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. 2021 Dec;23(12):2324-2334.
doi: 10.1038/s41436-021-01268-w. Epub 2021 Aug 16.

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

Andrea Lenartz  1 , Aaron M Scherer  2 , Wendy R Uhlmann  3 , Sonia M Suter  4 , Colleen Anderson Hartley  5 , Anya E R Prince  6
Affiliations

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

Andrea Lenartz et al. Genet Med. 2021 Dec.

Erratum in

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 US 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 covers 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 about genetic discrimination and a lack of awareness and understanding of GINA and its scope of protections.

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Conflict of interest statement

Conflicts of Interest

The authors have no conflicts of interest to declare.

Figures

Figure 1:
Figure 1:
Objective Knowledge of GINA (N=421) *For health insurance and employment, the figure shows those who correctly responded ‘yes’. For all other categories, the figure shows those who correctly responded ‘no’.
Figure 2:
Figure 2:
Participant responses to questions about use of genetic information (N=421)
See this image and copyright information in PMC

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