Public Awareness of Genetic Nondiscrimination Laws in Four States and Perceived Importance of Life Insurance Protections
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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.
KeywordsGINA Genetic discrimination Genetic privacy Insurance Regulation
This work was supported in part by the Centers for Disease Control and Prevention, Office of Public Health Genomics, which assisted with the creation of survey questions and provided financial assistance necessary for the questions to be added to the state surveys. The findings and conclusions in this report are those of the authors and do not necessarily represent the views of the funding agencies.
Conflict of Interest
The authors declare no conflicts of interest.
Animal or Human Studies
No animal or human studies were carried out by the authors for this article. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all participants for being included in the study.
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