    [Public Papers of the Presidents of the United States: WILLIAM J. CLINTON (2000, Book I)]
    [February 8, 2000]
    [Pages 198-200]
    [From the U.S. Government Publishing Office www.gpo.gov]

    [[Page 198]]

    Remarks on Signing an Executive Order To Prohibit Discrimination in
    Federal Employment Based on Genetic Information
    February 8, 2000

        Thank you very much, and good afternoon. I want to begin by thanking
    all the people at AAAS for having us here today. My longtime friend Dr.
    Shirley Malcolm, thank you; and thank you,
    Dr. Richard Nicholson.
        I thank Dr. Francis Collins; what a
    remarkable statement he made. I was thinking, when he said that line
    that I'm beating to death now that we're all genetically 99.9 percent
    the same, that the one-tenth of one percent difference between him and
    me is all the intellectual capacity for the sciences--[laughter]--
    regrettably. That's a great thing for people who care about the future
    of the human genome.
        I'm delighted to be joined here by several members of our
    administration and by three Members of Congress, showing that this is a
    bipartisan issue; it's an American issue. I thank Representative Louise
    Slaughter from New York, who was
    with me yesterday talking to me about this, and Representative Fred
    Upton from Michigan, and Representative and Dr.
    Greg Ganske from Iowa. Thank you all for being
    here. We appreciate you very much and your concern for this.
        I thank again all the people in the administration who worked on
    this, my Science Adviser, Dr. Neal Lane, and all
    the people from OPM and the EEOC and others.
        This is really a happy day for me. For years, in our administration,
    I was a sort of political front person, and now we've got the first
    election in a quarter-century that I can't be a part of. And people are
    always coming to me saying, ``Oh, this must be a real downer for you,
    you know, that the Vice President and
    Hillary, they're out there 7 o'clock
    in the morning hitting all these coffee shops; you must be''--
    [laughter]--``how are you dealing with this terrible deprivation?''
    [Laughter]
        And I went out to Caltech the other day to talk about my science and
    technology budget, and I said, ``Well, I'm using this opportunity to get
    in touch with my inner nerd''--[laughter]--``and to really sort of deal
    with these things that I have repressed all these years, that I'm
    really, really trying to get into this.'' We're laughing about this. But
    you know, it is truly astonishing that we are all privileged enough to
    be alive at this moment in history and to be, some of us, even a small
    part of this remarkable explosion in human discovery; to contemplate not
    only what it might mean for us and our contemporaries, in terms of
    lengthening our lives and improving the quality of them and improving
    the reach of our understanding of what is going on both within our
    bodies and in the far reaches of space, but what particularly it will
    mean for the whole structure of life for our children and grandchildren.
        And I am profoundly grateful to all of you who have been involved
    and who will be involved in that march of human advance in any way. That
    quest for knowledge has defined what the AAAS has done for, now, more
    than 150 years.
        We are here today, as the previous speakers have said, to recognize
    that this extraordinary march of human understanding imposes on us
    profound responsibilities to make sure that the age of discovery can
    continue to reflect our most cherished values. And I want to talk just a
    little about that in somewhat more detail than Dr. Collins did.
        First and foremost, we must protect our citizens' privacy--the
    bulwark of personal liberty, the safeguard of individual creativity.
    More than 100 years ago now, Justice Brandeis recognized that
    technological advances would require us to be ever vigilant in
    protecting what he said was civilization's most valued right, the
    fundamental right to privacy. New conditions, he said, would often
    require us to define anew the exact nature and extent of such
    protection. And indeed, much of the 20th century jurisprudence of the
    Supreme Court has dealt with that continuing challenge in various
    contexts. So, once again, Justice Brandeis has proved prophetic for a
    new century.
        Today, powerful waves of technological change threaten to erode our
    sacred walls of privacy in ways we could not have envisioned a
    generation ago--not just the ways, by the way, we're discussing here
    today. Will you ever have a private telephone conversation on a cell
    phone again? Can you even go in your own home

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    and know that the conversation is private if you become important enough
    for people to put devices on your walls? What is the nature of privacy
    in the 21st century, and how can we continue to protect it?
        But clearly, people's medical records, their financial records, and
    their genetic records are among the most important things that we have
    to protect. Last year we proposed rules to protect the sanctity of
    medical records; we'll finalize them this year. Soon I will send
    legislation to complete the job we started in protecting citizens'
    financial records. Today we move forward to try to make sure we do what
    we can to protect, in an important way, genetic privacy.
        Clearly, there is no more exciting frontier in modern scientific
    research than genome research. Dr. Collins did a good job of telling us why. And when this human
    genome project is completed, we can now only barely imagine, I believe,
    the full implications of what we will learn for the detection,
    treatment, and prevention of serious diseases. It will transform medical
    care more profoundly than anything since the discovery of antibiotics
    and the polio vaccine, I believe, far more profoundly than that.
        But it will also impose upon us new responsibilities and, I would
    argue, only some of which we now know--only some of which we now know--
    to ensure that the new discoveries do not pry open the protective doors
    of privacy.
        The fear of misuse of private genetic information is already very
    widespread in our Nation. Americans are genuinely worried that their
    genetic information will not be kept secret, that this information will
    be used against them. As a result, they're often reluctant to take
    advantage of new breakthroughs in genetic testing--making a point, I
    think, we cannot make too often: If we do not protect the right to
    privacy, we may actually impede the reach of these breakthroughs in the
    lives of ordinary people, which would be a profound tragedy.
        A Pennsylvania study, for example, showed that nearly a third of
    women at high risk for inherited forms of breast cancer refused to be
    tested to determine whether they carry either of the two known breast
    cancer genes because they feared discrimination based on the results.
    That is simply wrong. We must not allow advances in genetics to become
    the basis of discrimination against any individual or any group. We must
    never allow these discoveries to change the basic belief upon which our
    Government, our society, our system of ethics is founded, that all of us
    are created equal, entitled to equal treatment under the law.
        The Executive order I will sign in just a couple of minutes will be
    the first Executive order of the 21st century to help meet this great
    21st century challenge. It prohibits the Federal Government and its
    agencies from using genetic testing in any employment decision. It
    prevents Federal employers from requesting or requiring that employees
    undergo genetic tests of any kind. It strictly forbids employers from
    using genetic information to classify employees in such a way that
    deprives them of advancement opportunities, such as promotion for
    overseas posts.
        By signing this Executive order, my goal is to set an example and
    pose a challenge for every employer in America, because I believe no
    employer should ever review your genetic records along with your resume.
        Because by Executive order I can only do so much, we also need
    congressional action this year. In 1996 the Congress passed, and I
    signed, the Kassebaum-Kennedy bill, the health insurance portability
    law, which made it illegal for group health insurers to deny coverage to
    any individual based on genetic information. That was an important first
    step, but we must go further.
        Now I ask Congress to pass the ``Genetic Non-Discrimination in
    Health Insurance and Employment Act'' introduced in the Senate by
    Senator Daschle and in the House by
    Congresswoman Louise Slaughter,
    who is with us today. What this legislation does is to extend the
    employment protections contained in the Executive order that I will sign
    today to all private sector employees as well, and to ensure that people
    in all health plans, not just group plans, will have the full confidence
    that the fruits of genetic research will be used solely to improve their
    care and never to deny them care.
        There is something else we should do right away. We must make
    absolutely sure that we do not allow the race for genetic cures to
    undermine vital patient protections. Like many Americans, I have been
    extremely concerned about reports that some families involved in trials
    of experimental gene therapies have not been fully informed of the risks
    and that some scientists have failed to report serious side effects from
    these trials. I support the recent action by FDA and NIH to enforce
    reporting in patient safety requirements.

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        Today I'm asking Secretary Shalala to
    instruct FDA and NIH to accelerate their review of gene therapy
    guidelines and regulations. I want to know how we can better ensure that
    this information about the trials is shared with the public. I want to
    know whether we need to strengthen requirements on informed consent. If
    we don't have full confidence in these trials, people won't participate,
    and then the true promise of genetic medicine will be put on hold. We
    cannot allow our remarkable progress in genomic research to be
    undermined by concerns over the privacy of genetic data or the safety of
    gene therapies. Instead, we must do whatever it takes to address these
    legitimate concerns. We know if we do, the positive possibilities are
    absolutely endless.
        I said this the other day, but I would like to reiterate--I think
    maybe I am so excited about this because of my age. I was in the
    generation of children who were the first treated with the polio
    vaccine. And for those of you who are much younger than me, you can't
    imagine what it was like, for our parents to see that--the literal
    terror in our parents' eyes when we were children, paralyzed with fear
    that somehow we would be afflicted by what was then called infantile
    paralysis; and the sense of hope, the eagerness, the sort of nail-biting
    anticipation when we learned of the Salk vaccine and all of us were
    lined up to get our shots. Unless you were in our generation, you cannot
    imagine. And the thought that every other problem that could affect the
    generation of my grandchildren could be visited with that level of
    relief and hope and exhilaration by the parents of our children's
    generation is something that is almost inexpressible.
        We have to make the most of this. And we know, we have learned from
    over 200 years of experience as a nation, knocking down physical and
    intellectual frontiers, that we can only spread the benefits of new
    discoveries when we proceed in a manner that is consistent with our most
    ancient and cherished values. That is what this day is all about. So to
    all of you who have contributed to it, I thank you very, very much.
        Now I would like to ask the Members of Congress who are here and
    members of the administration who are here who have been involved in
    this to come up with me. And all I have to do is write my name.
    [Laughter] That's a pretty good deal. You can write the human genome
    code, and I'll write my name--[laughter]--and that takes full account of
    the one-tenth of one percent difference in our genetic makeup.
    [Laughter]
        Thank you very much.

    Note: The President spoke at 12:40 p.m. in the auditorium at the
    American Association for the Advancement of Science (AAAS). In his
    remarks, he referred to Shirley Malcolm, head of the directorate for
    education and human resources programs, and Richard S. Nicholson,
    member, board of directors, and executive officer, AAAS; and Francis S.
    Collins, Director, National Human Genome Research Institute, National
    Institutes of Health. The Executive order is listed in Appendix D at the
    end of this volume.