Bankrupt 23andMe Just Sold Off All Your DNA Data
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.
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.
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.
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.
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.
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 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 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
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
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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.
Hahahahahaha
Oops.
Hey - don't give your data to a corporation if at all possible. kthx
i deleted my data a month or two ago, am i safe?