RFK's "Autism Register" - shocking data collection methods

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24 Apr 2025, 5:55 pm

This issue is all over the world media today. It is very important that his invasive intentions are read and fully understood by all autistic people in the USA.

I would be grateful if others will copy and paste the information on WP, as my old computer (rather like its old owner) is malfunctioning.

ASPartOfMe
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24 Apr 2025, 8:29 pm

Ongoing Wrong Planet RFK Jr. threads
RFK JR dated view of Autism
Petition to stop the national registry
hhs vows to find the cause of autism by September?
Varied Autism Advocacy organizations pen statement

A lot of the articles are quoted

CBS News wrote:

The National Institutes of Health is amassing private medical records from a number of federal and commercial databases to give to Health and Human Services Secretary Robert F. Kennedy Jr.'s new effort to study autism, the NIH's top official said Monday.

The new data will allow external researchers picked for Kennedy's autism studies to study "comprehensive" patient data with "broad coverage" of the U.S. population for the first time, NIH Director Dr. Jay Bhattacharya said.

"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. Even data resources that are within the federal government are difficult to obtain," he said in a presentation to the agency's advisers.

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. Advocacy groups and experts have called out Kennedy for describing autism as a "preventable disease," which they say is stigmatizing and unfounded.

By bringing the data into one place, he said it could give health agencies a window into "real-time health monitoring" on Americans for studying other health problems too.

"What we're proposing is a transformative real-world data initiative, which aims to provide a robust and secure computational data platform for chronic disease and autism research," he said.

They are planning a "rapid timeline" to launch the autism research using this data, he said, but did not give specifics on when it would start or how long the studies would take.

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25 Apr 2025, 1:11 am

No way in hell are my or my daughter's names going on any Goddamn register!

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25 Apr 2025, 3:28 am

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SendInTheClowns
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25 Apr 2025, 5:08 am

Kraichgauer wrote:

No way in hell are my or my daughter's names going on any Goddamn register!

They are even mentioning collecting information from smart watches autistic people wear. I assume that would include stealing data from smart watches worn by children. Do USA privacy laws actually/legally allow this? It would be considered outrageous in my country, where privacy is taken quite seriously. It can't be messed with on the whim of some nutter.

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25 Apr 2025, 7:45 am

They seem willing to make executive orders that are likely to be struck down by the courts.
But, that takes time and money to sort out. Lots of money for the lawyers.

In previous administrations, each case would have teams of lawyers representing the government.
Now, there are so many cases they seemed to be stretched thin to the point where the government "doesn't know."

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25 Apr 2025, 11:22 am

The proposed DB is designed to set us up for discrimination and stigmatization.

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King Kat 1
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25 Apr 2025, 11:49 am

https://www.rollingstone.com/culture/cu ... 235324301/

I don't have an official diagnosis myself, but this makes me not want to get one. Having a potential employer having access possibly to this kind of thing or other things much worse.

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25 Apr 2025, 12:09 pm

The Ottawa Police once had an autism registry that they claimed was to protect the vulnerable. I once considered signing up until a friend strongly advised against it. His reasoning was that anyone listed could be in danger if the information fell into the wrong hands or a dictator came to power wanting to get rid of "undesirable" people.

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25 Apr 2025, 12:10 pm

King Kat 1 wrote:

https://www.rollingstone.com/culture/culture-features/rfk-jr-autism-registry-response-anger-1235324301/

I don't have an official diagnosis myself, but this makes me not want to get one. Having a potential employer having access possibly to this kind of thing or other things much worse.

I'm actually diagnosed, and have the same worries.

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King Kat 1
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25 Apr 2025, 12:20 pm

Tim_Tex wrote:

King Kat 1 wrote:

I'm actually diagnosed, and have the same worries.

Yeah I mean I'm high functioning, I own my home, work a full time job, and am not on any kind of government aide whatsoever. Admittingly I am suffering burnout in middle age but still I can pass for NT despite most people knowing something is " off" about me.

As said, being denied job, denied a loan for something (car home..), being forced to go through therapy or be institutionalized, or God knows what else. I hate to be melodramatic here or going into conspiracy theory land but I trust this administration as far as I can throw em.

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25 Apr 2025, 3:25 pm

^^^
Nothing at all melodramatic about that sentiment, my friend. Actually, you're being quite reasonable.

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25 Apr 2025, 4:04 pm

https://www.usatoday.com/story/news/hea ... 269805007/

we are getting their attention. A number of revised statements have been issued recently, keep messaging, calling, writing open letters I love that many of the big autism groups got together to issue public declarations and to educate. Don't stop, keep it moving. NIH/Health department is getting educated.

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SendInTheClowns
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25 Apr 2025, 5:08 pm

It seems to me that RFK's core aim is to "prove" his belief that vaccines cause autism is correct. Given the person he has hired to do the "data analysis", I think you could say it is a certain bet that RFK will get exactly the result he wants. The analyst-to-be is David Geier, a long term fanatical believer that vaccines cause autism. Google him and you will find he was caught practising medicine in the past without a licence. So we already know he is someone who has cheated and deceived for his own benefit, and is likely to keep doing so for a sizeable financial reward from the Trump administration, Trump also thinks autism is caused by vaccines so this study definitely "will prove it".

The eventual "scientific breakthrough" will be biased and rigged, and how Trump might use those findings is very concerning.

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25 Apr 2025, 8:22 pm

SendInTheClowns wrote:

In that case, we will see how much longer Musk claims to be autistic.

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25 Apr 2025, 9:13 pm

I was thinking the same

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