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REMARKS BY:	DONNA E. SHALALA, SECRETARY OF HEALTH AND HUMAN SERVICES
PLACE:		The Health Insurance and Genetic Discrimination Event, Washington, D.C.
DATE:		July 14, 1997

From researchers to advocates, and from legislators to our National Action Plan on Breast Cancer - it is the people in this room who have brought us here today, and it is the people in this room who will bring us to where we need to go tomorrow in the fight against genetic discrimination -- a fight made even more important as we make progress in the battle against breast cancer.

Under the President's leadership, NIH is spending 76 percent more for breast cancer research than it did in 1993. And now, as we work to reform Medicare and extend the life of the Trust Fund, the Senate and the House must pass a budget that includes Medicare coverage co-payments and deductibles for older women who get mammograms.

Because of our sustained investments in science, we are now traveling down the revolutionary road of genetic research - a road marked by both great promise and by great ethical dilemmas.

Over the last three years, we've seen that great promise in the discovery of genes linked to hereditary breast cancer and many other diseases; and we took an important step toward meeting the ethical dilemmas of genetic research when the Kassebaum-Kennedy bill became the law of the land. But because every person has mistakes in their genetic code, and every disease -- not just breast cancer -- is partially rooted in genetics, clearly we must do more.

That's why Mr. President I'm proud to present you with our report: Health Insurance in the Age of Genetics that tells us all about the risks and rewards of genetic testing.

For example, over 20 percent of people in families with a genetic disorder report that they, or a family member, have been refused health insurance on the basis of their genetic profile. And in a survey, over 85 percent of Americans say they are concerned that employers and insurance companies might have access to - and use - their genetic information.

These numbers send us a clear message:

We must enact bi-partisan legislation to stop genetic discrimination - and we must do so now. Together, we must make sure that no American is afraid to walk through the doors of their doctor's office for fear that their genetic secrets will be used to close the door to affordable health insurance.

We must make sure that no life saving cure or treatment is lost because families, fearing discrimination, refuse to participate in genetic research. And as genetic research continues to unlock the mysteries of human disease, we must make sure that the privacy rights of every American are respected and protected.

That is a fight that Congresswoman Louise Slaughter continues to lead. Already one of the most passionate supporters of women's health in Congress, especially in our battle against breast cancer, Congresswoman Slaughter is now fighting hard to make sure that no American falls victim to genetic discrimination.

She has been a conscience for our nation on this issue.

Thank You.