Frequently Asked Questions
What is voluntary workplace genomic testing?
Voluntary workplace genomic testing is any form of genetic or genomic testing offered through a workplace wellness program (Sanghavi et al., 2022). Different types of tests offered through workplace wellness programs include, but are not limited to, ancestry testing, pharmacogenomic variant analysis, and inherited cancer or cardiac syndromes (Mcdonald et al., 2020).
What are workplace wellness programs?
There is no solitary definition of what a workplace wellness program is (Mujtaba & Cavico, 2013). The accepted definition we use is “an employer-sponsored program to promote employee wellness in hopes of reducing healthcare costs, and improving productivity” (Sanghavi et al., 2022). Examples include: smoking cessation assistance, biometric screening, and gym memberships (Mujtaba & Cavico, 2013).
Who has access to the data collected in workplace wellness programs?
The Genetic Information Nondiscrimination Act states that employers can access aggregate genetic data collected as part of voluntary wellness programs (GINA, 2008). Access to employee health information is covered in part by multiple entities, including the Americans with Disabilities Act, Health Insurance Portability and Accountability Act, the Affordable Care Act, and various state laws, yet it is unclear whether the combination of these laws and acts create an appropriate safety net from employer and insurance carrier misuse of data (Jost, 2015; Sanghavi et al., 2022).
What is ELSI?
ELSI stands for Ethical, Legal, and Social Implications. In research, ELSI exploration includes multiple disciplines and frequently applies to developing areas of science and technology. In the United States, ELSI research specifically concerns studying the ELSI of genetics and genomics (Dolan, 2020). For example, the ELSI Research Program of the National Human Genome Research Institute at the National Institutes of Health is an ELSI program that was initially created to explore the ELSI of mapping and sequencing the human genome (Dolan, 2020).
What are the possible benefits and harms of voluntary workplace genomic testing?
This is an area still under exploration! But some possible benefits are the opportunity of finding a medically relevant genetic change that is actionable thereby giving the employee the chance to improve their health and lower insurance premiums for their employers, as well increasing access to genetic testing (Sanghavi et al., 2022). Additionally, it has been shown that employees are interested in the workplace as an avenue for testing (Sanghavi et al., 2021). Possible harms of voluntary workplace genomic testing include risks to employee genetic privacy and risk for genetic discrimination (Sanghavi et al., 2022).
Americans with Disabilities Act. 42 (1990)
Dolan, D., (2020). What is ELSI research? ELSIhub.
Genetic Information Nondiscrimination Act of 2008 (GINA). (2008). Pub. L. 110-233, 122 Stat. 881.
Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104-191, 110 STAT. 1936 (1996)
H.R. 493 — 110th Congress: Genetic Information Nondiscrimination Act of 2008.
Jost, T. (2015). Workplace Wellness Programs: Federal Agencies Weigh In (Update on Contraceptive Coverage). Health Affairs Blog.
McDonald, W. S. et al. Genetic testing and employer-sponsored wellness programs: An overview of current vendors, products, and practices. Molecular Genetics & Genomic Medicine 8, e1414 (2020).
Mujtaba, B. G. & Cavico, F. Corporate Wellness Programs: Implementation Challenges in the Modern American Workplace. (2013).
Patient Protection and Affordable Care Act of 2010, Pub. L. No. 111-148, 124 Stat. 119 (2010), Codified as Amended 42 U.S.C. § 18001.
Sanghavi, K., Cohn, B., Prince, A., Feero, W. G., Ryan, K. A., Spector-Bagdady, K., Uhlmann, W. R., Lee, C., Roberts, J. S., & Mathews, D. (2022). Voluntary workplace genomic testing: wellness benefit or Pandora's box?. NPJ genomic medicine, 7(1), 5.
Sanghavi, K., Feero, W. G., Mathews, D., Prince, A., Price, L. L., Liu, E. T., Brothers, K. B., Roberts, J. S., & Lee, C. (2021). Employees' Views and Ethical, Legal, and Social Implications Assessment of Voluntary Workplace Genomic Testing. Frontiers in Genetics, 12, 643304.