Deliberations with American Indian and Alaska Native People about the Ethics of Genomics: An Adapted Model of Deliberation Used with Three Tribal Communities in the United States.
Erika Blacksher, Vanessa Y Hiratsuka, Jessica W Blanchard, Justin R Lund, Justin Reedy, Julie A Beans, Bobby Saunkeah, Micheal Peercy, Christie Byars, Joseph Yracheta, Krystal S Tsosie, Marcia O'Leary, Guthrie Ducheneaux, Paul G Spicer
Author Information
Erika Blacksher: Department of Bioethics and Humanities, University of Washington, Seattle, Washington, USA. ORCID
Vanessa Y Hiratsuka: South Central Foundation Research Department, Anchorage, Alaska, USA.
Jessica W Blanchard: Center for Applied Social Research, University of Oklahoma, Norman, Oklahoma, USA.
Justin R Lund: Department of Anthropology, University of Oklahoma, Norman, Oklahoma, USA.
Justin Reedy: Department of Communication, University of Oklahoma, Norman, Oklahoma, USA. ORCID
Julie A Beans: South Central Foundation Research Department, Anchorage, Alaska, USA. ORCID
Bobby Saunkeah: Chickasaw Nation Department of Health, Division of Research and Public Health, Ada, Oklahoma, USA.
Micheal Peercy: Chickasaw Nation Department of Health, Division of Research and Public Health, Ada, Oklahoma, USA.
Christie Byars: Chickasaw Nation Department of Health, Division of Research and Public Health, Ada, Oklahoma, USA.
Joseph Yracheta: Missouri Breaks Industries, Inc, Research Department, Eagle Butte, South Dakota, USA. ORCID
Krystal S Tsosie: Missouri Breaks Industries, Inc, Research Department, Eagle Butte, South Dakota, USA.
Marcia O'Leary: Missouri Breaks Industries, Inc, Research Department, Eagle Butte, South Dakota, USA.
Guthrie Ducheneaux: Missouri Breaks Industries, Inc, Research Department, Eagle Butte, South Dakota, USA.
Paul G Spicer: Department of Anthropology, University of Oklahoma, Norman, Oklahoma, USA.
BACKGROUND: This paper describes the design, implementation, and process outcomes from three public deliberations held in three tribal communities. Although increasingly used around the globe to address collective challenges, our study is among the first to adapt public deliberation for use with exclusively Indigenous populations. In question was how to design deliberations for tribal communities and whether this adapted model would achieve key deliberative goals and be well received. METHODS: We adapted democratic deliberation, an approach to stakeholder engagement, for use with three tribal communities to respect tribal values and customs. Public deliberation convenes people from diverse backgrounds in reasoned reflection and dialogue in search of collective solutions. The deliberation planning process and design were informed by frameworks of enclave deliberation and community-based participatory research, which share key egalitarian values. The deliberations were collaboratively designed with tribal leadership and extensive partner input and involvement in the deliberations. Each deliberation posed different, locally relevant questions about genomic research, but used the same deliberation structure and measures to gauge the quality and experience of deliberation. RESULTS: A total of 52 individuals participated in the deliberations across all three sites. Deliberants were balanced in gender, spanned decades in age, and were diverse in educational attainment and exposure to health research. Overall, the deliberations were positively evaluated. Participant perceptions and external observer datasets depict three deliberations that offered intensive conversation experiences in which participants learned from one another, reported feeling respected and connected to one another, and endorsed this intensive form of engagement. CONCLUSION: The adapted deliberations achieved key deliberative goals and were generally well received. Limitations of the study are described.
