Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation

Erika Blacksher; Susan Brown Trinidad; R. Brian Woodbury; Scarlett E. Hopkins; Erica L. Woodahl; Bert B. Boyer; Wylie Burke; Vanessa Hiratsuka

doi:10.1177/15562646221081267

Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation

Erika Blacksher
, Susan Brown Trinidad
, R. Brian Woodbury
, Scarlett E. Hopkins
, Erica L. Woodahl
, Bert B. Boyer
, Wylie Burke
, Vanessa Hiratsuka

Research output: Contribution to journal › Article › peer-review

3 Scopus citations

Abstract

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.

Original language	English
Pages (from-to)	304-316
Number of pages	13
Journal	Journal of Empirical Research on Human Research Ethics
Volume	17
Issue number	3
DOIs	https://doi.org/10.1177/15562646221081267
State	Published - Jul 2022

Funding

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). 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). 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).

Funders	Funder number
Southcentral Foundation
5R01HG009500, P01GM116691

Keywords

American Indian and Alaska Native
community engagement
community-based participatory research
deliberative methods
democratic deliberation
ethics
precision medicine research

Access to Document

10.1177/15562646221081267

Cite this

Blacksher, E., Trinidad, S. B., Woodbury, R. B., Hopkins, S. E., Woodahl, E. L., Boyer, B. B., Burke, W., & Hiratsuka, V. (2022). Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation. Journal of Empirical Research on Human Research Ethics, 17(3), 304-316. https://doi.org/10.1177/15562646221081267

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abstract = "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.",

keywords = "American Indian and Alaska Native, community engagement, community-based participatory research, deliberative methods, democratic deliberation, ethics, precision medicine research",

author = "Erika Blacksher and Trinidad, \{Susan Brown\} and Woodbury, \{R. Brian\} and Hopkins, \{Scarlett E.\} and Woodahl, \{Erica L.\} and Boyer, \{Bert B.\} and Wylie Burke and Vanessa Hiratsuka",

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Blacksher, E, Trinidad, SB, Woodbury, RB, Hopkins, SE, Woodahl, EL, Boyer, BB, Burke, W & Hiratsuka, V 2022, 'Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation', Journal of Empirical Research on Human Research Ethics, vol. 17, no. 3, pp. 304-316. https://doi.org/10.1177/15562646221081267

Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation. / Blacksher, Erika; Trinidad, Susan Brown; Woodbury, R. Brian et al.
In: Journal of Empirical Research on Human Research Ethics, Vol. 17, No. 3, 07.2022, p. 304-316.

Research output: Contribution to journal › Article › peer-review

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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 - Publisher Copyright: © The Author(s) 2022.

PY - 2022/7

Y1 - 2022/7

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Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation

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