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Director of NHGRI Applauds President Clinton's Action to Protect Federal Workers From Genetic Discrimination

February 2000

On February 8, 2000, President Clinton signed an executive order that prohibits federal government agencies from obtaining genetic information from employees or job applicants or from using genetic information in hiring and promotion decisions. Joining President Clinton at the announcement was Dr. Francis Collins, director of the National Human Genome Research Institute (NHGRI) whose programs on the ethical, legal and social implications of the Human Genome Project (HGP) have catalyzed the development of sound policy principles on this issue. Employment Discrimination and the Executive Order.

Dr. Collins oversees the National Institutes of Health's (NIH) programs in the HGP, the international coalition that is deciphering the sequence of the estimated 3 billion basepairs, or chemical letters, in human DNA, which determines not only physical features but also genetic predispositions to such diseases as cancer, heart disease, Alzheimer's disease and diabetes.

At the event, held at the American Association for the Advancement of Sciences, Dr. Collins made the following comments:

Mr. President, Dr. Malcolm, Ladies & Gentlemen:

It is a great pleasure to be here today to celebrate scientific advances in genetics that will improve our quality of life, and at the same time put in place social policies to prevent potential misuses of these new and powerful technologies. I would particularly like to recognize and thank colleagues in the Department of Labor, the EEOC, and the White House, who have worked so hard to prepare for today's Executive Order.

Rapid advances in the Human Genome Project and the study of human genetics are providing powerful tools for us to understand the instructions in our genetic material. We are daily gaining insights into the mysteries of the human cell, how it works, and why sometimes...it doesn't. Though the Human Genome Project only got underway a decade ago, the free access to the data it produces has already led to a great profusion of discoveries about the genetic basis of a very long list of diseases. Initially these discoveries related to relatively rare conditions, but increasingly now the same powerful approaches are uncovering hereditary factors in heart disease, diabetes, Parkinson's disease, bipolar illness, asthma, and other common illnesses of our society.

These revelations hold within them the promise of a true transformation of medical practice. Quite possibly before the end of the first decade of this new millennium, each of us may be able to learn our individual susceptibilities to common disorders, allowing the design of a program of effective individualized preventive medicine focused on lifestyle changes, diet and medical surveillance to keep us healthy. This will also enable us to spend our precious health care resources on maintaining wellness instead of relying on expensive and often imperfect treatments for advanced disease.

These same discoveries about genetics will lead us to predict who will respond most effectively to a particular drug therapy, and who may suffer a side effect and ought to avoid that particular drug. Furthermore, these remarkable advances will lead us to the next generation of designer drugs, focused in a much more precise way on the molecular basis of common illnesses, giving us a much more powerful set of targeted interventions to treat disease.

But genetic information and genetic technology can be used in ways that are fundamentally unjust. Genetic information can be used as the basis for insidious discrimination. Already, with but a handful of genetic tests in common use, people have lost their jobs, lost their health insurance, and lost their economic well being because of the misuse of genetic information. It is estimated that all of us carry dozens of glitches in our DNA - so establishing principles of fair use of this information is important for all of us.

An example: One individual was screened and learned he was a carrier of a single misspelled gene for Gaucher's disease. His carrier status indicates that he might pass this mutation to his children, but that he would never develop Gaucher's disease himself. He revealed this information when applying for a job and was denied the job because of his genetic status, even though it had no bearing on his present or future ability to perform a job.

David, who lives in the midwest, has a strong family history of colon cancer. He wants to do everything he can to increase his odds for a long and healthy life. Luckily, effective screening exists for colon cancer, using a procedure called colonoscopy. And yet, to get these medical services, David must disclose his family history in great detail ... something he worries about. He is also contemplating genetic testing, which is available today for colon cancer risk. But he is worried about the results ... who will get them ... and how they will be used. Will he lose his job? His health insurance?

Already in genetics research studies, we are seeing individuals who opt not to participate in research because of their fear that this information could fall into the wrong hands and be used to deny them a job or a promotion. As the clinical applications of genetics move out of the research lab and into clinical practice, this problem will only become more acute. As a nation, we have stated unequivocally in the Americans with Disabilities Act and the Rehabilitation Act that one's ability to do a job should be judged on just that ... the ability to do the job.

The challenge, and it is a formidable one, is to nurture scientific exploration, encourage the translation of these new discoveries into life saving medicines, and to put in place public policies reflective of our core American values that prevent the unjust, unfair and discriminatory use of genetic information.

Mr. President, you got it exactly right in your address in 1997 at Morgan State, where you said: "We have not and we must not shrink from exploring the frontiers of science. But as we consider how to use the fruits of discovery, we must also never retreat from our commitment to human values, the good of society, our basic sense of right and wrong."

Mr. President, I know that you know that you and I, like any other two Americans, regardless of ethnic group, are 99.9 percent genetically identical. Even as we speak, scientists are creating a catalogue of the common genetic variants in the human family. This holds tremendous promise for understanding disease and, with intelligence and ingenuity, being able to develop new treatments to combat disease. To put in place today a policy to ensure these differences are not used as a basis for insidious discrimination is historic and visionary.

Mr. President, time and time again I have been amazed and gratified by your intense interest in science, the sophistication and intelligence you bring to complex issues in science and technology, and the vision you have for how science and social values can be merged for the betterment of society. Today, genetics brings unprecedented opportunities for preventive medicine. I am pleased and proud that that with your forethought and wisdom, we can also practice preventive policy-making; to put in place the kind of protections that the public needs and deserves before we find ourselves in a needless crisis situation.

Antoine de Saint-Exupery, the author, wrote, 'Your goal is not to foresee the future, it is to enable it.' The President's actions today, and the legislation which we hope will soon follow in the Congress, will enable the kind of future the American people deserve - where medical advances are available for all, without fear of misuse.

And now, it is a high honor and a exceptional personal privilege to introduce to you a true visionary of the future of health care and society, the President of the United States of America, William Jefferson Clinton.

Last updated: June 25, 2013