Congressman Bentsen Proposing Genetic Privacy Legislation

Congressman Ken Bentsen (D-Texas) is calling for legislation to protect individuals' medical privacy, specifically with respect to the sharing of genetic information by financial institutions.

The efforts of the Human Genome Project could usher in a new era of medicine. Having a genetic map in hand, researchers and clinicians could begin to view diseases at the genetic level, with the possibility of identifying and then targeting an individual's specific genes with treatments in the future.

"If we can forecast, from an individual's genes, that he or she is likely to get cancer or heart disease, how could that information be used?" Congressman Bentsen said. "Unless we provide legislative protections, employers could decide to save millions of dollars by not hiring individuals likely to get sick. Insurance companies could choose to save money by bumping up rates, simply dropping, or refusing to cover individuals who possess potentially imperfect genes."

Breast cancer survivor Janice Poplack joined Congressman Bentsen and health care professionals from The University of Texas M. D. Anderson Cancer Center and Baylor College of Medicine to discuss protective legislation at a press conference on July 10. Poplack, diagnosed with breast cancer in 1991, underwent genetic testing and discovered that she had a gene which predisposes her to ovarian cancer. She decided to undergo a surgery to remove her ovaries. Her insurance company denied coverage of the procedure initially. She was able to have her surgery after the Texas Legislature passed a law preventing health insurance companies from discriminating based on genetic information.

Congressman Bentsen has proposed two amendments to the Medical Financial Privacy Act, H.R. 4585. The first amendment would prohibit financial institutions from sharing an individual's genetic information with outside groups or with other departments internally without prior written consent from the individual. The second amendment would require financial institutions to inform an individual if their medical information is being shared with other groups for the purpose of marketing financial products to them.

Congressman Bentsen is also co-sponsoring legislation, H.R. 2457, the Genetic Nondiscrimination in Health Insurance and Employment Act of 1999, that would prevent insurance companies and employers from discriminating against individuals and their family members based on genetic information.

A recent Time/CNN poll found that 75 percent of 1,218 surveyed Americans did not want insurance companies to know their genetic code.

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©2006 Texas Medical Center

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