‘Forget the age of HIPAA and lean into the age of consumer privacy’: exploring ethics and responsibility among private sector genomics leaders using group interviews

ABSTRACT This paper assesses stakeholder perspectives on ethical issues in the private sector genomics industry; specifically, it examines perspectives from executives of genomics companies, using qualitative group interviews. As part of the third round of a larger Delphi study, private sector leaders were asked to provide their views on issues related to diversity (in both the genomics workforce and amongst genomics study participants), data privacy and governance laws, and benefit-sharing, in addition to the industry’s role (or lack thereof) in addressing these challenges. Our findings show 1) general consensus that industry should be a primary driver of privacy innovation amidst a difficult landscape for aligning government-based privacy regulations, 2) linking of diversity to privacy issues in the industry, and 3) a tendency to ascribe responsibility for change to actors other than those within private sector companies.