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.

  • pemptago@lemmy.ml
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    21 hours ago

    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.

    • sartalon@lemmy.world
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      1 hour ago

      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.

    • cogman@lemmy.world
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      13 hours 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.

    • Manifish_Destiny@lemmy.world
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      19 hours ago

      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.

    • AugustWest@lemm.ee
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      13 hours ago

      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.

      • krolden@lemmy.ml
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        3 hours ago

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

      • angrystego@lemmy.world
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        10 hours ago

        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.

    • 7bicycles [he/him]@hexbear.net
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      20 hours ago

      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

      • pemptago@lemmy.ml
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        17 hours ago

        I take your point and I don’t disagree about personal responsibility or that there are a lot of people who ignored all the warnings. And it’s all the more frustrating to be ignored, or labeled as paranoid, by those same people. I was mostly reacting to the pervading unsympathetic response I was seeing.

        A lot of people in the privacy community are seeing this as an established professional or someone with the experience/insight/know-how, and from that vantage point it seems so obvious. But it’s a journey. I can think of a few moments that woke me up to privacy and it’s importance. Most of those were just tinkering on personal projects. There’s no general education on this stuff and I really don’t think many folks have had the fortune to encounter this info in a way that they grasp, but maybe I’m kidding myself - i’ll leave room for that. I mentioned Time for a sense of the timeline and sentiment, not as a meaningful endorsement. I know I was ignorant about most of this stuff as late as 2014 and I still have so many gaps.

        Maybe this 23andme BS is an experience that turns many more towards privacy, in which case i hope they’re met with a welcoming message like, “that sucks, this is why we have to educate and protect ourselves” instead of an alienating “no shit, idiot.”

      • interdimensionalmeme@lemmy.ml
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        20 hours ago

        If this is considered a problem of individual personnal responsibility then I will trigger stateccollapse because we don’t need it if it can’t send goon to those duckers and stop the transfer then we don’t need those ducking statist vampire to go on living for one more microsecond

        • 7bicycles [he/him]@hexbear.net
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          19 hours ago

          If this is considered a problem of individual personnal responsibility then I will trigger stateccollapse

          fucking go for it, king.

          The entire concept of data privacy is antithetical to the modern nation state. Motherfucker you live in the hole. You are in the oubliette. What fucking governmeant bureau, under trump, do you see taking up the fight here, much less winning? You can’t unleak data. That shit’s out there, forever - and, again, probably has been for years considering what a goldmine the DNA databse of the USA is.

          Lobby your state all your want, IT-Security and Data Protection starts at you. All the encryption in the world doesn’t save you from being spear-phished. You can encode this in law, but unless anybody starts executing legal entities and building the great firewall á la china, that shit’s out there in a real “can’t unlick that asshole” situation. It sucks! It is bad! The average person should not have to grapple with the realities of IT-Security and Data Protection much in the same way I don’t have the first fucking clue about how to keep an NPP from exploding. But unless we reinvent the whole thing from scratch that shit’s on you, me, and everybody else. Never give them anything. I own 18 bicycles.

          • interdimensionalmeme@lemmy.ml
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            12 hours ago

            I am going to laser off the optics from all russian eks early launch warning satellites at the next moment of tension between the empires.

    • Smee@poeng.link
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      17 hours ago

      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.

    • RuthBaderGonesburg [he/him]@hexbear.net
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      20 hours ago

      Yeah it’s weird seeing so many people dump on 23andMe users. My grandmother got to meet her biological daughter that she was forced to give up for adoption. 23andMe as a service is amazing and has been life changing for some people. And all things considered Regeneron buying them is a good thing. They’re already set up to protect sensitive patient data.

      • krolden@lemmy.ml
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        3 hours ago

        It would be an amazing thing if the people who controlled it and the rest of the world weren’t complete fucking ghouls.

    • Didros@beehaw.org
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      17 hours ago

      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.

    • SitD@lemy.lol
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      17 hours ago

      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

    • auraithx@lemmy.dbzer0.com
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      18 hours ago

      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.

      • BeardedGingerWonder@feddit.uk
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        18 hours ago

        No huge risk at the minute. While I’m all for you doing whatever you want with your DNA it doesn’t make uploading it to everywhere that will take it a particularly good idea.