On April 25, the House approved, 420-3, the Genetic Information Nondiscrimination Act (GINA) (H.R. 493). The measure would prohibit employers from using individuals’ genetic information when making hiring, firing, job placement, or promotion decisions. It also would make it illegal for group health plans and health insurers to deny coverage to healthy individuals or charge them higher premiums based solely on their genetic predisposition to a specific disease. The bill also prohibits discrimination based on the genetic information of a family member, the “genetic information of any fetus carried by [a] pregnant woman,” and the genetic information of any “family member utilizing an assisted reproductive technology, include genetic information of any embryo legally held by the individual or family member.” The House Ways and Means and Energy and Commerce Committees approved the measure on March 21 and 22, respectively (see The Source, 3/23/07); the Senate Health, Education, Labor and Pensions Committee approved a similar bill (S. 358) on January 31 (see The Source, 2/2/07).
“It is with great pride that I rise today,” said the bill’s sponsor, Rep. Louise M. Slaughter (D-NY). She continued, “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.” Rep. Slaughter noted that there are thousands of genetic disorders, and that millions of Americans may carry genetic markers for disease. “But sadly,” she said, “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.”
Rep. Judy Biggert (R-IL) recognized the sequencing of the human genome as “one of the most significant scientific accomplishments of the past 100 years,” but said that “after investing more than $3.7 billion in taxpayer money to achieve this breakthrough, Congress walked away and left the job unfinished. We left people without any assurance that their genetic information would not be used against them. So, understandably, they avoided this great technology, never realizing the untold health benefits and savings. This concern even spilled over into NIH, where a fear of genetic discrimination is currently the most commonly cited reason for not participating in research on potentially lifesaving genetic testing for breast cancer and colon cancer. Fully one-third of those eligible to participate declined to do so for this reason, undermining the development of new treatments and cures. Today Congress is here to settle some unfinished business and provide Americans the protections against genetic discrimination in health care insurance and employment that they need to utilize genetic testing without fear.”
“I commend my colleagues, the congresswomen who have been acknowledged, [Rep.] Slaughter, [Rep. Anna] Eshoo [(D-CA)], [Rep.] Biggert and others who persisted over the years to bring this legislation to the floor, and acknowledge that the [Congressional] Caucus for Women’s [Issues] of the 110th Congress has made the passage of this its highest priority,” said Rep. Lois Capps (D-CA). She continued, “Being able to identify risks for certain conditions holds such great promise for our ability to identify and practice greater preventive health care in this country. The importance of preventive care to our well-being and our optimum health can never be overemphasized.”
Rep. Chris Shays (R-CT) said, “The objective of this bill is simple: preventing both health insurance companies and employers from using genetic information to discriminate against individuals. In the past decade, science has made remarkable advances on the human genome. Genetic tests are already available to measure an individual’s likelihood of developing specific diseases…Our laws need to keep pace with medical advancement. If Americans are afraid of retribution from their health insurance company or from their employer if they get genetic testing done, none of the medical advances that are possible will be achieved. We simply must move forward in this critical area of science, which is why I urge passage of this legislation.”
