    [Public Papers of the Presidents of the United States: William J. Clinton (1997, Book II)]
    [July 14, 1997]
    [Pages 956-958]
    [From the U.S. Government Publishing Office www.gpo.gov]

    Remarks Announcing Proposed Legislation To Ban Discrimination Based on
    Genetic Screening
    July 14, 1997

        Thank you very much. You know, very often when I come into this room
    for an event like this, to stand up for a cause I believe in, by the
    time it's my turn to speak, there is nothing else to say. [Laughter] But
    that has never been more true than it is at this moment. Mary Jo, you
    were terrific, and we thank you. Thank you very much.
        Secretary Shalala, Congresswoman Slaughter, Dr. Collins, the head of
    our genome project, Susan Blumenthal, the head of the Women's Health
    Office at HHS, ladies and gentlemen, thank you for being here.
        I want to say a special word of thanks, too, to Congresswoman Louise
    Slaughter. Both our

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    families have known losses--and hers very recently--and we appreciate
    her being here. I love to hear Louise Slaughter talk with her beautiful
    southern accent. The first time I heard she was a Congresswoman from New
    York, I thought it was a misstatement. [Laughter] And from my point of
    view, she's the only Member of Congress from New York who speaks without
    an accent, and I like that. [Laughter]
        The remarkable strides that we have seen in genetic research and
    testing are so important to every American family. Chances are, every
    family represented in this room in our lifetime will have a child, a
    grandchild, a cousin, a niece, a nephew somehow benefited from the work
    of the human genome project, which seemed nothing more than an
    intellectual dream just a few years ago. And one of the things that we
    have to do is to make sure that every American family has a chance to
    benefit from it.
        Secretary Shalala's report which she has issued--it's a remarkable
    report; I commend it to all of you--makes it clear that the scope of
    this era of discovery is truly astonishing. We are literally unlocking
    the mysteries of the human body, finding new and unprecedented ways of
    discovering not only the propensity for it to break down in certain ways
    or lead to certain forms of disease or human behavior but also ways to
    prevent the worst consequences of our genetic structure.
        And as with every kind of decision like this, there is always the
    possibility that what we learn can not only be used but can be misused.
    And in all of this era of scientific discovery, there is probably no
    greater promise for use or for misuse than in the area of genetic
    testing. Used in the right way, obviously it has the chances to save
    millions of lives and revolutionize health care. And I am proud of our
    aggressive support for the human genome project.
        But it's also clear that it is wrong for insurance companies to use
    genetic information to deny coverage. It's happened before. It happened
    in the 1970's with some African-Americans who carried sickle cell
    anemia. And it can happen in many other ways. An enormous number--
    percentage of American women get breast cancer at some time during their
    lives. An enormous percentage of American men get prostate cancer at
    some time during their lives. There are other kinds of medical problems
    that occur with increasing frequency and that we'll see more and more as
    we grow older as a population.
        And now we see the consequences already of this kind of
    discrimination. It's wrong when someone avoids taking a test that could
    save a life just because they're so afraid that the genetic information
    will be used against them. And too many women today fear that that will
    happen when they decide to test or to not be tested to see if they carry
    the gene for breast cancer.
        Now, this kind of discrimination is--really it's more than wrong;
    it's a life-threatening abuse of a potentially life-saving discovery.
    And I can't help commenting that in the United States, it is a direct
    consequence of the fact that we are the only advanced country in the
    world that has chosen to finance the health care of our citizens through
    a private insurance system that is completely optional and does not
    cover everyone. So that to be fair, the insurance companies themselves
    face some dilemmas that can only be fixed by the law, by a restatement
    of the public interest, so that none are treated differently from others
    if they make the decision to do what is morally right. And I think
    that's important to point out. I tried to fix it once and took a lot of
    criticism, but I'm not--[laughter]--I'm not ashamed that I did. If I
    could fix it tomorrow, I would fix it tomorrow, because this is not
    right.
        But we have done what we could to try to, step by step, change this
    structure. A year ago, we took the first step when Congress passed and I
    signed the Kennedy-Kassebaum bill, which prohibits group health plans
    from using genetic information to deny coverage. And today my
    administration is sending legislation to Congress that will ban all
    health plans, group and individual, from denying coverage or from
    raising premiums on the basis of genetic tests. It will prohibit all
    health plans from disclosing genetic information that could be misused
    by other insurers. But it will protect researchers' ability to make the
    best use of this vitally important tool.
        It builds on the solid foundation of Congresswoman Slaughter and
    Senator Olympia Snowe's bill, and I'm pleased to say that Senator Frist
    from Tennessee and Senator Jeffords from Vermont have announced that
    they will share our commitment and they will work with us to pass
    bipartisan legislation to ban discrimination based on genetic tests.

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        This is an example of the step-by-step approach we are now taking
    that I will not be satisfied with until we have made sure that every
    American family has the health care they need to thrive. We've already
    ensured that a job change or an illness in the family doesn't mean
    automatically losing your health insurance. We've made it easier for
    self-employed people to buy health insurance for their families. The
    balanced budget agreement I have reached with the leaders of Congress,
    that was voted for in its outline by overwhelming majorities in both
    parties and both Houses, will extend care to millions and millions of
    uninsured children. It will ensure, as Secretary Shalala said, that more
    older women can have mammograms. It will protect Medicare and Medicaid.
        But what we're here today to say is something very simple and yet
    profound. We cannot afford to let our progress either in science or in
    extending health care to the American people to be undermined by the
    misuse of what is a miracle of genetic testing. Americans should never
    have to choose between saving their health insurance and taking tests
    that could save their lives. With these efforts, we will ensure at least
    that no American ever has to make that choice again.
        Thank you very much.

    Note: The President spoke at 2:55 p.m. in the East Room at the White
    House. In his remarks, he referred to Mary Jo Ellis Kahn, breast cancer
    survivor and member, National Action Plan on Breast Cancer; and Francis
    S. Collins, director, National Center for Human Genome Research.