I signed up years ago for the #NIH #AllOfUs research program so the NIH has extensive data about me, including genetic data.
I trusted NIH then to keep my data secure and private, but I am obviously reconsidering that and thinking about withdrawing from the program.
I've asked All Of Us what assurances they can give that my data will remain safe, but I am skeptical that they'll have a persuasive answer.
Anybody else in this boat?
#privacy #medicalResearch
Jonathan Kamens /
npub1et…7vupq
2025-03-27 19:29:28
Author Public Key
npub1ethstkst9853uj0l37x0v878y0am5j50at9l50ux6qrxpxuv6xpsh7vupqSeen on
wss://relay.mostr.pubPublished at
2025-03-27 19:29:28Event JSON
{
"id": "0ccfe35bcaa127491edd5d11e338b426488b5772538c9b5d723e7790f69f876a",
"pubkey": "caef05da0b29e91e49ff8f8cf61fc723fbba4a8feacbfa3f86d006609b8cd183",
"created_at": 1743103768,
"kind": 1,
"tags": [
[
"t",
"nih"
],
[
"t",
"allofus"
],
[
"t",
"privacy"
],
[
"t",
"medicalresearch"
],
[
"proxy",
"https://federate.social/users/jik/statuses/114236048551480013",
"activitypub"
]
],
"content": "I signed up years ago for the #NIH #AllOfUs research program so the NIH has extensive data about me, including genetic data.\nI trusted NIH then to keep my data secure and private, but I am obviously reconsidering that and thinking about withdrawing from the program.\nI've asked All Of Us what assurances they can give that my data will remain safe, but I am skeptical that they'll have a persuasive answer.\nAnybody else in this boat?\n#privacy #medicalResearch",
"sig": "0feb663a02ac1ee7cfa29a012729e72a5823fc01f372b15aaf279e63eaf0354787d0226e2a5b5794dd835e928d417b078c759bf5c6c8f6bdef1d429c37f13763"
}