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Why can't a public trust buy 23andMe?
(lemmy.world)
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this post was submitted on 14 Oct 2024
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Having ownership of something also implicitly gives you the right to sell that thing. Unless 23andMe explicitly stated in the contract that they were under obligated to never share that information. I highly doubt the had anything like that in the contract because, well, here we are.
Also, 23andMe afaik is not a medical association, so they likely aren't bound by things like HIPPA (idk if specific genetic encodings would be included in that anyways) to protect information.
That’s speculation, not fact, and I also don’t agree that owning a thing necessarily means you can sell it in an unrestricted/unregulated manner (guns, tobacco, as well as other sensitive medical info can’t just be sold willy-nilly)— especially when the “it” is sensitive biometric data whose originators never agreed to share it. That’s the problem when you and the greedy corporations you’re defending assume implicit consent rather than to ask for it: it’s damaging to the public and invades these people’s medical privacy in the name of profit.
And whether 23andMe should be subject to HIPAA laws is debatable at best.
They DID agree to share it.
Should that have been an option? Probably not, but now you are talking about legislation with wider implications, not some half baked public trust to protect a small group of people.
There are other databases of genetic code out there you know. The FBI can potentially accuse you of a crime based on your cousin uploading info to a genealogy website.
https://www.palmbeachpost.com/story/news/crime/2023/02/06/police-are-using-genealogy-sites-to-solve-crime-heres-what-to-know/69826173007/
I saw in another comment.
That doesn’t negate the public interest in protecting such data, as I have said.
Besides, that clause may not hold up in court.
All the more reason for broader legislation than a half baked idea about buying just this one database.
They did agree to share it but their children didn't and a database this large is likely to have significant predictive effects on generations to come.