7284University of Washington, Seattle, Washington, USA.
129032Southcentral Foundation, Anchorage, Alaska, USA.
J Empir Res Hum Res Ethics. 2022 Jul;17(3):304-316. doi: 10.1177/15562646221081267. Epub 2022 Feb 28.
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.
协商式民主参与在全球范围内被用于收集有关有争议的集体问题的知情公众意见。然而，很少有专门从原住民社区召集个人参与的情况。使用这种方法来召集部落社区，以及对多样性和不平等的关注，提出了一些重要的方法学问题。我们描述了为期两天半的协商的设计和质量结果，该协商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，它同时研究个体遗传变异与健康相关实践、社会决定因素和环境暴露的健康影响。该活动达到了一些关键目标，例如建立关系和融洽关系、跨地点学习、平等参与机会，以及在存在分歧的情况下参与者之间的尊重。
