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Last Thursday, the U.S. House of Representatives passed The Genetic Information Nondiscrimination Act (GINA) with a vote of 414 to 1. Lauded by most media pundits as an example of “forward-looking” legislation, the bill forbids companies from viewing the genetic profiles of their clients or employees. President Bush has promised to sign the bill.

But just how “forward-looking” is GINA? Does current genetic technology really put us in danger of genetic discrimination? How much longer before the themes in Gattaca become reality?



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Comments

  1. #1 Si Lenzbegone
    May 6, 2008

    …and I am worried that potential US presidents are not tested. After spending a $billion-dollars on this campaign…we actually know very little about the candidates…we don’t know how they think about Church-state separation, nuclear power, stem cells, Teri Schiavo’s carnival outside her Hospice, Darwin, unhealthy foods in school food. We knew nothing about GWB.
    People vote for a candidate because of his style…whether they want to drink a beer with him. Shouldn’t they be given a test? Let’s hope for a discussion…rather than the typical debate….like the Bill Maher show…and see how they think about things!! Si

  2. #2 Si Lenzbegone
    May 6, 2008

    …and I am worried that potential US presidents are not tested. After spending a $billion-dollars on this campaign…we actually know very little about the candidates…we don’t know how they think about Church-state separation, nuclear power, stem cells, Teri Schiavo’s carnival outside her Hospice, Darwin, unhealthy foods in school food. We knew nothing about GWB.
    People vote for a candidate because of his style…whether they want to drink a beer with him. Shouldn’t they be given a test? Let’s hope for a discussion…rather than the typical debate….like the Bill Maher show…and see how they think about things!! Si

  3. #3 Mary
    May 6, 2008

    I don’t really understand the question:

    Does current genetic technology really put us in danger of genetic discrimination?

    This discrimination has already occurred. It has been documented. The testimony before Congress offered more than one story about this. From this page:
    http://waysandmeans.house.gov/hearings.asp?formmode=detail&hearing=539

    If you read Sharon Terry’s testimony you will find several stories. The one that made my head explode was the one about the kids denied insurance by Humana because of a condition their mother had. The kids were unaffected carriers. But that’s not the only story, of course. There are plenty already. And we are only in the earliest stages of GWAS with the power to draw correct conclusions and incorrect suggestions about what we carry.

    Which side of the interpretations do you think insurance providers will be on? Yours–where they conclude the risk isn’t that bad, or theirs–where you get dumped on the flimsiest of pretense?

    I would also like to know how many people have had to get their own health insurance in correlation with the answers.

    It reminds me of the joke about men: they think clean underwear comes out of a drawer.

  4. #4 Warren
    May 7, 2008

    The question, “Does current genetic technology really put us in danger of genetic discrimination? ” in relation to the passage of GINA doesn’t make sense.

    Even if technology isn’t ‘there’ yet (and I believe it is), is this a reason not to prepare for it as a society?

    In other words, the sentence seems to imply there is no reason to learn to swim until we are underwater.

  5. #5 Ginny
    May 7, 2008

    Point taken, Warren. But on the other hand, how can Congress write a bill that protects us from something that doesn’t actually exist yet? I can’t think of another piece of legislation that has taken this preemptive approach.

  6. #6 Mary
    May 7, 2008

    Is my post invisible to anyone but me? Is that link to Congressional testimony not working? If you think Sharon’s was false (it wasn’t), you can see the testimony of the other guy who lost his job–the Burlington Northern one.

    What do you think doesn’t exist yet? Genes? Insurance companies? Workplaces? Discrimination? Hint: they all do.

  7. #7 Warren
    May 7, 2008

    Well, first, the threat and technology DO exist. Mary commented above with clear examples.

    And legislation is often passed to prempt problems or to mitigate problems we can obviously see or predict or are starting, and should be. For example, global warming hasn’t yet affected us adversely, should we wait till Miami is underwater before we pass legislation to mitigate the effects of global warming?

    Our government’s entire model of funding of basic research is based on the idea that ‘future thinking’ of problems and solutions we can’t even yet see.

    Seems like very good governance to mitigate problems we can obviously see and that are already starting before we face the onslaught.

    You know the old saying, an ounce of prevention = pound of cure.

  8. #8 Mary
    May 8, 2008

    Cool–my cloak of invisibility is working! I will use it for good, I assure you.

    [Subliminal message to follow]

    Francis Collins’ testimony includes this additional anecdote and data:

    Yet, in this family, after much discussion amongst the family members, not a single one of them decided to take advantage of that test, even though we know that in this situation, knowing you’re at high risk can be life saving, allowing you then to get into a program of annual colonoscopy starting at a very early age, picking up that early tumor while it is still easily treated. So, this is a real example where the risk of genetic discrimination is probably going to cost somebody their life because of their fear of being able to get the information that they otherwise need. That is not just this family. A recent survey done by my colleague, Kathy Hudson, revealed a couple of weeks ago 93 percent of the American public, when asked the question whether this kind of genetic information ought to be available to employers or health insurance companies said, absolutely no. So, this is a widespread concern.

    I highlighted a part for special notice. TODAY people are not getting tested. They are not participating in research projects for this fear. This is not theoretical.

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