Genetic Information Nondiscrimination — Should Consumer Protections Apply to Long-Term Care and Disability Insurance?

While following the most recent Tour de France cycling competition, I was intrigued by the spectrum of “products”advertised on broadcasts of the race stages —  or, alternatively, on the increasingly popular medium of podcasts by commentators such as Lance Armstrong on The Move.   On one end was the amusing use of bicycling footage from the new movie Mama Mia 2, spliced to make it appear actual TdF racers were just ahead of the maniacal cast. On the other end were advertisements for genetic testing via companies once better known for tracking family trees.   If your TdF hero (or anti-hero?) Lance Armstrong was advocating the benefits of better genetic knowledge via Helix, would those consumers consider the potential ripple effects of such knowledge?

Kaiser Health News recently pointed to key issues:   

The federal Genetic Information Nondiscrimination Act [of 2008] prohibits health insurers from asking for or using your genetic information to make decisions about whether to sell you health insurance or how much to charge. But those rules don’t apply to long-term-care, life or disability insurance.

When you apply for long-term-care insurance, the insurer may review your medical records and ask you questions about your health history and that of your family. It’s all part of the underwriting process to determine whether to offer you a policy and how much to charge.

If the insurer asks you whether you’ve undergone genetic testing, you generally have to disclose it, even if the testing was performed through a direct-to-consumer site like 23andMe, said Catherine Theroux, a spokeswoman for LIMRA, an insurance industry trade group.

In the current  political climate, it seems unlikely that Congress would tackle a wider application of mandatory nondiscrimination policies connected to risk factors for additional insurance policies.  Thus, if you are asked the questions, you have to tell the truth or be subject to disqualification from benefits if the company later learns, for example, you were aware you had genes associated with increased risk of dementia, but failed to disclose that fact in the application process, a factor relevant to underwriting.  Timing can matter, as also suggested in the Kaiser Health News Report:  

Some states provide extra consumer protections related to genetic testing and long-term-care insurance, said Sonia Mateu Suter, a law professor at George Washington University who specializes in genetics and the law. But most follow federal law.  If you get genetic testing after you have a policy, the results can’t affect your coverage.

For more, read How Genetic Tests Muddy Your Odds of Getting a Long-Term-Care Policy.