ELSIcon2022 • Flash • May 27, 2022
Alyx Vogle, Betty Cohn, Rebecca Ferber, Kerry Ryan, Gregory Feero, Debra Mathews, Anya Prince, Kayte Spector-Bagdady, Kunai Sanghavi, Wendy Uhlmann, Charles Lee, J. Scott Roberts
In this NIH R01 study, we employ a mixed-methods approach implemented by an interdisciplinary, multi-site team with expertise in bioethics, law, health psychology, genetic medicine and counseling, to assess the ELSI of wGT. As health-related genomic testing expands, employers have begun offering wGT to employees through workplace wellness programs. wGT can reach populations beyond the traditional medical model of care, and proponents note its potential for improving employee health outcomes and lowering employer costs. Yet wGT also raises important ELSI issues (e.g., genetic discrimination, employees’ genetic privacy). This poster describes the following project and methodologies: (1) Describe employers’ current practices and decision-making regarding wGT; (2) Assess how employees view and respond to wGT; and 3) Assess the ELSI of wGT from multiple stakeholder perspectives. Aim 1 features a comprehensive landscape analysis identifying companies currently offering wGT (or not), complemented by qualitative interviews with a subset of companies on their wGT decision making and motivations. Aim 2 includes: a) national survey (n=2,000) of a diverse population of employed adults to assess attitudes, beliefs, and experiences regarding wGT; and b) survey (n=1250) of employees at a large healthcare system where wGT has been offered since 2018. Aim 3 uses a deliberative workshop and modified Delphi process to engage key stakeholders (e.g., employers, employees, labor and business organizations, insurance and genomic testing companies, health professional organizations, policymakers, regulators) regarding potential benefits and harms of wGT. This project will yield data to inform practice and policy in this emerging area of genetic testing.