GINA will prevent the improper use of genetic information when workforce and insurance decisions are made. To put it another way, employers and insurance companies will be prohibited from using genetic information as a factor in determining hiring, firing, promotion, or medical coverage decisions. It will allow people to take and participate in genetic tests that could save their lives and the lives of others, without fear of their test results being used against them.
GINA is a bill that is near and dear to me, and its passage was literally 12 years in the making. I first introduced GINA in 1995. Back then, we had already seen cases of genetic information being used improperly. In the 1970s, for example, many African-Americans were denied jobs, educational opportunities, and insurance based on their carrier status for sickle cell anemia, despite the fact that a carrier lacked the two copies of a mutation necessary to get sick.
In the years after its introduction, more instances of abuse cropped up. In 1998, Lawrence Livermore Laboratories in Berkeley was found to have been performing tests for syphilis, pregnancy, and sickle cell on employees without their knowledge or consent for years. And in 2000, the Burlington Northern Santa Fe Railroad performed genetic tests on employees without their knowledge or consent.
Or consider the case of Heidi Williams, a woman diagnosed with alpha-1 antitrypsin deficiency. Heidi spoke at a press conference here on Capitol Hill in April of 2004. She explained that a large health insurance company had denied health insurance coverage for her two children because they were carriers of alpha-1 antitrypsin disease. After receiving inquiries from advocacy groups and the press, the insurance company reversed its decision, and provided six months of free coverage.
But for every outcome like this one, far too many others haven't been so positive. And the public knows it. In a 2006 Cogent Research poll, 66% of respondents said they had concerns about how their genetic information would be stored and who would have access to it. 72% agreed that the government should establish laws and regulations to protect the privacy of individuals' genetic information, and 85% said that without amending current law, employers would use this information to discriminate.
The consequences of these concerns have already made themselves felt. The threat of genetic discrimination – and the fear of being passed over for promotion, forced to pay more for health insurance, or even being denied coverage – is making men and women less likely to get genetic tests that could save their life by revealing the potential for a genetic disease.
But what is more, if individuals do not participate in clinical trials, then we will never be able to reap the real benefits of genetic technology. These trials need a large number of participants to be valuable for scientists. If too few people participate, then the gene pool being studied will be too narrow, and the results drawn from them will be skewed. Considering the overwhelming potential of this technology to prolong life and treat diseases, this is something we simply can't allow to happen.
It's also important to remember this: everyone has bad genes. None of us have a perfect genetic set, and all of us have between 40 and 50 bad genes that make us susceptible to some degree to genetic conditions. We could all one day be the victims of genetic discrimination - unless we put a stop to it now.
Fortunately, getting GINA through the House was the biggest obstacle to overcome. The bill has already passed the Senate on two previous occasions, and President Bush has said he would sign it. It passed the House last night with overwhelming support (420-3). I'm proud that so many of my Republican colleagues backed it. My guess is that many of them had supported it for years. It's amazing what happens when a few chairmanships switch hands.
I'll definitely keep you posted on GINA's progress. And as always, thanks so much to all of you for being so engaged and for being such a driving force behind our ongoing fight to give America a Congress, and a government, we can all be proud of again. I'll be in touch.
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