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与美洲印第安人和阿拉斯加原住民就基因组学伦理进行的审议:在美国三个部落社区使用的审议模型的改编版。

Deliberations with American Indian and Alaska Native People about the Ethics of Genomics: An Adapted Model of Deliberation Used with Three Tribal Communities in the United States.

机构信息

Department of Bioethics and Humanities, University of Washington, Seattle, Washington, USA.

South Central Foundation Research Department, Anchorage, Alaska, USA.

出版信息

AJOB Empir Bioeth. 2021 Jul-Sep;12(3):164-178. doi: 10.1080/23294515.2021.1925775. Epub 2021 Jun 14.

Abstract

BACKGROUND

This paper describes the design, implementation, and process outcomes from three public deliberations held in three tribal communities. Although increasingly used around the globe to address collective challenges, our study is among the first to adapt public deliberation for use with exclusively Indigenous populations. In question was how to design deliberations for tribal communities and whether this adapted model would achieve key deliberative goals and be well received.

METHODS

We adapted democratic deliberation, an approach to stakeholder engagement, for use with three tribal communities to respect tribal values and customs. Public deliberation convenes people from diverse backgrounds in reasoned reflection and dialogue in search of collective solutions. The deliberation planning process and design were informed by frameworks of enclave deliberation and community-based participatory research, which share key egalitarian values. The deliberations were collaboratively designed with tribal leadership and extensive partner input and involvement in the deliberations. Each deliberation posed different, locally relevant questions about genomic research, but used the same deliberation structure and measures to gauge the quality and experience of deliberation.

RESULTS

A total of 52 individuals participated in the deliberations across all three sites. Deliberants were balanced in gender, spanned decades in age, and were diverse in educational attainment and exposure to health research. Overall, the deliberations were positively evaluated. Participant perceptions and external observer datasets depict three deliberations that offered intensive conversation experiences in which participants learned from one another, reported feeling respected and connected to one another, and endorsed this intensive form of engagement.

CONCLUSION

The adapted deliberations achieved key deliberative goals and were generally well received. Limitations of the study are described.

摘要

背景

本文描述了在三个部落社区中进行的三次公开审议的设计、实施和过程结果。尽管在全球范围内越来越多地被用于解决集体挑战,但我们的研究是首批专门为原住民群体改编公开审议的研究之一。问题是如何为部落社区设计审议,以及这种改编的模式是否能够实现关键的审议目标并得到广泛接受。

方法

我们改编了民主审议,这是一种利益相关者参与的方法,适用于三个部落社区,以尊重部落的价值观和习俗。公开审议将来自不同背景的人召集在一起,进行理性的反思和对话,以寻找集体解决方案。审议的规划过程和设计受到飞地审议和基于社区的参与性研究框架的启发,这些框架共享关键的平等价值观。审议是与部落领导层以及广泛的合作伙伴共同设计的,他们在审议过程中投入了大量的意见和参与。每次审议都提出了关于基因组研究的不同、与当地相关的问题,但使用了相同的审议结构和措施来衡量审议的质量和体验。

结果

共有 52 人参加了三个地点的审议。审议者在性别上是平衡的,年龄跨度几十年,在教育程度和对健康研究的接触方面也存在多样性。总的来说,审议得到了积极的评价。参与者的看法和外部观察员数据集描绘了三次审议,这些审议提供了深入的对话体验,参与者相互学习,报告感到受到尊重和相互联系,并认可这种密集的参与形式。

结论

改编后的审议实现了关键的审议目标,并得到了广泛的认可。研究的局限性也作了描述。

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