President Clinton today urged Congress to pass a new federal law forbidding discrimination based on a person's genes. Speaking at a press briefing at the White House, Clinton said he is joining forces with a bipartisan group in Congress to write legislation that would make it illegal for any health insurance company to deny coverage to a healthy person simply because medical data indicate that the person is at risk for an inherited disease.
"It is wrong for an insurance company to use genetic information to deny coverage," Clinton said, adding that "we cannot allow our progress in science to be undermined" by concerns over the misuse of genetic data. Clinton said people are so worried that negative genetic test results will cause them to lose insurance coverage that many are afraid to participate in genetic research.
Although Clinton did not release the text of his proposed legislation, he said it would not only make it illegal for companies to deny coverage, but also to raise premiums on the basis of genetic data. A background statement adds that it would also protect privacy by "preventing health plans from releasing or demanding access to genetic information" without a subject's consent. Some researchers are concerned that draconian privacy rules could interfere with the flow of research data. But the Administration promises to provide "safe harbors" for "beneficial uses" of genetic data, "including for important biomedical research efforts."
In a minor coup for the Administration, two Senate Republican leaders--James Jeffords (R-VT), chair of the Labor and Human Resources Committee, and William Frist (R-TN), chair of the Subcommittee on Public Health and Safety--have said they support the ideas outlined by the president. A Frist staffer predicts that hearings on these issues will begin in the Senate this fall.