Public Awareness of Genetic Nondiscrimination Laws in Four States and Perceived Importance of Life Insurance Protections

TLDR

Genetic testing has expanded rapidly, prompting the passage of state and federal nondiscrimination laws such as GINA that protect individuals from discrimination by health insurers and employers based on genetic information. In 2010, Connecticut, Michigan, Ohio, and Oregon incorporated four BRFSS survey items to gauge public interest in genetic testing, awareness of nondiscrimination laws, concerns about life‑insurance use of genetic data, and perceived importance of life‑insurance protections. The survey revealed that fewer than 20 % of adults were aware of these laws, yet over 80 % deemed them important, and more than two‑thirds expressed concern about life‑insurance discrimination, underscoring a need for greater public education and dialogue.

Abstract

Genetic testing has grown dramatically in the past decade and is becoming an integral part of health care. Genetic nondiscrimination laws have been passed in many states, and the Genetic Information Nondiscrimination Act (GINA) was passed at the federal level in 2008. These laws generally protect individuals from discrimination by health insurers or employers based on genetic information, including test results. In 2010, Connecticut, Michigan, Ohio, and Oregon added four questions to their Behavioral Risk Factor Surveillance System (BRFSS) survey to assess interest in genetic testing, awareness of genetic nondiscrimination laws, concern about genetic discrimination in determining life insurance eligibility and cost, and perceived importance of genetic nondiscrimination laws that address life insurance. Survey results showed that awareness of genetic nondiscrimination laws was low (less than 20 % of the adult population), while perceived importance of these types of laws was high (over 80 % of respondents rated them as very or somewhat important). Over two-thirds of respondents indicated they were very or somewhat concerned about life insurance companies using genetic test results to determine life insurance coverage and costs. Results indicate a need for more public education to raise awareness of protections provided through current genetic nondiscrimination laws. The high rate of concern about life insurance discrimination indicates an additional need for continued dialogue regarding the extent of legal protections in genetic nondiscrimination laws.