally, I would think there would have been better, non-public ways of doing this if he really wanted to exterminate austistic people, etc.

          It being public, makes me think he wants PR, etc and wants to be the dude to cure autism.

        • dogs0n@sh.itjust.works
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          24 hours ago

          Lool thanks for the diss, I will try to keep my head held up high. Unless it was meant for the original comment, then I can forget about this ;(

        • dogs0n@sh.itjust.works
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          24 hours ago

          I cannot read the entire transcript, but from what I did read, it seems to be talking about how Nazis slaughtered children with autism.

          Maybe you can draw the conclusion that he (rfk) is collecting data on autistic people so that he can slaughter them too, but that seems very far fetched doesn’t it?

          If I’m missing something important from what I didn’t read, please let me know.

          • OmegaMan@lemmings.world
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            24 hours ago

            This administration is already sending innocent people to a concentration camp indefinitely and without a trial.

            That seemed farfetched not too long ago.

            • dogs0n@sh.itjust.works
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              24 hours ago

              I don’t know much about this, but just wanted to thank you for continuing the discussion even though I can’t myself because of a lack of knowlege here.

              Others prefer insults 🥹

          • die444die@lemmy.world
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            24 hours ago

            No, it does not seem far fetched. Look at the shit this administration is doing and wake the fuck up.

  • andros_rex@lemmy.world
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    23 hours ago

    Autistic and other children with exceptionalities are already tortured (and killed) at “troubled teen facilities.”

    These are almost entirely unregulated. There are no requirements that these facilities hire qualified staff, background check their staff, provide evidence based treatments. Children who are marked as mentally ill are not considered reliable narrators, so their accounts of abuse are not believed. (It’s funny - I try to report things that happened to me more than ten years ago, and it’s “too late” - but at the time they called me a liar, called it a symptom and hopped me up on Resperdal. How exactly does a teenager in one of these facilities get help?)

    Turnabout Ranch, the place that Dr Phil sent kids like Bhad Baby to, allowed kids to be hurt.

    There are already things in place that would facilitate an Aktion T4 style program. Southern states especially have horrendous child welfare systems, and children do die in “treatment.”

    • deaf_fish@lemm.ee
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      1 day ago

      The trick here is they don’t actually care if it’s autistics or not. They just want want to create another “other” for society to Target. So you’ll get them blasting this on news all over the United States of America " see this perfectly normal looking heartbeat, this is the autism heartbeat. We needed to put whoever this terrible person is in whatever terrible position we’re going to put them in".

      It’s just like sending people to El Salvador with mom tattoos. They don’t care if they’re in a gang or not.

    • ZILtoid1991@lemmy.world
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      1 day ago

      It’ll be suddenly revealed it’s a general health tracking database, and you’ll be denied healthcare coverage if you’re “not doing your part”, will be used to monitor women’s menstrual cycle to figure out who’s having “illegal abortions”, you’ll be fired for not waking up at 4:30AM to stroke the ego of the CEO, etc., all thanks to Palantir…

  • Phoenixz@lemmy.ca
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    1 day ago

    Well somebody is ready to follow in the footsteps of the great dr Mengele already!

    And with “great” I obviously mean sick psychopath

  • conditional_soup@lemm.ee
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    2 days ago

    I’m going to try and play devil’s advocate here, only because my experience in healthcare suggests to me that this is being sensationalized and there’s already enough legitimately awful shit happening without sensationalizing stuff. Now, do want you want, but if you’ll check my history, you’ll clearly see that I’m not fan of this administration. This doesn’t sound all that different in principle from NEMSIS, which is the US government’s clearing house for EMS patient care reports that it uses for research purposes. I don’t trust RFK, I think he’s going to do something monumentally stupid and just go fishing for a way to blame vaccines, but I don’t think that this is actually a kill list. Besides, what would be the point of them building a kill list?

    Between Palantir building a target list and the NSA mass surveillance program, it would be a huge duplicated effort.

    • polyploy@lemmy.dbzer0.com
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      2 days ago

      It doesn’t have to be a kill list, that’s what you’re not understanding. Medicalizing dissent, creating registries of potential scapegoats and vulnerable people to target or practice on, that’s the purpose. They create an outsider group to stigmatize and then broaden the definition as necessary.

      You need to look at this step within the totality of the conduct of the regime so far. They are already rolling back child labour laws and openly talking about the need for a baby boom. Children are one of the most vulnerable groups in society, especially in conjunction with other factors like a migrant background or being in foster care. How many kids are in precarious situations with either absent or completely disempowered parents?

      They’re already putting unattended children in front of immigration judges without legal representation, if the state simply kidnaps and disappears the children of people it’s trying to deport without due process, what’s to stop them? What do you think these ghouls might want to do with lists of kids?

      What you need to recognize is that this is the sort of registry that would be directly accessible by those surveillance initiatives you mentioned. It’s not duplicated effort, it’s part of the same effort, this is just one of the ways they are trying to define their enemies and undesirables.

      • conditional_soup@lemm.ee
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        2 days ago

        Tbh, there’s so much damage that’s been done, that’s being done, and that’s going to be done, I’m trying to aggressively filter anything that isn’t immediately tangible (the death of due process is immediately tangible, for example) so I don’t get totally overwhelmed. I know that there’s a strategy Bannon taught them, called “flood the zone with bullshit” that relies on producing so much fear, uncertainty, and doubt that it overwhelms and paralyzes the opposition. That’s what I’m trying to guard against.

        • polyploy@lemmy.dbzer0.com
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          2 days ago

          That’s fair and I understand the impulse. The point of flooding the zone is partially to create panic and confusion, but it’s also a way to rapidly scatter a bunch of possible seeds of division or control at once, then focus on tending whatever works best, whatever has the least opposition afterwards.

          There’s absolutely no situation in which a fascist regime making registries of “diseased” children is unworthy of alarm though.

          I point out the vulnerability of kids because fascists always start with their easiest targets. It allows them to normalize, practice, and develop the systems they are building while also instilling fear and eroding opposition. That’s why we have to take this shit seriously from the start, the longer anyone waits the fewer there are around to fight back.

    • SabinStargem@lemmy.today
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      2 days ago

      RFK advocates for people to be forced to work at farms, for the good of their health. You can expect reports of me and other minority folks to be making license plates or being used as forced sex workers.

      • conditional_soup@lemm.ee
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        2 days ago

        My whole family is AuDHD. We’re potentially vulnerable here, but I don’t think that’s where RFK is headed with this. I don’t think he’s planning anything good, but I don’t think extermination is on the menu. I’m still trying to suss out the wellness camp narrative, it doesn’t sound great, but what we know is little and there’s a lot of hype about it.

        • SabinStargem@lemmy.today
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          2 days ago

          Trump is already murdering people by sending them to El Salvador. He and his backers want everyone they dislike to die.

          • conditional_soup@lemm.ee
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            2 days ago

            I know. You don’t have to convince me that they’re evil Nazi bastards. What I’m trying to be cognizant of is the Bannon strategy of flooding the zone with bullshit.

        • HipHoboHarold@lemmy.world
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          2 days ago

          On one hand, I get this

          On the other hand, people have been playing this game ever since Trump was first elected and everyone keeps being shown to be right about them as they go down Hitlers playbook.

          One of the groups that got rounded up were people who had things such as autism.

          The people who think less of those with autism and who think it destroys people and their families are now creating a database of all autistic people

          Hope for the best, prepare for the worst

          • conditional_soup@lemm.ee
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            2 days ago

            Yeah, I agree with that. I’m just trying to keep my head in a post truth world, and I know that there’s a dual incentive to spread misinformation and hype; first on the part of the administration to “flood the zone will bullshit” and paralyze the opposition; second on the part of the media to generate more clicks and get more ads and subscriptions in front of people.

    • frostysauce@lemmy.world
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      2 days ago

      Furthermore, this article cites absolutely no source to the claim that this is part of an “autism registry.”

      I wouldn’t put it past RFK Jr. or this administration but I’m calling bullshit.

  • frostysauce@lemmy.world
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    2 days ago

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

    That’s a pretty big claim for which The New Republic cited absolutely no source. This is bullshit, I hate the Administration as much as anyone here but I’m not falling for this.

    • polyploy@lemmy.dbzer0.com
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      2 days ago

      Here’s a different source for you.

      The National Institutes of Health will begin collecting Americans’ private health records as part of Health and Human Services Secretary Robert F. Kennedy Jr.'s controversial plan to discover a cause and a cure for autism. NIH Director Jay Bhattacharya told a panel of experts about the plan this week.

      The NIH plans to gather information from a wide range of private sources, including pharmacy chains, hospitals and wearable devices with health sensors, like smartwatches.

      “The idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource,” Bhattacharya told the panel, according to The Guardian. “Even data resources that are within the federal government are difficult to obtain.”

      The NIH did not return a request for comment.

      Kennedy has made autism research a central pillar of his role as America’s official health advocate. He has made a number of conspiratorial, anti-science claims, including that childhood vaccinations could cause autism, despite overwhelming evidence to the contrary.

      Earlier this month, he called autism an “epidemic” and vowed to find an “environmental toxin” responsible for the disorder by September.

      “Overall autism is increasing in prevalence at an alarming rate,” Kennedy told reporters at the time. “We’re going to get back to it with an answer to the American people very, very quickly.”

      He further described autism as “a preventable disease.”

      […]

      Bhattacharya, the NIH director, also has a controversial background in the medical community, questioning early on the lethality of COVID-19 and being a vocal opponent to lockdown mandates.

  • santa@sh.itjust.works
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    2 days 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
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      3 days 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
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        3 days 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”.

  • UltraGiGaGigantic@lemmy.ml
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    1 day ago

    I don’t understand why everyone is upset. Aren’t registration lists like totally cool with everyone when it came to firearms? What’s the problem now? I thought they were a good thing!