this post was submitted on 01 Apr 2024
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Privacy

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I'm concerned about the privacy implications of DNA testing services like 23andMe or AncestryDNA. What are the potential risks of sharing our genetic data with those companies, and are there any privacy-focused alternatives available?

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[–] SnotFlickerman@lemmy.blahaj.zone 65 points 7 months ago* (last edited 7 months ago)

The biggest risk of "sharing DNA" is pregnancy.

...I'll show myself out.

[–] neidu2@feddit.nl 53 points 7 months ago* (last edited 7 months ago) (3 children)

I can easily imagine a reality where insurance companies have access (intentionally or accidentally) and give you a higher premium because they found something that makes you more predisposed to some ailment.

The above is pure speculation, but it's only one security breach or bag of money away. It's never safe to assume that a your data is 100% secure at a (presumably) benign company. As curious as I am regarding certain aspects of my heritage, the fact that I have no control over what they do with the info is keeping me on the bench.

[–] BearOfaTime@lemm.ee 6 points 7 months ago (1 children)

Just look at the "monitor your driving for a discount" which th already do.

My insurance company offered $30/year discount if I used their OBDII monitor. Are you effing kidding me? Thirty freakin dollars? I'd need to see a 50% discount before I even considered it.

[–] neidu2@feddit.nl 5 points 7 months ago (1 children)

What always rubbed me the wrong way about those is that they don't see what I'm seeing. Yes, I slam my brakes sometimes, but it's not because I'm driving dangerously. Sometimes animal come out of the blue, and what telemetry might show as dangerous driving could just as easily be me saving them money.

[–] catloaf@lemm.ee 5 points 7 months ago (1 children)

That's why they don't ding you unless you do it often. If you have to do it often, you're driving too fast.

[–] drwho 3 points 7 months ago

Deer season in Pennsylvania has entered the chat. :/

[–] dukethorion@lemmy.one 5 points 7 months ago

100% this. They already got caught sharing your health data with Facebook. Don't think they (insurance companies)won't buy DNA data en masse.

[–] exanime@lemmy.today 3 points 7 months ago

Insurance companies already extrapolate such data from zip code.... So it's not speculation at all that they'd want an even more accurate metric

Basically in today's world, you'd have less than 1% of actors that would take this data and do something productive or beneficial for you or society as a whole... The other 99% will just use this data to make money on the back of others

[–] floofloof@lemmy.ca 45 points 7 months ago (1 children)

23andme already got hacked and 7 million people's private data was compromised:

https://www.theguardian.com/technology/2023/dec/05/23andme-hack-data-breach

[–] BearOfaTime@lemm.ee 16 points 7 months ago

I have some family who used them (against my advice), so now that's partly my DNA out there.

[–] mozz@mbin.grits.dev 24 points 7 months ago* (last edited 7 months ago)

The big real-world implication I'm aware of is that law enforcement can match DNA they found somewhere against 23andme's database. Then if you (or any of your relatives!) are in the database because they've ever used 23andme, they'll find that out, and they can use it to investigate or prosecute you.

Whether you think that's a good or a bad thing depends a lot on whether you think the cops should be able to succeed if they get a hold of someone's DNA and are looking for the person to match their sample against... that success is, to me, much more likely to be a good thing than a problem, but that may not be the consensus view here and it's certainly a massive, massive privacy implication.

[–] delirious_owl@discuss.online 22 points 7 months ago (1 children)

Your clone escapes, hunts you down, kills you, fucks your wife, and replaces you

[–] UraniumBlazer@lemm.ee 4 points 7 months ago (2 children)

Can my clone fuck me please? 🥺

[–] isgleas@lemmy.ml 1 points 7 months ago (1 children)

I'm not sure if your issue is narcisism or bestiality

[–] UraniumBlazer@lemm.ee 2 points 7 months ago* (last edited 7 months ago)

Neither. It's called being ahead of one's time.

(By clone, I mean an exact copy of myself including my experiences till this moment. I do not mean raising a generic only clone purely for the purpose of sex or something weird like that)

[–] rasakaf679@lemmy.ml 1 points 7 months ago (1 children)

Is it categorised as mastrubation or homosexual?

[–] UraniumBlazer@lemm.ee 1 points 7 months ago

It's a class of its own ;)

[–] antlion@lemmy.dbzer0.com 10 points 7 months ago

If you’re like me, you could find out at age 38 who your true biological father is, and contact him for the first time. It may spiral you into an identity crisis, wondering if you should change your name and the name of your children. Here’s the thing though, my biological dad didn’t share his DNA. His first cousin did, and I contacted him.

As others have said, because you share your DNA with all of your relatives, it’s already not 100% private. One or more of your relatives has already tested their DNA. The most genetic privacy you can get would be for nobody to know who you’re related to. How tightly do you protect that information? Changing your name would be a good first step.

[–] rho50@lemmy.nz 10 points 7 months ago

At least in some circumstances, the risks of sharing your DNA include having children...

[–] TonyTonyChopper@mander.xyz 9 points 7 months ago* (last edited 7 months ago) (1 children)

we already know 99.9% of your DNA, it's over

[–] ReakDuck@lemmy.ml 1 points 7 months ago (1 children)
[–] TonyTonyChopper@mander.xyz 2 points 7 months ago

a rounding error

[–] considine@lemmy.ml 8 points 7 months ago (2 children)

Someone could build an army of clones of you, launch galactic war, and then you'd be hated all over the galaxy. Assuming you have good genes. Probably they made a bad movie about this.

[–] Kit@lemmy.blahaj.zone 1 points 7 months ago (1 children)
[–] INHALE_VEGETABLES@aussie.zone 2 points 7 months ago

Battle toads. It was OK.

[–] livus@kbin.social 1 points 7 months ago

If someone launched galactic war using clones of me, I'd be laughed at all over the galaxy.

[–] nothacking@discuss.tchncs.de 7 points 7 months ago

These services, like most companies will store your data indefinitly, and can be hacked. You cound end up with your name, what ever infromation the service gave you, and contact info on the internet. This is not the end of the world, but something to be aware of.

[–] zach@lemmy.dbzer0.com 6 points 7 months ago (1 children)

In the US, insurance companies cannot discriminate based on your genetic data, contrary to what many people in the comments are saying.

https://www.hhs.gov/hipaa/for-professionals/special-topics/genetic-information/index.html

[–] livus@kbin.social 10 points 7 months ago (1 children)

For now. The US is a victim of legislative capture by corporations and it's possible that in the future lobbying by insurance companies will open the door to them using some of that data.

[–] drwho 3 points 7 months ago

They're spending a lot of money lobbying inside the Beltway to change that. So far it hasn't worked but it's only a matter of time.

[–] communism@lemmy.ml 6 points 7 months ago

Forensic data on you is already pretty easy to obtain unless you're taking special effort to avoid it being taken. Also when you get arrested they take whatever biometrics they like. The info on you those DNA testing companies are getting is info already easily available to the government. I guess if you're concerned about your DNA being used to tailor ads to you, not just to criminalise you, it could be an issue, but idk I don't think your DNA can really predict what ads will be effective on you.

[–] smb@lemmy.ml 5 points 7 months ago* (last edited 7 months ago)

All who could have an idea of what to do with it could seek a way to get that data out of every company or gov that have it for their specific reasons, no matter if data was collected lawful or not, or if access to the data is then lawful or not.

  1. search for source of evidences on crime scenes: if one of your relatives happened to have been (related to crime or just bad luck) at a place where later on some evidence was collected, you might cause trouble for them bcs your data is very similar to theirs and that is obvious to laboratories. depending on the the "later on" current state of technology it could affect relatives more than two or three steps away from you. if you live in a country where law enforcement gives a shit about truth and just seeks for one argument to punish just anyone they can point a finger at, that could become a huge problem for the whole family then just because there was data that could have been abused.
  2. illegal organ traders could - once they have access to your data - think you or your relatives could be a source of nice income if a client of theirs happen to pay enough. however you will probably never know as the illegal organ traders are unlikely to ring the doorbell to ask nicely for a contract. How much do you think would a richie in personal needs pay for "spare parts" if those who deliver them wants him to just never ask where it came from ? does it matter if such organ teaders could know a "compatible match" by data only? maybe not because they might know tomorrow or someone might put up an AI to do the matching (does it matter if that matching by AI is correct then? i guess such traders don't really care and their customers probably, but wouldn't that be possibly too late then?)

For me the latter is actually enough to not willingly give my DNA data to anyone. for no reason. gov might already have it (covid probes had been collected and frozen at least) but actively pushing your data out inzo the world would be insane IMHO.

Laboratories often use Microsoft Windows, Microsoft Active Directory and Microsoft Exchange, thus i personally see no reason to NOT believe that any data they have received once in time would - sooner or later - end up rotating uncontrolled in the hands of uncountable criminals waiting for any chance to make quick or huge money out of it.

[–] shortwavesurfer@monero.town 2 points 7 months ago

Just from the title before I read the actual post, my first answer was going to be 18 years.

[–] jlow 2 points 7 months ago

Those two apparently don't allow law enforcement access to their databses (yet?) even though I seem to remember they do. But others do:

https://www.nytimes.com/2021/05/31/science/dna-police-laws.html

[–] crispy_kilt@feddit.de 1 points 7 months ago

Babies, I guess