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U.S. autism data project sparks uproar over ethics, privacy and intent

(www.washingtonpost.com)
254 points perihelions | 2 comments | 27 Apr 25 09:23 UTC | HN request time: 0s | source
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Boogie_Man ◴[27 Apr 25 11:07 UTC] No.43811043[source]▶
If they come out with a list of twenty adjustments they're going to make based on the study (things like but not necessary including: banning certain fire retardents, attempt to reduce break/tire pollution, adjusting the timing of (but not eliminating) the vaccine schedule, banning specific food additives, reducing/modifying specific pesticide use) I will believe this is a legitimate and well intentioned effort from someone who is orientationally correct but frequently epistemologically incorrect. If it's just "eliminate all vaccines" then I'll be very disappointed.

The third reich response a lot of other commenters are having is interesting. I'm no expert and have not investigated autism, but if the messaging in response to RFK JR is "yeah he says 1 in 36 kids have autism now but actually that's fine and how it always has been and actually autism is good and he's actually Eichmann" you're going to drive a lot of people right to every unsubstantiated thing he says.

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1. asacrowflies ◴[28 Apr 25 01:36 UTC] No.43816712[source]▶
Regardless of any so called good that could supposedly come of this..... Why does the federal government get to seize my medical records and data for this list without my consent??? Are autistic people not full citizens? What about rule of law??? If we can take such drastic measures and shit all over things like hippa and medical ethics....where is the sweeping federal database of obese people .
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2. theartfuldodger ◴[30 Apr 25 05:44 UTC] No.43841627[source]▶
I know I have created a few dozen "registries" for research and stat analysis with my team. All data is depersonalized and HIPAA compliant. I dont understand how a generic statement made to the public becomes a recipe for the next reich. I get how the FB crowd would just go hyperbolic, would not have expected it here. Ive worked with medical, insurance, legal, banking and finance data for a decade. It would be easy to scare a normie by describing nearly any of those projects, but its the exact opposite, everything is done with a preponderance of caution to ensure privacy compliance.