Multidisciplinary stakeholder-informed identification of key characteristics for implementation of workplace genetic testing

Abstract

Workplace genetic testing (wGT) is an evolving model for genetic testing where employees are offered consumer genetic testing through employer-sponsored wellness programs. However, the potential harms, benefits, and key characteristics for best implementation practices for wGT have yet to be defined. To address this issue, we conducted a three-round modified Delphi process, including multiple rounds of survey and a virtual deliberative workshop, with purposely chosen wGT stakeholders (employees, employers, ethical, legal, and social implications [ELSI] professionals, genetic testing industry representatives, and healthcare professionals) to share their perspectives. From the modified Delphi process, we identified 12 key characteristics for the implementation of wGT that were perceived to increase the potential for benefit while reducing the risk of potential harms. Most participants agreed that privacy/security, voluntariness, transparency, understanding and education, anti-discrimination, employee control, and evidence-based testing measures were both important (>90%) and necessary (>75%) for the implementation of wGT. However, some participants also expressed a lack of confidence in the likelihood of achieving these characteristics in wGT programs. Overall, stakeholders expressed qualified support for wGT at the conclusion of the modified Delphi process. Their perspectives on the topic varied over the course of the process and were at least partially contingent on whether the aforementioned 12 key characteristics were met. These findings help inform the establishment of a normative framework for wGT assessment.

Keywords: Delphi; ELSI; genetic testing; wellness programs; workplace genetic testing.

Figure 1

Key characteristics of workplace genetic testing (wGT) and their importance, necessity, and likelihood of being achieved as perceived by participants (n = 30) Importance (x), likelihood of being achieved (y), with shapes of symbols (legend) denoting the percentage of participants who indicated the key characteristic was “necessary” for wGT to be offered. Values plotted on the x/y axes represent mean of Likert-scale scores for each characteristic.