Equity and Engagement Through Innovative Research Frameworks: Results from human genomic studies

Abstract: Despite progress in articulating goals of diversity, equity, and inclusion in precision medicine and genomics research, a systematic method for assessing equity, justice, and benefit for the communities targeted for these studies remains elusive. There is a need for more research on how researchers in genomic studies, many of which involve multiple institutions, nations, and regulatory regimes, seek to establish fair and transparent partnerships with groups and communities. The panel will present an array of perspectives on what constitutes equitable community partnerships. It will draw on panelists’ research methods and expertise in various fields, including law, political science, sociology, history, bioethics, and ELSI, highlight gaps in existing work, identify challenges in implementation efforts, and illuminate innovative approaches for engaging communities of people with disabilities, research participants from the global south, and marginalized racial and ethnic groups. This multidisciplinary, multi-career stage panel will enhance attendees’ knowledge of the regulatory spaces, ethics frameworks, and complex dynamics that shape interactions between communities and institutions and present real-world examples of equity-driven research approaches designed to elevate community interests. Taken collectively, these varied presentations will highlight the potential for genomic research to recognize marginalized communities’ humanity and rights to self-determination by innovating within and intervening on the power relations that typically characterize the research ecosystems in which they exist.