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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