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.”

  • @[email protected]
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    4 months 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.”

  • @[email protected]
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    484 months ago

    Get ready my fellow autists, for you are the new jews, this time in magastan instead of Germany.

  • @[email protected]
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    774 months ago

    I’m more worried about why he’s doing it, than that he’s doing it to be honest, because the only realistic use case I see for this is eugenics.

    • Pyr
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      144 months ago

      The only result they will find is that autism diagnosis happens more often in areas where it’s socially acceptable o go see a doctor for concerns about mental health. Deep red states will have “less” autism because hardly anyone will be going to the doctor and expressing concerns that they may have autism, and then they just go undiagnosed.

    • @[email protected]
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      704 months ago

      In 1936, three years after taking power, the Nazis ordered families with a mentally or physically handicapped person to send them to nearby hospitals for the best treatment. Soon after, they started receiving letters that their loved one had passed away.

      The first to notice the pattern was the clergy, who realized that the families in their congregations who had vulnerable members were ALL getting these letters, and they rightfully concluded that a euthanasia program was going on.

      Many spoke out from the pulpit, demanding an end to this atrocity, and Hitler responded, saying he was shocked at this revelation, and promising to end it. He didn’t, of course, he just buried it, expanded it, and evolved it into the Holocaust.

      To Nazis, the best way to reduce the statistics of autistic people, is to reduce the numbers of autistic people, and the first step in doing that is to compile their names.

      Of course, the real issue is HOW are they going to reduce the autistic population? Considering how much MAGA openly admires the Nazis, it’s not hard to make an educated guess.

      • @[email protected]
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        4 months ago

        They don’t even have to kill anyone on purpose. They just have to force people to undergo experimental autism cures, which have historically killed patients. An example of this would be chelation therapy, aka using the medication used to remove heavy metals from the body under the (unconfirmed) assumption that autism is caused by heavy metals.

        If a database is good enough to connect pharmacy records, medical records, and even health info from smart watches (which a doctor or insurance company would not have access to) then it would need to link patient info together in a way that’s not as anonymous as they claim it to be. Theoretically, this could be enough information to force someone into doing these experimental treatments in order to keep their driver’s license (even if they’re otherwise high functioning enough to not be hospitalized) or force someone to be hospitalized with promises of being taught to be more independent later down the line.

        • @[email protected]
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          24 months ago

          They don’t even have to experiment on people, they just have to forcefully sterilize them.

        • lechekaflan
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          4 months ago

          They don’t even have to kill anyone on purpose.

          They intend to starve the disabled financially as community outcasts.

          • @[email protected]
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            14 months ago

            What are you saying? That the poor are outcasts looked down upon by the vast majority of people regardless of their political beliefs?

  • @[email protected]
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    144 months 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.

    • @[email protected]
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      244 months 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.

    • @[email protected]
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      474 months ago

      Next will be ADHD people… and I’m sure they all will be sent with a camp, that will help them focus… a concentration camp if you will.

      • partial_accumen
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        534 months ago

        A camp? Its not like he’s ever suggesting sending people to camps before. Oh wait:

        source

        See? Its not a camp, its a “wellness farm”. Aren’t you relieved now? /s

        • @[email protected]
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          34 months ago

          So while RFK Jr. is dangerously and stubbornly doing some wrong stuff, this at least conceptually wasn’t a horribly dangerous idea, though perhaps uselessly naive.

          It was proposed as a voluntary sort of facility that someone could go do if they chose, and from how it was described, ability to leave whenever they felt like too.

          Generally speaking, I view RFK Jr as dangerous due to his convictions, naivete, and belief in some gnarly conspiracy thearies, but not intentionally malicious.

  • frustrated_phagocytosis
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    154 months ago

    OK, how are they getting consent for this from the subjects? I do basic research with tissue from patients and if they change their mind and revoke consent, we are legally obligated to destroy any remaining tissue or data.

    • @[email protected]
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      74 months ago

      Based on recent history, Trump will declare some sort of national health emergency that will allow him to ignore laws and court orders that get in his way.

  • @[email protected]
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    244 months ago

    Why is it so hard for some people to believe that there is genetic variation in the human brain?

    • @[email protected]
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      24 months ago

      Some believe that their way of thinking, their neurological tendencies are the “right way” to do things in life. Others who arent like that are wrong in their eyes. Same with skin color and religion.

    • @[email protected]
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      184 months ago

      Because the genetic variation is confused and muddled by foundational things they can’t understand.

      Simple things like family structure and the importance of it. A lot of autism overdiagnoses are purely from the developmental differences; economic class, quality of life, nutrition, exposure, and obviously parents or lack there of.

      For example, simple acts like kids getting to play in the dirt exposes them to beneficial bacteria. Which I could also see laying the groundwork for gut bacteria. With how common kids do try and eat it, along with developing nations cooking with it, seems at least conceptually plausible.

      I believe in autism and am not denying its existence as my fiancée has autism.

      I am more saying that there is a huge upbringing differential that can cause kids to experience trauma. Trauma that can give the same responses. Social media enables this issue by pushing kids who don’t have access to self identify, pushing a false representation. However, it is good for kids to be trying to put the pieces together - they just need help.

      • @[email protected]
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        114 months ago

        Trauma that can give the same responses.

        That’s me! Early in therapy for CPTSD, we spent some time trying to determine if I’m autistic or just have autistic tendencies due to CPTSD. Turns out it was the latter.

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    284 months ago

    This is just them preparing the launchpad for further mass surveillance programs. First, they’ll poke around with innocent sounding programs, testing the waters to see how much data they can sniff out of different private databases without anyone noticing. They’ll claim it’s for the good of autistic people. They’ll enact legislation to further cement their practices of data gathering. If their proof of concept turns out to be delivering results, they’ll keep going.

    Slowly they’ll keep tracking all kinds of people they deem as “ill”. They’ll start with vilified minorities that can’t fight back. Most likely trans people. Then the rest of the queer community. Of course, they’ll claim there’s no ill intent in gathering this data, after all, it’s not like they’re going to commit any vile acts.

    And slowly but surely, once the public debate around these minorities turns even more sour, you’ll have them enacting all kinds of laws, and these databases will prove to be quite handy tools in aiding their goals.