RFK Jr.'s autism study to amass medical records of many Americans
The autism study is planning to link confidential data "with broad coverage in the U.S. population" in one place for the first time.
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.
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.
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.
"... a new disease registry is being launched to track Americans with autism ..."
This is unbelievafuckingbly ominous.
It's exactly the sort of thing these conspiracy assholes claim has been done by others too.
Always. It's always projection. Complain about their 'free speech' being violated, then start deporting people for speaking freely, first chance they get. Act like you care too much about the kids to allow drag queens to read books to them in a public library, then support politicians that want to legalise child marriage and send children to work in the mines. Complain about the 'feminazis' acting like all men are rapey, then become the number one fan of Andrew Tate.
At this point, don't believe a fucking word that any of these mouth breathers have to say. And consider any accusation to be a confession.
Reminder: this is the same guy who wants to send neurodivergent people to work camps to "cure" their "addiction" to lifesaving medication.
This reeks of an excuse to register everyone who's on the spectrum in order to make that atrocity reality.
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.
Hmm, Nazis tracking which citizens they consider inferior, while expanding the concentration camps. It might be time to stop them.
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.
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
I'm going to talk to my hospital's IIRB about this. I'm fairly certain the records they can access are related to existing research, and you can demand the IIRB to pull access to this data.
Additionally, so long as it is classified as psychiatric notes, it may be possible to restrict a diagnosis further.
If you have concerns, contact your primary care, your psychologist or psychiatrist. I don't know what good it will do, but any healthcare provider worth their gold will raise it to their IIRB and the IIRB is the one who will be able to prevent this.
Do not sit idle with this one. If you have the means, GTFO of the US.
RFK looking over the Autism data: The health implications are clear!
I feel sick.
Don't let this government know it.
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
No good things will come from this.
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.
D'oh fuck