Podcast: Ethical Use of Public Data in American Indian Health Research

4/8/2025

This paper by White et al. (2022) discusses ethical considerations and best practices for using large-scale, publicly available datasets, such as the ABCD Study®, for research on American Indian and Alaska Native (AIAN) populations, who have a history of exploitation in mental health research1 .... The authors aim to highlight problematic data use that could perpetuate stereotypes and offer five recommendations, developed with the Cherokee Nation, to promote health research in AIAN communities. The paper critiques a study by Assari (2020) as an example of inappropriate interpretation of ABCD Study® data. The authors identify three main issues: lack of appropriate theoretical rationale, as Assari's model on protective factors was not validated with AIAN communities and ignored existing research; inappropriate interpretation of statistical analyses, including an imbalanced sample size, unreliable mean estimates due to small cell sizes, aggregation of the heterogeneous AIAN/NHPI group, and misinterpreting associations as causal effects; and lack of community engagement or regulatory review. The authors, in partnership with the Cherokee Nation, propose five recommendations for researchers using publicly available AIAN participant data:

(1) Consider heterogeneity of large-scale AIAN samples: Recognize the diverse cultures, histories, languages, and traditions among the 574 federally recognized AIAN nations to avoid overgeneralization.

(2) Prioritize advancement of health and well-being in AIAN communities: Ensure research benefits these communities and consider its impact on public policy and perceptions. Study design should include elements that increase resources and sustainability for tribal research collaborators and build AIAN communities' capacity to engage with publicly available data.

(3) Facilitate community engagement at each stage of the research process: Involve tribal communities early to ensure research relevance, incorporate community knowledge in interpretations, and disseminate findings beyond scientific outlets with bidirectional information sharing.

(4) Consider the impact of social injustices on study variables: Acknowledge the effects of colonization, historical trauma, intergenerational trauma, and discrimination on AIAN mental health and contextualize findings accordingly, especially with biological data as race is not a biological or causal variable.

(5) Engage with tribal research regulatory infrastructure: Comply with tribal regulations (e.g., IRBs, tribal councils) and consult with regulatory bodies for oversight. Future studies should aim to establish coordinated regulatory bodies informed by Indigenous Data Governance (IDG) and Indigenous Data Sovereignty (IDS) principles.
The authors emphasize that both data generators and users share the responsibility for applying these recommendations, along with research reviewers, editors, and publishers. These recommendations are based on principles of community-engaged research and Indigenous Data Sovereignty and Governance, driven by the ethical principle of solidarity. The paper concludes that ethical and culturally appropriate research is crucial to advance understanding of AIAN health and well-being using large-scale publicly available data.