TY - JOUR
T1 - Tribal Deliberations about Precision Medicine Research
T2 - Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation
AU - Blacksher, Erika
AU - Trinidad, Susan Brown
AU - Woodbury, R. Brian
AU - Hopkins, Scarlett E.
AU - Woodahl, Erica L.
AU - Boyer, Bert B.
AU - Burke, Wylie
AU - Hiratsuka, Vanessa
N1 - Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Human Genome Research Institute, National Institute for General Medical Sciences, (grant number 7R01HG009500, 5P01GM116691).
Funding Information:
The authors have many to thank, including the Tribal review bodies that approved this study; the Southcentral Foundation, which hosted the event; and the deliberants, who took time away from their families and responsibilities to help us with this project, including Michelle Baker, Agnes Baptiste, Brenda Bodnar, Karen Caindec, Dennis Clairmont, Myrna DuMontier, Donna Galbreath, Charmel Gillin, David Harrison, Henry Hunter, Sr., Lloyd Irvine, Patricia Kelly, Steve Lozar, Jamie Lozeau, Henry Lupie, James Nicorai, Bobbi Outten, Ileen Sylvester, Ronald Trahan, Sr., Susie Walters. One deliberant remains anonymous. This work was supported by the National Human Genome Research Institute (5R01HG009500) and the National Institute for General Medical Sciences (5P01GM116691). The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Human Genome Research Institute, National Institute for General Medical Sciences, (grant number 7R01HG009500, 5P01GM116691).
Funding Information:
The authors have many to thank, including the Tribal review bodies that approved this study; the Southcentral Foundation, which hosted the event; and the deliberants, who took time away from their families and responsibilities to help us with this project, including Michelle Baker, Agnes Baptiste, Brenda Bodnar, Karen Caindec, Dennis Clairmont, Myrna DuMontier, Donna Galbreath, Charmel Gillin, David Harrison, Henry Hunter, Sr., Lloyd Irvine, Patricia Kelly, Steve Lozar, Jamie Lozeau, Henry Lupie, James Nicorai, Bobbi Outten, Ileen Sylvester, Ronald Trahan, Sr., Susie Walters. One deliberant remains anonymous. This work was supported by the National Human Genome Research Institute (5R01HG009500) and the National Institute for General Medical Sciences (5P01GM116691).
Publisher Copyright:
© The Author(s) 2022.
PY - 2022/7
Y1 - 2022/7
N2 - Deliberative democratic engagement is used around the globe to gather informed public input on contentious collective questions. Yet, rarely has it been used to convene individuals exclusively from Indigenous communities. The relative novelty of using this approach to engage tribal communities and concerns about diversity and inequities raise important methodological questions. We describe the design and quality outcomes for a 2.5-day deliberation that elicited views of American Indian and Alaska Native (AIAN) leaders about the potential value and ethical conduct of precision medicine research (PMR), an emerging approach to research that investigates the health effects of individual genetic variation in tandem with variation in health-relevant practices, social determinants, and environmental exposures. The event met key goals, such as relationship and rapport formation, cross-site learning, equality of opportunity to participate, and respect among participants in the context of disagreement.
AB - Deliberative democratic engagement is used around the globe to gather informed public input on contentious collective questions. Yet, rarely has it been used to convene individuals exclusively from Indigenous communities. The relative novelty of using this approach to engage tribal communities and concerns about diversity and inequities raise important methodological questions. We describe the design and quality outcomes for a 2.5-day deliberation that elicited views of American Indian and Alaska Native (AIAN) leaders about the potential value and ethical conduct of precision medicine research (PMR), an emerging approach to research that investigates the health effects of individual genetic variation in tandem with variation in health-relevant practices, social determinants, and environmental exposures. The event met key goals, such as relationship and rapport formation, cross-site learning, equality of opportunity to participate, and respect among participants in the context of disagreement.
KW - American Indian and Alaska Native
KW - community engagement
KW - community-based participatory research
KW - deliberative methods
KW - democratic deliberation
KW - ethics
KW - precision medicine research
UR - http://www.scopus.com/inward/record.url?scp=85125624355&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85125624355&partnerID=8YFLogxK
U2 - 10.1177/15562646221081267
DO - 10.1177/15562646221081267
M3 - Article
C2 - 35225705
AN - SCOPUS:85125624355
SN - 1556-2646
VL - 17
SP - 304
EP - 316
JO - Journal of Empirical Research on Human Research Ethics
JF - Journal of Empirical Research on Human Research Ethics
IS - 3
ER -