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.
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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.
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.
People are too trusting
Degrading minds are very trustful. It's why telemarketers target retirement homes.
Wasn’t 23 and me already a corpo that owned it though
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.
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.
Agreed. And basically that is exactly what I said.
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.
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.
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
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.
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.
So what are they going to do after?
You won't get tested twice, they still need to pay for existing. After they test everyone, how are they going to keep it up?
Unless they take more money from you, they will sell your data to someone else.
Insurance companies? Advertisers? Those things provide value for bad actors more than for you.
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.
I have no issue with that, but let's not act like there was anything else other than a trend.
If people said 'I got caught up in the moment, everyone was doing it' then fine, you got duped, it happens.
But don't give me lame excuses. Most people didn't approach it critically, which is not unusual, but own up to it.
I'm tired of the same excuse over and over.
And those tests weren't even that cheap.
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?
The 99.9% similarity refers to humans having nearly identical DNA sequences, but that doesn’t mean we express our genes the same way. Gene expression varies widely due to regulatory sequences, environmental factors, epigenetics, methylation, and more.
23andMe only analyzes a small, curated set of common SNPs, covering maybe 5 - 10 percent of the known functional and trait-associated genome. It doesn’t sequence most rare variants, the full exome, or structural elements.
Recent research is also starting to highlight the growing importance of the dark genome, revealing that non-coding regions we’ve dismissed as junk DNA play significant roles in regulation and disease.
That's all true, but also completely irrelevant to the point I was making. Gene expression isn't in that 99.9% of the DNA that is the same. All of the individually identifiable genetic information in the genome is in the other 0.1%. This is a privacy community. A complete understanding of how genetics works is neat and all, but it's not relevant to the conversation we're having. I didn't say that all humans 99.9% identical to each other. That's obviously not true. I said that there's no point in storing duplicate copies of identical genetic sequences, and that saying they store less than 0.1% of your genome only says they're not doing that.
For the record, 5-10% is way plenty to narrow things down to a very tiny number of people. Probably one in most cases, and it contains a lot of important medical information. That's not some trivial unimportant thing.
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.