Supporters hail new genetics bill

By Cynthia Lee

A bill making its way to President Bush for his signature as of press time is set to guarantee what many are calling the new civil right of the 21st century: the right to get genetic testing without fear that the results — or one's family history — will be used to deny anyone insurance coverage, a job or a promotion.

A ban on genetic discrimination has been cycling through Congress in various forms since 1995. But despite strong support, legislation has always been sidetracked from passage until this session. This time, the bill, titled the Genetic Information Nondiscrimination Act, nicknamed GINA, passed unanimously in the Senate, 95 to 0, and in the House by a 414-1 vote.

"This is the new civil right," said Edward R.B. McCabe, physician-in-chief at UCLA's Mattel Children's Hospital and an internationally recognized authority on genetics who has been pushing for the bill since 1999. That's when then-Health and Human Services (HHS) Secretary Donna Shalala appointed him to chair the Secretary's Advisory Committee on Genetics Testing.

"If we do not fix it so that people are willing to have genetic testing and have the results become part of their medical record, then the fruit of the Genome Project will be lost because of genetic discrimination," said McCabe, who is co-director of the UCLA Center for Society and Genetics and president-elect of the American Society of Human Genetics.

In California, which has already banned genetic discrimination, the new federal law will reassure people who come in for testing that they will be protected, even if they move to another state, said Wayne Grody, a professor in the departments of Pathology and Laboratory Medicine, Pediatrics and Human Genetics.

"I can tell you that I have had patients — who would have been good candidates for testing and would have benefited from it — walk out of the clinic because they were so afraid of possible discrimination," said Grody, a national adviser on issues related to genetic testing.

"Without this law, I couldn't assure patients completely that this would never happen," said the physician.

"There are many people who are submitting samples under pseudonyms," said McCabe, who is also the Mattel Endowed Executive Chair of the Department of Pediatrics. "In fact, some physicians are advising their patients to use pseudonyms so that this information isn't going into their medical record."

Initially, opponents to the bill, including the U.S. Chamber of Commerce representing small business, maintained that genetic discrimination didn't exist.

As head of the HHS committee, McCabe gathered 300 pages of testimony from individuals who related how genetic information was used against them. All of this, along with a DVD of moving, emotionally charged statements from the public, was made available to Congress.

"It was probably one of the most powerful things we did," McCabe said.