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.
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
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 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.
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.
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.
This is probably the worst thing that will ever happen to you in your life
Nah man I was born over 3 decades ago
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.
Agreed. And basically that is exactly what I said.
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.
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.
It’s not a individual problem of personnal responsibility
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?
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.
Yes but what about the times law enforcement sent in the DNA and found relatives. Three are stories of that happening if I remember correctly.
What about the thing I said?
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.
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.
i can only imagine someone buying that data is up to no good. who is “regeneron” really?
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
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.
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.
In 30 years they’re going to squirt genetically modified copies of you into corporate artificial uteruses and that’s how they will meet their worker needs.
Doubtful. Even one of me is pretty lazy. They’ll want someone more apt for their clone army.
Don’t worry that’s the parts they will genetically modify to make you more docile and servile.
Dammit noooo there can only be one
Technically it won’t be exactly you as they’ll genetically change you to be more docile
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.
this going to be Regeneron’s Skype.
Microsoft didn’t kill Skype. Zoom popped up out of nowhere and killed Skype.
In the before times we used hamachi, but it was hard. Eventually, Skype was born and it was good and easy. It worked like a phone and many StarCraft 2 team games were won. But Skype was corrupted by the many Nigerian princes and hot Ladies who only needed a few dollars to turn your life around. This corruption was then baked so deeply into windows it took registry edits to exorcise it. But all was good was we now had discord which took the ideas of hamachi and Skype and delived a better experience than both.
Ah. You think Discord, that is not an free software product, controlled by one corpo, is immune to enshitification. When will people learn?
Definitely not, enshitification is real. I’ve gone from someone excited about new products to I don’t trust anything that I didn’t build. We are currently discussing moving our group chat off discord, but I’m biochemist and my circle are similar professions and I’m still learning how to properly host things.
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
Lol no regulation needed huh
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.
AS soon as the data is secured, enprison the buyers
Oops.
Hey - don’t give your data to a corporation if at all possible. kthx
