If you have ever used 23andMe, you need to delete your data and account immediately

[Dakota Tebaldi]

23andMe is a genetic testing company that lets customers send a DNA sample to be analyzed for health and ancestry information. There are a bunch of companies like this and you really should not be using any of them, because they exploit your curiosity about your ancestry to turn your genetic information into a monetizable asset and the terms of service you sign give you little to no rights or protections over what they can do with it or to whom they can sell it.

The California Attorney's-General office has issued an urgent notice to customers of 23andMe in particular:

California Attorney General Rob Bonta today issued a consumer alert to customers of 23andMe, a genetic testing and information company. The California-based company has publicly reported that it is in financial distress and stated in securities filings that there is substantial doubt about its ability to continue as a going concern. Due to the trove of sensitive consumer data 23andMe has amassed, Attorney General Bonta reminds Californians of their right to direct the deletion of their genetic data under the Genetic Information Privacy Act (GIPA) and California Consumer Protection Act (CCPA). Californians who want to invoke these rights can do so by going to 23andMe's website.

If 23andMe goes bankrupt, and that looks extremely likely, all of its assets will be auctioned off including its DNA and customer personal information database. Whoever buys that data will not be subject to whatever 23andMe's terms of service were, meaning that even if there accidentally were any meaningful consumer protections in the agreement, they will not transfer to the new owners. They can do literally whatever they want with that data.

So if you've ever used this company's services, even if you're not a California resident, I STRONGLY urge you to log in and at least try to delete as many of your records as possible, or request their deletion, and then once that's been done, delete your account completely. The link from the Cali AG contains instructions for the process.

 

[Essence Lumin]

I would never use a genetic testing company for the reasons Cody outlined above.

 

[Rose Karuna]

I would never use a genetic testing company for the reasons Cody outlined above.

Insurance companies are already collating TONS of data on you from online sources. Your insurance (auto, life, medical, fire, flood, etc.) can raise your coverage price (or cancel your coverage) for any number of reasons. Perhaps because they discover that you buy clothes in a plus size on Amazon or you have trees near your house that could fall in a storm (Zillow). Both of these are examples that have already occurred.

These genetic sites are a treasure trove for companies that want background information on you in order to determine whether they should loan you money or reimburse you for a legitimate insurance claim. This information not only allows them to deny coverage and reimbursement to you, but also to a multiple number of people in your family line. That's just the "legitimate" companies. Employers could also decided to not hire you because of a genetic marker (legally or not) and who knows what the Trump administration will do with the information.

You're not only protecting yourself by not sending your DNA in, you're also protecting your future and immediate family.

 

[GoblinCampFollower]

Insurance companies are already collating TONS of data on you from online sources. Your insurance (auto, life, medical, fire, flood, etc.) can raise your coverage price (or cancel your coverage) for any number of reasons.

Yes. I also want to point out that the now gutted ACA was supposed to forbid health insurance from discriminating based on preexisting conditions. I'm not sure if this provision still exists with all of the changes conservatives have made to the act....

I confirmed you can delete all your data in 23andMe by going to your account settings.

EDIT: According to google the preexisting conditions thing is still in place. I should mention the industry loves it since it lets them sell to customers while remaining on an equal playing field (since nobody else can discriminate based off of it).

 

[Casey Pelous]

I went to delete all my data and it seems 23andme's 2FA is so overloaded it is taking forever to get that magic code. It was fully 15 minutes.

In any case, done!

 

[Noodles]

If you really want to know, just do it yourself.

Sequencing your DNA with a USB dongle and open source code - Stack Overflow

stackoverflow.blog

 

[Free]

I've tried DIY DNA testing. It reported that I have 23% cryptid ancestry. Which seems rather vague and very specific at the same time.

 

[GoblinCampFollower]

I went to delete all my data and it seems 23andme's 2FA is so overloaded it is taking forever to get that magic code. It was fully 15 minutes.

In any case, done!

now the question is, what if they try to sell the data as they go bankrupt before processing all these data deletion requests.

I've tried DIY DNA testing. It reported that I have 23% cryptid ancestry. Which seems rather vague and very specific at the same time.

Yes, there is insufficient data to differentiate different cryptid subspecies. Kind of like how French-German is often seen as the same ancestry. I suspect you got some Bogle in you though...

 

[Casey Pelous]

I found most of the ancestry info 23andme coughed up was super-suspicious. Anyone who thinks you can distinguish, say, Scottish, Irish, English and Danish genes from each other is really ignorant of a) historical migration patterns and b) the rather persistent tendency of humans to enjoy a healthy romp in the hay with whatever body is available at the moment then lie like hell about it.

It was somehow satisfying, though, to learn that through mysterious processes that science cannot explain some East African genes had snuck into my doggedly racist dad's family tree.

 

[Beebo Brink]

I went to delete all my data and it seems 23andme's 2FA is so overloaded it is taking forever to get that magic code. It was fully 15 minutes.

In any case, done!

I deleted the data for myself and my wife this morning. I don't worry unduly about any practical risk, but if they're going out of business (which seems quite likely) then deleting my account is the most prudent action.

 

[Beebo Brink]

I found most of the ancestry info 23andme coughed up was super-suspicious.

The ethnic breakdowns can be useful as a supplement to good old-fashioned genealogical research, but unfortunately the majority of people on the Reddit subs I frequent view the results as exact and specific information and start freaking out over 2% this and 1% that, and why am I 45% this when my grandfather was born that. Ethnicity is a marketing ploy, compared to the DNA matches, which are real science-based results.

That being said, my ethnic breakdowns were spot on for what I know of my family and the origins of various ancestors. Maybe I'm not exactly 28% Spanish/Basque and 17% Indigenous, but I know my Zapotec great-grandmother from Oaxaca married a man who had a Spanish surname and European features. The 2% Jewish and 2% Sub-Saharan Africa are typical for Mexicans, so even though I can't verify that ancestry, it's very likely valid. In broad strokes, they got that right.

All that was just icing on the cake for me. I tested with all the major DNA companies because I was looking for half-siblings. Never found any, though, and the clock is running out since if they're out there, they would be in their 80s or 90s.

 

[Sid]

you can delete all your data in 23andMe by going to your account settings.

But... the million dollar questions remain IMHO:
Will they and how much is already sold to others?

 

[Free]

Yes, there is insufficient data to differentiate different cryptid subspecies. Kind of like how French-German is often seen as the same ancestry. I suspect you got some Bogle in you though...

Bebé, I am all Chupacabra.

 

[Beebo Brink]

But... the million dollar questions remain IMHO:
Will they and how much is already sold to others?

I would price it more at $5,000 than a million dollar one. Any company that has your name and credit card information poses a potential risk, so in that sense 23andme going into bankruptcy is really no different. When Kmart went under, they had my credit card info too, but I didn't see anyone panicking about that (although maybe we should have).

The risk due to DNA data is, to my mind, overexaggerated. If DNA was useful to health insurance companies, they'd already be requiring that test, the same way they might require a medical physical. There would also be a clear chain of custody from insuree to lab and to insurance company that unequivocably established who was being tested. There's no such chain of custody in the 23andme results. Anyone can order a test, or multiple tests, then hand them out to friends, relatives, total strangers and then manage the results on their account. This makes account data useless for making decisions about a specific individual with a policy with your company.

The entire reason that 23andme is going bankrupt is that the cost of doing these tests is greater than the price they charge consumers. The business plan was for the DNA tests to be the tease to get people to upgrade to the more premium services beyond the relative matches and ethnic origins. Turned out the premiums just weren't that appealing.

And this is why health insurance companies aren't that interested in DNA testing either. It's REALLY expensive on a per person basis and not that predictive of a specific individual's medical history. It's far cheaper and more useful to have actuary tables based on % of the population that will fall ill from X, Y, Z causes. As a healthcare business, you can plan for 32% of men over the age of 40 will have coronary artery disease (made up stat). Whether that person is Jack Smith or Bob Jones just isn't that important when setting rates.

 

[Noodles]

I have not done any DNA but I am pretty sure my heritage is all German and some Irish. Which is kind of boring and basically just "Basic bitch white".

 

[GoblinCampFollower]

I have not done any DNA but I am pretty sure my heritage is all German and some Irish. Which is kind of boring and basically just "Basic bitch white".

LOL. the DNA ancestry test I did was mostly consistent with known family history, which was encouraging that maybe it works. ....but yes, I'm also mostly just "basic bitch white."

 

[Lexxi]

The ethnic breakdowns can be useful as a supplement to good old-fashioned genealogical research, but unfortunately the majority of people on the Reddit subs I frequent view the results as exact and specific information and start freaking out over 2% this and 1% that, and why am I 45% this when my grandfather was born that. Ethnicity is a marketing ploy, compared to the DNA matches, which are real science-based results.

That being said, my ethnic breakdowns were spot on for what I know of my family and the origins of various ancestors. Maybe I'm not exactly 28% Spanish/Basque and 17% Indigenous, but I know my Zapotec great-grandmother from Oaxaca married a man who had a Spanish surname and European features. The 2% Jewish and 2% Sub-Saharan Africa are typical for Mexicans, so even though I can't verify that ancestry, it's very likely valid. In broad strokes, they got that right.

All that was just icing on the cake for me. I tested with all the major DNA companies because I was looking for half-siblings. Never found any, though, and the clock is running out since if they're out there, they would be in their 80s or 90s.

My sister-in-law has been doing some genealogical research. For reasons, my father's father branch was a bunch of last names, but didn't go back that far. Because of my father's mother side, we knew we were basically all of the UK, except Wales. Learned today that one of the main branches of the family has been traced back to a family in Wales.

Genealogical research is quite interesting.

I've never sent my DNA anywhere so I don't have anything to note regarding 23andme.

 

[CronoCloud Creeggan]

So if you've ever used this company's services, even if you're not a California resident, I STRONGLY urge you to log in and at least try to delete as many of your records as possible, or request their deletion, and then once that's been done, delete your account completely. The link from the Cali AG contains instructions for the process.

Done, thank you.

 

[Free]

The deed has been done.

Bankrupt 23andMe Just Sold Off All Your DNA Data

The consumer-genomics company 23andMe just sold its biobank of customer genetic data to drugmaker Regeneron for $256 million.

futurism.com

Your DNA results are in — and they're 100 percent the property of a pharmaceutical manufacturer.

American biotech company Regeneron Pharmaceuticals announced today that it's buying 23andMe, the bankrupt consumer-genomics company that sold take-home DNA kits. Regeneron is to pay $256 million in cash to acquire "substantially all" of 23andMe's assets, including its massive biobank of around 15 million customer genetic samples and data.

Put simply, the genetic information of millions is now in the hands of a drugmaker seeking to mine it to make new therapies, per the Washington Post, which could be a data privacy nightmare in the making.

In its press release, Regeneron said it "intends" to honor 23andMe's existing privacy practices. Regeneron cofounder and president George Yancopoulos, meanwhile, issued a statement emphasizing the drugmaker's "deep experience with large-scale data management, having worked with collaborators around the world to link deidentified DNA sequences from nearly three million consented participants to electronic health records, safely and securely enabling future medical advances."

"We believe we can help 23andMe deliver and build upon its mission to help those interested in learning about their own DNA and how to improve their personal health," Yancopoulos' statement continued, "while furthering Regeneron's efforts to use large-scale genetics research to improve the way society treats and prevents illness overall."

 

[Soen Eber]

In its press release, Regeneron said it "intends" to honor 23andMe's existing privacy practices.

having worked with collaborators around the world to link deidentified DNA sequences from nearly three million consented participants to electronic health records

Ummm ...