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推进美洲印第安人群体健康的五项使用大规模公开数据的建议:以青少年大脑与认知发展研究(ABCD 研究)为例。

Five recommendations for using large-scale publicly available data to advance health among American Indian peoples: the Adolescent Brain and Cognitive Development (ABCD) Study as an illustrative case.

机构信息

Laureate Institute for Brain Research, Tulsa, OK, USA.

Oxley School of Community Medicine, University of Tulsa, Tulsa, OK, USA.

出版信息

Neuropsychopharmacology. 2023 Jan;48(2):263-269. doi: 10.1038/s41386-022-01498-9. Epub 2022 Nov 16.

Abstract

American Indian and Alaska Native (AIAN) populations have suffered a history of exploitation and abuse within the context of mental health research and related fields. This history is rooted in assimilation policies, historical trauma, and cultural loss, and is promulgated through discrimination and disregard for traditional culture and community knowledge. In recognition of this history, it is imperative for researchers to utilize culturally sensitive approaches that consider the context of tribal communities to better address mental health issues for AIAN individuals. The public availability of data from large-scale studies creates both opportunities and challenges when studying mental health within AIAN populations. This manuscript has two goals; first, showcase an example of problematic use of Adolescent Brain Cognitive Development (ABCD) Study data to promulgate stereotypes about AIAN individuals and, second, in partnership with collaborators from Cherokee Nation, we provide five recommendations for utilizing data from publicly available datasets to advance health research in AIAN populations. Specifically, we argue for the consideration of (1) the heterogeneity of the communities represented, (2) the importance of focusing on AIAN health and well-being, (3) engagement of relevant communities and AIAN community leaders, (4) consideration of historical and ongoing injustices, and (5) engagement with AIAN regulatory agencies or review boards. These recommendations are founded on principles from broader indigenous research efforts emphasizing community-engaged research and principles of Indigenous Data Sovereignty and Governance.

摘要

美洲印第安人和阿拉斯加原住民(AIAN)人群在心理健康研究和相关领域中经历了历史上的剥削和虐待。这段历史源于同化政策、历史创伤和文化丧失,并通过歧视和忽视传统文化和社区知识得以传播。鉴于这一历史,研究人员必须采用考虑部落社区背景的文化敏感方法,以更好地解决 AIAN 个体的心理健康问题。大规模研究数据的公开可用性在研究 AIAN 人群的心理健康时既带来了机遇,也带来了挑战。本文有两个目标;首先,展示一个有问题地使用青少年大脑认知发展(ABCD)研究数据的例子,以传播有关 AIAN 个体的刻板印象;其次,与切罗基民族的合作者合作,我们提供了五个建议,用于利用公开可用数据集的数据来推进 AIAN 人群的健康研究。具体而言,我们主张考虑(1)所代表社区的异质性,(2)关注 AIAN 健康和福祉的重要性,(3)相关社区和 AIAN 社区领袖的参与,(4)考虑历史和持续的不公正,以及(5)与 AIAN 监管机构或审查委员会合作。这些建议基于更广泛的土著研究努力的原则,强调社区参与的研究和土著数据主权和治理原则。

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