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Workplace Genomic Testing: What Do Company Websites Say about Federal Privacy and Anti-Discrimination Laws?
Betty Cohn1, Anya E R Prince2, Katherine Callahan3
1Institute for Public Health Genetics, University of Washington, Seattle, Washington, USA, bcohn@uw.edu.
Public Health Genomics
|May 4, 2025
Summary
Most companies offering workplace genetic testing (wGT) mention the Health Insurance Portability and Accountability Act (HIPAA) but fail to mention the Genetic Information Nondiscrimination Act (GINA). Clear communication of these policies is crucial for employee decision-making.
Area of Science:
- Genomics
- Health Policy
- Occupational Health
Background:
- Workplace genetic and/or genomic testing (wGT) is increasingly offered through wellness programs.
- Employees need awareness of legal protections for their genetic information, including HIPAA and GINA.
- Company websites are a key resource for communicating these health policies to employees.
Purpose of the Study:
- To determine if companies offering wGT inform employees about HIPAA and GINA.
- To assess the extent to which these legal protections are referenced on company websites.
Main Methods:
- Systematic review of 420 company websites.
- Included publicly and privately held companies, hospitals, and companies with evidence of offering wGT.
- Searched for mentions of HIPAA and GINA in relation to wGT services.
Main Results:
- 50 out of 420 companies (11.9%) offered wGT.
- 64% (32/50) of companies offering wGT mentioned HIPAA.
- 0% of companies offering wGT mentioned GINA.
Conclusions:
- Employers and vendors must uphold HIPAA and GINA.
- Accessible information on these policies is essential for employees to weigh the risks and benefits of wGT.
- There is a significant gap in communicating GINA protections to employees regarding wGT.
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