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

Andrea Lenartz; Aaron M Scherer; Wendy R Uhlmann; Sonia M Suter; Colleen Anderson Hartley; Anya E. R Prince

doi:10.1038/s41436-021-01268-w

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

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

Andrea Lenartz, Aaron M Scherer, Wendy R Uhlmann, Sonia M Suter, Colleen Anderson Hartley and Anya E. R Prince

Genetics in medicine, Vol.23(12), pp.2324-2334

08/16/2021

DOI: 10.1038/s41436-021-01268-w

PMID: 34400812

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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.

Details

Title: Subtitle: The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage
Creators: Andrea Lenartz
Aaron M Scherer - University of Iowa
Wendy R Uhlmann - University of Michigan
Sonia M Suter - George Washington University
Colleen Anderson Hartley
Anya E. R Prince - University of Iowa
Resource Type: Journal article
Publication Details: Genetics in medicine, Vol.23(12), pp.2324-2334
DOI: 10.1038/s41436-021-01268-w
PMID: 34400812
NLM abbreviation: Genet Med
ISSN: 1098-3600
eISSN: 1530-0366
Language: English
Date published: 08/16/2021
Academic Unit: General Internal Medicine; Law Faculty; Internal Medicine
Record Identifier: 9984202133202771

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