More than 157 million people in the US receive their healthcare insurance through employer health plans. In
some cases, employers are offering voluntary workplace genomic testing (wGT) through such health plans.
Indeed, a growing number of employers are considering offering such services to their employees. However,
wGT raises substantial legal and policy concerns including privacy of genetic information. Given the expectation
that wGT will become more prevalent in the future, there is an urgent need to understand its benefits and risks.
Thus, we propose to assess the ethical, legal, social, and policy implications of wGT using a mixed-methods
approach and engaging multiple stakeholders at different stages of the study.
We have assembled an interdisciplinary team of national experts to study the following:
1) Examine employers' perspectives on wGT through: a) Landscape analysis to ascertain the prevalence and
distribution of wGT among US companies; and b) Semi-structured interviews of key executives of a range of
companies who are offering or declined to offer wGT to identify employers' motivations, challenges, and
perceived benefits of implementing wGT.
2) Investigate employees' views on and response to wGT through a: a) National web-survey of employed adults
to assess their attitudes and beliefs about wGT; b) Baseline web-survey of both wGT takers (n=500) and
decliners (n=500) in partnership with a large healthcare system to assess perceptions of the benefits, risks, and
limitations of wGT; and c) Follow-up web-survey of wGT takers to examine the psychological, behavioral, and
economic impact of wGT.
3) Employ a combination of approaches, including a deliberative workshop and modified Delphi process to distill
the findings of Aim 1 and 2, ultimately yielding an empirically informed normative assessment of wGT. We will
engage a broad set of stakeholders including employers, employees, labor and business organizations, and
policy makers regarding potential harms and benefits of wGT.
Impact: The findings from this study will reveal the prominent issues and stakeholder perspectives in an
understudied area of genomic testing and identify key ethical, legal, social, and policy considerations for
employees and employers, and suggest practice and policy options for implementation and governance of wGT.