Bernadine Healy, health editor for U.S. News & World Report, says it’s time for Congress to consider GINA, the Genetic Information Nondiscrimination Act that presently “languishes in lawmaker limbo.” Sen. Tom Coburn, R-Oklahoma, has placed it on hold and supporters fear it could fall into the election-year abyss if not considered soon.

Your genomic information is powerful but, like all powerful tools, it bears risks. Genetics is fundamentally the science of differences and can be used to categorize people, stigmatize them, or subject them to social or economic discrimination.

… With mapping of the human genome complete, a slew of disease-related genetic tests arriving on the scene every day, and the thousand-dollar personal genome just around the corner, privacy concerns are no longer abstract. Francis Collins, director of the National Human Genome Research Institute, will tell you the worry out there is real.

… Getting a handle on such imperfection is an insurance actuary’s dream, and gene information is already being used in deciding whether to sell someone life insurance, particularly when the benefits are large. Some argue that even for health insurance, those with better genes should not be forced to pay the same high premium as those who appear to be more susceptible to disease. As for the workplace, there are examples of employers performing genetic tests on employees without their knowledge or consent but no clear examples of gene discrimination-so far.

But let’s not wait until we have a hearing room filled with victims before taking action. As Collins warns, “The strategy to offer individual personalized medicine has a big cloud over its horizon. If we want a brighter healthcare future, we need to blow that cloud away.” He’s right. It’s time to get GINA out of the holding pen, one way or the other.

This entry was posted on Monday, November 19th, 2007 at 5:30 am and is filed under discrimination, genetics, insurance, law, politics, stigma. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.