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WASHINGTONInformation regarding an individual's family health history must be considered protected genetic information if legislation designed to prohibit discrimination can work, according to the director of the federal government's National Human Genome Research Institute.
Dr. Francis Collins, who heads the institute at the National Institutes of Health in Bethesda, Md., offered that warning during a hearing on the Genetic Information Nondiscrimination Act before the House Ways and Means Committee's Health Subcommittee last week. The bipartisan bill would create national standards to protect individuals against genetic discrimination in health insurance and employment. Earlier versions of the bill won Senate approval but never passed the House despite the White House's support for the measures.
But the newest bill may be on a fast track in both chambers. The subcommittee's chairman--Rep. Fortney Stark, D-Calif.--said that he would like his panel to approve the bill by the end of the month.
Dr. Collins said that some people refuse to undergo genetic testing that could help tailor medical treatments for certain illness, including cancer, because they fear the information may be misused. "This is about all of us," he said. "There are no perfect genetic specimens."
He called genetic discrimination a civil rights issue. "You don't get to pick your DNA," he said.
Rep. Sam Johnson, R-Texas, asked Dr. Collins about the inclusion of family history in the category of protected information under the bill. "Essentially, this bill would be toothless" without extending its protections to family history, he said. Employers and insurers could use family history in assessing a person for coverage or employment and say that they did not base their ultimate decision on genetic information, he said.
Dr. Collins later pointed out that while there is "no bright line," determining how broad the net of protected family history should be cast, he noted that the current bill extends "four degrees" from the individual in question to include first cousins once removed.
Rep. Stark, who supports the bill, said that some observers think that the measure is unnecessary because genetic testing is not currently widespread. But "it's only a matter of time, a short period of time" before testing becomes common, Dr. Collins replied.
"Why would we want to wait to fix this?" he said.
No witnesses spoke against the bill.
"We do not oppose the bill and agree with its intent," said Dr. William Corwin, medical director-clinical policy for Harvard Pilgrim Health Care in Wellesley, Mass. He spoke on behalf of Washington-based America's Health Insurance Plans.
But Dr. Corwin urged subcommittee members to clarify some of the bill's language to ensure that it would not block gathering of information that would help determine the best course of treatment for patients.