Table 1.
Topic | Panelists | Small group discussion questions |
---|---|---|
Opportunities panel As noted in the NHGRI Strategic Plan, “Genomic discoveries will increasingly advance the science of medicine in the coming decades, as important advances are made in developing improved diagnostics, more effective therapeutic strategies, an evidence-based approach for demonstrating clinical efficacy, and better decision-making tools for patients and providers.” This session aims to explore some of the opportunities that genomic medicine may bring to bear on Alaska Native health. |
Gail P. Jarvik, MD, PhD Head, Division of Medical Genetics The Arno G. Motulsky Endowed Chair in Medicine Professor of Genome Sciences University of Washington Medical Center Lucia Hindorff, PhD Program Director, National Human Genome Research Institute Esai Twitchell Jr. Board Member, Alaska Native Tribal Health Consortium |
1. What are examples of how genomics discoveries can benefit patients, families, and communities today? 2. What are examples of the application of genomics for communities and health-care systems that can serve as models for Alaska Native communities and health-care systems? 3. How can tribal leaders, researchers, and officials effectively gather input from Alaska Native community members, health providers of care to Alaska Native people, and those in leadership positions within Alaska Native tribes and tribal organization on the opportunities most important to Alaska Native peoples’ health? |
Challenges panel The potential for genomics research to improve health comes with several important considerations for individuals and communities. This session aims to explore some of those challenges, and to identify and explore potential barriers and critical conversations that must be addressed before genomics research proceeds. Issues around genomics research such as study design and timing, return of results, translation of findings into the clinic all present challenges that must be considered. |
Francine C. Gachupin, PhD, MPH Associate Professor, University of Arizona Jennifer Troyer, PhD Program Director, National Human Genome Research Institute Karen Caindec (Tlingit) Secretary/Treasurer and Director, Southcentral Foundation |
1. What are the top three obstacles to engagement with genomics research in Alaska Native communities? 2. What are the unique cultural considerations that researchers, partners, and funders should take into consideration when exploring genomics research with Alaska Native populations? 3. Are there lessons or best practices from other research studies or communities that can be applied to challenges faced in genomics research with Alaska Native people? |
Data-sharing approaches panel Advances in research can occur when large numbers of people share their health information and associated biological samples. Not only is it common practice for scientists to share their data and samples with other scientists, it is an expectation of NIH funded research that generates genomic data. This session aims to explore current examples of data sharing, concerns and considerations for Alaska native communities, and propose both policies and practices that can guide future research efforts. |
Bert Boyer, PhD Bob and Charlee Moore Endowed Professor Director, Alaska Native Health Research Department of Obstetrics and Gynecology Center for Developmental Health, Knight Cardiovascular Institute Oregon Health & Science University Sara Chandros Hull, PhD IRB and Bioethics Core Director, National Human Genome Research Institute Sonya Jooma, MA Policy Analyst, National Human Genome Research Institute Charlene Naulty, MS |
1. What guidelines should govern data sharing for Alaska Native people? 2. What are some concerns or tensions related to current data-sharing models for Alaska Native communities relative to ideal models and possible options to address them? 3. What are some models of data sharing that are appropriate for Alaska Native communities? |
Priorities panel Alaska Native tribes have a unique relationship with the US Government. Recognizing this, the NIH aims to foster respectful collaboration and informed decision-making in the research programs and opportunities in which Alaska Native people are involved. This session aims to discuss the areas of genomics research and kinds of programs focused on by tribal leaders and to identify research priorities that will advance health for Alaska Natives, taking into consideration the opportunities and challenges brought up in previous sessions. |
Wylie Burke, MD, PhD Professor, University of Washington Larry Brody, PhD Director, Genomics and Society Division, National Human Genome Research Institute Tina Woods, PhD (Aleut) Senior Director, Community Health Services, Alaska Native Tribal Health Consortium |
1. How can genomics research play an important part in the pursuit of better Alaska Native health? 2. What type of genomics projects could be pursued within Alaska Native tribes and health-care systems? 3. What priorities will require the most community engagement and endorsement? |
NHGRI National Human Genome Research Institute, NIH National Institutes of Health.