The Genetic Information Nondiscrimination Act and workplace genetic testing: Knowledge and perceptions of employed adults in the United States

Abstract

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.

Keywords: GINA; attitudes; employment; genetic testing; knowledge.

FIGURE 1

Objective GINA knowledge scores. The total possible points for the GINA Knowledge Sum Score was 13. No participants answered all questions correctly. Abbreviations: GINA, Genetic Information Non‐Discrimination Act; N, sample size; SD, standard deviation.