This week, the genetic testing company 23andMe filed for bankruptcy, which means the genetic data the company collected on millions of users is now up for sale. If you do not want your data included in any potential sale, it’s a good time to ask the company to delete it.
When the company first announced it was considering a sale, we highlighted many of the potential issues, including selling that data to companies with poor security practices or direct links to law enforcement. With this bankruptcy, the concerns we expressed last year remain the same. It is unclear what will happen with your genetic data if 23andMe finds a buyer, and that uncertainty is a clear indication that you should consider deleting your data. California attorney general Rob Bonta agrees.
First: Download Your Data
Before you delete your account, you may want to download the data for your own uses. If you do so, be sure to store it securely. To download you data:
- Log into your 23andMe account and click your username, then click “Settings.”
- Scroll down to the bottom where it says “23andMe Data” and click “View.”
- Here, you’ll find the option to download various parts of your 23andMe data. The most important ones to consider are:
- The “Reports Summary” includes details like the “Wellness Reports,” “Ancestry Reports,” and “Traits Reports.”
- The “Ancestry Composition Raw Data” the company’s interpretation of you
20 Comments
YooLi
This feels as hopeless as trying to keep your email/contacts from social media sites. Even if you are vigilant about never allowing an app/service to download your contacts, your friends will share theirs and it is trivial to recreate your contact list. If I keep my DNA from these companies, my relatives will share theirs and they basically have my DNA.
drdaeman
Note that despite any requests the genetic data and some personal information (DOB and sex) probably won't be deleted, at least because of CLIA requirements: https://news.ycombinator.com/item?id=41781879 (more details in https://bourniquelaw.com/2024/10/09/data-23-and-me/, linked from the thread there)
ahmedfromtunis
To be honest, this is more like "requesting the data to be deleted". There's nothing that guarantees that the personal information will be physically wiped out of the hard drives used to store them.
ks2048
Has anyone tried to export their ancestry data? I've notice the PDF summary lists broad regions, but the data in the App shows more details (e.g. specific counties of countries). Anyone know how to export that data? I'll just take some screenshots, but maybe this info is somewhere else in the export.
pmarreck
Why? If it's already out there, it's kind of too late, is it not?
rglover
The data has already been sold off to the real customers (i.e., not you and me) [1]. You can (and should) request a deletion, but the damage has already been done.
[1] https://gizmodo.com/23andme-is-selling-your-data-but-not-how…
yoaviram
Better yet, send them a legally binding data deletion request (if you live in a jurisdiction that has strong data protection laws):
https://yourdigitalrights.org/d/23andme.com
brian-armstrong
The distinction isn't super important, but 23andMe doesn't have your whole genome, just some specific locations from it. Roughly 750k base pairs or so.
https://www.quora.com/How-much-of-the-genome-does-23andMe-se…
hammock
How do we know it hasn’t already been sold at least once? The OMG expose makes me think
randomNumber7
Hello, I was sent back from the future to tell you there is already a backup.
Boogie_Man
Me trying to sequence ppls genomes in my basement doesn't seem so bad now.
isjustintime
Hah, yes. I used to work at a company that sold a popular DNA product. I built part of the GDPR data deletion pipeline. During my last week there, I submitted a request to delete my data from the systems. The final integration test!
dineol
lol do you really think they will delete your data?)
partiallypro
I know I'm in the vast minority here, but I honestly don't really care what is done with my DNA data as long as it's not used against me for healthcare & insurance purposes (which I believe is already illegal.) If someone wants to use it to make new drugs, research, etc, I just don't care.
nickjj
I never made an account there or uploaded anything DNA related but what happens if a relative did? Is there the concept of a "ghost" account that gets filled in for people who didn't sign up yet but is likely related? Can this be deleted without making an account?
windsignaling
Is anyone having trouble downloading their data? Some data, such as "Raw Data", "Imputed Genotype Data R6", and "Phased Genotype Data" need to be requested, but I haven't heard back from them yet.
Would like to download everything first before requesting deletion.
ineedasername
Delete? How then will I get to hang out with Roko after regenerative AI incorporates their data into its training corpus?
TuringNYC
Not sure if others are having this problem, but my login no longer works, and password-reset emails never arrive (tried three times on three days w/o success)
arduanika
If only there had been some way to see this coming.
johnnyballgame
I just can't understand who in their right mind, and is even remotely concerned about the privacy of their personal information, would upload their own DNA to a business. An internet-based one at that. Lemmings, I tell ya.