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  • ECO
    --Site Admin--
    • Oct 2007
    • 1360

    New York State has a lot of nerve...

    I just saw this article over a GenomeWeb, and like most news items these days, it reminded me of how out of control our government has become in limiting the free market...



    ...who do they think they are protecting, and from what?

    Useless bureaucrats...
  • Mr. Gunn
    Member
    • Dec 2007
    • 10

    #2
    Originally posted by ECO View Post
    I just saw this article over a GenomeWeb, and like most news items these days, it reminded me of how out of control our government has become in limiting the free market...



    ...who do they think they are protecting, and from what?

    Useless bureaucrats...
    New York is on a roll now. Wanting to collect sales tax from Amazon and now this. I'm not sure why they're sending letters to device makers, and not the companies offering the tests. Also, certification should be handled in the jurisdiction where the company is, not necessarily where the patients are, don't you think?

    This whole thing as an issue is side-stepping the more important question of who gets access to this information and what they're allowed to do with it. The whole GINA legislation is kinda ridiculous, because it doesn't provide for a specific way to know who's getting access to what.

    One way I thought might work is for this to be handled similarly to the way consumer credit information is handled by the credit bureaus, with a secure central database to which all access is logged and is available only to specific entities for specific reasons.

    I'm real nervous about a bunch of start-up companies(aka acquisition targets) all having their own databases of bunches of people. There's no telling where that data will end up.

    Comment

    • ECO
      --Site Admin--
      • Oct 2007
      • 1360

      #3
      Originally posted by Mr. Gunn View Post
      I'm real nervous about a bunch of start-up companies(aka acquisition targets) all having their own databases of bunches of people. There's no telling where that data will end up.
      I agree 100%, but that's why I'm not in line to get genotyped by one of these companies.

      This doesn't mean the government should step in to "protect" everyone.

      Comment

      • Mr. Gunn
        Member
        • Dec 2007
        • 10

        #4
        Originally posted by ECO View Post
        I agree 100%, but that's why I'm not in line to get genotyped by one of these companies.

        This doesn't mean the government should step in to "protect" everyone.
        Not by such ham-handed approaches as the ones they're using, certainly, but there does need to be some regulations in place that cover everyone, rather than the industry handling issues in different ways as they come up.

        These guys need to get together and work with the lawmakers to propose sensible regulations for access and use of data, because the lawmakers can't do it themselves. I mean, the people who would be proposing the legislation don't have the scientific training to understand just exactly what next-gen sequencing is and what can be done with it, so they're bound to screw things up horribly unless they get good information from people who know what they're talking about. This is a crucial time for the whole industry to get together and do something, before other interested parties with different concerns come in to influence legislation to suit themselves, such as the marketers and insurance companies.

        Let's face it, the government won't be able to keep its hands off, so you might as well see that the inevitable regulations are at least good ones.

        Comment

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