After a tortuous 13-year journey, the Genetic Non-Discrimination Act (GINA) has finally passed. The bill will prevent discrimination from employers or insurance companies based on an individual’s genetic makeup. Proponents, including genomics researchers and patient advocacy groups, say that the bill removes a major obstacle in the advance of personalized medicine.

According to the Associated Press (via the New York Times):

The bill, described by Sen. Edward Kennedy as ”the first major new civil rights bill of the new century,” would bar health insurance companies from using genetic information to set premiums or determine enrollment eligibility. Similarly, employers could not use genetic information in hiring, firing or promotion decisions.

”For the first time we act to prevent discrimination before it has taken firm hold and that’s why this legislation is unique and groundbreaking,” said Sen. Olympia Snowe, R-Maine, who sponsored the Senate bill with Sens. Kennedy, D-Mass., and Mike Enzi, R-Wyo.

There are more than 1,100 genetic tests available today, she said, but these are ”absolutely useless” if fear of discrimination discourages people from taking tests or participating in clinical trials.

Surveys have shown that genetic discrimination has been a major concern for the American public, especially when it comes to health insurance. In addition, scientists have reported that some people were afraid to participate in clinical trials that included genetic testing for this reason. (I faced this concern myself when writing a piece for Technology Review that involved taking a genetic test for diabetes risk.)

The bill was first introduced in 1995, before the completion of the human genome and when only a few genetic tests were available. It passed in the Senate twice, but was most recently held up by Senator Tom Coburn, who expressed concerns over lawsuits.

From the New York Times:

One of Senator Coburn’s main concerns was that the bill might subject employers to civil rights lawsuits stemming from disputes over medical coverage. And employers that also finance their own health insurance, he said, might be sued twice. “We would have created a trial lawyers’ bonanza,” he said.

Lawmakers made small changes to the bill that assuaged these concerns.

From GenomeWeb Daily News:

“We believe the final draft of GINA should provide clarity to the health insurance industry, maintain the integrity of the underwriting process, and ensure accurate premium assessments,” the senators stated in the letter.

Now, the lawmakers have agreed to a key compromise that would salve Coburn’s concerns by adding language to create a “firewall” between the parts of the bill dealing with insurers and employers, an adjustment Coburn and the White House said was needed to protect them from some lawsuits, a source on Capitol Hill told GWDN today.

The agreement included other “minor” changes having to do with phrasing, according to the source, who asked to remain anonymous.

The approval is also a likely boon to personal genomics companies, such as Navigenics and 23andMe, which provide direct-to-consumer genetic testing assessing individuals’ risk for disease.

More information:

Find H.R. 493 (GINA) on Thomas

U.S. Public Opinion on Uses of Genetic Information and Genetic Discrimination

Issue Brief: The Impact of Genetic Discrimination

Summary of a recent hearing on GINA by the House Energy and Commerce Committee’s Subcommittee on Health