5 ms·

I think they were probably referring to the more mundane use of insurance companies buying the data and raising premiums for people with genetic risk factors. W

I think they were probably referring to the more mundane use of insurance companies buying the data and raising premiums for people with genetic risk factors. Which IMO seems very plausible.

shadowgovt 7y ago
It's not impossible, but if it happens, it'll be a hell of a lawsuit. That scenario is specifically carved out as unacceptable in US law.
- LunaSea 7y ago
  And we know that no law going against the citizen's own interests ever passed.
  - shadowgovt 7y ago
    Absolutism doesn't really help in crafting good policy. The threat that bad things could possibly, maybe happen isn't a good reason to stop chasing disease cures. If we knew the ways vaccination programs would be abused, should we have refrained from inoculating so much of the world against polio?
    - LunaSea 7y ago
      It absolutely is and it's also the reason the FDA has a process you have to follow before doing human testing before potentially killing people with a new treatment you're trying to develop.
      - shadowgovt 7y ago
        Yes, exactly. There's a process to follow to minimize risk in human testing. Human testing isn't categorically banned.
        LunaSea 7y ago
        Correct, because we thought about the cost and risk of early human trials. Which isn't the case here. You're happy to forego any protection of the people involved.
        shadowgovt 7y ago
        I think the case is that people have put quite a bit of thought into costs and risks of big-data aggregation of DNA and come to different conclusions on what risks are realistic and what the consequences of those risks are.
        LunaSea 7y ago
        They clearly haven't since they didn't even bother asking their users.
        shadowgovt 7y ago
        It would be hard for them to be more clear about it. https://www.23andme.com/about/consent/ https://www.23andme.com/about/consent/ "Which of my personal information is used for research?" "Your genetic data and any other personal information you enter into the website, except for your Registration Information (name, contact information, and credit card information), may be analyzed in the research." It really seems people are complaining because 23andme didn't demand they sign a consent for something they had already explicitly signed a consent to. I, for one, assumed large third-party pharmaceutical companies would have access to the data when I volunteered it. Is there significant risk people misunderstood that? How?

I think they were probably referring to the more mundane use of insurance companies buying the data and raising premiums for people with genetic risk factors. Which IMO seems very plausible.

shadowgovt 7y ago

It's not impossible, but if it happens, it'll be a hell of a lawsuit. That scenario is specifically carved out as unacceptable in US law.

LunaSea 7y ago
And we know that no law going against the citizen's own interests ever passed.
- shadowgovt 7y ago
  Absolutism doesn't really help in crafting good policy. The threat that bad things could possibly, maybe happen isn't a good reason to stop chasing disease cures. If we knew the ways vaccination programs would be abused, should we have refrained from inoculating so much of the world against polio?
  - LunaSea 7y ago
    It absolutely is and it's also the reason the FDA has a process you have to follow before doing human testing before potentially killing people with a new treatment you're trying to develop.
    - shadowgovt 7y ago
      Yes, exactly. There's a process to follow to minimize risk in human testing. Human testing isn't categorically banned.
      - LunaSea 7y ago
        Correct, because we thought about the cost and risk of early human trials. Which isn't the case here. You're happy to forego any protection of the people involved.
        shadowgovt 7y ago
        I think the case is that people have put quite a bit of thought into costs and risks of big-data aggregation of DNA and come to different conclusions on what risks are realistic and what the consequences of those risks are.
        LunaSea 7y ago
        They clearly haven't since they didn't even bother asking their users.
        shadowgovt 7y ago
        It would be hard for them to be more clear about it. https://www.23andme.com/about/consent/ https://www.23andme.com/about/consent/ "Which of my personal information is used for research?" "Your genetic data and any other personal information you enter into the website, except for your Registration Information (name, contact information, and credit card information), may be analyzed in the research." It really seems people are complaining because 23andme didn't demand they sign a consent for something they had already explicitly signed a consent to. I, for one, assumed large third-party pharmaceutical companies would have access to the data when I volunteered it. Is there significant risk people misunderstood that? How?