This week JAMA published a viewpoint on whether life insurers should have access to genetic test results and, understandably, it unearthed some long-standing fears about genetic discrimination. We do have protection from some forms of such discrimination under the Genetic Information Nondiscrimination Act (GINA), enacted in 2008. GINA provides protection against the use of genetic information in decisions for health insurance and employment and the Affordable Care Act provides additional protections in the health care realm; however, neither provide protection against life insurance discrimination.
The easy and popular answer would be to say, “Let’s expand protections to include life insurance discrimination”. But, unfortunately, the answer is not that simple. The life insurance industry is built on the fundamental underlying principle that a large pool of participants will share risk, and that the deck won’t be stacked so that everyone in that pool is at high risk of premature death. If only those at high risk are buying life insurance, the business model will collapse. Life insurance premiums are calculated to consider many risk factors, including tobacco history and body mass index, and personal and family history of disease. Should premiums and policy decisions also use genetic information? That decision is complex and will require further debate. Are insurance companies sophisticated enough to understand the intricacies of risk assessment, variable penetrance, and interventions that reduce risk — or will applicants with a ‘poor genetic profile’ simply be denied?

And, should this debate influence whether or not you pursue genetic testing? Keep in mind the following:

  • We all carry genetic mutations for disease — most of us just don’t know which (meaning we aren’t likely reducing our risks through potential interventions). The risks aren’t equal between people or conditions, but we are all at risk for something.
  • If you already have a disease or condition (e.g. cancer, muscular dystrophy, cardiac disease), that disease is documented in your medical record and will already be considered if you are to purchase a life insurance policy.
  • Genetic testing for many diseases can result in strategies and interventions to reduce your risk of future illness, optimize your treatment and/or shed light on the surveillance and risk reduction that would be most appropriate for you. For many diseases this information has the potential to be life-saving for you and your family members.

This conversation should, however, make us pause and consider the risk:benefit ratio of testing infants and children for adult-onset diseases, for which there is no intervention before age 18. We want to be sure that such decisions made on behalf of children, without their informed consent, do not cause more harm than good for them down the road.