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

IF 1.7 4区 哲学 Q2 ETHICS
Erika Blacksher, Susan Brown Trinidad, R Brian Woodbury, Scarlett E Hopkins, Erica L Woodahl, Bert B Boyer, Wylie Burke, Vanessa Hiratsuka
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引用次数: 1

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.

关于精准医学研究的部落商议:解决民主商议设计和评估中的多样性和不公平问题。
慎思民主参与在全球各地都被用来收集公众对有争议的集体问题的知情意见。然而,这种方法很少被用来召集专门来自土著社区的个人。使用这种方法让部落社区参与进来相对比较新颖,而且人们对多样性和不平等的关注也提出了重要的方法问题。我们介绍了一次为期 2.5 天的讨论的设计和质量成果,这次讨论征求了美国印第安人和阿拉斯加原住民 (AIAN) 领导人对精准医学研究 (PMR) 的潜在价值和道德行为的看法,PMR 是一种新兴的研究方法,它研究个体基因变异对健康的影响,同时研究与健康相关的实践、社会决定因素和环境暴露的变异。此次活动实现了一些关键目标,如建立关系和默契、跨站点学习、平等参与机会以及在存在分歧的情况下尊重参与者。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
3.50
自引率
7.70%
发文量
30
审稿时长
>12 weeks
期刊介绍: The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.
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