EVEN BEFORE the first mapping of the human genome five years ago, scientists had detected certain genes that raise a person's chances of having some forms of cancer. Now Congress is finally moving to eliminate a major barrier to people with family histories of cancer or other diseases getting tested: The Senate voted 95-0 Thursday to prohibit businesses or insurance companies from denying people jobs or health coverage on the basis of genetic testing.
The House of Representatives is expected to approve the bill as soon as next week. President Bush should quickly sign it.
Not only will the bill make individuals more willing to be tested for their own knowledge, but it will allay concerns that have deterred many people from participating in medical studies that include genetic testing. According to the Genetics and Public Policy Center at Johns Hopkins University, more than 90 percent of people surveyed by the center listed the risk that their genetic information could be used against them as a major concern about participating in such research.
Under the bill, health insurers could not demand higher premiums based on genetic test results, nor could they request or require that an individual take such a test. Employers would be allowed to do genetic testing only to monitor the adverse effects of hazardous workplace exposures.
Despite the enthusiastic support of Senator Edward Kennedy and others, the bill has taken 13 years to navigate Congress. Employers still have concerns about it, with one US Chamber of Commerce official referring to it as "more paperwork, more expense, and more litigation." That remains to be seen. It is definitely more protection for individuals who might benefit from knowing their genetic makeup but have until now refused to be tested for fear their own DNA could be used against them.
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