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Canceled appointments, pleas to shred records: Talks of autism registry put families on edge (www.jsonline.com)

submitted 3 months ago by alyaza@beehaw.org to c/usnews@beehaw.org

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When Dr. Amy Van Hecke picked up the phone on April 24, she was surprised to learn of a parent who wanted to discontinue a planned evaluation of their child's autism.

Losing a spot on the waiting list ― which can sometimes stretch years ― risks setting the treatment of a child back significantly, Van Hecke said.

Another call came into Van Hecke's clinic with a separate but related request: a family wanted their medical records destroyed.

Prior to the election of Donald Trump, such requests would have been unthinkable. But in the wake of the new administration's approach to privacy issues in general, and U.S. Health Secretary Robert F. Kennedy Jr.'s agenda regarding autistic people, new fears have risen over what the federal government intends to do with medical data.

Van Hecke, who co-directs the Milwaukee-based clinic, Next Step Clinic, shares the concern, considering National Institutes of Health Director Jay Bhattacharya announced at an all-staff meeting April 21 the intent to create "a new disease registry" focused on autism. That plan would amass private medical records toward a new autism study, extracting health data from electronic health records, pharmacy data, insurance claims and even wearables like smart watches and fitness trackers.

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[–] fluffykittycat@slrpnk.net 6 points 3 months ago

I don't blame anyone for not wanting a diagnosis right now.

[–] t3rmit3@beehaw.org 4 points 3 months ago (1 children)

Step 1: Remove flouride, attack vaccines

Step 2: Announce a disability registry, so no one wants to get diagnosed, resulting in a plummet in diagnoses

Step 3: .....?

Step 4: "See, flouride and vaccines caused autism and disabilities!"

[–] jarfil@beehaw.org 2 points 3 months ago

Step 3: Forced treatment in El Salvador.

[–] hazelnoot@beehaw.org 4 points 3 months ago

I discontinued my own evaluation and asked the doctor to purge my records. It sucks to lose all that progress - especially after waiting decades for it, but I just can't take the risk right now. At least he was understanding and didn't object to deleting my file.