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Senate Votes to Prevent Genetic Discrimination in the Workplace

As research of preventative genetic testing increases, many fear the impact this information can have on employment and health-insurance practices -- leading the Senate to vote Thursday to ban genetic-based discrimination. An expert on genetics examines the issue.

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    As scientific research brings ever-greater knowledge of our genetic make-up, all this new personalized data has also raised privacy and other legal concerns.

    Yesterday, the Senate unanimously passed what's being touted as landmark legislation in this area. The House is expected to approve it next week, and President Bush has said he'll sign it into law.

    The Genetic Information Nondiscrimination Act prohibits insurers from denying coverage to patients and employers from making hiring and other decisions based on genetic test results.

    Here to tell us more is Francis Collins, director of the National Human Genome Research Institute at the National Institutes of Health. That's a mouthful. Sorry, I got it out.

  • FRANCIS COLLINS, National Human Genome Research Institute:

    You got through it.


    Thanks for joining us.


    It's great to be here.


    Explain the problem that required an act like this.


    Well, you could say this is the bill for people with DNA, and that would be all of us, because that's our instruction book. It's also the bill for people with DNA that has glitches in it, and that would also be all of us.

    We all have little places in our instruction book, places at risk for something, some of them fairly dramatic, some of them less so.

    The idea that that information, which none of us get to choose, which you simply inherit from your parents, might be used to deny you coverage, in terms of health care, or to be used in a way that would deny you access to a job or a promotion is really not a comfortable situation for people to contemplate. And that's been pretty clear now for more than a decade.

    And so the real solution here really required this kind of legislation that would say, "That information just ought to be off the table when those decisions are being made."


    There are cases, documented cases, where this has happened, where there has been misuse, or are we mostly looking ahead to the future here?


    There are some documented cases, not a huge number, in part because some of the people who've been discriminated against are pretty reluctant to step forward and talk about it for fear that it might happen in even larger ways.

    And, also, most of us haven't yet had the chance to have a genetic test conducted on us, so we haven't yet faced that discriminatory risk. But that's coming.

    We are in the midst of a deluge of discovery, and a very exciting one, about genetic risk factors for diabetes, for heart disease, for cancer, for asthma, for high blood pressure, all of these conditions that have been pretty mysterious. And that's going to put us in a position, if we're interested, in finding out our own situation to plan prevention better.

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