On October 14, the Senate approved, 95-0, a bill (S. 1053) that would prohibit employers and health insurance companies from discriminating against applicants based on genetic information. The Senate began its debate on S. 1053 on October 1 (see The Source, 10/3/03).
Sponsored by Sen. Olympia Snowe (R-ME), the Genetic Information Nondiscrimination Act would prohibit insurance companies and employers from using the results of genetic tests to deny coverage, raise insurance premiums, or to make hiring decisions. With existing genetic tests able to predict an individual’s risk for heart disease, Alzheimer’s, and some cancers, patients’ advocates have worried that fears of losing a job or health coverage have precluded people from accessing the potentially life-saving genetic profiles.
Sen. Snowe told the story of a constituent who was a breast cancer survivor and also had nine family members with breast cancer. She lamented that this constituent refused to have the BRCA test to determine a genetic predisposition for breast cancer because the woman “worried it would ruin her daughter’s ability to obtain health insurance in the future.”
Sen. Hillary Rodham Clinton (D-NY) supported H.R. 1053, but felt that the enforcement provisions were “not strong enough to accomplish the legislation’s goal.” She cited an article in the Journal of the American Medical Association (JAMA) that said 57 percent of patients at risk for breast and ovarian cancer declined a needed genetic test that could have guided prevention and treatment interventions. “That is why our goal should have been not just to pass a bill, but to pass a credible bill so that people have enough confidence in our work to go out and get the health services they need,” she argued.
S. 1053 also would bar insurance companies and employers from requesting genetic tests and would apply the same procedures and remedies as other forms of discrimination, such as race under the 1964 Civil Rights Act, and disabilities under the Americans with Disabilities Act of 1990. Workers could sue employers who violated the rules.
Rep. Louise Slaughter (D-NY) has introduced comparable legislation (H.R. 1910) in the House. The House Education and the Workforce Subcommittee on Employer-Employee Relations has announced its plan to hold hearings on genetic nondiscrimination, but no date for the hearings has been set.
