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Washington, DC - March 08, 2007 - On March 8 the U.S. House Energy and Commerce Committee’s Subcommittee on Health held a hearing on HR 493, the Genetic Information Nondiscrimination Act of 2007 (GINA). While the Senate has unanimously passed versions of GINA in two previous sessions of Congress, and President Bush has indicated that he would sign the bill into law, it has stalled in House committees in the past. The views of most witnesses and subcommittee members at the hearing indicated clearly that this long delay has ended. Center Director Kathy Hudson was among those who testified.

Chairman Frank Pallone, Jr. (D-NJ) opened the hearing. “I can’t stress how important this bill is to every American citizen,” he said. Pallone explained some of the consequences of the current lack of comprehensive federal protection against discrimination based on genetic information, including some patients’ decisions to forego needed tests out of fear that the results could be used against them by employers or insurers. He cited a GPPC survey showing that 94 percent of Americans oppose employers having access to their employees’ genetic test results, and 80 percent believe health insurance companies should not have access to such information. Several other committee members also spoke in favor of GINA, after which witnesses began to testify.

First to speak was Francis Collins, director of the National Human Genome Research Institute. He described how the Human Genome Project and the International HapMap Consortium have laid the groundwork for improved public health and lower health care costs thanks to personalized medicine. “Yet there is a cloud on the horizon… that is that this kind of information is valuable and could be used against people.” Collins gave examples of people who had decided not to be tested for a cancer-causing gene mutations they might have inherited, or who were tested under a false name – in both cases, compromising their ability to receive preventative care. “Unless Americans are convinced that the information will not be used against them, the era of personalized medicine will never come to pass,” he concluded.

Christopher Kuczynski of the Equal Employment Opportunity Commission spoke next, discussing how HR 493, if passed into law, would interact with privacy and discrimination protections in the Americans with Disabilities Act and the Health Insurance Portability and Accountability Act (HIPAA). In a similar vein, Susan McAndrew of the Office for Civil Rights in the Department of Health and Human Services testified that the HIPAA privacy rule provides a “federal floor of privacy protections,” but that GINA would go further by 1) defining and specifically protecting genetic information; 2) prohibiting health insurers from using individuals’ genetic information for “core business practices” such as determining whether to insure someone, or what premiums to charge; and 3) preventing employers from obtaining genetic information. Asked by Chairman Pallone whether her office agreed with President Bush’s statement that GINA is needed, McAndrew responded affirmatively. Chairman Pallone thanked the panel, saying, “this really was a fascinating exercise to listen to all of you, and obviously made the case very well for why we need to move legislation.”

Genetic Alliance President Sharon Terry started off the second panel. She pointed out that “the bill is not about those who have signs or symptoms of disease, but rather about those who carry a genetic mutation which increases their chances of developing a disease.” She spoke about her experiences as founder of the Coalition for Genetic Fairness (a group advocating for GINA’s passage), including the stories she’s heard of people who fear or have been subject to genetic discrimination. “Aren’t health and disease enough to worry about? We cannot afford to also worry about discrimination based on these mutations – silent mutations with no signs or symptoms,” she said.

William Corwin of Harvard Pilgrim Health Care testified next on behalf of the America’s Health Insurance Plans association. “We agree with the sponsors of HR 493 that health care consumers should not face discrimination on the basis of their genetic makeup, and that genetic information should be protected from unauthorized disclosure,” he said, but went on to urge the committee to ensure that the bill will not impede insurance companies’ efforts to improve patient care through the use of genetic information.

Next to speak was Burton J. Fishman of Fortney & Scott, LLC, who detailed the concerns of the Genetic Information Nondiscrimination in Employment (GINE) Coalition, an employer group. While GINE believes employment decisions should not be based on “characteristics that have no bearing on performance,” the fact that no cases have been brought to court under state laws barring genetic discrimination shows that “this bill is a remedy in search of a problem,” he said. “We do not want a law that imposes real burdens and actual costs based on distant, contingent eventualities, or on the inadvertent and innocent conduct of any employer,” he added. Fishman criticized the bill for, he said, regulating “the flow of information” rather than its misuse, and for giving broadly-defined genetic information special protected status not afforded to other types of health information.

Karen Pollitz refuted the idea that genetic discrimination is hypothetical with data from a study she conducted as a research professor at the Georgetown University Health Policy Institute. First she gave background on how the market for individual health insurance works, then went on to describe her study, which asked insurance providers to evaluate the insurability and premiums for hypothetical applicants. Of the 23 companies surveyed, five indicated that they would take an adverse action (denying coverage, charging more for premiums, or excluding certain conditions from coverage) based on genetic test results. “A comprehensive federal law that addresses all three of the ways that insurers can discriminate based on genetic information is important,” she concluded.

Speaking for the interests of small businesses was Frank Swain of B&D Consulting, formerly of the United States Small Business Administration. Referring to Fishman’s comments, he said, “I must gently disagree with some of his points. I don’t think this bill is going to be significantly burdensome for business, and I do think that as the scope of available genetic information accelerates… that business in particular needs the certainty and the predictability of how to handle this information.” The lack of litigation stemming from state laws against misuse of genetic information demonstrates that that these laws are in fact not overly burdensome for businesses, he said, and furthermore, the primary benefit of anti-discrimination legislation would be to quell fear and apprehension about genetic privacy. As for giving genetic information special status, this is justified because it has implications not just for the health of the person tested, but also for subsequent generations, he said.

Executive Vice President and CEO Janet Trautwein of the National Association of Health Underwriters (NAHU) testified next. “NAHU believes that health insurance or employment discrimination based on genetic information of an otherwise healthy individual should be prohibited, provided that the definition of the prohibited information is carefully, clearly, and narrowly defined,” she said. She said that the fear others had cited of having one’s insurance cancelled based on genetic information was unjustified, since “the things that they’re afraid of are already illegal” under the HIPAA portability provision – at least for people covered by their employers’ plans. As for the individual market, it is important that insurers be able to use health information to make underwriting decisions in order to keep costs down, she said. She asked the committee to exclude certain types of information from the bill’s definition of protected genetic information.

Center Director Kathy Hudson was the final witness of the day, and shared results of the Center’s recent survey of attitudes about genetic privacy. While these results show that most Americans are enthusiastic about the use of genetic tests in health care and research, she said, “Growing uncertainty and fear threaten public confidence and the future of genetic information: More than 90 percent of Americans are concerned that the results from their genetic tests could be used in ways that would be harmful to them.” Specifically, 93 percent of survey respondents said that employers should not be able to use genetic test results to make hiring or promotion decisions, and the same number felt that health insurers should be prevented from using genetic test results to deny or limit insurance, or to charge higher prices.

GINA is critical to genetic researchers, Hudson said, because it would allow them to assure potential study participants that neither their genetic information, nor the fact of their participation in the study, could legally be used against them. She concluded, “More than three-quarters of the respondents in our survey believe there should be a law that prevents employers from using genetic tests to make decisions, and three-quarters also believe there should be a law to prevent insurers from using results from predictive genetic tests to deny or limit insurance or charge higher prices. The message is clear: The need for Congress to act grows with every new test developed and every patient who decides to forego or delay testing because of discrimination.”

Read Hudson’s written testimony

See details of the hearing (including video)

Read the “Impact of Genetic Discrimination” issue brief

Read HR 493, the Genetic Information Nondiscrimination Act of 2007 on (search for HR 493 and select "bill number")


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