News Room
Speeches
May 1, 2008
Rule for the Genetic Information Nondiscrimination Act (H.R. 493)
I rise in support of this rule, which would allow the House to agree with the Senate compromise and pass H.R. 493, the “Genetic Information Nondiscrimination Act of 2007” or GINA.
This legislation has a long history. First introduced in 1995, it has been cosponsored by 224 of my colleagues in this Congress. The House overwhelmingly passed this legislation last April, and with the Senate’s recent approval and President Bush’s pledged support, I look forward to seeing this legislation signed into law.
Genetics are extremely important to determining the health of every individual. Each of us carries a handful of genetic anomalies – some of which might cause us to be affected by genetic conditions or affect the health of our children. There are currently 1200 genetic tests that can diagnose thousands of health conditions. This number has grown exponentially from around just 100 genetic tests a short decade ago.
Everyday, scientists are learning more about the genetic causes of many devastating diseases. Stopping these debilitating illnesses will require the voluntary participation of hundreds of thousands of Americans in the clinical research needed to identify, test and approve effective treatments. This information is invaluable to managing our country’s health and bringing down the overall cost of health care.
Currently, a few states provide protections for genetic information, but most provide none. This leaves Americans with little to no certainty about how their genetic rights are protected from state to state.
Additionally, genetic information is not properly covered under the current HIPPA regulations. It is necessary for Congress to provide legal protection for genetic information and clinical trials, so Americans can get tested for health concerns without fear of discrimination. This legislation ensures that we will all be protected.
Currently, the fear of misuse of genetic information is preventing people from getting these important genetic tests done. The refusal to utilize effective genetic tests hurts individuals, researchers, and doctors alike.
Lack of testing denies individuals important medical information that they could otherwise use to pro-actively manage their health. The information garnered by these tests also helps doctors to prescribe treatments and lifestyle changes with increased success. The same information can be used by researchers to effectively create targeted drugs and develop treatments.
Fear of discrimination has also caused a large number of people to opt out of clinical trials. With fewer participants in clinical trials, we will see slower development of treatments and beneficial drugs. In addition, clinical trials provide patients in late stages of disease with access to breakthrough treatments that would otherwise be unavailable.
This House has correctly recognized this issue by protecting those who obtain genetic tests IN ADDITION to those who volunteer to participate in clinical research for genetic diseases. I would like to commend my colleagues Sue Myrick, Kenny Hulshof and Dr. Tom Price for leading the efforts to protect the importance of clinical trials.
But none of this is just my opinion: the American public also overwhelmingly supports the Genetic Information Nondiscrimination Act. About 93% of Americans believe that if someone has a genetic test, their employer should not have the right to know the results. Republicans and Democrats alike want to see their genetic information protected.
