GINA is now the law of the land

Finally! The Genetic Information Nondiscrimination Act has been signed into law. More info here, there, and everywhere. Oh, and here too.

GINA passes Senate vote unanimously

The news from Reuters via WaPo is here.

Genetic nondiscrimination bill finally coming up for Senate vote

The Genetic Information Nondiscrimination Act (GINA) is finally coming up for a Senate vote, according to Michael Stebbins of Scientists & Engineers for America. Senator Tom Coburn (R-OK) has had a hold on the bill since last year but has released it. Here's the NYT's report, and here's a version from GenomeWeb.

GINA would protect Americans from discrimination in employment and insurance based on genetic test results. As Linda blogged earlier, the act was passed by the House in March (264 - 148) as part of the Paul Wellstone Mental Health and Addiction Equity Act of 2007. You can learn more about the act and its halting progress through the hallowed halls of Washington here.

According to Stebbins, Coburn has now placed a hold on the Breast Cancer and Environmental Research Act.

Genetic discrimination: in the eye of the beholder?

Yesterday's NYT ran a front-page article by Amy Harmon about genetic discrimination. Some people who could potentially benefit from genetic testing are deciding not to be tested (or to be tested "off the books" using direct-to-consumer vendors) to avoid the possibility of discrimination in insurance or employment.

A spokesman for America's Health Insurance Plans, formerly the American Association of Health Plans, is quoted as saying that insurers have "no interest" in discriminating against health plan members on the basis of genetic information. Well, that's swell, then--no need to worry, right?

Wrong. Insurers absolutely are interested in individuals' genetic predisposition to disease: that's why if you try to buy individual coverage you will be asked for a very complete family history, in addition to lots of other super-specific information. The industry's position is that their actuaries need this data in order to come up with accurate risk calculations ... but certainly not to discriminate. They might raise your premiums to a point you can't afford, or refuse to cover treatment for your pre-existing condition, or deny you coverage altogether. They'd be making business decisions, and those decisions would be based on clinically relevant data, not some unethical, irrational value judgment. But they would never, ever discriminate.

If you're not already behind the Genetic Information Non-Discrimination Act, get on board!