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

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...

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Autores principales: White, Evan J., Demuth, Mara J., Wiglesworth, Andrea, Coser, Ashleigh D., Garrett, Brady A., Kominsky, Terrence K., Jernigan, Valarie, Thompson, Wesley K., Paulus, Martin, Aupperle, Robin
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9751109/
https://www.ncbi.nlm.nih.gov/pubmed/36385331
http://dx.doi.org/10.1038/s41386-022-01498-9
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author White, Evan J.
Demuth, Mara J.
Wiglesworth, Andrea
Coser, Ashleigh D.
Garrett, Brady A.
Kominsky, Terrence K.
Jernigan, Valarie
Thompson, Wesley K.
Paulus, Martin
Aupperle, Robin
author_facet White, Evan J.
Demuth, Mara J.
Wiglesworth, Andrea
Coser, Ashleigh D.
Garrett, Brady A.
Kominsky, Terrence K.
Jernigan, Valarie
Thompson, Wesley K.
Paulus, Martin
Aupperle, Robin
author_sort White, Evan J.
collection PubMed
description 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(SM) 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.
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spelling pubmed-97511092022-12-16 Five recommendations for using large-scale publicly available data to advance health among American Indian peoples: the Adolescent Brain and Cognitive Development (ABCD) Study(SM) as an illustrative case White, Evan J. Demuth, Mara J. Wiglesworth, Andrea Coser, Ashleigh D. Garrett, Brady A. Kominsky, Terrence K. Jernigan, Valarie Thompson, Wesley K. Paulus, Martin Aupperle, Robin Neuropsychopharmacology Review Article 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(SM) 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. Springer International Publishing 2022-11-16 2023-01 /pmc/articles/PMC9751109/ /pubmed/36385331 http://dx.doi.org/10.1038/s41386-022-01498-9 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) .
spellingShingle Review Article
White, Evan J.
Demuth, Mara J.
Wiglesworth, Andrea
Coser, Ashleigh D.
Garrett, Brady A.
Kominsky, Terrence K.
Jernigan, Valarie
Thompson, Wesley K.
Paulus, Martin
Aupperle, Robin
Five recommendations for using large-scale publicly available data to advance health among American Indian peoples: the Adolescent Brain and Cognitive Development (ABCD) Study(SM) as an illustrative case
title Five recommendations for using large-scale publicly available data to advance health among American Indian peoples: the Adolescent Brain and Cognitive Development (ABCD) Study(SM) as an illustrative case
title_full Five recommendations for using large-scale publicly available data to advance health among American Indian peoples: the Adolescent Brain and Cognitive Development (ABCD) Study(SM) as an illustrative case
title_fullStr Five recommendations for using large-scale publicly available data to advance health among American Indian peoples: the Adolescent Brain and Cognitive Development (ABCD) Study(SM) as an illustrative case
title_full_unstemmed Five recommendations for using large-scale publicly available data to advance health among American Indian peoples: the Adolescent Brain and Cognitive Development (ABCD) Study(SM) as an illustrative case
title_short Five recommendations for using large-scale publicly available data to advance health among American Indian peoples: the Adolescent Brain and Cognitive Development (ABCD) Study(SM) as an illustrative case
title_sort five recommendations for using large-scale publicly available data to advance health among american indian peoples: the adolescent brain and cognitive development (abcd) study(sm) as an illustrative case
topic Review Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9751109/
https://www.ncbi.nlm.nih.gov/pubmed/36385331
http://dx.doi.org/10.1038/s41386-022-01498-9
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