Drugmakers Are Set to Pay 23andMe Millions to Access Consumer DNA::GSK will pay the DNA testing company $20 million for non-exclusive access to genetic data.

  • partial_accumen@lemmy.world
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    11 months ago

    The real dystopian horror is when these genetics companies start selling to insurance companies. Think about it:

    “I’m sorry we aren’t covering this cancer claim with our health insurance product because you are genetically predisposed to it”

    We need legislation now to prevent genetic discrimination.

    • UnspecificGravity@discuss.tchncs.de
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      11 months ago

      We do have legislation to protect genetic information, what we need is to prevent the gathering and distribution of this information in the first place because those laws go away the second someone is positioned to make a shit ton of money from it.

      • twoshoes@lemmy.world
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        11 months ago

        The problem is, that the law is not absolute. Neither in it’s writing nor it’s application.

        Large companies regularly break the law (especially data protection) and face very little consequences. Either because they can afford a staff of lawyers to find and build loopholes, or through schmoozing with the right desicion makers. Paying a fine of 20 million is not much when you made 20 billion (20 thousand million) in profit.

        Even more so, very large companies (think Facebook or Google) hold enough political power to influence or even change laws.

    • dangblingus@lemmy.dbzer0.com
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      11 months ago

      I dunno. That’s all super expected.

      To me the dystopian part is millions of people with no personality needing to send spit to a black box private company so they can get a letter back telling them how special they are.

  • BURN@lemmy.world
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    11 months ago

    It’s almost like we all saw this coming when these services started taking off. I’ll never put myself into one, and at least from my best knowledge none of my close family has either

  • edgemaster72@lemmy.world
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    11 months ago

    Weren’t they hacked recently? Are the drugmakers sure the data isn’t cheaper on the black market?

    • PeterPoopshit@lemmy.world
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      11 months ago

      They’re why they’re only paying “millions”. To big pharma, a million or so dollars is just pocket change. Now no one will accuse them of downloading it off the dark net for probably free.

      • Mettigel@lemmy.world
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        11 months ago

        That somehow makes sense. But still, shouldn’t you be able to own “the copyright” for your own DNA? If not there should be some legislation for that I think.

        • HurlingDurling@lemm.ee
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          11 months ago

          I believe 23 and me stated in the past that they own the data that they process, so in essence if you, or a family member submit their DNA to them, then they own that DNA and part of the DNA of the relatives of whom submitted the sample.

          • Stumblinbear@pawb.social
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            11 months ago

            They don’t own the DNA itself, but they do own the rights to the resulting sequence. It’s akin to a biography–you don’t own the person’s life, but the author put it down on paper and owns the rights to the book.

            Multiple companies sequencing the same DNA don’t end up in copyright spats because the DNA itself isn’t copyrightable.

            • HurlingDurling@lemm.ee
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              11 months ago

              Right, sorry. That’s what I meant that they own the data they process. The reason why I went to owning your DNA is more towards that fact that they are processing or digitizing your DNA and the average consumer doesn’t have the power to sue them for their processed data like one of these other companies or a government agency to regulate them. But maybe I exaggerated

              • Stumblinbear@pawb.social
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                11 months ago

                Eh, they have about as much power over that as they do any other privacy breaches. It being DNA doesn’t make a huge difference

  • Sensitivezombie@lemmy.zip
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    11 months ago

    Customers are only to blame for sharing giving such data to business that only exist to make money. I have never used these services for the same reason and I will never use them. I don’t trust what they will do with this data if not now, then down the line.

    • HiramFromTheChi@lemmy.world
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      11 months ago

      I understand your sentiment, and I do agree that costumers gotta be more aware about what they’re getting into.

      With that said, consumers can’t be blamed for legislative failures. That’s what this is, at its core.

      When people signed up to Facebook, they just wanted to keep in touch with their friends. When people signed up for Instagram, they just wanted to share pictures. They didn’t want to be endlessly exploited.

      And let’s be real, no one is sifting through these privacy policies and ToS that are designed to be impossible to understand.

      Same thing here. People just wanna understand their genealogy. Wanting to know your ancestry, shouldn’t come at the expense of incredibly privacy-invading practices.

      Why is it that we as consumers need to share to these horrendous business practices if we wanna know our ancestry? Why are there no protections in place? Is it realistic/reasonable to have to read all this incomprehensible language?

  • Stonewyvvern@lemmy.world
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    11 months ago

    In the future, you have to subscribe to use your specific genes. No choice in the matter because you were born with them, but big pharma owns the rights to those same genes.

  • Fapper_McFapper@lemmy.world
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    11 months ago

    I figured one of two things, if not both, would certainly happen with these services. 1. They were going to figure out a way to monetize the information received and/or 2. All the information would be leaked or hijacked. As soon as these services started popping up I told everyone in my family not to trust them. So far, none of us have fallen for the scam. That I am aware of.