[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]


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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.