Bankrupt 23andMe Just Sold Off All Your DNA Data
Bankrupt 23andMe Just Sold Off All Your DNA Data
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.
I hope I deleted my data just in time not to be (legally) included in this.
Sweet summer child.
That's why I specified legally. Which, being American involved, I reckon still has very little meaning. I cannot undo mistakes I made 15 years ago. Stoically, I can only worry about how I can act in the present.
Narrator:
They didn't.
i deleted my data a month or two ago, am i safe?
Hahahahahaha
This is probably a good time to remind ourselves of the time 23AndMe genetic data got hacked and most likely sold on the dark web. This data is all over the place at this point, and it affects not just the individuals who took the tests but also their relatives.
data protection is at risk of becoming an oxymoron
Anyone stupid enough do give their DNA deserves it.
The sad part is that some people have unwillingly had their DNA shared. My parents both did it without me knowing so now they already have my information too.
Indeed, the way it works is horribly effective and invades the privacy of an entire bloodline.
It's more of an iq test than a dna test.
Hindsight is 20/20. ITT lots of folks proud of themselves for not falling into this trap, but try to understand, 23andme was named "invention of the year" by Time in 2008. That's before [edit: around the time] google and facebook had begun monetizing private data. Data privacy, or even the power of data itself, was hardly appreciated by private companies let alone in the public consciousness.
Orphans, people with absent parents, decedents of slaves, the list goes on for folks who would understandably go for an affordable way to access their genetic history. Sure, there were plenty of folks since then who had all the information and still went for it, but what about all those who became aware of it too late and when they requested their data be deleted were told it would be kept for 3 years!
I'm saddened to see more victim blaming here than anger at the ToS/privacy policy fuckery and a complete lack of consumer protection.
Don't give me that 'hindsight is 20/20', it was the first thought I had when I heard about this.
'How are they going to monetize this?'
Either they sell your data, or they go under and... sell your data.
There was no other option from the inception.
None of this is new, and private companies gobbling up any data they can hasn't been new since at least 2005.
The future is not evenly distributed.
Were you working with data back then? Marketing? You want to argue that there was the same public knowledge around digital data in 2005 (when web 2.0 was in its infancy) as there is now in 2025? Most books I've read on the topic weren't even published till the late 2010's. Surely there was a moment or experience that woke you up to the importance of privacy and the capabilities of data. Not everyone has had experiences like that, even today.
I'm not dismissing personal responsibility, I was just shocked that the dominant, first reaction was "morons" and not "these companies are immoral, and don't deserve our trust." I want privacy as the default and not an overwhelmingly individual arms race against corporations and professionals. The latter is going to lose, and that will hurt the rest of us. If we want the former, as a community we have to get off our high horse, get on the ground, and grow by welcoming those that got burned into the fold. edit: grammer
Don't give me that 'hindsight is 20/20', it was the first thought I had when I heard about this.
'How are they going to monetize this?'
The tests weren't free.
I'm glad you had the foresight to keep yourself safe, but unfortunately not everybody is as observant or skilled in critical thinking as you are. We all started from ignorance, and no matter how well-learned a person is, they can't possibly know everything. The least we can do is remind ourselves that we're imperfect too, and have some compassion for those that are just discovering things that we have already learned.
I only want to disagree about Facebook not monetizing private data in 2008.
My wife was in politics/campaign management. They were already selling fairly sophisticated targeted ads by then.
I was shocked/terrified by how well they were targeting and it wasn't even close to what they have today.
FUCK CORPORATIONS.
You're right. My mistake. I was going off memory and 2009 came to mind, but now that you mention it I do remember hearing about tech for the 2008 election- but I heard that years later, after cambridge analytica. All's to say, it was emerging around that time and it wasn't a big, public announcement. People around the epicenter knew but most were in the dark. I know i was, till the mid 2010's. Since then I have 0 trust in big tech/most corporations, but I've definitely made my share of mistakes and wish there were more protections/public education.
I didn't get the choice when my easily fooled parents decided it was a good idea.
We tried the 'delete your 23 and me data' but who the fuck knows if that works.
Now some corpos own my DNA probably.
Thanks mom.
You're probably affected by this even if you didn't participate.
The thing about genetics is you can make reasonable predictions about individuals if you have data on their relatives. Heck, you can reasonably make regional predictions with genetic data that will be fairly accurate.
If any of your parents, grandparents, aunts, uncles, cousins, siblings, etc took this test, then you are now at least a little exposed.
By 2008 we were well into the "you should know better than give up personal data" era. That is no excuse. People are just stupid and don't care.
There were all sorts of publications telling people to protect their personal information, online and in the meat world by 2001, let alone 2008.
I don't want to victim blame, but going right into this with all the warnings seems pretty stupid to me.
Now what does suck, and horribly so, is that there should be nothing of value gained from that data: there should be laws against nearly everything they could use for corporate advantage, exploitation, identity, etc. With severe consequences.
That is the failure.
They used to tell us never tell anyone your name on the internet. This was in the 90s.
Well, yes, the sad reality is that very many people are rather stupid. This won't change and we should treat it as a fact - people are always going to fall for schemes. I think the fact that they're stupid doesn't mean they deserve to be exploited, though. This is a failure of laws and regulations.
It shouldn't take hindsight to read the fine print in your 23andme contract. They straight up told folks, that taking their test meant signing over ownership of your DNA samples to them, for whatever future purpose they had in mind.
Anyone who didn't clue in to the fact that meant they were paying that company to own the rights to their DNA, is an idiot.
If i would look for my parents or a lost sibling or whatever, i wouldn't care, take my data i guess. But everyone knows that almost everyone who took that test did it for attention and because it was the cool thing influencers did.
Hardly. It stated that you could request to have the sample destroyed and your data removed. it's also been revised multiple times. You read the contract, no?
You read the privacy policy & ToS fine print of every product, service, software you use? And every revision. Even when it's not broadcasted? The contract / "informed consent" model is totally broken. You really want to build your stance on these issue around the claim it's a reasonable system anyone can and should have to navigate?
23andme was named "invention of the year" by Time in 2008
perfect, I am now openly pro Trump, Zuckerberg and also Putin, all of whom have been named Time Person of the year from 2007 onwards. This is because I don't even bother to understand what Time nominates, but also entirely willing to base very important political or life decisions around this. If you call this out as being incredibly fucking stupid you are victim blaming me. Just because I do not have ever read the magazines nominations of awards that I base my being around does not mean you can attack me for this.
Orphans, people with absent parents, decedents of slaves, the list goes on for folks who would understandably go for an affordable way to access their genetic history.
This is slightly more sympathetic but also 23andme would help you zilch in this scenario because this is not what they do. But I do understand how coming from a vulnerable emotionial position might lead you there.
I'm saddened to see more victim blaming here than anger at the ToS/privacy policy fuckery and a complete lack of consumer protection.
Having said beforementioned, there is 0 consumer protection that would prevent this scenario. This bullshit has to rank among the largest DNA Databse in the world, and, as such, would be the target and has probably been leaked to every major and minor intelligence service in the world since years, even before they just openly sold it off to god knows who. The crux of data security is that while it is a society wide issue, it is also a personal issue. You can't outregulate some idiot just handing over all their data for funsies or SECURITY to whatever entity, to point out the big ones. This holds true regardless of socioeconomic system in place, because the entire point is that it is your data, not anybody elses.
Also, and I do agree I am malding over this, I want to point out that people have been warning about 23andme for a decade for obvious reasons and largely got ignored as being doomer nerds
I take your point and I don't disagree about personal responsibility or that there are a lot of people who ignored all the warnings. And it's all the more frustrating to be ignored, or labeled as paranoid, by those same people. I was mostly reacting to the pervading unsympathetic response I was seeing.
A lot of people in the privacy community are seeing this as an established professional or someone with the experience/insight/know-how, and from that vantage point it seems so obvious. But it's a journey. I can think of a few moments that woke me up to privacy and it's importance. Most of those were just tinkering on personal projects. There's no general education on this stuff and I really don't think many folks have had the fortune to encounter this info in a way that they grasp, but maybe I'm kidding myself - i'll leave room for that. I mentioned Time for a sense of the timeline and sentiment, not as a meaningful endorsement. I know I was ignorant about most of this stuff as late as 2014 and I still have so many gaps.
Maybe this 23andme BS is an experience that turns many more towards privacy, in which case i hope they're met with a welcoming message like, "that sucks, this is why we have to educate and protect ourselves" instead of an alienating "no shit, idiot."
If this is considered a problem of individual personnal responsibility then I will trigger stateccollapse because we don't need it if it can't send goon to those duckers and stop the transfer then we don't need those ducking statist vampire to go on living for one more microsecond
It's not about blaming the victims, but correctly identifying what caused the situation and give society at large a better chance of avoiding it from happening again. From not trusting magazines about how secure the new wondertech is, all the way to not reading and understanding the legal paper and agreements they've agreed to.
I don't believe people should be robbed of their agency - You even bring up many good reasons for using 23AM despite being aware of the potential privacy issues. Rather, people should have the information to make a concious choice.
The blame for the situation is with the company. The crucial choice was always in the hand of the users.
i feel saddened that people focus entirely on hindsight but take the current situation as inevitable result of the past, and regard it as unchangeable.
no, this does not have to be treated like any other capitalist asset. if there's a shred of belief that the privacy and dignity of us humans matters to us now in 2025, just get together and disown 23andme, nuke the data, and turn the page.
unfortunately we have to stick harder to the principle of capitalism than any crusader in the middle ages had to stick to the Bible... helpless powerful species
Yeah it’s weird seeing so many people dump on 23andMe users. My grandmother got to meet her biological daughter that she was forced to give up for adoption. 23andMe as a service is amazing and has been life changing for some people. And all things considered Regeneron buying them is a good thing. They’re already set up to protect sensitive patient data.
It would be an amazing thing if the people who controlled it and the rest of the world weren't complete fucking ghouls.
Yes, I know. As I mentioned in another reply, I was mentioning it only to give a sense of timeline and hype. Not a justification. Nice gotcha, but misses the broader points.
It's not a individual problem of personnal responsibility
Anyone trusting anyone else in a capitalist society is signing up to be the sucker. Has been this way for 200 years.
Historically illiterate populace.
And you went straight into doing it again! Amazing
I’ve publicly uploaded mine to anywhere that’s take it anyway who cares. Unless you’re American there’s no huge risk. If they use the anonymised data to discover new drugs and treatment then I’m glad to contribute. It’s only <0.1% of your genome.
99.9% of your genome is exactly identical to every other human on Earth. <0.1% just means they aren't storing things that don't change between people, because why would they?
No huge risk at the minute. While I'm all for you doing whatever you want with your DNA it doesn't make uploading it to everywhere that will take it a particularly good idea.
I remember when I was younger and I was really learning about the capitalist system, but not from a communist point of view or a socialist point of view. I was just caught up with libertarianism and right-wing ideology and whatever, but nothing like it is today and I was learning about IBM and how they categorize the Jews in the camps. And then I realized all these corporations all have a legacy of brutality. There's more to all this, and people are just not strong enough to accept what's happening in our country. I'm a Libertarian Socialist.
I literally had an econ professor years ago who directly told us "do not take a genetics test". This was before the ACA
The reason was simple. It's information that once a private company gets a hold of it, they will use it to hurt you. Whether it's a drug company that learns you're predisposed to addiction, so better to give you it people around you nice temporary discounts on addictive meds, or an insurance company that learns you're predisposed to cancer, so better to look for ways to deny or drop coverage.
Once these companies know a little bit about your nature, they'll exploit any aspect possible to increase profits.
This was not a progressive/socialist econ professor. Just someone who knows how capitalism works.
Unfortunately, it is too late. They don't need your specific genetic code to extrapolate about you, just the code of one of your relatives who wanted to find out their heritage for fun.
Without serious privacy laws we will be used and abused by corporations, get ready to experience Gattaca in real life.
I never fell for it. I hope none of my siblings did, either.
I would have thought that data would be worth more. Maybe the AI guys will just steal it, instead?
Siblings and first cousins.
Most likely the data 23andme already gathered is enough to narrow down just about anybody in the US.
340 million and me
I wonder if there was anything in the T&Cs that mentioned extrapolation of data leading to identifying genetic relatives and whether their consent was void on this basis. Or whether this could be grounds for interesting lawsuits from nonconsensual relatives being identifiable from the participants' data.
If we believe 23 and me, they have only recieved 11 data requests for 15 accounts and provided zero data to law enforcement.
https://www.23andme.com/transparency-report/
That is a report on formal law enforcement requests for direct account information. Law enforcement is known to use genetic ancestry, so either they are using other sites or just running the tests themselves instead of doing a formal request.
I couldn't find a case for suing companies, just defense requests to dismiss using the data in court but I might not be using the right search terms.
This is such a dramatic understatement. They didn’t just sell the genetic data of those 15 million customers. They sold the data of everyone they’re related to, as well. Which is the majority of the population.
You really don’t need to sample a large percentage to get the data of almost everyone.
My aunt did this along with posting a bunch of family photos and falling for those quizzes that ask your pet's name or your childhood address. If you have one person like that the privacy of your entire family is compromised.
We told her back around 2010 not to do this kind of stuff, but she's somewhere between "If I have nothing to hide" and "what's the harm?". I hope she gets it now, but we don't talk to her often
entirely fucking predictable. and 256 mil is chump change for essentially genetic data that could be extrapolated to most of the country.
Especially considering who bought it.
What is known, at least publicly, about Regeneron?
i can only imagine someone buying that data is up to no good. who is "regeneron" really?
And this, ladies and gentlemen, is why you don't give your data to companies: their executives and shareholders care more about their bottom line than your privacy.
Exactly, and you cannot hope to see any meaningful regulation out of the current government.
The company will just buy The Secret Service/Trump's Presidential Library a fleet of Rolls Royce and he'll intimidate congress into silence.
Nope, and not even because of the current administration: this country is by, for, and about rich people, and people are getting deliriously rich off of our data right now so there's no political will to do anything about it.
Shoutout to my dumbass relatives for sending their DNA to this company—thanks for nothing!
My dad was all about this for a while, including convincing my siblings and a few of his siblings to get the report.
I guess that means I'm somehow linked in to this if I ever happen to leave my DNA laying around in the wrong place.
He's awfully quiet about it now though.
https://en.wikipedia.org/wiki/Joseph_James_DeAngelo#Investigation
Yeah, I would advice against becoming a serial killer for starters.
I honestly don't know what they will do with snp data. These investors and VCs have been running scare peace articles for the last two years to drive the company into bankruptcy so that it could be sold and the data harvested. But I honestly think people are really overestimating the value of a dataset showing how different people are from a standard template. It's good for ancestry and correlations but people forget they didn't fully sequence samples. I fully expect the news cycle to change once they figure this out as they try to get people to resubmit DNA for nextgen sequencing, so they can try to salvage their investment.
You don’t spend a quarter Bil without knowing what you’re doing. The company is involved in drug discovery.
You'd be surprised how much money gets wasted of stupid projects and acquisitions in biotech because some suit think they understand science better than their R&D team. For analogy sake think about all the stupid shit Microsoft bought and killed or all the chat apps Google created and killed, this going to be Regeneron's Skype.
The VC and founders should be painlessly deboned.
I think it’s weird you’ve made the assumption these professionals buying this haven’t already considered the things you’ve said… like that’s all looked at during the acquisition process
I've not submitted my DNA to any genealogy sites for testing, but what annoys me about all this is that in order to get as much info about my family tree as possible (for posterity and confirming theorized connections) I SHOULD be testing my parents's DNA because the oldest family members are the best for connecting to distant relatives, and my parents aren't gonna live forever. But I can't get them (or myself) tested, because of considerations like this. This shouldn't have to be a consideration. But it is, because of greedy bastards and the gombeen politicians who allow stuff like this to be legal.
If you really want to get your parents sequenced for your own personal use without it going into a database it'll cost you about $500 per sample (cheaper if you know someone who can extract the DNA for you). You'll get a set of fastq files for the reads that will cover almost their entire genome that you can then use with public databases or just store for future use. Another option is to sign up for a university study but you'll have to be comfortable with their data use.
Lol no regulation needed huh
AS soon as the data is secured, enprison the buyers
Realistically, what could a company do with the data? I can see how it could be dangerous in the hands of a nation state if someone is a politician. But otherwise, besides the gross privacy violation, im not sure I see what real harm will come of this.
Ever see Minority Report?
That, but without the psychics. Insurance companies use things called actuary tables to estimate risk. If they have your DNA, they could decide that, since you have markers for early onset Alzheimer's, they're going to charge you double for life insurance.
Law Enforcement could decide that, since you share some trait with other common criminals, you're more likely to do crime, and get warrants to surveil you more closely. Maybe you don't do crime, but you get pulled in for a crime in the neighborhood because you're the one with the highest crime DNA score, and that's enough to convict you. Maybe you get pulled over more often for going a little over the speed limit, because you're being watched more closely. Maybe they just decide you're so likely to do a crime, they imprison you proactively.
None of this is absurd; it's all been done before. The Nazis used to evaluate people by how big their skulls were - this is Eugenics on fucking steroids, backed by the smell of legitimacy because DNA. People have wrongly gone to prison and served entire sentences because of bad DNA testing, and it's still used.
This should worry you. It's not hypothetical, it's not a conspiracy theory - the potential for abuse of a database like this should concern everyone, liberal or conservative.
Like all those white supremicists who discovered they have black ancestors; only, now, all their little KKK friends know, too!
If the state starts prosecuting DNA crime they’ll just swab people they don’t need a private firm barely anyone’s used to collapse.
Dodgy American insurance firms could try and get their hands on the data no doubt, but Regeneron has to abide by the same data protection rules as 23andme.
Ah yes. Literally giving your fucking DNA to some private company just so they can tell you that your great grandfather is from Ireland. Who could've predicted this going wrong.
Fucking white people doing anything to get an identity.
The worst part is there is cool, if very boomer dad coded, ancestry research. It however involves reading a lot and lot of bureaucratic documents from hundreds of years ago and attaining quite some fields of knowledge to figure out how names shaped over time, how the bureaucratic institution in $time and $place work and such.
A friend of mine does it and he can trace one root of his family back to the 15th century within like a 30km radius circle. It's really cool to see where, when, and therefore likely why, his family moved about for 500 years to end up where they are now instead of getting "you are probably from europe and 2% neanderthal"
Standard hexbear user.
Oops.
Hey - don't give your data to a corporation if at all possible. kthx