TY - JOUR
T1 - The Genetic Information Nondiscrimination Act and workplace genetic testing
T2 - Knowledge and perceptions of employed adults in the United States
AU - for the INSIGHT @ Work Consortium
AU - Willard, Lindsay
AU - Uhlmann, Wendy
AU - Prince, Anya E.R.
AU - Blasco, Drew
AU - Pal, Subhamoy
AU - Roberts, J. Scott
AU - Brandt, Rachael
AU - Charnysh, Elizabeth
AU - Cohn, Betty
AU - Crumpler, Nicole
AU - Feero, W. Gregory
AU - Ferber, Rebecca
AU - Giri, Veda
AU - Hendy, Katherine
AU - Mathews, Debra
AU - McCain, Sarah
AU - Ryan, Kerry
AU - Sanghavi, Kunal
AU - Spector-Bagdady, Kayte
AU - Vogle, Alyx
AU - Lee, Charles
AU - Reader, Jon
AU - Brothers, Kyle
AU - Clayton, Ellen Wright
AU - Deverka, Patricia
AU - Ellis, Thomas
AU - Goldenberg, Aaron
AU - Mockus, Susan
AU - Morton, Cynthia Casson
AU - Rueter, Jens
AU - Witham, Brett
AU - Bessey, Ethan
AU - Gordon, Erynn
AU - Lee, La Tasha
AU - Roberts, Jessica
AU - Saidi, Fatima
N1 - Publisher Copyright:
© 2024 The Author(s). Journal of Genetic Counseling published by Wiley Periodicals LLC on behalf of National Society of Genetic Counselors.
PY - 2024
Y1 - 2024
N2 - Workplace wellness programs are an emerging avenue for health-related genetic testing, with some large employers now offering such testing to employees. Employees' knowledge and concerns regarding genetic discrimination may impact their decision-making about and uptake of workplace genetic testing (wGT). This study describes employed adults' objective knowledge of the Genetic Information Nondiscrimination Act (GINA) and evaluates how this knowledge correlates with attitudes and beliefs regarding wGT. Analyses utilized data from a large, national web-based survey of employed adults (N = 2000; mean age = 43 years; 51% female; 55.2% college educated). Overall, most respondents (57.3%) said they were unaware of any laws protecting against genetic discrimination. Specifically, 62.6% indicated they were not at all familiar with GINA. The primary study outcome was respondents' score on a 13-item measure assessing knowledge of basic facts about GINA. Participants had low overall GINA knowledge (M = 4.6/13 items correct (35%), SD = 2.9), with employees often presuming GINA offers greater legal protections than it does (e.g., 45.3% erroneously endorsed that GINA protected against discrimination in life insurance). Logistic regression analyses assessed associations between GINA knowledge and employees' demographic characteristics, prior experience with genetic testing, and attitudes regarding wGT. Variables significantly associated with GINA knowledge included higher interest in wGT (aOR = 1.45; 95% CI: 1.20, 1.77), self-reported familiarity with GINA (aOR = 2.02; 95% CI: 1.64, 2.50), and favorable attitudes toward wGT (aOR = 1.92; 95% CI: 1.52, 2.44). Results indicate public knowledge of GINA remains low over 15 years after its passage. These findings highlight the need for employee education on GINA before participating in wGT, as well as broader public education on GINA's legal protections and limitations. Genetic counselors lead GINA education efforts in clinical and public settings and can play a pivotal role in ongoing public education initiatives about GINA.
AB - Workplace wellness programs are an emerging avenue for health-related genetic testing, with some large employers now offering such testing to employees. Employees' knowledge and concerns regarding genetic discrimination may impact their decision-making about and uptake of workplace genetic testing (wGT). This study describes employed adults' objective knowledge of the Genetic Information Nondiscrimination Act (GINA) and evaluates how this knowledge correlates with attitudes and beliefs regarding wGT. Analyses utilized data from a large, national web-based survey of employed adults (N = 2000; mean age = 43 years; 51% female; 55.2% college educated). Overall, most respondents (57.3%) said they were unaware of any laws protecting against genetic discrimination. Specifically, 62.6% indicated they were not at all familiar with GINA. The primary study outcome was respondents' score on a 13-item measure assessing knowledge of basic facts about GINA. Participants had low overall GINA knowledge (M = 4.6/13 items correct (35%), SD = 2.9), with employees often presuming GINA offers greater legal protections than it does (e.g., 45.3% erroneously endorsed that GINA protected against discrimination in life insurance). Logistic regression analyses assessed associations between GINA knowledge and employees' demographic characteristics, prior experience with genetic testing, and attitudes regarding wGT. Variables significantly associated with GINA knowledge included higher interest in wGT (aOR = 1.45; 95% CI: 1.20, 1.77), self-reported familiarity with GINA (aOR = 2.02; 95% CI: 1.64, 2.50), and favorable attitudes toward wGT (aOR = 1.92; 95% CI: 1.52, 2.44). Results indicate public knowledge of GINA remains low over 15 years after its passage. These findings highlight the need for employee education on GINA before participating in wGT, as well as broader public education on GINA's legal protections and limitations. Genetic counselors lead GINA education efforts in clinical and public settings and can play a pivotal role in ongoing public education initiatives about GINA.
KW - attitudes
KW - employment
KW - genetic testing
KW - GINA
KW - knowledge
UR - http://www.scopus.com/inward/record.url?scp=85199219448&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85199219448&partnerID=8YFLogxK
U2 - 10.1002/jgc4.1945
DO - 10.1002/jgc4.1945
M3 - Article
C2 - 39037108
AN - SCOPUS:85199219448
SN - 1059-7700
JO - Journal of Genetic Counseling
JF - Journal of Genetic Counseling
ER -