2 - Consuming Genetics As a Life Insurance Consumer

Summary

Individuals are not the only actors becoming consumers of genetic testing. Other third-party intermediaries are increasingly becoming consumers by offering testing to their own consumers. This article focuses on a relatively new actors in this space–life insurers. Life insurers are becoming genetic consumers through both underwriting and through policyholder wellness programs. These uses in many ways mirror employers’ forays into the genetics sphere, through hiring and employee wellness programs. On the one hand, increase of such testing can provide access to preventive genetic information and encourage a healthier society. On the other, it increases risks of coercion, privacy violations, and discrimination. This chapter assesses the legal landscape surrounding insurer-initiated genetic testing. The laws regulating insurer use in underwriting are relatively clear-cut, albeit generally permissive and variable across states; however, there is much less clarity regarding how life insurer wellness programs could or should be regulated. This chapter puts forth several regulatory proposals to protect individuals from privacy and discrimination concerns. Without such protections, there is the very real potential for the data benefits to accrue to the testing and insurance companies while the underlying harms befall the individual–a weighty warning for those consuming genetics as an insurance consumer.