Genetic Information Nondiscrimination Act Of 2007
Mr. Speaker, I thank the gentleman for yielding, and I thank my partner, Mrs. Biggert, also for the hard work she has done. It has taken us collectively 12 years to get to this point, and I want to say at the outset we are not talking…
Mr. Speaker, I thank the gentleman for yielding, and I thank my partner, Mrs. Biggert, also for the hard work she has done. It has taken us collectively 12 years to get to this point, and I want to say at the outset we are not talking about some population of people who might have bad genes. We are talking about us, because every one of us has bad genes, between 30 and 40. So this protection goes not just to some employee somewhere, but all of us and the people we love.
It is with great pride that I rise today. As a matter of fact, I could not stop smiling all day. With the passage of this bill, we are going to stand up for the future health of our citizens and one of medicine's most promising fields, genetic research.
It is almost heartbreaking to me to think that we are 10 years behind in genetic research and the people we could have helped up to now, but it is the culmination of a bipartisan effort to prevent the improper use of genetic information in the workforce and insurance decisions.
It is no longer simply the work of science fiction writers.
There have been many instances of genetic discrimination, from a woman who was fired after a genetic test revealed her risk for lung disorder, to a social worker who, despite outstanding performance reviews, was dismissed because some member of her family had Huntington's disease.
Consider the case of Heidi Williams, an individual diagnosed with alpha-1 antitrypsin deficiency. In 2004, she testified that a large health insurance company had denied coverage for her two children because they were carriers for the disease.
GINA will make these discriminatory practices illegal by prohibiting health insurers from denying coverage or charging higher premiums to a healthy individual because of a genetic predisposition, which means you may never get the disease, might happen.
GINA also bars employers from using genetic information for hiring, firing, job placement or promotion decisions.
In the 12 years since I first introduced this legislation, the need for it has grown rapidly. Scientific research has advanced so quickly that we cannot possibly afford to wait any longer.
It offers immense potential for early treatment and prevention of numerous diseases.
Since the sequencing of the human genome was completed in 2003, researchers have identified genetic markers for a wide variety of health conditions, and new progress is being made every day.
Fifteen percent of all cancers are found to have an inherited susceptibility. Ten percent of adult chronic diseases, heart disease and diabetes, America's top killers, have a genetic component.
Already, over 15,500 recognized genetic disorders affect 13 million Americans, and each and every one of us, as I said before, and it is so important for you to know this, each and every one of us is in that category of carrying between 5 and 50 bad genes, or predicted genes. They may not be so bad.
That is exactly why this bill is so important to all of us, not just those with recognized disorders. There is not a single person on the planet that has perfect genes. Every one of us, and let me make that clear again, are all vulnerable to genetic discrimination.
To give you an idea of the potential that exists from this research, consider that a genetic test can tell a woman with a family history of breast cancer if she has the genetic mutation that can cause it, long before the cancer might develop.
For these exciting scientific advances to continue, for the potential of this technology to be realized, we have to make genetic testing something commonplace rather than something that is feared and kept secret.
But sadly, the threat of genetic discrimination and the fear of being passed over for promotion, forced to pay more for health insurance, or even denied coverage, men and women are much less likely to be tested and to take advantage of that potentially lifesaving information.
Most importantly, if individuals do not participate in the clinical trials, we will never be able to reap the great benefits of this genetic technology.
In a 2006 Cogent Research poll, 66 percent of respondents said they were concerned about how their genetic information would be stored and who would have access to it.
I want to thank everybody, first Dr. Collins who sequenced the human genome and testified before Congress at least 12 times, and I cannot imagine anybody would be not be moved by his testimony. He is here with us today.
I want to thank all the committee members, certainly Mrs. Biggert who has worked so hard, and her staff; and the three committees who have jurisdiction here who have done so much for us. Mr. Miller, the first thing I think in January he told me this bill was coming to the floor.
I want to thank Congresswoman Eshoo for her untiring effort to help bring this, and certainly the member of my staff who has worked so hard.
It is a great day. You may not realize it but it also just turns out to be DNA Day. What a wonderful way to celebrate it.
Seventy-two percent agreed that the government should establish laws and regulations to protect the privacy of individuals' genetic information. And 85 percent said that without amending current law, employers would use this information to discriminate.
Before I close, I want to reiterate the broad support that this bill enjoys. We have over 220 Democrat and Republican cosponsors behind this bill.
In past Congresses, the Senate has passed this bill twice with unanimous support. And I would like to thank the President who today issued a statement of administration policy in support of the bill.
I want to take a moment to thank the lead Republican cosponsor of this bill, Congresswoman Judy Biggert for her dedication to this bill, along with Congresswoman Anna Eshoo for being a strong advocate for this bill over the years.
I also want to thank Dr. Francis Collins for his support. His testimonies over the years should have swayed even the firmest unbelievers that genetics has the potential to change our health care system as we know it.
Lastly, I want to thank the advocates from the health and science community. Over 200 organizations including Hadassah support this bill.
GINA will do more than stamp out a new form of discrimination--it will help our country be a leader in a field of scientific research that
holds as much promise as any other in history.
And it will allow us to realize the tremendous potential of genetic research without jeopardizing one of the most fundamental privacies that can be imagined.
Mr. Speaker, today is a momentous day.
And, I urge all my colleagues to support this bill.