A workshop considering genetic research and data collection with American Indian and Alaska Native people outside of Tribal jurisdiction
Year: 2026
Type: article
Abstract: Introduction: In the United States (US), Tribes are sovereign nations and have the right to oversee research conducted with Tribal citizens. However, it is unclear who should approve research protocols when data from American Indian and Alaska Native (AIAN) people are collected off Tribal lands. As genetic research continues to advance and transform the delivery of healthcare, equitable inclusion of AIAN people is necessary, but oversight of research needs clarity. Methods: We held a 3-day workshop with US thought leaders on genetic and other health research with AIAN people in urban areas to explore views and values on this issue and to discuss potential policy and practice solutions. Results: Thirty-six individuals attended. Solidarity surfaced as a foundational motivation for Tribal Nations to review research conducted with AIAN people, whether on Tribal lands or not. Understanding data from Indigenous perspectives was identified as a way to ensure appropriate AIAN community protections are in place. Three discrete areas to improve policy were suggested-Tribal, Academic Institution, and National-to protect AIAN people participating in research both on and off Tribal lands. Discussion: Researchers, whether Indigenous or not, must recognize Tribal sovereignty and operate in solidarity with the applicable and most appropriate ethical principles and regulations.
Source: Frontiers in Genetics
Authors: Julie A. Beans, Jessica W. Blanchard, Vanessa Y. Hiratsuka, Taiawagi Helton, Stephanie Russo Carroll, Denise A. Dillard, Raymond Orr, Francine C. Gachupin, Sara C. Hull, Rodney C. Haring, Nanibaa’ A. Garrison, Bobby Saunkeah, Krystal S. Tsosie, Aaron J. Goldenberg, David Wilson, Richard R. Sharp, Joseph Yracheta, Erika Blacksher, R. Brian Woodbury, Dalaki Livingston, Paul Spicer
Institutions: Southcentral Foundation, University of Oklahoma, University of Arizona, Washington State University, National Human Genome Research Institute, Roswell Park Comprehensive Cancer Center, University of California System, Chickasaw Nation, Arizona State University, Case Western Reserve University, University of North Dakota, Mayo Clinic, Johns Hopkins University, University of Kansas Medical Center, University of Utah
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,801
OpenAlex ID: W7204823912