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

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) 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.

Striatal hypoactivation during monetary loss anticipation in individuals with substance use disorders in a heterogenous urban American Indian sample

“…This study represents an important early step in a much broader process of engaging Indigenous communities with neuroscience to address persistent and widening gaps in SUD and related-health problems ( Qeadan et al, 2022 ; Wendt et al, 2021 ). In addition, replications of these findings in other populations would advance prior evidence of similar processing between AIs and general populations in SUD research ( Evans-Campbell et al, 2006 ; Robins et al, 1997; White et al, 2022 ).…”

“…This is one of the first neuroimaging studies to focus on AIs with SUD who are predominantly under/misrepresented within psychophysiological literature ( Jordan et al, 2021 ; Kading et al, 2015 ; White et al, 2022 ) and may indicate characteristics of brain activation in SUD within AI communities, where activation to loss processing may be more salient for AIs who experience greater risk and exposure to substance use ( Swaim and Stanley, 2018 ; Walls et al, 2021; Whitbeck et al, 2014 ); however, sample characteristics including drug of choice and abstinence duration may impact these findings. Future work considering these dynamics may lead to more consistent SUD findings in AI and/or general populations (Cassidy et al, 2021; Nestor et al, 2020 ).…”

“…Future work considering these dynamics may lead to more consistent SUD findings in AI and/or general populations (Cassidy et al, 2021; Nestor et al, 2020 ). Future research is also needed to delineate potential moderators of this pattern of striatal functioning in AI populations, like cultural factors that may buffer SUD risk in AIs (Beals et al, 2003, 2005 ; White et al, 2022 ). Such work would serve as a foundation for intervention and prevention research targeting loss aversion as a potential mechanism of change, which may be more impactful if culturally attuned.…”

“We controlled for race and ethnicity...” Recommendations for the responsible use and communication of race and ethnicity in neuroimaging research

“…Yet another factor that can contribute to a bias in study populations and their responses may be related to non-random patterns of missingness for particular populations, which may be due to study demands, the language of study materials, or congruency between participant culture and research culture. Even in the case of a representative sample, the sample sizes for some minoritized populations may not be enough to justify a stratified sample, possibly resulting in erroneous and harmful findings (see 43 for examples of problematic uses of data about American Indian peoples, and recommendations for utilizing data to advance health among American Indian and Alaska Native populations). In some cases, the sample sizes might be small enough that reporting them might risk participant identification.…”

Centering Data Sovereignty, Tribal Values, and Practices for Equity in American Indian and Alaska Native Public Health Systems

“…[27][28][29] The Collective Benefit, Authority to Control, Responsibility, and Ethics (CARE) principles are a framework for centering Indigenous data sovereignty that works across multiple settings to support joint decision-making by Indigenous and non-Indigenous public health authorities. 30 White et al 31…”