Voluntary workplace genomic testing: wellness benefit or Pandora’s box?

Abstract

Consumer interest in genetic and genomic testing is growing rapidly, with more than 26 million Americans having purchased direct-to-consumer genetic testing services. Capitalizing on the increasing comfort of consumers with genetic testing outside the clinical environment, commercial vendors are expanding their customer base by marketing genetic and genomic testing services, including testing for pharmacogenomic and pathogenic variants, to employers for inclusion in workplace wellness programs. We describe the appeal of voluntary workplace genomic testing (wGT) to employers and employees, how the ethical, legal, and social implications literature has approached the issue of genetic testing in the workplace in the past, and outline the relevant legal landscape. Given that we are in the early stages of development of the wGT market, now is the time to identify the critical interests and concerns of employees and employers, so that governance can develop and evolve along with the wGT market, rather than behind it, and be based on data, rather than speculative hopes and fears.

Genomic testing in voluntary workplace wellness programs in the US: Evidence and challenges

“…According to the Equal Employment Opportunity Commission's (EEOC) Final Rule on Employer Wellness Programs and Title I of the Americans with Disabilities Act, workplace wellness programs “generally [refer] to health promotion and disease prevention programs and activities offered to employees as part of an employer‐sponsored group health plan or separately as a benefit of employment” ( EEOC's Final Rule on Employer Wellness Programs and Title I of the Americans with Disabilities Act , 2016). Voluntary workplace wellness programs are implemented in an effort to benefit both the employer and the employee by reducing employer costs and maintaining employee health (Sanghavi et al, 2022).…”

“…Currently, incentives may be offered to employees to participate in these programs, since the 2010 Affordable Care Act (ACA) permitted more flexibility and broadened the potential use of workplace wellness programs ( The Patient Protection and Affordable Care Act , 2010). While workplace wellness programs are marketed to employees as prioritizing employee health, employers' primary focus is often cost reduction, which may be accomplished by shifting costs to those who are less healthy in the form of higher premiums (Horwitz et al, 2013; Sanghavi et al, 2022). In addition, several recent studies suggest that workplace wellness programs in general do not impact costs or employee health in a significant way (Hendricks‐Sturrup et al, 2020; Hull & Pasquale, 2018).…”

“…While the genetic testing market continues to grow, there is little research on companies offering genetic and genomic testing to their employees in the context of wGT (Sanghavi et al, 2022; Straits Research, 2022). The widely cited Society of Human Resource Management (SHRM) 2018 study stated that 18% of employers in the United States (U.S.) offer genetic testing for their employees (SHRM, 2018; Singer, 2018; Varn, 2019).…”

“…One type includes genetic or genomic testing that is covered through a company's health insurance or medical plan (“carve‐in”), such as BRCA1 or BRCA2 testing for employees who meet specific criteria (e.g., high risk of developing breast or ovarian cancer) (Mercer, 2018). The second, less common type, is captured by the term wGT: genetic and genomic testing under a company's voluntary workplace wellness program, usually through a partnership with a genetic testing vendor (“carve‐out”) (Sanghavi et al, 2022). These two types of testing differ in that the former is covered by one's health insurance in the context of medical care, while the latter is an optional benefit offered by a genetic testing vendor and can decrease health care premium costs ( The Patient Protection and Affordable Care Act , 2010).…”

“…Thus, we set out to determine the prevalence and distribution of wGT within voluntary wellness programs among U.S. companies. Given that the consumer wellness genomics market is only expected to increase in the coming years (Future, 2022), it is essential to study the current landscape in order to identify its risks and benefits and to recommend appropriate governance (Sanghavi et al, 2022).…”