this post was submitted on 22 Mar 2025
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[–] atrielienz@lemmy.world 117 points 2 days ago (4 children)

Several years back now, one of my colleagues was very much into the genealogy thing. She had major problems I think with needing to find herself or where she fit in or whatever. She was very much pushing me to try one of the DNA genealogy testing services and I had to be very firm about not wanting to participate in it.

This is why. My sense of self has never been in question and I don't need to attribute who or what I am to some people I've never met or culture I haven't participated in or been a part of. I have been considered "other" my whole life by in groups who only wanted me to identify with the bits and pieces of my culture or personality that they approved of and I pretty much had to get over that at a young age in order to not feel inadequate or content with myself.

As a result these always seemed like services that over promise and under deliver and they ask for way more privileged information than I am comfortable with giving away to anyone (I was skeptical when my doctor wanted me to participate in cancer screening via DNA testing because the only angle I could see for wanting it that would be profitable to an insurance firm was to deny me coverage later). Every time something hits the media about a leak or mismanagement of customer data, I am vindicated in my belief that it's not worth the price of admission.

[–] WhatSay@slrpnk.net 58 points 2 days ago (2 children)

Whenever someone mentioned these services to me, I would respond that I didn't trust them, and was often called paranoid. Maybe I just don't trust large companies with my most private data, and I don't know why others would.

[–] Sixtyforce@sh.itjust.works 18 points 2 days ago (2 children)

The usual retort I heard is because someone in your extended family probably did take a DNA test at some point they "practically already have yours." At least that's what redditors parroted all the time.

I don't know if it is true, because I thought being a couple steps removed from your parents already renders most hereditary DNA unrelated. But I'm just a layman.

Regardless, it still wouldn't have been my choice to deliberately self own like that. Just turns me into an unwilling victim instead, much better /s.

[–] KennyOmega@lemmy.ca 13 points 2 days ago

Exactly half of your nuclear DNA is from your mom and half is from your dad. It's the same for them with their parents. It goes on and on like that. There's a really interesting technique called The Leeds Method that allows you to cluster your DNA matches and it basically groups your DNA matches into four main groups, one for each of your grandparents. So you can actually quite clearly, with a bit of family knowledge or research, see more or less how you're related to a DNA match by comparing who your common matches are.

It's hard to explain, but you can learn a lot about DNA matches who aren't your immediate family.

[–] Ledericas@lemm.ee 1 points 2 days ago

not only that, but the test isnt going to be useful to a person whos not a geneticist anyways.

[–] b3an@lemmy.world 14 points 2 days ago

I also don’t trust these. There is very little regulation and protection. Case in point.

[–] 4am@lemm.ee 26 points 2 days ago (1 children)

It doesn’t even matter anymore if you have participated or not. If any of your family members have, they can correlate the DNA they have with written genealogy records and basically determine your race, ancestry, defects, etc.

So when the Nazis in power really want to purge for purity, they already have whatever list they need.

[–] atrielienz@lemmy.world 1 points 1 day ago

I don't think giving them more information to use against you. Is a good thing. Think about it this way, even if the police have you on camera in an area where a crime is committed, that doesn't mean you can't still plead the fifth and request a lawyer (assuming you're in the US). You aren't required to further their investigation.

[–] Ledericas@lemm.ee 2 points 2 days ago

a layperson isnt going to find much use of inaccurate results of potential "genetic diseases" a geneticist will do that. so it

[–] HowAbt2morrow@futurology.today 49 points 2 days ago

The people with access to their private data includes 23 and everyone else.

[–] adespoton@lemmy.ca 14 points 2 days ago (1 children)

Who does ancestry.com get to run their sequencing? Because I have a number of relatives who did that. I don’t think it’s 23andme.

[–] GamingChairModel@lemmy.world 31 points 2 days ago (1 children)

Everyone gets to run sequencing, but this post is about 23andme nearing bankruptcy, where they would run an auction for their records, including this genetic information of its customers.

[–] adespoton@lemmy.ca 23 points 2 days ago (1 children)

Yeah; my point is: if 23andme is liquidating, other genetic labs likely aren’t too far behind, and I’d like some warning there too… especially since I have to convince other people to delete their data.

[–] chonkyninja@lemmy.world 6 points 2 days ago

Not how or works, 23andMe uses Labcorp.

[–] 7112@lemmy.world 16 points 2 days ago

Thank you for sharing.

[–] Shadow@lemmy.ca 12 points 2 days ago* (last edited 2 days ago) (2 children)

Well I'm glad I downloaded all my genome data and deleted it a few months ago. It was easy to do, there's no excuse not to.

[–] 4am@lemm.ee 37 points 2 days ago (1 children)

It’s cute you think that it’s actually deleted

[–] Shadow@lemmy.ca 26 points 2 days ago (2 children)

Yes, it's not worth them fucking around with various pii / gdpr fines. As someone who has worked with pii, we always took deletion requests seriously.

[–] bignate31@lemmy.world 3 points 1 day ago (1 children)

But like... deleting the data would lessen the sale price. Much easier to just delete your account and keep the data in an "anonymous" form. How are you (as the consumer) going to ever know if it's actually deleted?

[–] Shadow@lemmy.ca 2 points 1 day ago (1 children)

No lawyer / accountant is going to sign off on that. It would get flagged as fraud during due diligence and lower the price due to the risks of lawsuits and fines

[–] LiPoly@lemmynsfw.com 3 points 1 day ago

I’m sure there’s some legal text somewhere that states that deleting only refers to the association with your user account, but the actual genome data will still be kept “anonymized.” There’s just no way in hell that they’re actually deleting it all. Their lawyers are smarter than that.

[–] kromem@lemmy.world 1 points 1 day ago

If you read the fine print, they keep your sample data for 2 years after deletion.

So maybe they actually delete your email address, but the DNA data itself is still definitely there.

[–] swelter_spark@reddthat.com 11 points 2 days ago (1 children)

I felt weird about it when my dad used this 23andMe service. He was very privacy-conscious, so it was uncharacteristic for him. Now he's dead. I wonder if there's still any way to get it deleted.