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Genetic Discrimination Subject of Subcommittee Hearing

On July 11, the House Energy and Commerce Subcommittee on Commerce, Trade, and Consumer Protection held a hearing to discuss the potential for discrimination in health insurance based on genetic testing.

Opening the hearing, Subcommittee Chair Cliff Stearns (R-FL) stated, “The most important task is to be thoughtful and deliberative in looking at new issues, including the potential for discrimination in health care based on genetic testing.” He added, “There are current prohibitions on discrimination based on genetic information and privacy rules already exist under Federal law. It is our job to understand these regulations and to consider how insurance companies produce a competitive product.”

Under the 1996 Health Insurance Portability and Accountability Act (HIPAA) (P.L. 104-191), employer-sponsored group health plans or health insurers offering group health coverage cannot deny or cancel coverage to employees or their family members based on genetic information or the results of a genetic test. Additionally, insurers cannot refuse to renew coverage or charge higher premiums based on such information, and insurers cannot impose pre-existing condition waiting periods based on such information.

HIPAA also prohibits insurers offering coverage in the private market from denying coverage to individuals previously covered by employer-sponsored plans. Those insurers also are prohibited from canceling coverage or imposing preexisting condition waiting periods based on genetic information or the results of a genetic test.

Reps. Louise Slaughter (D-NY) and Connie Morella (R-MD) testified before the subcommittee in support of legislation (H.R. 602) that would prevent discrimination in health insurance coverage and employment practices based on genetic information.

Noting the advances in genetic research, Rep. Slaughter stated, “People can now take advantage of genetic tests that will help gauge their risk for breast cancer, colon cancer, and Huntington’s Disease. In all, over 800 genetic tests are now available.”

She added, “All of this great promise can only come to pass, however, if genetic research can proceed forward unimpeded. Today, the greatest threat to genetic research comes from the potential for genetic discrimination-the use of, misuse, or abuse of genetic information.”

Rep. Morella agreed, saying, “I believe, as do many others, that the misuse of genetic information has the potential to impede medical research.”

Both Members also agreed that congressional efforts to ban genetic discrimination should ban such discrimination in both health insurance and employment; contain strong provisions prohibiting the collection and disclosure of predictive genetic information without informed consent; protect all forms of predictive genetic information, including family history; and contain meaningful enforcement and remedies. Rep. Stearns questioned Reps. Slaughter and Morella about the effectiveness of HIPAA, saying, “On the health side, the law is in place and what we need to understand is whether the law is working.”

Rep. Morella responded that the law only guarantees coverage for individuals who have been covered previously for 18 months. Individuals who had no insurance previously or had insurance in the private market would not be covered under HIPAA and would not be protected from genetic discrimination.

Mary Davidson of Genetic Alliance, Inc. told the subcommittee that “people who could benefit from the new technologies are afraid to use them. They are afraid to have genetic tests or participate in research because they fear losing their insurance and their jobs if their insurance companies and their employers learn of those tests.” She encouraged Congress to enact federal legislation “that makes it illegal for insurance companies to deny coverage and for employers to refuse to hire, promote or fire people based on genetic test results.”

Dr. Donald A. Young of the Health Insurance Association of America disagreed: “We are convinced that there is a great deal of misinformation about this matter.” He added, “In particular, we believe that calls for federal legislation to address this issue fail to appreciate the extensive array of federal and state laws already in place, and the potential negative consequences of additional federal requirements.”

Dr. Young added that federal legislation to prohibit genetic discrimination was “unnecessary given current federal and state laws…and current insurer practices.” He also stated that the proposed legislation was “overly broad” and “could restrict the ability of insurers to set appropriate premiums.”

Dr. J. Craig Venter of the Biotechnology Industry Organization countered, “If the public believes that this system of individualized research and health care will lead to denial of health insurance or other benefits, they will not take advantage of what the new system could offer.”

Karen H. Rothenberg, J.D., M.P.A., of the University of Maryland added, “The fear of genetic discrimination in the health insurance context is a reality.” Saying that there were limitations to HIPAA, Ms. Rothenberg said, “It does not prohibit insurers from requiring or requesting genetic testing or requiring or requesting the results of genetic testing….Nor does it prevent a plan from excluding all coverage for a particular condition, or imposing lifetime caps on all benefits or on specific benefits.” In particular, “this form of discrimination against women with breast cancer and/or a genetic predisposition to breast cancer, for example, would be permitted as long as plan characteristics are not ‘directed at individual sick employees or dependents,'” she said.

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