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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[–] Sir_Kevin@lemmy.dbzer0.com 74 points 11 months ago (7 children)

My gf wanted so bad for me to send my DNA to these clowns. I declined due to privacy reasons. She tried to convince me that they keep your info private. I told her that even if that was true, the government could still access it. She thinks I'm paranoid. And now her personal info is likely part of this leak.

[–] MuffinHeeler@aussie.zone 20 points 11 months ago* (last edited 11 months ago) (2 children)

My mother had breast cancer. I couldn't get a test to see if it was the inheritable one because then I would have to disclose it as pre-existing for the rest of my life. (For the record my mom took the genetic test and it was negative).

This is just one example.

What if in future, your insurance price depended on an inheritable diseases DNA clearance. You could refuse but then it would be $$$$$. What if my life insurance refused to pay upon my death because I had knowledge of a gene that causes cancer when I took out the policy?

PS not American.

[–] AliasAKA@lemmy.world 7 points 11 months ago

They’ll almost surely attempt this, but it will be much less clear cut on it. There’s federal law against discriminating on the basis of genetics, so they can’t explicitly charge more for it.

But you better believe it’ll be a component in a deep learning insurance adjustment model that charges you more and just tells you the model says so — I’d expect this to occur and a court case to happen.

[–] realharo@lemm.ee -3 points 11 months ago

That's a situation for a government program, not insurance. Insurance is for situations where it's unlikely that you'll need a payout.

Of course people today have to deal with the systems we have, but I'm talking about your hypothetical "future" scenario.

[–] 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 7 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.

[–] r3df0x@7.62x54r.ru 5 points 11 months ago (1 children)

I wonder how many people like this turn around and then use electronic payments in person for everything.

[–] Duamerthrax@lemmy.world 13 points 11 months ago (1 children)

Different levels of privacy. Electronic payments only reveal what you buy and at least serves a utility. 23andme is just for vanity and could reveal your preexisting conditions or family tree to people who would use it against you.

[–] r3df0x@7.62x54r.ru -3 points 11 months ago (1 children)

Each transaction isn't that much. Beating the path toward a cashless economy is a different story.

Do you remember the pregnant teenager outed to her parents over big data advertising?

[–] Duamerthrax@lemmy.world 9 points 11 months ago

All I'm saying is that the two are not equivalent and people aren't hypocrites for doing eletronics payments, but refusing vanity dna tests.

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

I told her that even if that was true, the government could still access it. She thinks I’m paranoid. And now her personal info is likely part of this leak.

You're paranoid and she's probably part of the leak.

The odds the government gives any kind of shit about your 23 and me data, much less could competently do anything with it, are vanishingly small. That's just pure paranoia.

[–] phoenixz@lemmy.ca 8 points 11 months ago (1 children)

Not really.. this info can and is being used in solving crimes. That and, if the US government ever turns into a dictatorship (hello trump!) then you won't have to worry of being put on a list, you are already on one.

[–] SCB@lemmy.world 1 points 11 months ago (1 children)

I'm on several. Social security, the draft, etc.

Point is the search methodology required has so far been worth it to catch one person. That person was a serial rapist and murderer. Hardly compelling.

[–] phoenixz@lemmy.ca 1 points 11 months ago

Lists you are on contain information that can be modified, updated. I lived at A? I move to B. You can't change your DNA and if that would be abused, that would be much,uch worse than social security info

[–] curious_betsy@lemmy.world 3 points 11 months ago* (last edited 11 months ago)

Sadly you are mistaken here, the government is very interested in your DNA data. Check out this article about how they caught the golden state killer:

Law enforcement officials are more interested in whether their perp is closely related to other people in the database