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Wicked Blue

(7,885 posts)
Mon Apr 21, 2025, 11:25 PM Monday

RFK Jr.'s autism study to amass medical records of many Americans

Source: CBS

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.

Read more: https://www.cbsnews.com/news/rfk-jr-autism-study-medical-records/

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Lulu KC

(7,842 posts)
1. "Data from smartwatches and fitness trackers"
Mon Apr 21, 2025, 11:28 PM
Monday

Right. How? At least if it's an Apple product, not even the police can get a password for someone's device. If it's not linked to individuals, how will they know?

And I wonder who the external researchers will be.

I shouldn't read this stuff so close to bedtime.

TommyT139

(1,258 posts)
3. Then read this in the morning:
Mon Apr 21, 2025, 11:58 PM
Monday

Seems it's already out there. Private data brokers have been selling it, with only a few states catching up with privacy laws.

Even so, if the federal govt wants to use data, for instance stored in electronic health records, those certainly-highly-quaified-researchers-of-sterling-ethics would probably qualify as the sort of role allowed under HIPAA to access individuals' data, with no need to obtain consent.

https://www.latimes.com/california/story/2024-11-20/how-much-does-your-smartwatch-know-about-you

No paywall:
https://archive.is/xQJL2


TommyT139

(1,258 posts)
5. Wise. ;)
Tue Apr 22, 2025, 12:36 AM
Tuesday

Best not to skew your Fitbit/Oura Ring/Apple Health app data for tonight's sleep!

xuplate

(80 posts)
2. Clinical Study
Mon Apr 21, 2025, 11:54 PM
Monday

Today newatlas.com published info on a clinical study of fecal transplants for children diagnosed with autism. At the beginning of the study 83% of the children were diagnosed as having severe autism. After 2 years only 17% were diagnosed as severe. This very hopeful result contradicts the doom and gloom of RFK’s statements.

Karasu

(978 posts)
6. This is just putting on a show, nothing more. All for the sake of a BS investigation with a predetermined outcome to
Tue Apr 22, 2025, 04:35 AM
Tuesday

legitimize discredited RW conspiracy theories. As if there are any other kind.

Mike 03

(18,403 posts)
8. I think there's more to it than "putting on a show"
Tue Apr 22, 2025, 02:38 PM
Tuesday

At the very least, the government can sell that data to health insurers for an enormous amount of money (illegally of course, but what's new?).

You could completely wreck the lives of most Americans if you knew their private medical histories, or at least blackmail them. An astronomical number of us have health issues or medication regimens we'd be embarrassed to have released to employers, insurers, government agencies that have excessive control over us.

Karasu

(978 posts)
10. A valid point. While I highly doubt that RFK is smart enough to do that himself, he's almost certainly had conversations
Tue Apr 22, 2025, 04:05 PM
Tuesday

to that effect with others in this administration.

Mike 03

(18,403 posts)
9. Health data given over the internet is not private
Tue Apr 22, 2025, 02:48 PM
Tuesday

even if they say it is.

I only learned about this on Bloomberg two days ago, but Weight Watchers, which is declaring bankruptcy, was selling patient data in spite of the fact that it states superficially on its website that it won't. If you read the entire Terms and Conditions, there is a loophole buried deep inside, but nobody has the time to read TAC or interpret the legalese.

So they were asking patients about all their pre-existing conditions, medications, and even eating disorders like bulimia and anorexia. According to Bloomberg, one of the questions they asked had to do with making yourself vomit after eating. That is how personal the data they collected was, and that's the kind of data they sold (or, hell, maybe even gave away).

To trust that anything we provide online will remain private is actual folly.

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