RFK Jr.'s autism study to amass medical records of many Americans
RFK Jr.'s autism study to amass medical records of many Americans
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.
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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.
A slide presented by National Institutes of Health Director Dr. Jay Bhattacharya at a meeting of the agency's advisers, discussing the new autism research initiative.
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.
This is eugenics. Also, while there's little we can do about the expansion of the surveillance state, I do think there are some important actions that people can take regarding this. If you live in the US:
1). If you know any autistic people, avoid exposing them to this surveillance to the extent possible. Obviously this will have varying levels of feasibility and usefulness depending on the situation, but in our surveillance state age, a big part of security is just not drawing attention when you can avoid it, including in medical contexts. When possible, discuss the situation with them so you can follow their wishes.
2). If you are autistic, please take this information into consideration. Whether or not you are able to mask at all will obviously factor into whether concealing this information is even possible in most contexts. Nevertheless, in any contexts where it is possible, you may wish to consider doing so. Again, you can't do much about the fact that there's a lot of information out there on just about everyone. But it may be possible in some contexts (for example online, and especially publicly) to avoid purposely drawing attention to that information. And in an age where the information governments have far exceeds their capacity to process and make use of it, that can make all the difference.
Of course, that obviously might not be adequate protection, so you may wish to look into other possibilities. I can't tell you what the specific best options are for your situation. But I do know that most of those possibilities require help from others, whether those others are friends, family, or a group based on helping autistic people. In times like this, knowing who you can trust can be just as important as knowing who you can't.
3). If you suspect you are autistic, you will want to take this information into consideration when determining how or if you seek a diagnosis.