Jonathan Kamens on Nostr: Here's an update on my looking into whether my genetic data and samples are secure ...
Here's an update on my looking into whether my genetic data and samples are secure within the #NIH #AllOfUs program.
Bottom line up front: I'm going to withdraw my consent and ask them to delete my data and samples, and I encourage you to do the same.
Details follow.
* I sent their support team an email asking what they were doing to protect the data from DOGE.
1/2
#dataPrivacy #privacy #medicalResearch
Published at
2025-03-31 15:12:55Event JSON
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