Workplace genomic testing: What do company websites say about federal privacy and anti-discrimination laws?

Introduction: Employees considering participation in workplace genetic and/or genomic testing (wGT) as part of workplace wellness programs should be aware of legal protections of their personal genetic information. Given the relevance of the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA) for informed decision making, employers offering wGT should ideally inform employees of these health policies prior to collecting any genetic data. It is unclear, however, whether and to what extent such information is being provided. Company websites provide one important resource for making employees-and the public at large-aware of important health policies governing workplace wellness programs in general, and wGT services in particular.

Method: We systematically reviewed the websites of 420 companies (including 140 privately-held companies from the 2019 Forbes list of largest privately-held companies, 140 publicly-held companies from the 2019 Forbes list of largest publicly-held companies, 104 hospitals/hospital systems, and 36 companies that had evidence that they offer/have offered wGT) offering wGT services to determine if they included reference to HIPAA and GINA.

Results: Our search for wGT programs on company websites found that 50 of 420 companies had evidence of offering wGT. We found 32/50 (64%) mentions of HIPAA and no mentions of GINA.

Conclusions: It is imperative that HIPAA and GINA are upheld by both vendors and employers. Accessible and understandable information on these policies is needed for employees to analyze the benefits and risks of participating in wGT.