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.
this post was submitted on 20 May 2025
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Privacy
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data protection is at risk of becoming an oxymoron
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.
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 google and facebook even began 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, their 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 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 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.
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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.
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.
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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
People like that doesn't know how much we have to hide.
I don't even want people to know how I wipe my ass, let alone what genes I have.
Ahha fuck this is the same company I saw Martin Shrekli hawking. Its gonna be absolute fuckery good bye
entirely fucking predictable. and 256 mil is chump change for essentially genetic data that could be extrapolated to most of the country.
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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.
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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.
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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.
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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.
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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.
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