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Introduction of the Genetic Information Nondiscrimination Act

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Date:
Location: Washington, DC


INTRODUCTION OF THE GENETIC INFORMATION NONDISCRIMINATION ACT -- (House of Representatives - March 10, 2005)

The SPEAKER pro tempore. Under a previous order of the House, the gentlewoman from Illinois (Mrs. Biggert) is recognized for 5 minutes.

Mrs. BIGGERT. Mr. Speaker, I rise today to introduce the Genetic Information Nondiscrimination Act. Before I begin, I want to thank my cosponsor, the gentlewoman from New York (Ms. Slaughter). No one has worked harder on this issue and has fought more to bring it more to the forefront.

Back in 1993, this House passed H. Con. Res. 110, recognizing the sequencing of the human genome as one of the most significant accomplishments of the pass 100 years. It most certainly is. Thanks to this accomplishment, researchers now know more than ever how the human body works.

Thanks to genetic testing made possible by this discovery, individuals can, for the first time, know their risks for developing one of more than 1,000 genetic disorders.

Why would anyone want this bad news. Well, if you know you or someone in your family is going to get sick, you can plan accordingly. You can incorporate healthy habits to lessen the impact of the condition. For example, a woman who carries a gene known as BCRA, has a much higher risk of developing breast cancer than the rest of the population.

If these women knew ahead of time that they were at greater risk, they would be more likely to eat better, stop smoking, have annual mammograms and take other steps to lower the likelihood of cancer. It also gives individuals and families the chance to mentally and financially prepare themselves for whatever condition they may later develop.

The problem is that individuals are not taking advantage of this opportunity. And why not? Well, they are concerned that their genetic information will be used by health insurers to deny them coverage and by potential employers to deny them employment.

To put it bluntly, we will never unlock the true promise and benefits of sequencing the human genetic code if Americans are too paranoid to get tested.

Currently, Federal and State laws offer only a patchwork of protection against the misuse of genetic information. In addition, some States have enacted legislation on discrimination in health insurance and/or genetic discrimination in the workplace. Despite the presence of these State laws, only comprehensive Federal legislation can guarantee everyone in the United States protection from genetic discrimination.

That is why I, along with the gentlewoman from New York (Ms. Slaughter), the gentleman from Ohio (Mr. Ney), and the gentlewoman from California (Ms. Eshoo), have introduced this legislation. No one should be afraid to take advantage of the latest science to protect their health or that of their families. It is exactly the same bill that our colleagues in the Senate passed without objection, and it is strongly supported by the administration.

The bill provides commonsense protections for both consumers and companies. It contains protections against frivolous lawsuits with unlimited damages, but at the same time ensures that an individual's private, personal genetic information cannot be used against them. For example, employers cannot fire someone because they are more likely to develop a genetic disorder. Nor can they require employees to undergo genetic testing. At the same time, employers cannot be sued simply because of so-called ``water cooler gossip'' about an individual's condition that may or may not be true.

Under this bill, health insurance companies cannot deny coverage or charge a higher premium to a healthy individual based solely on genetic disposition to a disease or a disorder. Health insurance is expensive and hard enough to get for many Americans. Let us not make it more expensive based on factors beyond an individual's control.

As technology rapidly changes, so must Federal law. We must now act to protect our Federal investment in the human genome project. If individuals do not take advantage of the opportunities genetic research provides, we do not fully realize the return on our investment. This bill would allow them to do just that.

I am proud to introduce this legislation. I thank my colleagues who have worked so hard on it already: the gentlewoman from New York (Ms. Slaughter), the gentleman from Ohio (Mr. Ney), and the gentlewoman from California (Ms. Eshoo). I urge my colleagues to support this commonsense and much-needed legislation.

http://thomas.loc.gov

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