The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage

Abstract

Purpose:More than a decade after the Genetic Information Nondiscrimination Act (GINA) was passed, there is a paucity of research on the general public’s awareness of GINA. This study’s objective was to assess knowledge of GINA and concerns of genetic discrimination.Methods:A quota-based sample of U.S. adults (N=421) was recruited via Qualtrics Research Services to complete an online survey.Results:Overall, participants had a mean age of 43.1 (SD=13.9), 51.8% identified as female, 63.1% identified as non-Hispanic White, and 38.4% had ≥4-year college degree. Respondents reported relatively low subjective knowledge of GINA (M=3.10, SD=1.98; 7-point Likert scale). Among respondents reporting high subjective knowledge of GINA (16.2%), 92.6% incorrectly reported or did not know that GINA does not cover life, long-term care, and disability insurance, and this number was 82.4% for auto or property insurance. Respondents were relatively likely to decline genetic testing due to concerns about results being used to determine eligibility for employment (M=4.68, SD=1.89) or health insurance (M=4.94, SD=1.73). There were few consistent demographic associations with either subjective or objective knowledge of GINA.Conclusion:This study highlights continued public concern of genetic discrimination and a lack of awareness and understanding of GINA and its scope of protections.