Diversity, Profit, Control: An Empirical Study of Industry Employees' Views on Ethics in Private Sector Genomics.

Abstract

Background: Large amounts of capital are currently being invested in genomics companies across the "bench to clinic pipeline" - companies which are now shaping the future of biomedicine globally. Understanding the perspectives of people who work in such companies can contribute to shaping this industry in service of just and equitable futures of medicine.

Methods: Using in-depth interviews as the primary method, this paper analyzes perspectives on ethical and social issues in private sector genomics expressed by members of the commercial genomics industry in the US.

Results: Interviewees described a wide range of issues as pressing ethical concerns in commercial genomics. Key themes included concerns about diversity in genetic datasets, data governance and control, and pricing and profits in the industry. However, concern about diversity of datasets was not accompanied by expressions of concern about diversity in the industry workforce.

Conclusions: Most interviewees described concerns in the industry that are rather removed from their own work. But along with this "ethical distancing," moral concerns appeared to be the basis for competition amongst companies - to attract both employees and customers. Research in business ethics suggests that expanding moral analysis of one's own work helps improve day to day decision-making in the interest of justice. Opening space for people to examine ethics in their own subsector may provide a means for the private sector genomics industry to become a leader in ethics in the biosciences and a model for equity in our current moment of late capitalism.