Organizational and Cultural Dynamics in Genomics Companies: Industry Engagement in Navigating Social and Ethical Issues

Summary: This R00 Award investigates approaches to social and ethical issues within the private sector genomics industry in the US, examining stakeholder perspectives on pathways towards equitable and just outcomes for the field. It does so through methods for both descriptive and normative ethics as well as stakeholder engagement. This includes an investigation of how members of the private sector genomics industry think and talk about the ethical and social dynamics of their work, using interview, survey, and observational methods.

Members of the private sector genomics industry make daily decisions that shape the distribution of the benefits of biomedicine -- from decisions about product pricing to companies’ very understandings of their target customers and markets. With the industry’s central role in shaping how genomic innovations reach the public, perspectives from members of this industry are especially important to possibilities for ethical futures. This study leverages its descriptive examination of stakeholder perspectives to then inform normative analyses and participatory policy and governance planning. In addition to a broad scoping of ethical and social issues as seen from across the industry, the project addresses issues of responsibility, profit, and models of innovation in private sector genomics.

The study aims to:

Describe the perspectives of individuals working in genomics in the private sector regarding the social and ethical challenges faced in the industry, as well as individuals’ and companies’ responses to these challenges.
Normatively evaluate the ethics of private profit and social obligation in the genomics industry, based on systematic application of key normative theories in bioethics and business ethics.
Identify strategic priorities for ethics intervention in private sector genomics, based on a deliberative engagement process with industry stakeholders.