Advancing Inclusion, Promoting Good Governance and Building Trustworthiness: Lessons from the All of Us Research Program
Guest speaker Professor Rosario Isasi, Dr John T. Macdonald Foundation Department of Human Genetics, University of Miami Miller School of Medicine (MSOM)
The US National Institutes of Health’s million-person, longitudinal cohort study, the All of Us Research Program seeks to capitalizes the rich diversity of the initiatives’ cohort populations to advance scientific discoveries while at the same time maximize justice in the distribution of benefit from those discoveries.
Abstract : Key to the All of Us is dynamic participant-centered engagement as well as diversity. Diversity of people, data types, and ways of life. At the core of the program is a commitment to build trustworthiness with individuals and communities who have suffered historical harms from biomedical research: Trust that science will both serve these communities and protect their collective and individual interests. All of Us is a unique precision medicine initiative because of its ethos of inclusion: a commitment to change the paradigm, so no community is left behind.
This session will provide an opportunity to learn about the All of Us Research Program and its core values. It will further address the governance mechanisms created to achieve the Program’s stated goals. It will particularly focus on efforts to integrate socio-ethical reflection to inform the program’s design, implementation, and policy development.
Rosario Isasi, J.D., M.P.H., is a Research Associate Professor of Human Genetics at the Dr. John T. Macdonald Foundation Department of Human Genetics at the University of Miami Miller School of Medicine (MSOM). She holds multiple appointments including, as Adjunct Professor of Law at UM School of Law and as member of the John P. Hussman Institute for Human Genomics and the Interdisciplinary Stem Cell Institute at the MSOM.
Prof. Isasi’s research is devoted to identifying and analyzing the social, ethical and policy dimensions of novel and disruptive genetic technologies, such as regenerative medicine, stem cells and genomics. She has built an international reputation as a scholar with particular expertise in the area of international comparative law and health disparities.
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