Tribal Data Sharing & Genetics

4:00 - 6:00 PM: Basics of Genetics

Led by Nanibaa’ Garrison and Katrina Claw

UNM Cancer Center Auditorium, 1201 Camino de Salud, Albuquerque, NM

Breakfast (provided by hotel or available for purchase at on-site cafe)

8:00 AM: Welcome from UNM Cancer Center

Johnnye Lewis , PhD, Director, Center for Native Environmental Health Research Equity & Professor, UNM College of Pharmacy

8:10 AM: Welcome from the Navajo Nation

Honorable President, Russell Begaye (Diné), Navajo Nation Office of the President and Vice President

8:25 AM: The Charge for this Workshop

Delegate Walter Phelps (Diné), 23^rd Navajo Nation Council

8:45 AM: Previous Genetics Research with the Navajo

Clarita Lefthand-Begay, PhD (Diné), University of Washington

9:10 AM: History and Context of the Moratorium

Nanibaa’ Garrison, PhD (Diné), University of Washington

9:35 AM: NIH Big Science Initiatives and Genomic Analyses

Vence Bonham, JD, National Human Genome Research Institute

9:55 AM: Break

Session I: Research and Cultural Perspectives

10:15 AM: PANEL: Genetics Research – What we can learn

Moderator: Clarita Lefthand-Begay, PhD (Diné), University of Washington

Pharmacogenomics with Northwest and Alaska tribes - Katrina Claw, PhD (Diné), University of Washington

One Health Initiative: Interdisciplinary collaborations and communications in all aspects of health care for humans, animals and the environment - Gilbert John , PhD (Diné), Colorado State University

Mine Waste Exposures, Epigenetic Changes & Risk - Johnnye Lewis , PhD, Director, Center for Native Environmental Health Research Equity & Professor, UNM College of Pharmacy

Cancer – Susceptibility and Treatment - Cheryl Willman, MD, Director and CEO, UNM Comprehensive Cancer Center

11:45 AM: Lunch (provided on site by UNM Comprehensive Cancer Center)

1:00 PM : PANEL: Cultural & Spiritual Perspectives on Genetics

Moderator: David Begay, PhD (Diné), The University of New Mexico & Navajo Nation Human Research Review Board

Delegate Johnathan Hale (Diné), Chairman, Health Education and Human Services Committee, 23^rd Navajo Nation Council

Beverly Becenti-Pigman (Diné), Chair, Navajo Nation Human Research Review Board,

Michelle Kahn-John, PhD RN (Diné), Diné Hataałii Association

Kenneth Maryboy (Diné), Diné Medicine Man’s Association (pending)

Steve Benally (Diné), Azee’ Bee Nahagha of Diné Nation

Representative from Pueblos (TBD, Abq Area IRB)

2:30 PM: Patient/Family/Community Perspectives

Moderator: Nanibaa’ Garrison, PhD (Diné), University of Washington

Yolanda Sandoval-Nez (Diné), Parent, Native Disability Law

Janene Yazzie (Diné), Participant, Navajo Birth Cohort Study

Cancer survivor , TBD

3:00 PM: Break

3:15 PM: Breakout Session 1: Identify needs to be addressed in developing policy

Strand 1: Cancer Diagnosis and Treatment Needs

Strand 2: Policy Development Needs

Strand 3: Cultural Perspectives to Address

Strand 4: Biomedical Ethics Needs

Strand 5: Tribal Nations' Needs

5:30 PM: Reception (on site, sponsored by UNM Comprehensive Cancer Center)

Breakfast (provided by hotel or available for purchase at on-site cafe)

Session II: Alternatives and Solutions

8:00 AM: Moving Forward: Integration of Genomics into Healthcare

Moderator: Delegate Walter Phelps (Diné)

Cancer Treatment on Navajo, Lynette Bonar, RN, MBA, (Diné), CEO Tuba City Hospital

Child & Adolescent Development & Genetics, Allanceson J. Smith, MD (Diné), Psychiatry Fellow at the University of California at San Francisco

8:50 AM: Alaska Native People’s Perspectives on Biospecimens Use in Research & Genetic Research

Vanessa Hiratsuka, PhD (Diné) and Denise Dillard, PhD (Inupiaq Eskimo)

9:25 AM: NIH Commitment to improved Policies

David R. Wilson, PhD (Diné), National Institutes of Health

9:50 AM: Break

10:00 AM: Breakout Session 2: Recommendations for effective policies to meet needs.

Strand 1: Cancer Diagnosis and Treatment Recommendations

Strand 2: Policy Development Recommendations

Strand 3: Cultural Perspectives to Recommendations

Strand 4: Biomedical Ethics Recommendations

Strand 5: Tribal Nations' Recommendations

11:30 AM: Discussion and Next Steps

Moderator: Delegate Walter Phelps (Diné), 23^rd Navajo Nation Council

1:00 PM: Adjourn