80
The people with access to their private data includes 23 and everyone else.
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.
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.
I also don’t trust these. There is very little regulation and protection. Case in point.
Thank you for sharing.
You can do your own dna testing at home now anyways
You still have to send it somewhere, at home kits are just about collecting the sample not sequencing it.
They didn't say what they were testing for. You can do a binary do you have DNA or not test to see if you are in fact a robot or not. All you need is soap and alcohol.
Drinking soap makes my stomach upset and drinking alcohol makes me upset, that means I'm a human right?
Any robot I can get drunk with is alright by me
This thread made me look into the idea of DIYing it, and one of the search results I found looks like it legitimately is about actually doing the sequencing yourself:
https://techcrunch.com/2016/03/30/citizen-scientists-you-can-now-diy-your-own-dna-analysis/
$800 in 2016 was steep enough, but at the $1600 it apparently costs today I'm not sure it's still within the realm of DIY, if it ever really was. I wonder if there are any cheaper competitors?
That allows visualization of PCRed product, which is a far cry from whole genome sequencing. You can visualize a target at a time with no sequence info. Using it for sequences would be extremely tedious and require a lot of runs.
Yup, I used to do PCR genotyping. 50 samples running the same setup would take me a whole 12-hour day at my lower end lab.
I can't imagine having to do 50 different ones with 50 different templates and having to adjust each one. 😅 And that's for 50 sequences. How many are there in a human?
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.
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.
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.
Not how or works, 23andMe uses Labcorp.
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.
It’s cute you think that it’s actually deleted
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.
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.
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?
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
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.
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.
this post was submitted on 22 Mar 2025
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