January 17, 2006

By Sheryl Gay Stolberg

WASHINGTON, D.C. - President Bush on Wednesday urged Congress to pass long-stalled legislation to safeguard genetic privacy, a measure experts say would encourage millions of Americans to undergo testing that could lead to prevention and treatment of cancer and other diseases.

“If a person is willing to share his or her genetic information, it is important that that information not be exploited in improper ways,” Mr. Bush said at the National Institutes of Health. “And Congress can pass good legislation to prevent that from happening.” He added, “We want medical research to go forward without an individual fearing personal discrimination.”

For years, scientists and patients' advocates have pushed for legislation barring employers and insurance companies from discriminating based on the results of genetic tests. A so-called genetic discrimination bill passed the Senate unanimously in 2003, but died in the House.

The bill was reintroduced in the House this week. With Congress now under Democratic control, the bill's backers are optimistic. They include Dr. Francis S. Collins, director of the National Human Genome Research Institute at the health institutes, who participated in a roundtable discussion with Mr. Bush on Wednesday.

Dr. Collins said Mr. Bush's statement, along with the possibility of Congressional action, “gives us renewed hope that all Americans will finally receive the protections they need to benefit from gene-based medicine.”