this post was submitted on 20 May 2025
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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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[–] pemptago@lemmy.ml 173 points 4 days ago* (last edited 3 days ago) (30 children)

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.

[–] Manifish_Destiny@lemmy.world 53 points 4 days ago (5 children)

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.

[–] lorski@sopuli.xyz 15 points 4 days ago (1 children)
[–] Duamerthrax@lemmy.world 9 points 4 days ago

Degrading minds are very trustful. It's why telemarketers target retirement homes.

[–] dutchkimble@lemy.lol 2 points 3 days ago

Wasn’t 23 and me already a corpo that owned it though

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[–] sartalon@lemmy.world 8 points 4 days ago (1 children)

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.

[–] pemptago@lemmy.ml 4 points 3 days ago

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.

[–] cogman@lemmy.world 14 points 4 days 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.

[–] 7bicycles@hexbear.net 10 points 4 days ago (4 children)

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

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[–] AugustWest@lemm.ee 7 points 4 days ago* (last edited 4 days ago) (2 children)

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.

[–] angrystego@lemmy.world 9 points 4 days ago (1 children)

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.

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[–] krolden@lemmy.ml 5 points 4 days ago

They used to tell us never tell anyone your name on the internet. This was in the 90s.

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[–] DarrinBrunner@lemmy.world 85 points 5 days ago (2 children)

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?

[–] SippyCup@feddit.nl 47 points 5 days ago (1 children)

Siblings and first cousins.

Most likely the data 23andme already gathered is enough to narrow down just about anybody in the US.

[–] expatriado@lemmy.world 32 points 5 days ago

340 million and me

[–] Luouth@lemmy.world 20 points 5 days ago (1 children)

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.

[–] spankmonkey@lemmy.world 13 points 5 days ago (4 children)

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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[–] andybytes@programming.dev 40 points 4 days ago (1 children)

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.

[–] cogman@lemmy.world 35 points 4 days ago (1 children)

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.

[–] Doomsider@lemmy.world 10 points 4 days ago

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.

[–] surph_ninja@lemmy.world 51 points 5 days ago (1 children)

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.

[–] wuphysics87@lemmy.ml 23 points 4 days ago (1 children)

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

[–] smee@poeng.link 9 points 4 days ago (1 children)

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.

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[–] umbrella@lemmy.ml 46 points 5 days ago* (last edited 4 days ago) (3 children)

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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[–] biofaust@lemmy.world 4 points 3 days ago (2 children)

I hope I deleted my data just in time not to be (legally) included in this.

[–] Bloomcole@lemmy.world 9 points 3 days ago (1 children)
[–] biofaust@lemmy.world 7 points 3 days ago

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.

[–] Asetru@feddit.org 5 points 3 days ago* (last edited 3 days ago)

Narrator:

They didn't.

[–] AernaLingus@hexbear.net 40 points 5 days ago

Shoutout to my dumbass relatives for sending their DNA to this company—thanks for nothing!

[–] Libra@lemmy.ml 33 points 5 days ago (1 children)

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.

[–] FauxLiving@lemmy.world 11 points 4 days ago (1 children)

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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[–] nucleative@lemmy.world 32 points 5 days ago* (last edited 5 days ago) (9 children)

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.

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[–] gleb@lemmy.world 1 points 3 days ago

i deleted my data a month or two ago, am i safe?

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