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Tuesday, January 20, 1998
We are gathered here today at a moment of enormous possibility -- a time
when science and technology are making such rapid advancements, we can barely
keep up with them. And nowhere is this more true than in the field of genetics.
Right now, we are on the verge of finding the causes and cures for some of our
worst plagues and problems. Nearly every week a new gene discovery is reported
-- offering new hope for a more healthy future.
We need that progress to continue -- and we need to ensure that every
American has confidence that our science is advancing in a way that is
consistent with our values. That is what I hope to address this
afternoon -- how we must act to ensure that the stunning, 21st Century
advancements in our science, and the enormous benefits they bring, do not also
bring new, 21st Century forms of discrimination and exclusion.
Let me begin by stating the obvious: President Clinton and an unshakable
commitment to the Human Genome Project -- a commitment we share with all of
you. For its benefits are clear:
In the next few years, the human genome will be completely sequenced --
giving us, for the first time, the full instruction manual for the human body.
Understanding the genetic code could lead to better disease prevention, more
early treatment, and a whole new way of understanding disease itself. And the
pace of knowledge is astonishing: in the 1980's it took scientists -- including
Dr. Francis Collins -- nine years to isolate the gene that causes cystic
fibrosis. Last year, the gene responsible for Parkinson's disease was mapped in
only nine days.
Already, through advances in genetics, tests are available to find
predispositions to Huntington's disease and certain types of breast cancer.
Many of you have been at the forefront of our progress in finding the genetic
components of cancers and brain disorders, or in spelling out the complete
genomes of almost a dozen germs.
In August, I unveiled the Cancer Genome Anatomy Project -- the
comprehensive clearinghouse of information about tens of thousands of cancer
genes, which will enable scientists and researchers around the world to work
together through a website available on the Internet, to bring us closer a
cure.
Just over the horizon lies a future where we will know the location and
makeup of every human gene. It is hard to overstate the revolutionary nature of
this milestone.
But in the whirlwind of the bio-revolution, we must hold tight to our
deepest and oldest values, and make them one with our newest science. In
particular, we cannot let our newest discoveries serve as the newest excuse to
unleash the vulnerability to discrimination that has plagued us throughout
human history -- on the basis of race and ethnicity, religion and gender,and
now, genetic predisposition to disease.
Yesterday, I had the honor of speaking, on Martin Luther King Day, from
the very pulpit where Dr. King presided, at Ebenezer Baptist Church in Atlanta.
And I spoke about what I believe is a deeply-rooted vulnerability, inherent in
human nature, to prejudice. Of course, yesterday I was talking about racial and
ethnic prejudice, and the largely visible differences that we must work to
overcome and ultimately transcend. But even hidden differences among people
carry the potential for unleashing an impulse to compare, and to
discriminate.
As many of you know, modern genetics offers some of the most irrefutable
arguments for the commonality of humankind. For example, scientists tell us
that the differences between people of one race and people of another race are
slight indeed. We share 99.9% of the estimated three billion bits of genetic
information encoded in our DNA. In fact, there can be more genetic difference
within racial groups than between them; a black person and a
white person could be closer in their genetic make-up than two blacks or two
whites.
But in truth, we have still not completed Dr. King's work, to fully
appreciate and transcend the most visible and obvious differences in our
society. We surely cannot let the unseen and, until recently, unknown
differences in our DNA create new triggers for human vulnerability; new excuses
for job discrimination; new threats that will lead people to avoid preventive
health care, and not take advantage of the enormously positive and productive
advances that are being made in genetics today.
In this sense, our challenge is to harness the good in these genetic
breakthroughs, and to avoid even the potential for the not-so-good. This is not
an entirely unprecedented challenge. It didn't take a rocket scientist to
realize that Werner Von Braun's work could be used both to rain down terror on
London during the blitz, and to carry a man to the moon. Fifty years ago, the
question we faced was how to harness our discovery of the splitting of the atom
-- to make it a force for progress, not a source of destruction. President
Truman understood that challenge when he said the power of the atom was both
"full of potential danger" and "full of promise for the future." Controlling
the potential for discrimination is just as important as controlling the atom
itself.
Thanks to James Watson, we all know about the double-helix. And we've
all heard of the double-edged sword. Welcome to the world of the double-edged
helix. As many of you know, this is a gene chip -- a thin slice of silicon
about the size of a postage stamp that promises to have an enormous impact on
the future of medicine. On one hand, it will give us critical information about
our genetic codes. On the other hand, it will test our ability as a people to
deal with the ramifications of that information. Within a decade, it will be
possible for our doctor take a cheek swab, place a few of our cells on a gene
chip scanner, and quickly analyze our genetic predisposition to scores of
diseases. For many of those who are predisposed to certain diseases, treatment
and life-saving prevention can begin right away. And those without such
predispositions will receive perhaps the greatest gift of all -- peace of
mind.
Unfortunately, some habits of the human heart are hard to break. Today,
the fear of genetic discrimination is prompting Americans to avoid genetic
tests that could literally save their lives. And that can make this form of
discrimination a serious threat to our public health. According to one study,
63% of Americans would not take a genetic test if their health insurers or
employers could get access to the results. Many women have put off getting
genetic tests for breast cancer because of a fear of discrimination.
We know the story of one woman who decided to take a test for
Huntington's disease, when her mother was diagnosed with the illness. The tests
showed that she had a mutated gene that causes Huntington's. She shared the
news with her employer and co-workers. Even though she wasn't sick -- even
though she'd had outstanding job reviews and three promotions in eight months
-- she was fired from her job. Today, sadly but not surprisingly, none of her
sisters will have the same genetic test. They would sooner suffer from not
knowing their genetic vulnerabilities than suffer their sister's cruel and
undeserved fate.
We have seen cases of people lying about the cause of death of their
relatives in obituaries, so that their employers wouldn't find out about
genetic disorders in their family trees. No American should have to lie about
the death of a loved one in order to save their job. Genetic discrimination is
wrong -- it is as unwarranted as every other form of discrimination -- and
together, we must take new action to end it.
President Clinton and I have worked hard to ensure that genetic progress
does not breed genetic prejudice. Six months ago, the President announced our
support for legislation to guarantee that no Americans who buy health
insurance are denied or lose that insurance, or have their rates changed,
because of genetic information.
Today, I am pleased to announce our support for new and aggressive
legislative action to curb genetic discrimination. Today, President Clinton and
I are calling for legislation to bar employers from discriminating on the basis
of genetic information. Congress must act today, to prevent and to punish the
discrimination of tomorrow. In the words of Thomas Jefferson, "Our laws and
institutions must go hand-in-hand with the progress of the human mind." It is
clear that cracking the genetic code is of considerably less benefit if we
allow our moral code to become cracked as well.
Our recommendations come from an in-depth report I am releasing today,
authored by our Department of Labor -- working closely with our Department of
Health and Human Services, our Department of Justice, and the Equal Employment
Opportunity Commission.
Deputy Labor Secretary Kitty Higgins will discuss the specifics shortly,
but let me briefly outline our position. The legislation we are calling for
today will prohibit employers from requesting or requiring genetic information
for hiring; it will prevent on-the-job discrimination; and it will ensure that
genetic information is not disclosed without the explicit permission of the
individual. Of course, most employers would never dream of
discriminating on the basis ofgenetic information. Most employers would be as
appalled by the practice as I am. But the law must protect us from the few bad
apples in the barrel. Some states already have protections on the books. But a
patchwork quilt isn't enough -- we need a strong blanket of protection from the
chills of discrimination and prejudice.
Few in this country -- except perhaps the people in this room -- could
have predicted the remarkable progress we have made in genetics, in the Human
Genome Project, and in all of the sciences in just a few short years. These
achievements can help build an America that is healthier in both body and in
spirit. But science and society must advance together, for neither can
truly advance alone.
Today's miraculous scientific achievements can help build an America
that is healthier in both body and spirit. That's no small feat -- but science
and society must always advance together, for neither can truly advance alone.
The medical discoveries today's scientists make instantly become woven into the
fabric of our society. So let us commit ourselves today to ensuring that our
genetic code and our moral code remain forever intertwined. Thank you.
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