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.
A number of US employers are offering their employees confidential workplace genomic testing (wGT), a service that could inform employees of their genetic risk for certain treatable diseases but may also raise concerns about genetic privacy and workplace discrimination. To understand the potential benefits and risks of wGT, we will survey and interview employers and employees to assess (1) the factors that employers consider when deciding whether or not to offer wGT, (2) the factors that employees consider when deciding whether or not to utilize wGT, and 3) the impact of wGT on employees who have actually undergone testing. By discussing these perspectives in a deliberative workshop with additional wGT stakeholders (e.g., labor, business, and healthcare professional organizations), we will identify the key ethical, legal, social, and policy implications of wGT and suggest practice and policy options for its safe implementation and governance.
