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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”?
Sounds like not being diagnosed is a boon.
I am fairly certain I fall somewhere on the autistic spectrum. Somewhere at the top end on the mild/high-functioning/low-support-needs/however-you-want-to-describe-it.
I’ve never felt a need to pursue a diagnosis, I don’t think putting it on paper and making it official has anything to offer me that’s worth the aggravation of dealing with extra doctors appointments and such to get diagnosed.
But I’ve occasionally considered doing it so that I could potentially participate in any sort of research being done that might possibly help autistic people with higher support needs. That would be worth the aggravation.
But holy fuck does this administration make me glad I never did.
I always had a little paranoia that a diagnosis would be more trouble than it’s worth beyond just the annoyance of getting diagnosed. That somewhere I’d encounter some bullshit regulation where I’d be considered mentally unfit for something, or be disqualified from a job, or just have people treating me different if they found out.
But now it’s very clear that that’s sort of the plan, where a diagnosis would probably be actively used against me instead of just being the result weird edge cases where I might slip through the cracks due to some outdated poorly worded policy.
Just as bad if not worse, they’ll come up with some bullshit treatment that is at best useless and at worst harmful, and if you don’t submit your autistic children to it you’re “abusing them”.
“… a new disease registry is being launched to track Americans with autism …”
This is unbelievafuckingbly ominous.
UHG. this makes me ill.
Particularly because I do not want to participate in medical studies without my consent. Unfortunately, your doctors have been filing your private health data in for study for a fairly long time.
This isn’t just about medical studies. They don’t need “a new disease registry” “to track Americans with autism” in order to do medical studies…
In addition, a new disease registry is being launched to track Americans with autism, which will be integrated into the data.
It’s for using it to remove undesirables.
RFK is a eugenics asswipe. He’s going to be using it to harm people.
Which, way back when I got into this row with my ex-doctor, it was “I want to maintain control of my data, I don’t want people using it without me knowing or without my consent.”
He laughed saying exactly this would never happen and I was being paranoid.
when a doctor sees you, even if nothing eventful goes in during the appoint, they have to write up a summary of your whole visit, if you ever get a chance to see your medical records, they will have pages and pages of you, even if you had a short visit, said certain symptoms that dont match.
Lawmakers in Republican states have already been doing this. They got caught. I tried to warn people about this a year ago. They thought I was a nutter. I’m tired of being right.
I noticed you noticing
Just the fact these mediocre people want to handle so much delicate data should be enough to call for a General Strike…
Americans are now the personification of the myth of the idiot who thought cruise control was self-driving; set it up in his RV and went to the back to take a nap
Ah a registry to track undesirables. Jesus fucking christ.
You know if you allow this, they’ll expand it to other groups as well, right? I am constantly amazed that full-blown riots haven’t started. Peaceful protesting isn’t doing it, you guys.
Unless of course you’re all just very excited for those arm tattoos.
RFK looking over the Autism data: The health implications are clear!
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