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Genetic Discrimination Subject of Senate Hearing

With the announcement last year that scientists had successfully mapped the human genome, the issue of genetic discrimination is being more widely discussed in Congress. On February 13, the Senate Health, Education, Labor, and Pensions Committee held a hearing to discuss the limits of existing laws in protecting against genetic discrimination in employment and health care. Senator Hillary Rodham Clinton (D-NY) presided over the hearing.

Cari Dominguez, chair of the Equal Employment Opportunity Commission (EEOC), expressed support for enacting legislation to prohibit genetic discrimination; however, she noted that such a bill should be consistent with existing nondiscrimination statutes. “It would be manifestly unfair to provide lesser or greater relief to an otherwise healthy individual based on a genetic marker that may or may not develop into a disease or disorder than an individual who actually has the disease or disorder,” she stated.

Ms. Dominguez also explained that the EEOC has a mediation program that has been quite successful in resolving discrimination claims without involving the courts. “Because it provides incentives and opportunities for settlement, the administrative process is much less costly and burdensome, both to those involved and to the judicial system,” she stated.

Responding to concerns that the EEOC would be unable to handle the influx of genetic discrimination cases, Ms. Dominguez said, “Our capacity continues to grow,” adding that the EEOC has reduced its backlog of cases to the lowest number in 20 years.

Bobby Jindal of the Department of Health and Human Services noted that the fear of discrimination based on genetic information is real. “In a similar study involving genetic testing for increased risk of breast and ovarian cancer, fully one-third of the individuals who chose not to participate did so because of their concern about genetic information,” he said.

Mr. Jindal stated that the Health Insurance Portability and Accountability Act of 1996 (HIPAA) prohibits discrimination in enrollment in group plans based on genetic information. HIPAA also prohibits group health plans from increasing rates based on genetic information. However, he noted that further measures are needed to fill the gaps in current law. “First, the administration believes that insurers in the individual market as well as the group market should not be permitted to deny enrollment based solely on a healthy individual’s genetic predisposition to a future disease,” he said, adding that they should also be prohibited from adjusting health premiums based on such information.

Joanne Hustead of the Health Privacy Project at Georgetown University agreed that HIPAA left gaps in the protection of genetic information. “The HIPAA privacy regulation does not generally prohibit the entities subject to the privacy regulation from collecting genetic information from individuals or from requiring people to provide genetic information or undergo genetic tests,” she said. Ms. Hustead also stated that HIPAA “permits health plans and insurers to use protected health information, including genetic information, for a broad range of health care purposes, including medical underwriting.”

Debra Ness of the National Partnership for Women and Families pointed to the importance of genetic nondiscrimination legislation for women. “From the earliest prenatal testing, to more recent and sophisticated breast and ovarian cancer screening, women have had and will continue to have a great deal at stake in the genetics revolution,” she said, adding: “Women know first-hand the difficult balance between the benefits of genetic testing and the potential economic and emotional harm that knowledge of a potential birth defect or predisposition to illness can bring.”

Andrew Imparato of the American Association of People with Disabilities discussed the limits of the Americans with Disabilities Act (ADA) in protecting against genetic discrimination. “The ADA as drafted does provide some protections against genetic discrimination in employment, but the law has been interpreted by the Supreme Court and lower federal courts in a manner which weakens its protections,” he said. Additionally, he said, “Whereas the ADA can be and has been used to stop genetic discrimination in some instances, the protections it affords offer little security to people with genetic markers and health conditions that have not yet developed into full-blown debilitating conditions.”

The witnesses discussed two legislative proposals before the Senate: S. 318, sponsored by Sen. Tom Daschle (D-SD), and S. 382, sponsored by Sen. Olympia Snowe (R-ME). Most witnesses expressed support for S. 318, pointing to its comprehensive provisions.

However, Ronald Adler of Laurden Associates, a human resources consulting firm, stated that S. 318 “deviates from and is contrary to our nation’s other employment discrimination laws,” adding that the bill would create unfair and inconsistent treatment of individuals who are discriminated against by establishing greater remedies for individuals discriminated against based on genetic information.

Sen. Mike Enzi (R-WY) called S. 382 a “solid start,” noting that the President had called upon Congress to pass legislation.

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