ELSIcon2022 Paper: Mapping Diversity and Equity in Precision Medicine Research: Towards an Ethics of Inclusion

ELSIcon2022 • Paper • June 1, 2022

Sandra Soo-Jin Lee and Janet Shim on behalf of Ethics of Inclusion Study Team

This paper draws on our study that takes a research ‘lifecourse’ perspective to identify how approaches towards diversity and inclusion are managed in tandem with other research goals. We account for how diversity is conceptualized and put into practice in five precision medicine research (PMR) studies embedded in three national consortia, by tracing how different actors and institutions describe, define, measure, compare and characterize diversity among individuals. Based on document analysis, interviews, and observations over the last 3 years, we analyze how institutional and other priorities, resources, and constraints are weighed, and identify tradeoffs that are made over time and their upstream and downstream consequences for goals of diversity and equity. We find that while PMR team members and their collaborators understood the stakes for decisions at a specific phase of a study’s lifecourse—for example, recruitment or data harmonization—there was little understanding of how their choices impacted or were informed by those made in other study phases. To illuminate the consequences of key choices in PMR and their impact on goals of diversity, we discuss a diversity decision map based on our research to explain the path dependencies of specific choices. Building on our empirical work and engagement with PMR stakeholders (including funders, researchers, and research participants), we demonstrate how the diversity decision map can proactively support design and implementation of study goals and practices and help generate a clearer understanding of their consequences for diversity and inclusion.