President Bush signs genetic testing bill into law

President Bush on Wednesday approved landmark legislation that prohibits employers and health insurance companies from discriminating against people on the basis of their genetic test results.

For more than 13 years, despite broad bipartisan support, this key bill, first introduced in 1995, has been strapped to a political seesaw: The Senate passed versions of the Genetic Information Nondiscrimination Act in 2003 and 2005, but they stalled in the House. Last year, the House passed the measure by a vote of 420 to 3 but it was held up in the Senate.

In the meantime, genomic science has been racing ahead, and today there are more than 1,000 genetic tests for a variety of health conditions—from some forms of breast and colon cancer to macular degeneration and Huntington’s disease. Until now, that very personal DNA information has been protected only by a patchwork of untested federal regulations and state laws, many with troublesome loopholes.

“After a very long wait, Americans can now be confident that their genetic information cannot be used by health insurers or employers in harmful or hurtful ways,” according to Kathy Hudson, director of the Genetics and Public Policy Center, established at the Johns Hopkins University by the Pew Charitable Trusts.

Earlier this year, the center surveyed more than 4,000 Americans and found that 92 percent were worried that genetic test results could be used against a person. Now, Hudson said in a statement, people will no longer have to make the tradeoff between protecting their privacy and getting appropriate health care.

The measure prevents insurers from denying health coverage to people or raising their premiums based only on their genetic links to a disease. It also prevents employers from hiring, firing or making promotion decisions based on DNA information.

“Your DNA, which you don’t choose and can’t change, shouldn’t be used against you any more than your gender or your skin color,” says Francis Collins, M.D., director of the National Human Genome Research Institute in Bethesda, Md. Collins led the monumental Human Genome Project—completed in 2003—which mapped and sequenced the DNA blueprint in all humans and opened the floodgates to genetic research. From the beginning, he and other leading geneticists and ethicists have insisted on the importance of strict privacy protections for DNA test results.

While some businesses were leery that the bill would lead to lawsuits, health insurers, as well as medical and scientific groups, supported the measure.

“Individuals must not face discrimination on the basis of their genetic makeup,” says Karen Ignagni, president and CEO of America’s Health Insurance Plans, an association whose members insure more than 200 million Americans. “We applaud the Senate for passing this important legislation.”

Kudos also came from more unconventional quarters—entrepreneurs who are marketing these sensitive tests directly to consumers via the Internet.

“This is fantastic,” said Julian Awad, cofounder of Smart Genetics, after the Senate vote. For $399 his company will test a person’s DNA for the genes associated with Alzheimer’s disease, using a saliva sample the consumer mails to the company.

"We think [the legislation] will remove the potential concern over the widespread danger of discrimination,” Awad said.

Genetic insights have the ability to revolutionize medicine because they allow science to target diseases at the most basic molecular level. Knowing which genes cause a disease also allows doctors to test a patient’s genetic makeup, identify who’s at risk for the condition and start early interventions that could curb or even prevent the disease altogether.

“Our challenge now,” says Hudson of Johns Hopkins, “is to make sure that doctors and patients are aware of these new protections so that fear of discrimination never again stands in the way of a decision to take a genetic test that could save a life.”