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Nickles: bill would forbid health insurers from using genetic information to set premium costs. Credit: AP/ J. P. CARTER

Republican members of the US Senate are trying to fill the gaps in a 1996 law prohibiting genetic discrimination in health insurance coverage. A bill introduced last week would prohibit health insurers from using genetic information to deny individual insurance policies to people who have not been previously or recently insured.

This group was not protected under the Health Insurance Portability and Accountability Act of 1996, authored by Senator Edward Kennedy (Democrat, Massachusetts) and former Senator Nancy Kassebaum (Republican, Kansas). Importantly, the new bill, the Patients' Bill of Rights Act, also prohibits health insurers — whether for groups or individuals — from using genetic information to set premium costs. It bars insurers from requiring applicants or those already enrolled to take genetic tests or to divulge test results.

The bill, whose supporters are led by Don Nickles (Republican, Oklahoma), gives a broad definition of genetic information that includes not only an individual's genetic tests but also tests taken by that person's family members, as well as family histories of diseases that put the individual at a significantly increased risk of a disease.

The broad definition was applauded by the National Human Genome Research Institute. “We are delighted that family history has been included here,” says Kathy Hudson, the institute's assistant director for policy coordination.

But the breadth and reach of the bill's language on genetic discrimination has not gone down well with the Health Insurance Association of America, which says that its members do not currently use genetic information to deny coverage.

Dean Rosen, the association's senior vice-president of policy, says the bill would set a “really terrible” precedent as it would give the federal government authority over the setting of health insurers' rates, an area historically controlled by the states. He also argues that it would damage the market for individual insurance coverage, which is taken out by about 10 million Americans.

By guaranteeing individual policies to people who have long held back from buying health insurance but then receive genetic test results revealing them to be at increased risk of disease, “it forces people who have⃛ held on to their insurance for years to subsidize the higher health costs of someone who has waited,” says Rosen.

The effect of such behaviour in raising premium costs is not of the same concern to insurers in the group market because of its much larger size.

The genetic discrimination provisions are included in a broad bill that aims to protect the rights of patients in an era of managed healthcare. But the bill's other provisions apply only to the 48 million Americans in federally regulated health plans. In contrast, the genetic discrimination language encompasses an additional 100 million Americans in state-regulated plans, as well as individuals not currently insured.

Neither a competing Democratic bill, authored by Senator Tom Daschle (South Dakota) and Congressman John Dingell (Michigan), nor a bill from House Republican leaders, addresses genetic discrimination. It is not clear which of the three bills will prevail.