Motivations Study Supplement
Meeting the Follow-up Needs of All of Us Research Participants from Federally Qualified Health Centers
Funder: Office of the Director, National Institutes of Health
A key early finding from the Motivations Study is that returning genetic information to FQHC patients introduces ethical challenges for FQHC practitioners and administrators. Given pre-existing barriers to securing medically recommended follow-up care beyond the scope of a primary healthcare setting, how would All of Us participants from FQHCs secure appropriate precision medicine follow-up based on return of results?
Our project team convened five of the six FQHCs participating in All of Us, plus expert advisors from bioethics and community health, to explore these new challenges. The project ran from September 1, 2020-August 31, 2023.
Issue Brief
Read “Strategies to Support Equitable Access to Precision Medicine for All of Us Participants from Federally Qualified Health Centers”
FQHC Partners
Eau Claire Cooperative Health Centers (South Carolina)
Beverly Holmes, MSW
Sun River Health (New York)
Nancy Jenks, FNP and Liliana Lombardi, MD
Cherokee Health Systems (Tennessee)
Parinda Khatri, PhD and Febe Wallace, MD
San Ysidro Health (California)
Fatima Munoz, MD, MPH and Gregory Talavera, MD, MPH
Community Health Center (Connecticut)
Amy Taylor, PhD
Project Advisors
Rachel E. Fabi, PhD
Assistant Professor, Center for Bioethics and Humanities, SUNY Upstate Medical University
Bio
Holly Fernandez Lynch, JD, MBE
John Russell Dickson, MD Presidential Assistant Professor of Medical Ethics and Assistant Professor of Law (secondary), University of Pennsylvania
Bio
Richard R. Sharp, PhD
Lloyd A. and Barbara A. Amundson Professor of Biomedical Ethics, Professor of Biomedical Ethics and Medicine, and Director of Biomedical Ethics Research Program, Mayo Clinic
Bio
Project Team
Johanna Crane, PhD
Principal Investigator
Associate Professor, Alden March Bioethics Institute, Albany Medical College
Bio