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Tribal Collaboration Working Group of the All of Us Research Program Advisory Panel

 

Purpose

The All of Us Research Program is committed to ensuring that the program reflects the diversity of the United States and includes individuals who have typically been underrepresented in biomedical research. The Tribal Collaboration Working Group, a working group of the All of Us Research Program Advisory Panel, will provide information for consideration regarding the inclusion of American Indian and Alaska Native (AI/AN) populations in the program.

Deliverables

The Tribal Collaboration Working Group will identify strategies for developing meaningful, culturally sensitive collaborations with AI/AN populations. It will offer input to the All of Us Research Program Advisory Panel, describing collaboration opportunities and potential challenges.

Critical issues for consideration may include the following:

  1. Strategies for collaboration, engagement, enrollment, and retention: How should the All of Us Research Program collaborate with tribal nations, clinics, and organizations to enable AI/AN participation in this program? What partnership models should the program pilot? What are best practices for successful engagement, enrollment, and retention of AI/AN individuals for the duration of this research study?
     
  2. Unique considerations: What unique considerations, such as tribal sovereignty, cultural beliefs and traditions, and historical trauma, should the program be aware of? What are the associated challenges and best practices for biomedical research initiatives?
     
  3. Protocol: What elements of the All of Us Research Program master protocol may need modification to facilitate AI/AN participation? Would these protocol modifications be different for AI/AN individuals who live on a tribal reservation versus those who reside or receive health care in other locations?
     
  4. Ethical, legal, and social issues: What are the major ethical, legal, and social issues that need to be considered before AI/AN individuals are recruited into the All of Us Research Program?
     
  5. Scientific vision: What kinds of major research questions should the program anticipate will be of interest to tribal nations and AI/AN individuals? How can the AI/AN community be engaged to provide input on research questions of interest to their community? How should the All of Us Research Program enable research that can return value to the AI/AN community?

Roster:

Co-chairs:

Lynn Malerba, D.N.P., M.P.A., Chief, Mohegan Tribe

Spero Manson, Ph.D., Distinguished Professor and Director, Centers for American Indian and Alaska Native Health, Colorado School of Public Health, University of Colorado Denver

Members:

Murray Brilliant, Ph.D., Director, Center for Human Genetics, Marshfield Clinic Research Institute

Denise Dillard, Ph.D., Director of Research, Southcentral Foundation

Abigail Echo-Hawk, M.A., Chief Research Officer, Seattle Indian Health Board; Director, Urban Indian Health Institute

Kevin English, Dr.P.H., Director, Albuquerque Area Southwest Tribal Epidemiology Center

Karen Maschke, Ph.D., Research Scholar and Editor, IRB: Ethics & Human Research, The Hastings Center

John Molina, M.D., J.D., L.H.D., Corporate Compliance Officer, Native Health; Program Lead, Special Populations Engagement, All of Us Research Program, University of Arizona Consortium

Kelly Moore, M.D., FAAP, Associate Professor, Centers for American Indian and Alaska Native Health, Colorado School of Public Health, University of Colorado Denver

Marcia O’Leary, RN, Missouri Breaks Industries Research, Inc.

Liana Onnen, Chairperson, Prairie Band Potawatomi Nation; Co-Chair, Tribal Advisory Committee, National Institutes of Health

Dara Richardson-Heron, M.D., Chief Engagement Officer, All of Us Research Program, National Institutes of Health

Bobby Saunkeah, RN, MSHCE, CIP, Manager, Division of Research and Population Health, Chickasaw Nation Department of Health; Chair and Human Research Protections Administrator, Chickasaw Nation Institutional Review Board

Rachael Tracy, MPH, Research Director, Division of Planning, Evaluation, and Research, and Chair, National Institutional Review Board, Office of Public Health Support, Indian Health Service

Malia Villegas, Ed.M.

David Wilson, Ph.D., Director, Tribal Health Research Office, Division of Program Coordination, Planning, and Strategic Initiatives, Office of the Director, National Institutes of Health

Members of the Advisory Panel Tribal Working Group