A Brave New World: Genetic Screening for Life Insurance?

Today’s consumers have access to more and more information about their own health than ever before. Genetic testing can tell a person if they’re at risk for breast cancer, for example, or if they are likely to have a child with a developmental disorder. The more we understand about the human genetic code, the more secrets we’re able to unlock when it comes to disease, disability and health problems.

GINA Won’t Save You

Still, there is a darker side. All of this tech has led to the need to pass new laws. For example, there is a federal law now that prevents health insurance companies as well as employers from discriminating against an individual based on their genetic predisposition to disease. This law signals the advent of a new era, in which privacy concerns and genetic advances find themselves at odds with one another.

The act is called the “Genetic Information Nondiscrimination Act,” or GINA for short. What’s especially disconcerting about GINA isn’t so much what it says, but what it doesn’t say. GINA deals with medical insurance, and with employers. It doesn’t deal with many other areas.

Long Term Care, Disability and Life Insurance Don’t Count

Take, for example, the issue of long term care. There is no federal law that says insurance companies can’t use genetic information in determining premiums or even acceptance for long term care insurance. The same holds true for disability insurance and for life insurance.

The areas of long term care insurance, disability insurance and life insurance are left to the states to decide, at least in how they relate to genetic screening. There are currently 10 states that regulate the use of genetic information in the area of long term care insurance, for example. Other state either are considering or have already considered privacy measures for genetic screening, as well.

The missing provisions from the GINA act may cause some serious problems. For example, term life insurance carriers could actually deny coverage for an individual based on what a genetic test found. They could do it without the customer even having any knowledge that they looked at the results of the genetic test.

What Can You Do?

One way consumers can keep the information private is using testing companies that don’t assign individually identifiable information to their test results. The problem comes when the consumer shares information from those with their doctor. At that point, those results become a permanent part of the patient’s medical record, and can be accessed by long-term care insurers and others.

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