Bill Clinton: “S. 1053 has the laudatory goal of prohibiting genetic discrimination. Genetic discrimination has many victims, and their…”

“S. 1053 has the laudatory goal of prohibiting genetic discrimination. Genetic discrimination has many victims, and their stories are wrenching. There are those who cannot get coverage, as well those who lost job opportunities. But I want to make sure we don't forget another category of victims--those who forego important tests out of fear that they will be victimized. According to a recent JAMA article, 57 percent of patients at risk for breast and ovarian cancer declined a needed genetic test that could have guided prevention and treatment interventions. That is why our goal should have been jot just to pass a bill, but to pass a credible bill so that people have enough confidence in our work to go our and get the health services they need. Unfortunately, I am concerned that the enforcement provisions of S. 1053, particularly in health insurance, are not strong enough to accomplish the legislation's goal. Our Nation has made significant investments in genetic research. This research could one day lead to cures or preventions for diseases such as cancer. This investment in genetic research will prove futile if the result is not better health care. Individuals must participate in genetic research if this Nation is to reap the rewards of our investment and individuals must have confidence in the results of genetic research in order to address their personal health issues. However, as genetic information is increasingly revealed, great harm can occur.”