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GINA Not Enough?

Many people who might benefit from testing for genetic conditions are shying away from getting tested because they are worried about losing or not being able to afford insurance, New York Times reporter Kira Peikoff writes.

She relates the example of Brian S. a surgical resident in Pennsylvania who thinks he may have the fatal neurological disease Cadasil, but will not take a genetic test to find out. Brian's mother already has the disease, and he has a 50 percent risk. He is not skipping testing because he is a Luddite, or because he is petrified by a diagnosis, but because he wants to apply for life and long-term care insurance.

The problem is that the Genetic Information Nondiscrimination Act of 2008, which bars health insurers and employers from acquiring or using the results of genetic testing, does not apply to life, disability, and long-term care insurance. These three types of insurance are particularly important to people who have inherited diseases, Peikoff says.

She says there is no way to know how many people are like Brian S, and will go untested because of their insurance fears, but some experts in the field think it’s a growing problem.
"It’s suddenly now become real because people increasingly have access to what’s in their genomes," UNC-Chapel Hill Professor James Evans says.

Insurers may have good reasons to want to know the results of some tests. Harvard Medical School's Robert Green has found that people who have recently learned that they carry a genetic marker that predisposes them for Alzheimer's disease were five times more likely to buy long-term care insurance than those in a control group.

"The fear is potent in our society that insurance companies are asking,” Green says. "The No. 1, 2 and 3 issue that subjects are concerned about is, will they be discriminated against if this is in their medical record."

There has been some movement at the state level to address these insurance loopholes in GINA, as California, Oregon, and Vermont have enacted regulations prohibiting the use of genetic information for these three types of insurance.