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The Insurance Question

While federal US law prohibits employers and health insurance companies from weighing people's genetic testing results, other types of insurers such as life, disability, and long-term care insurance companies can. The New York Times asked a panel of experts whether those sorts of companies, too, should be prohibited from using genetic information in their decision-making process.

Joy Larsen Haidle, the president-elect of the National Society of Genetic Counselors, notes that for many loci, the effect of certain mutations isn't fully understood, so interpreting them for insurance policy purposes may be challenging, and it may be easy to confuse "a possibility and a true diagnosis."

However, Shawn Hausman, the senior vice president of the American Council of Life Insurers, says that insurers need access to health information to adequately gauge risk. "Without it there is the potential for anti-selection that could lead to higher insurance costs for everyone," she says. "An example would be insurers unknowingly assigning smokers an equal level of risk as non-smokers."

But Angus MacDonald, a professor of actuarial mathematics at Heriot-Watt University in Edinburgh, argues that the risk to insurers is low. For someone to a risk for insurers, they'd have to be healthy in early adulthood when they buy the insurance, but with a genetic mutation that would make them extremely likely to be severely ill by late middle age. Modeling, he says, shows that that just doesn't happen very often.

Additionally, Bartha Marie Knoppers and Yann Joly from the Center of Genomics and Policy at McGill University in Montreal write that there have been few documented cases of genetic discrimination in either the US or Europe. "The possibility of insurance discrimination should be more thoroughly investigated before we adopt broad laws that could further stigmatize people with genetic conditions," they say.

Still, Francis Collins, the director of the US National Institutes of Health, argues that there need to be "golden rules for genetic privacy." For instance, Collins writes that the decision to undergo a genetic test "should be made knowingly and freely" and that "[i]nsurers and others should not be able to demand such testing as a condition for services."