Senate OKs bill banning use of gene data to discriminate

WASHINGTON – The Senate voted Thursday to protect people who are reluctant to have genetic testing for breast cancer or heart disease because of fears the results might cost them their jobs or health insurance.

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 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.

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. 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 before enrollment in a health plan.

Slaughter is optimistic that the House will pass the bill this time, said Eric Burns, Slaughter’s communications director.

“I think it’s going to be hard for the Republican leadership to just stonewall [the bill], particularly when the only objections seem to be coming from special-interest groups,” he said.

Democratic Reps. Tom Allen and Michael Michaud of Maine co-sponsored Slaughter’s bill in 2003 and plan to co-sponsor it again, barring any major changes to the language of the bill, their press secretaries said.

Liz Goldberg of Boston University Washington News Service contributed to this report.