With the widespread availability of genetic testing, especially in direct-to-consumer forms, there is a growing concern about the privacy of that information and whether it can be used by insurers to underwrite policies for certain lines of insurance. Federal law provides a base amount of protection through the Genetic Information Nondiscrimination Act (GINA), which prohibits discrimination based on genetic information in both the health insurance and employment context. However, GINA does not apply to life, disability or long-term care insurance. With such limited federal protections, individual states are left to provide greater protections if they wish to.
Roughly half the states have enacted laws providing some guidance on the general use of genetic information in underwriting. In July 2020, Florida enacted House Bill 1189 and became the first state to completely bar insurers from canceling, limiting, denying or differing premium rates based on genetic information for life insurance, long-term care and disability insurance. Despite speculation that other states would quickly follow suit, they have been slow to institute the same level of restrictions on the use of genetic information.
Earlier this year, the Louisiana Department of Insurance proposed a bill, H.B. 455, tracking the language of Florida’s new law. The bill would prevent life and long-term care insurers from denying, canceling or refusing to renew coverage, imposing a different premium, or discriminating against an individual or family member based on any information revealed by genetic testing. During the legislative process, however, the bill was ultimately replaced with a less restrictive law which only prohibits life and long-term care insurers from requiring an individual to take a genetic test or from taking into consideration the fact that an individual or their family member participated in genetic research. The law even carves out an exception allowing insurers to consider genetic information contained in an applicant’s medical record if the information is “relevant to a potential medical condition that impacts mortality or morbidity.” LA R.S 22:918.
South Dakota also passed similar legislation, effective January 2022, which prohibits life and long-term care insurers from requiring or requesting an individual or blood relative to take a genetic test or from taking into consideration the fact that a genetic test was refused by an individual or blood relative. S.D. Stat. § 58-1-25.
For the time being, Florida remains an outlier with respect to genetic information and underwriting restrictions, while other states continue to pass laws that are only moderately restrictive. Nevertheless, even though two of the initial legislative forays into this area after Florida enacted H.B. 1189 have resulted in less restrictive language than Florida’s, we expect that this will continue to be an area of focus for insurance legislators. Genetic testing is becoming more widespread, both in the context of medical care and in the context of direct-to-consumer services. Legislative and regulatory attempts to restrict the use of this information by insurers in underwriting is a trend that will likely continue for the foreseeable future.