Washington, DC—Senate Majority Leader Harry Reid made the following statement today after the U.S. Senate passed the Genetic Information Nondiscrimination Act, which ensures patients can receive the best possible medical treatments without having to fear that genetic information will be used against them by their insurers or by their employers:
“Passage of the Genetic Information Nondiscrimination Act (GINA) is the culmination of many years of work. This effort began over a dozen years ago and would not be possible without the work of many members on both sides of the aisle.
“There are too many individuals and groups to mention by name, but I do want to single out one individual in particular. Dr. Francis Collins, Director of the National Human Genome Research Institute, has been an important voice in this debate. Dr. Collins’ groundbreaking work in advancing the science of genomics has led us to powerful new insights into the links between genes and common diseases such as diabetes, cancer, multiple sclerosis and Crohn’s disease. He has dedicated himself to securing federal protection against genetic discrimination so that the American people do not have to fear discrimination because they have had genetic tests, or participated in genetic research.
“Every one of us stands to benefit from this landmark legislation. Genetic research is advancing at a remarkable pace. The sequencing of the human genetic code has already allowed doctors to develop better ways to diagnose, prevent or treat some of the most dreaded diseases known to man. In 2007 alone, researchers discovered more than seventy gene variants associate with common diseases such as diabetes, cardiovascular disease and cancer. Each of these discoveries suggests new options for both the treatment and prevention of these diseases. However, these exciting advances are being threatened by fears of genetic discrimination.
“This fear that has been communicated to me in hundreds of meetings, letters and phone calls from constituents. For example, a woman from Las Vegas who is affected by pulmonary hypertension, a continuous high blood pressure in the arteries that supply the lungs, wrote the following:
‘Life expectancy for PH patients who do not receive treatment averages 2.5 years, but with early, appropriate treatment, some patients are now able to manage their PH for 20 years or more….GINA will allow patients with a family history of PH to pursue genetic testing and receive life-saving treatment without fear of related discrimination.’
And a man from Las Vegas, who suffers from Polycystic Kidney Disease (PKD), a life threatening genetic disease affecting the kidneys, wrote:
‘Fear of genetic discrimination keeps many PKD families from testing for the presence of the disease or seeking treatments that could prolong their kidney function. In addition, fear of genetic discrimination has adversely affected many clinical drug trials now underway in the PKD research field. These clinical trials desperately need volunteers to participate, but many with PKD are fearful their participation in such trials will be used against them by their insurers and/or employers.’
“For genetic research to fulfill its true potential, patients need strong protections against genetic discrimination. GINA will establish strong protections against discrimination based on genetic information in health insurance and employment. As a result, patients can receive the best possible medical treatments without having to fear that genetic information will be used against them by their insurers or by their employers. The bill will also allow researchers to pursue the promise of genetic research by ensuring the confidentiality of genetic information by participants in clinical trials. GINA will enable all Americans to take full advantage of potentially life-saving genetic testing, and will pave the way for full realization of the promise of personalized medicine.
“The House will soon take up and pass this legislation and I urge President Bush to sign this bill into law.”