TOWARDS JUSTICE, EQUITY, AND COMMUNITY EMPOWERMENT IN GENOMICS STUDIES ON BEHAVIORAL, PSYCHIATRIC AND NEURODEVELOPMENTAL TRAITS

Abstract

Genomics research on sensitive traits such as neurodevelopmental, psychiatric, and behavioral traits poses numerous conceptual, methodological, ethical, legal, and social challenges. Community engagement and participatory research have been proposed as tools to increase the relevance, rigor, and acceptability of research, including genetic and biomedical studies. Informed by a growing body of research and lessons learned from recent and ongoing efforts to engage communities affected by genomics studies, I set a vision for more just, equitable, and collaborative genomics where primary stakeholders are included in research and decision-making as peers and collaborators, not solely as objects of study. Further, considering recent debates, lapses, and successes, I propose frameworks to promote respectful and productive engagement, communication, and collaboration between diverse stakeholders.