Literature DB >> 35225705

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

Erika Blacksher1, Susan Brown Trinidad1, R Brian Woodbury2, Scarlett E Hopkins3, Erica L Woodahl4, Bert B Boyer3, Wylie Burke1, Vanessa Hiratsuka5.   

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.

Entities:  

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

Mesh:

Year:  2022        PMID: 35225705      PMCID: PMC9173705          DOI: 10.1177/15562646221081267

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.978


  47 in total

1.  Deliberation: obtaining informed input from a diverse public.

Authors:  Grace Wang; Marthe Gold; Joanna Siegel; Shoshanna Sofaer; Manshu Yang; Coretta Mallery; Kristin L Carman
Journal:  J Health Care Poor Underserved       Date:  2015-02

2.  Effectiveness of public deliberation methods for gathering input on issues in healthcare: Results from a randomized trial.

Authors:  Kristin L Carman; Coretta Mallery; Maureen Maurer; Grace Wang; Steve Garfinkel; Manshu Yang; Dierdre Gilmore; Amy Windham; Marjorie Ginsburg; Shoshanna Sofaer; Marthe Gold; Ela Pathak-Sen; Todd Davies; Joanna Siegel; Rikki Mangrum; Jessica Fernandez; Jennifer Richmond; James Fishkin; Alice Siu Chao
Journal:  Soc Sci Med       Date:  2015-03-14       Impact factor: 4.634

3.  Challenges in Engaging and Disseminating Health Research Results Among Alaska Native and American Indian People in Southcentral Alaska.

Authors:  Denise A Dillard; Karen Caindec; Lisa G Dirks; Vanessa Y Hiratsuka
Journal:  Am Indian Alsk Native Ment Health Res       Date:  2018

4.  Community Dissemination in a Tribal Health Setting: A Pharmacogenetics Case Study.

Authors:  Julie A Beans; Vanessa Y Hiratsuka; Charlene R Apok; Karen Caindec; Denise A Dillard; Renee F Robinson
Journal:  Am Indian Alsk Native Ment Health Res       Date:  2018

5.  Ethical issues in developing pharmacogenetic research partnerships with American Indigenous communities.

Authors:  B B Boyer; D Dillard; E L Woodahl; R Whitener; K E Thummel; W Burke
Journal:  Clin Pharmacol Ther       Date:  2011-03       Impact factor: 6.875

6.  Patient and family engagement: a framework for understanding the elements and developing interventions and policies.

Authors:  Kristin L Carman; Pam Dardess; Maureen Maurer; Shoshanna Sofaer; Karen Adams; Christine Bechtel; Jennifer Sweeney
Journal:  Health Aff (Millwood)       Date:  2013-02       Impact factor: 6.301

7.  Partnership with the Confederated Salish and Kootenai Tribes: Establishing an Advisory Committee for Pharmacogenetic Research.

Authors:  Chelsea T Morales; LeeAnna I Muzquiz; Kevin Howlett; Bernie Azure; Brenda Bodnar; Vernon Finley; Tony Incashola; Cheryl Mathias; Cindi Laukes; Patrick Beatty; Wylie Burke; Mark A Pershouse; Elizabeth A Putnam; Susan Brown Trinidad; Rosalina James; Erica L Woodahl
Journal:  Prog Community Health Partnersh       Date:  2016

8.  Pharmacogenetics in American Indian populations: analysis of CYP2D6, CYP3A4, CYP3A5, and CYP2C9 in the Confederated Salish and Kootenai Tribes.

Authors:  Alison Fohner; LeeAnna I Muzquiz; Melissa A Austin; Andrea Gaedigk; Adam Gordon; Timothy Thornton; Mark J Rieder; Mark A Pershouse; Elizabeth A Putnam; Kevin Howlett; Patrick Beatty; Kenneth E Thummel; Erica L Woodahl
Journal:  Pharmacogenet Genomics       Date:  2013-08       Impact factor: 2.089

9.  Community-based dialogue: engaging communities of color in the United states' genetics policy conversation.

Authors:  Vence L Bonham; Toby Citrin; Stephen M Modell; Tené Hamilton Franklin; Esther W B Bleicher; Leonard M Fleck
Journal:  J Health Polit Policy Law       Date:  2009-06       Impact factor: 2.265

10.  Deliberative democracy and historical perspectives on American Indian/Alaska native political decision-making practices.

Authors:  Justin Reedy; Raymond Orr; Paul Spicer; Jessica W Blanchard; Vanessa Y Hiratsuka; Terry S Ketchum; Bobby Saunkeah; Kyle Wark; R Brian Woodbury
Journal:  Humanit Soc Sci Commun       Date:  2020-06-24
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