Remarks at the Morgan State University commencement ceremony in Baltimore, Maryland

Weekly Compilation of Presidential Documents, May 26, 1997

Science must always respect the dignity of every American. Here at one of America's great black universities let me underscore something I said just a few days ago at the White House. We must never allow our citizens to be unwitting guinea pigs in scientific experiments that put them at risk without their consent and full knowledge. Whether it is withholding a syphilis treatment from the black men of Tuskegee or the cold war experiments that subjected some of our citizens to dangerous doses of radiation, we must never go back to those awful days in modern disguise. We have now apologized for the mistakes of the past; we must not repeat them, never again.

Second, none of our discoveries should be used to label or discriminate against any group or individual. Increasing knowledge about the great diversity within the human species must not change the basic belief upon which our ethics, our Government, our society are founded. All of us are created equal, entitled to equal treatment under the law. With stunning speed, scientists are now moving to unlock the secrets of our genetic code. Genetic testing has the potential to identify hidden inherited tendencies toward disease and spur early treatment. But that information could also be used, for example, by insurance companies and others to discriminate against and stigmatize people.

We know that in the 1970's, some African-Americans were denied health care coverage by insurers and jobs by employers because they were identified as sickle cell anemia carriers. We also know that one of the main reasons women refuse genetic testing for susceptibility to breast cancer is their fear that the insurance companies may either deny them coverage or raise their rates to unaffordable levels. No insurer should be able to use genetic data to underwrite or discriminate against any American seeking health insurance. This should not simply be a matter of principle but a matter of law. Period. To that end, I urge the Congress to pass bipartisan legislation to prohibit insurance companies from using genetic screening information to determine the premium rates or eligibility of Americans for health insurance.

Third, technology should not be used to break down the wall of privacy and autonomy free citizens are guaranteed in a free society. The right to privacy is one of our most cherished freedoms. As society has grown more complex and people have become more interconnected in every way, we have had to work even harder to respect the privacy, the dignity, the autonomy of each individual. Today, when marketers can follow every aspect of our lives, from the first phone call we make in the morning to the time our security system says we have left the house, to the video camera at the toll booth and the charge slip we have for lunch, we cannot afford to forget this most basic lesson.

As the Internet reaches to touch every business and every household and we face the frightening prospect that private information, even medical records, could be made instantly available to the world, we must develop new protections for privacy in the face of new technological reality.