I need some input and thoughts on this subject please!

[a_natural_beauty]

https://www.npr.org/2025/03/24/nx-s1-5338622/23andme-bankruptcy-genetic-data-privacy

So sadly not too long ago tonight I learned of 23&me filing for bankruptcy. I love this site, it's been my "go to" for finding out more about myself as well as for my mom and dad. It wasn't too long ago I wrote about my results from this site and the other I use - ancestry.com. But 23&me was my favorite, I feel like it was easy to understand, modern and educational. I found a distant cousin who lives in England who we are friends and talk on FB. Other family members use this site, too.
Now I'm not sure what I should do... should I wipe my genetic data from the site? How risky is it if it's still on there... who may come of it? I feel like there are more important questions to be asked and sorted out. I'm going to give it some time and think it over but I thought I'd see if any of you have any thoughts on this matter. I'd appreciate any advice. This bums me out quite a bit.

Comments

[cornerofmadness]

I've been thinking about this myself but have come to no conclusions

[a_natural_beauty]

So you have your dna on there as well? :-/

[cornerofmadness]

the whole family does

[a_natural_beauty]

If you feel like it, let me know what you decide to do.

[white_aster]

To me, this is a question like, "should I delete all my personal data from my computer before I sell it?" Yes. Yes you should. Is it guaranteed that the person who buys your computer will do something nefarious with your browser history and personal files? No. But they could. Why take the chance? So yeah, I'd highly recommend downloading whatever data you need from the site (because it's very likely the site will go away possibly without warning), and then deleting everything, immediately, before anyone actually buys the company and revokes your ability to do so.

If you want some possible scenarios, here's my thoughts: whoever buys 23andMe would have access to your contact info/name linked to your saliva sample and to your genetic analysis. 23andMe protects your privacy when they use your sample/data for medical research, but there's no guarantee the new buyer will as well (they say as much in that article, that they "hope to" secure a likeminded partner - "hope to", not "guarantee"). So no bones about it: a buyer will have your genetic profile and your DNA sample, and they will know that those are YOURS, personally.

So what could a buyer do with their purchase? Well, they could just rerun your sample looking for any medical markers they want (even if you only asked for an ancestry profile, them buying your sample makes it theirs - they can run tests you never asked for on it). They could build up a dossier on you about your genetic susceptibilities to all sorts of diseases. They don't need to share that info with you at all or even tell you that they're doing it. Though I could see one business model being them sending out creepy coy emails going "do you know what's lurking in your DNA now that we ran our Super Special Updated Analysis on it? Pay us $50 and find out!"

What else could they do with that genetic dossier? Likely sell it to someone, who in turn could sell it to whoever they wanted. It could be sold to advertising companies, who would probably be very interested in what diseases you're likely to get as you age (because they could better target you for ads, like oh, start sending you advertisements for disease prevention programs, because they'd know you're likely to get/be worried about that disease when you get older.) Insurance companies would likely be interested in it, too, though technically they're not allowed to discriminate against you because of your genes (but who wants to test that technicality?)

What I'd be most worried about is it getting sold to one of the data brokers - you can read about them here (https://www.idx.us/knowledge-center/yes-your-personal-information-is-for-sale-heres-what-to-do-about-it), but basically they are sites that compile every bit of info they can on you from advertising engagement, social media accounts, publicly available info, etc. Then they sell that profile to whoever wants it. Add your genetic data into that, and your genetic susceptibilities would be available to anyone with the money to pay for your file (and that info is not terribly expensive). A prospective employer or insurer or landlord, a stalker, random curious coworkers, scammers looking to target you for fraud, companies that want to train AI. Anyone.

Are these scary things guaranteed to happen? No. It's possible the company could be sold to someone similar who is privacy minded and...I don't know, thinks they can be a more viable company than 23andMe was. But this is in no way guaranteed, and as soon as 23andMe is sold, it might be too late for you to change your mind if you don't like the new buyer's plan. The risks are definitely there, same as if you sold a computer to someone without wiping the hard drive. You're handing a stranger a lot of data that they might be able to do harm with.

Also, honest question...do you see a BENEFIT to you leaving your info on 23andMe? I can't think of one. Whatever benefit you get from using the site right now...I'd expect that site to not be available much longer, no matter what you do. You leaving your data on there for a strange company to buy and do god knows what with doesn't give you anything extra. So yeah, I recommend backing up your data so it's safe with you, and then mitigate all the above risks by telling 23andMe to delete it all. It seems the safe thing to do.

[a_natural_beauty]

Wow, thank you. You bring up so many good points. Some of them I haven't honestly thought of much, if at all. I'm going to have to save my parents as well as mine.
No, I can't see a benefit of keeping my dna & info on this site - or whatever it may become. That's the scary thing - not knowing who will have it yet. I truly appreciate all the advice you've given me.

[white_aster]

Sure thing! Sorry for the infodump, it was late, I was tired, and this intersects with several of my interests to the point that I had strong opinions on it. ;P

But yes, I feel you'd be doing anyone who is on 23andMe a solid good turn by helping them take their data off and deleting it. That IS the scary thing about all of this: it's so unregulated, and frankly...this is not a cultural moment in this country where I'd want to rely on the benevolence of J. Random Company to protect my privacy or not be evil.

Also, note that you need to tell them to delete your data AND to destroy your biosample in separate places on the site: https://abc7news.com/post/how-delete-23andme-data-destroy-genetic-samples-amid-bankruptcy-announcement/16076687/ So make sure you do both of those.

[a_natural_beauty]

Again, thank you. I greatly appreciate the help. Right now I'm hoping back for a request I sent out to let me download my raw dna from their site. I'm not sure why the process is being so long but I may have to just delete my dna soon without doing that. :-/

[matt_zimmer]

White Aster is absolutely correct on every point they make. Delete your data, Jess.

[a_natural_beauty]

Thank you. I'm going to have to do it for my parents who are on there, too.

[fred_mouse]

My knee jerk response is to download whatever info you can, and then delete. Because there are a lot of bad options on who might get that data.

However, I have also not done any of these tests, because I don't trust the for profit genetic testing industry at all, so I'm coming from a much more cynical/paranoid starting point than you.

[a_natural_beauty]

Oh you can be as cynical/paranoid as you want! I am starting to feel that way, too. Thank you very much for your input! :)

[fred_mouse]

I've now seen white_aster's comments, and they have a much more nuanced and logical set of thoughts, and I agree entirely. Because a bad case scenario is that an insurance company buys it for the data.

[a_natural_beauty]

Yeah, how creepy and bad that would be... Ugh... I dislike this whole situation greatly.

[littlewolfteeth]

I just heard about this on the radio. The radio suggested deleting everything because they are going to sell all that data to someone else, from my understanding. At that point, you have no control over it and have no idea where it's going. I think it's a good idea as all the other comments pointed out. That sucks that it's happening. :(

[a_natural_beauty]

Thank you, I appreciate your input! :)
Yes, I'm going to do it for my parents and I.

[lily]

Echoing others, especially white_aster, about it being best to save your data and delete it from the site as soon as possible. I'm sorry 🫂

[a_natural_beauty]

Thank you, it didn't take long for me to figure out that I needed to do this, too. I think I had some sort of shock related feeling when I found out. I appreciate your input!

[yourlibrarian]

I have downloaded some data and am waiting for the full genetic data (requested it several days ago, still no update). But I plan to delete it all once I get it.

I understand your disappointment. I liked the site and took part in a number of their affiliated medical studies over the years.

Editing to add this link: https://oag.ca.gov/news/press-releases/attorney-general-bonta-urgently-issues-consumer-alert-23andme-customers

[a_natural_beauty]

Thank you. I hope you get yours soon. It was a neat site! I'm happy to hear someone else enjoyed it, too. This makes me question a-lot behind these sites now. I know a good amount of people who are skeptical about them and now I am seeing why 100%.

[brisus]

I went in and deleted all my stuff. I don't want someone who isn't using this data for the indicated reasons to have it.

[a_natural_beauty]

Did you request your raw dna data to download? Also do you think it'll be completely deleted?

[brisus]

I did not request it b/c I don't need it, but I did the full delete and unsigned several consent docs. Hopefully...they'll take that seriously. Although, any data out there is rarely completely deleted, but better that I try!

[a_natural_beauty]

Yes, that is a good point!!

[frenzy]

I deleted my stuff. I just don't know who could get their hands on it, and why. Honestly, if I had known that my DNA was going to be in a database usable by cops, I would have never even done the damn thing.

[a_natural_beauty]

Yes, that is a feeling shared by so many. Right now I'm waiting on an email asking to download my raw dna data then I plan on deleting mine and my parents too.