By Lisa Seachrist

Washington Editor

WASHINGTON -- President Clinton endorsed efforts by Rep. Louise Slaughter (D-N.Y.) to end discrimination based on genetic information and promised to send legislation to the Senate aimed at protecting genetic privacy.

During a ceremony Monday in the East Wing of the White House, Clinton called on Congress to move forward on Slaughter's bill, H.R. 306, and noted that Sens. Jim Jeffords (R-Vt.) and Bill Frist (D-Tenn.) have agreed to work with the administration to produce a Senate bill.

"Today, I am delighted that President Clinton is announcing his full support for legislation to end genetic discrimination in health insurance," Slaughter said. "The administration has suggested some constructive changes to my bill and I look forward to working with them and my colleagues in the House and Senate to produce the best possible bill to protect all Americans from genetic discrimination."

At the same ceremony, Secretary of Health and Human Services Donna Shalala presented a report titled "Health Insurance in the Age of Genetics," which detailed the promise of the Human Genome Project and noted that those achievements could be diminished by the fact that people are afraid to have genetic tests and participate in genetic research for fear of losing their health insurance.

"It is critically important that social policy keep pace with science," Slaughter said. "These marvelous new discoveries bring new responsibilities as well as opportunities. And discrimination already exists."

"It is wrong to force people to make a choice between taking a test that could save their lives and having the health insurance," Clinton said, noting that "we cannot afford to let our progress become lost for fear of discrimination."

Slaughter's legislation would prevent health insurers across the country from denying, canceling, refusing to renew or changing the terms, premiums or coverage based on genetic information. H.R. 306 also would require that an insurance company get written consent before releasing genetic information to a third party. Slaughter noted that it was vitally important for the a uniform federal law because state laws do not apply to a large number of health insurance policies.

New Law Would Close Loopholes

H.R. 306 in large part closes loopholes left in the Health Insurance Portability and Accountability Act (HIPAA), Slaughter said. In the 104th Congress former Republican Sen. Nancy Kassebaum, of Kansas, and Sen. Edward Kennedy (D-Mass.) sponsored legislation that ultimately became law to protect people who changed jobs from losing their health insurance based on pre-existing conditions. HIPAA includes genetic information as part of the continuum of medical information that is protected.

That legislation, however, covers only limited groups of people who are covered under group insurance plans. And, because a group plan can require that people exhaust their COBRA benefits before receiving coverage, anyone unable to pay their COBRA premiums could be excluded from obtaining coverage with the new insurance plan.

The Biotechnology Industry Organization and the Pharmaceutical and Manufacturers of America have voiced support for wider medical information protections -- similar to those found in the Kassebaum-Kennedy legislation -- noting that simple cholesterol tests in addition to family history could essentially provide genetic information.

Slaughter noted, however, that she uses the language "genetic information" rather than genetic tests specifically to prevent insurance companies from using family history as a means to deny health coverage.

Mary Jo Kahn, a breast cancer survivor and activist from Richmond, Va., detailed the history of breast cancer in her family, but noted that she and her sisters are unwilling to undergo genetic testing or participate in genetic research because of the potential for genetic discrimination.

"One of my greatest concerns is that the fear of health insurance discrimination will impede genetic research," Slaughter said. "If people are afraid that their genetic information will be used against them, they will not participate in or support the clinical trials we need to advance this vital research."

Slaughter said that while the Senate has no legislation in place, she "understands that whatever bill is introduced will likely be easily reconciled with H.R. 306." *