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Genetic Nondiscrimination Discussed by Subcommittee

The House Education and the Workforce Subcommittee on Employer-Employee Relations on September 6 held its second hearing on genetic nondiscrimination to discuss the role of employer-sponsored health plans in genetic nondiscrimination.

Subcommittee Chair Sam Johnson (R-TX) noted that members of the subcommittee are opposed to genetic discrimination but noted that the issue was “very complicated.” Stating that “several existing federal laws protect the privacy and use of genetic information, and guard against discrimination based on genetic factors,” Rep. Johnson added, “In addition, more than half of the states have enacted laws that further restrict the privacy and use of genetic information by employers and the health insurance industry.”

Ranking Member Robert Andrews (D-NJ) agreed that the issue was complicated, saying that the principles of privacy and nondiscrimination “don’t easily translate into statutes,” but he urged the subcommittee to move forward. “I don’t think anyone should be denied a job because of a genetic disposition….Actual behavior should govern employment decisions.”

Several witnesses expressed their concern about legislating genetic nondiscrimination. Janet Trautwein of the National Association of Health Underwriters cautioned that an overly broad definition of genetic tests could “impede the normal underwriting process and increase the cost of the coverage.” She used cholesterol screening as an example. Currently, a cholesterol screening test is coded by physicians and insurers as a diagnostic test and is used frequently to determine whether an individual has high cholesterol. Ms. Trautwein stated that an overly broad definition of genetic tests may lead insurers and physicians to consider cholesterol screening as a genetic test rather than a diagnostic test, which could result in higher premiums for individuals.

Additionally, Mary Williams of the law firm Alston & Bird told the subcommittee that it was “not necessary to enact additional protections because current federal laws already protect against discrimination,” noting that the Health Insurance Portability and Accountability Act of 1996 (P.L. 104-191) prohibits employer-sponsored group health plans or health insurers offering group health coverage from denying or canceling coverage based on genetic information. She also agreed that an overly broad definition could have the unintended consequence of “negatively impacting the day-to-day operation of group health coverage.”

Jane Licata of Rutgers University School of Law testified in support of genetic nondiscrimination legislation, saying that the potential for the misuse of genetic information is so great “that we should establish a national policy.” She stated that H.R. 602, sponsored by Rep. Louise Slaughter (D-NY), is an “important and timely legislative initiative,” and that the bill “addresses some of the most urgent needs.”

Rep. Johnson stated that another hearing would be held to discuss legislative initiatives that have been introduced. Additionally, the Senate Health, Education, Labor, and Pensions Committee will hold a hearing on September 13 to discuss the issue.

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