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.
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.
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.
I also don’t trust these. There is very little regulation and protection. Case in point.
a layperson isnt going to find much use of inaccurate results of potential “genetic diseases” a geneticist will do that. so it
The people with access to their private data includes 23 and everyone else.
Thank you for sharing.
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.
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.
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.
