Final Policies on Genetic Non-Discrimination are Good News

Earlier this week the Equal Employment Opportunity Commission issued new regulations detailing how the 2008 Genetic Information Non-Discrimination Act (GINA) will be implemented. In a press release, the agency explains that the regulations:

• provide examples of genetic tests;
• more fully explain GINA's prohibition against requesting, requiring, or purchasing genetic information;
• provide model language employers can use when requesting medical information from employees to avoid acquiring genetic information; and
• describe how GINA applies to genetic information obtained via electronic media, including websites and social networking sites.

The Council for Responsible Genetics released a statement hailing the implementation policy for providing "strong protections against genetic discrimination and employer access to genetic information for every American worker."

GINA took effect in 2008 after sailing through Congress and being signed into law by President Bush. Senator Ted Kennedy called it the "first major new civil rights bill of the new century." As EEOC explains, GINA "prohibits the use of genetic information to make decisions about health insurance and employment, and restricts the acquisition and disclosure of genetic information." It does not cover life, disability, or long-term care insurance.

As many observers have noted, GINA is a hugely important step but takes us only part of the way we need to go. Just after its passage, Kathy Hudson of Genetics and Public Policy Center, M.K. Holohan, and Francis Collins (now director of NIH) wrote in the New England Journal of Medicine:

First and foremost, we need to ensure that genetic tests are safe, reliable, and marketed in a clear and truthful manner. There are important gaps in the oversight of genetic tests, and multiple advisory groups have called for regulatory reform to ensure the analytic and clinical validity of genetic tests. Clearly, our country's substantial investment and innovation in genetic science ought to be matched by innovation in regulation.

GINA's anti-discrimination protections cover genetic tests whether they're part of medical care or ordered from one of the direct-to-consumer gene test companies that have cropped up in recent years. But as I wrote in a 2008 commentary titled "Red Flags over Consumer Genetics," it doesn't tackle any of the other problems that DTC gene tests raise. So while GINA means that you can worry much less if your doctor recommends a gene test, it's far from a green light for signing up online to send in your spit.