Anti-genetic discrimination law debated

WASHINGTON, Feb. 13 (UPI) -- The Bush administration supports efforts to prevent discrimination based on genetic information, but new laws might be unnecessary, witnesses told a Senate hearing Wednesday.

The Senate Health, Education, Labor and Pensions Committee called the hearing to examine the limits current laws face in preventing decisions based on a person's genetic makeup. President Bush publicly has stated the need to prevent such discrimination.

As scientists continue expanding their understanding of the human genome, more data is available on how certain genes might play a role in diseases, such as breast cancer. Such clues are only that, however -- markers that only show disposition toward a disease, not an absolute yes or no on contracting the condition.

Previous hearings have shown Americans becoming more concerned about the possibility such information might cost them health insurance or even a job, said Sen. Hillary Clinton, D-N.Y., who chaired the hearing.

"We're on the threshold of continuing scientific breakthroughs based on the discoveries of the human genome," Clinton said. "We didn't bring these (discrimination) questions on ourselves, they've been thrust on us because of scientific advances."

Sen. Judd Gregg, R-N.H., said examples of genetic discrimination have been difficult to find, but having any at all is a mistake. Science's rapid pace of change also would make it a mistake to draft inflexible laws against such actions, he said.

Bobby Jindal, assistant secretary for planning and evaluation at the Department of Health and Human Services, told the committee the White House understands the urgency of the situation.

"At the National Institutes of Health, study volunteers are hesitant to participate in critical biomedical research because they're concerned their genetic information will not be kept confidential," Jindal said. "The primary concern cited by 39 percent (of volunteers) was losing insurance."

The hearing discussed two bills currently being considered in this area:

-- S. 382, the Genetic Information Nondiscrimination in Health Insurance Act of 2001, sponsored by Sens. James Jeffords, I-Vt., Olympia Snow, R-Maine, Bill Frist, R-Tenn., and Mike Enzi, R-Wyo. Among its provisions, the bill would prevent insurers in group or individual markets from adjusting premiums based on predictive genetic information, as well as stop insurers from forcing policyholders to provide that data.

-- S. 318, is the Genetic Non-Discrimination in Health Insurance and Employment Act, whose chief sponsor is Sen. Tom Daschle, D-S.D. This bill's provisions are similar to S. 382, but it uses the phrase "protected genetic information."

Jindal said the legislation is a good starting point, but specific privacy protections for genetic information could be counterproductive. The Health Insurance Portability and Accountability Act, passed in 1996, covers all personally identifiable health information, he said, so another set of regulations could easily cause unintentional violations among doctors and insurance companies. Deciding the sensitivity of genetic information is a personal decision, Jindal said, and a legislative solution could limit people's ability to share necessary data.

Gregg asked what sort of definition for genetic information would best serve an anti-discriminatory law. Jindal said "predictive" is preferable, since insurers need data on a person's current health status to make appropriate decisions.

Cari Dominguez, chairman of the Equal Employment Opportunity Commission, told the committee the proposed legislation could swamp the U.S. legal system with a new family of discrimination claims. The EEOC already has procedures in place for dealing with cases under the Americans with Disabilities Act, so the commission could deal with alleged genetic discrimination in the workplace as well.

Clinton asked why the commission should become involved, especially in cases that could require quick decisions for potentially health-threatening situations. Dominguez said all available administrative remedies for the issue should be exhausted before considering opening the judicial system to more claims. The EEOC would also put health-related cases on a fast track, she said.