this post was submitted on 05 Dec 2023
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23andMe confirms hackers stole ancestry data on 6.9 million users::Genetic testing company 23andMe revealed that its data breach was much worse than previously reported, hitting about half of its total customers.

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[–] Animated_beans@lemmy.world 10 points 11 months ago (2 children)

If you've ever had blood work done at the doctors office or had any tissue removed, your DNA is almost certainly on file somewhere. Human specimens are very valuable in research so whatever isn't needed for testing is sent off to various research facilities. There really aren't laws about tissue ownership so medical facilities can do whatever they like without your permission, though some still ask. Source: "The Immortal Life of Henrietta Lacks"

[–] AliasAKA@lemmy.world 8 points 11 months ago

This is only partially true. Due to things like Henrietta Lacks cells (HeLa cells for those working in cell culture), we actually have informed consent around this. They can’t just use your samples for not consented collection purposes (though in some cases, the further testing may fall under the original consent)

HHS rules note:

“If the tissues are identifiable, then subjects must provide consent for the secondary use and that consent must cover the elements of consent in 21 CFR 50.25.”

That really only applies to healthcare providers covered under FDA and HIPAA regs.

Obligatory not a lawyer etc.

[–] echodot@feddit.uk 3 points 11 months ago

Yeah my blood's already on file, that way after the fall of human civilisation people can clone me to find out what happened and I get to live.