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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    1 year 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.

    • NotMyOldRedditName@lemmy.world
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      1 year ago

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

      You almost got this right…

      It’s more like, your mother submitted DNA and she’s predisposed, so YOU get denied. And that will go back a few generations.

      And when it’s something like a 2nd cousin submits DNA and is predisposed, they won’t deny you specifically, but they’ll raise your rates without letting you know why.

    • UnspecificGravity@discuss.tchncs.de
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      1 year 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.

    • Eager Eagle@lemmy.world
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      1 year ago

      in fact regulation IS the way to prevent this kind of discrimination, otherwise these companies can just start demanding genetic tests to rule out predisposition, regardless of the previous existence of a database with this data or their access to it.

      • twoshoes@lemmy.world
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        1 year 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.

    • Ghostalmedia@lemmy.world
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      1 year ago

      Although I wonder if HIPAA would need to get involved in places like the US if that happens. If that data is used to diagnose, then it falls under HIPAA.

      If they do that, there will definitely be giant legal battles. I wonder if that is a legal risk they’d want to take on.

      • Poayjay@lemmy.world
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        1 year ago

        HIPAA basically only covers healthcare providers and workers. I ran into this when the VA mailed my entire medical history to some random person. Since it wasn’t the healthcare branch of the VA, I had exactly zero recourse.

        • godzillabacter@lemmy.world
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          1 year ago

          That’s not true. HIPAA covers anyone handling protected health information in a professional manner. If some office clerk at the VA is mailing out copies of HIPAA-protected information, they’re bound by HIPAA. If a consulting IT firm has access to a hospital’s servers as they’re changing something about the EHR, they’re bound by HIPAA. Protected information cannot make its way from a “covered entity” to a non-covered entity like a totally unrelated bakery who would not have an obligation to protect your information without either: 1) violating the law, 2) you personally disclosing the information to the non-protected party, or 3) you or someone authorized on your behalf signing a disclosure waiver permitting the covered entity to disclose