WASHINGTON – The Senate voted Thursday to protect people who are reluctant to have genetic testing (search) for breast cancer or heart disease because of fears the results might cost them their jobs or health insurance (search).
Senators voted 98-0 for legislation prohibiting employers from using genetic information in hiring and firing decisions and barring insurers from using such information to deny coverage or raise premiums.
Since the breakthrough of the mapping of the human genome (search) some four years ago, "the American people have been vulnerable to this type of discrimination and ... the risk of discrimination has inhibited the full use of this vast, still-untapped reservoir of knowledge," said Sen. Olympia Snowe, principal sponsor of the legislation.
The White House supports the measure, saying in a statement that the potential misuse of genetic information "raises serious moral and legal issues."
The bill faces an uncertain future in the House, where business groups that oppose it hold more sway.
In 2003 the Senate, on a 95-0 vote, passed a nearly identical bill, also sponsored by Snowe, and more than half the House members agreed to support a companion bill introduced by Rep. Louise Slaughter, D-N.Y. But the Republican leadership in the House never brought the legislation to a vote before the full vote.
Rep. John Boehner, chairman of the House Education and the Workforce Committee, said Wednesday he was "not sure that a federal mandate would help" protect genetic privacy (search). Boehner, R-Ohio, said many states and employers have acted to prevent genetic discrimination.
But Snowe, R-Maine, cited National Institutes of Health reports that almost one-third of women offered genetic testing for breast cancer risk decline out of concerns about health insurance discrimination.
People susceptible to diabetes, cystic fibrosis or Huntington's disease could gain access to early treatment if they no longer feared that the results of genetic tests could be used to deny employment or health coverage, Snowe said.
"People fear cancer, but many also fear losing their jobs or their health insurance even more," said Sen. Edward Kennedy, D-Mass.
But a business coalition led by the U.S. Chamber of Commerce argued that there is no appreciable evidence of workplace discrimination based on genetic information. Basing legislation on potential bad behavior was "fraught with opportunities for unintended consequences, unnecessary regulation and unwarranted litigation," the group said.
The bill would, for the first time, allow the departments of Labor and Health and Human Services to take direct enforcement actions against insurance plans that violate the bill's protections. It would completely ban collection of genetic information prior to enrollment in a health plan.
Karen Ignagni, president of America's Health Insurance Plans, said her group was not opposed to the Senate bill and agreed that people should undergo genetic testing with peace of mind.
But she said there were concerns about past House versions that she said opened up new opportunities for litigation and could have the unintended consequence of preventing the sharing of genetic information to improve treatment.
The chief executive of the American Medical Association, Michael D. Maves, expressed support for the Senate bill in a letter to Senate leaders.
Maves said it would "encourage patients to take advantage of genetic screening, counseling, testing and new therapies" without concerns the information could be used against them.
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