[Congressional Record (Bound Edition), Volume 151 (2005), Part 3]
[House]
[Page 4240]
[From the U.S. Government Publishing Office, www.gpo.gov]




     INTRODUCTION OF THE GENETIC INFORMATION NONDISCRIMINATION ACT

  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.

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