But such discrimination and lawsuits are likely to happen soon, according to Wendy McGoodwin, the executive director of the Council for Responsible Genetics in Cambridge, Mass., a nonprofit bioethics group. Congress is considering a number of bills that would limit discrimination against people with faulty genes, an idea backed by President Clinton. The proposals vary. Some would prevent medical, life, or disability insurers from dropping individuals with positive results or raising their premiums. Others would forbid employers from discriminating in hiring and promoting workers.
Insurance companies say they have a right to see their clients' test results.
Life insurers argue, for instance, that people who test positive for mutations linked to life-threatening diseases might load up on insurance because they expect to die at a relatively young age, raising rates for others in the pool. Similarly, the Health Insurance Association of America is worried that previously uninsured people who learn they have a genetic predisposition to a disease will purchase insurance, incur high medical costs, and drive up premiums. The group is also lobbying against the bills on grounds that companies that insure individuals or small groups need to know genetic information so they can exclude high-risk people or charge them more for coverage. McGuire says she'll get tested the moment such a bill is signed. Now she has an added sense of urgency.