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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]Whats the point of this registry? Why would anyone comply?! [/quote]

You’ve missed a critical piece of this.  It’s not an issue of compliance.  RFK jr’s people will be scraping records containing what is supposed to be confidential information. This ranges from records for people on Medicare and Medicaid—- to records from Pharmacies, private insurance companies, smart watches, fitness devices and other sources.  Apparently without explicit permission.  Those of you who didn’t read the fine print on your 200 page customer agreements for your electronic devices have possibly already given consent though.

It should be obvious, but just in case it isn’t, and sort of data screening like this almost certainly involves looking at all of the data that they can get from any source about everyone that they can. While they might segregate the files of interest, the only way to determine which files are actually of interest is to examine any and all data sets that they have access to.

Who exactly has access to our medical data — and what they decide to do with it at any point in the future —will no longer be under our explicit control. No one is asking for consent here.

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To add, No, I didn’t make up the parts about getting data from smart watches, fitness trackers and pharmacies.  This stands out to me because the link between smart watch and fitness tracker data is what, exactly?

https://people.com/rfk-jr-to-launch-autism-registry-using-private-health-records-11720156[/quote]

Period trackers.[/quote]

That’s one of the things that I was thinking. AFAIK, those aren’t meaningful sources of data to start with if the focus is supposedly on autism. [/quote]

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