Abstract
Employers have begun to offer voluntary workplace genomic testing (wGT) as part of employee wellness benefit programs, but few empirical studies have examined the ethical, legal, and social implications (ELSI) of wGT. To better understand employee perspectives on wGT, employees were surveyed at a large biomedical research institution. Survey respondents were presented with three hypothetical scenarios for accessing health-related genomic testing: via (1) their doctor; (2) their workplace; and 3) a commercial direct-to-consumer (DTC) genetic testing company. Overall, 594 employees (28%) responded to the survey. Respondents indicated a preference for genomic testing in the workplace setting (70%; 95% CI 66–74%), followed by doctor’s office (54%; 95% CI 50–58%), and DTC testing (20%; 95% CI 17–24%). Prior to participating in wGT, respondents wanted to know about confidentiality of test results (79%), existence of relevant laws and policies (70%), and privacy protection (64%). Across scenarios, 92% of respondents preferred to view the test results with a genetic counselor. These preliminary results suggest that many employees are interested and even prefer genetic testing in the workplace and would prefer testing with support from genetic health professionals. Confirmation in more diverse employer settings will be needed to generalize such findings.
Highlights
Voluntary workplace genomic testing in the context of wellness programs is a growing access point for genetic screening for disease risk (Singer, 2018)
Some respondents were unsure about their appraisal of perceived benefits and risks or concerns regarding genomic testing in the three hypothetical scenarios. These findings suggest a role for employee education in wellness programs considering incorporation of workplace genomic testing (wGT), to inform employees about the longterm risks associated with wGT and to provide opportunities for the employees to assess the potential for protections to mitigate this risk
This study of wGT provides evidence that health-related genetic testing in a workplace setting is likely acceptable by the workforce, and that many employees may prefer wGT over receiving testing from a physician or a DTC company
Summary
Voluntary workplace genomic testing (wGT) in the context of wellness programs is a growing access point for genetic screening for disease risk (Singer, 2018). The complex web of state and federal laws that regulate medical information privacy and employer-provided group health insurance coverage do not comprehensively ensure protections against inappropriate use or misuse of wGT by third parties, such as law enforcement or insurance companies (Annas, 2001; Drabiak, 2017; Hudson and Pollitz, 2017; Golinghorst and Prince, 2020) Such uncertainty and legal concerns add to the more direct concerns about how personal genomic data might be used in the workplace setting (Lappé, 1983; Van Damme and Casteleyn, 1998)
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