TY - JOUR
T1 - Five recommendations for using large-scale publicly available data to advance health among American Indian peoples
T2 - the Adolescent Brain and Cognitive Development (ABCD) StudySM as an illustrative case
AU - White, Evan J.
AU - Demuth, Mara J.
AU - Wiglesworth, Andrea
AU - Coser, Ashleigh D.
AU - Garrett, Brady A.
AU - Kominsky, Terrence K.
AU - Jernigan, Valarie
AU - Thompson, Wesley K.
AU - Paulus, Martin
AU - Aupperle, Robin
N1 - Funding Information:
This work was supported by the William K. Warren Foundation, NIMHD – K99MD015736 to EJW, and NIDA U01DA041089 to WKT, MP, and RA.
Publisher Copyright:
© 2022, The Author(s).
PY - 2023/1
Y1 - 2023/1
N2 - 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) StudySM 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.
AB - 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) StudySM 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.
UR - http://www.scopus.com/inward/record.url?scp=85141966383&partnerID=8YFLogxK
U2 - 10.1038/s41386-022-01498-9
DO - 10.1038/s41386-022-01498-9
M3 - Review article
C2 - 36385331
AN - SCOPUS:85141966383
SN - 0893-133X
VL - 48
SP - 263
EP - 269
JO - Neuropsychopharmacology
JF - Neuropsychopharmacology
IS - 2
ER -