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.

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

Carolyn Neuhaus, PhD

Principal Investigator

Research Scholar, The Hastings Center
Bio

​Johanna Crane, PhD

Principal Investigator

Associate Professor, Alden March Bioethics Institute, Albany Medical College
Bio

Nancy Berlinger, PhD

Co-Investigator

Research Scholar, The Hastings Center
Bio

Karen Maschke, PhD

Co-Investigator

Research Scholar, The Hastings Center
Bio

Danielle Pacia, MBE

Project Manager

Project Manager-Research Assistant, The Hastings Center
Bio