Identifying Disparities in Health Outcomes and Mortality for American Indian and Alaska Native Populations Using Tribally Disaggregated Vital Statistics and Health Survey Data.

Objectives. To determine the impact of disaggregated mortality and health surveillance data on the ability to identify health disparities for American Indian and Alaska Native (AI/AN) subpopulations. Methods. We conducted a systematic review of reporting categories for AI/AN decedents on official death certificates for all 50 US states. Using public data from the 2017-2018 California Health Interview Survey (CHIS), we conducted bivariate and multivariate analyses to assess disparities in health conditions and outcomes for tribally enrolled and non‒tribally enrolled AI/AN persons compared with non-Hispanic Whites. Results. There was no standard for the collection of tribal enrollment data or AI/AN race on death certificates across all 50 states. There were stark differences in the incidence and prevalence of various health risk factors and chronic diseases for the tribally enrolled AI/AN subpopulation, non‒tribally enrolled AI/AN subpopulation, and non-Hispanic White comparison group. Conclusions. The collection of tribal enrollment data in vital statistics and health surveillance systems is necessary to identify and respond to health disparities among AI/AN subpopulations. These efforts must be conducted in partnership with tribal nations and consider Indigenous data sovereignty.

Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes.

Biomedical data are now organized in large-scale databases allowing researchers worldwide to access and utilize the data for new projects. As new technologies generate even larger amounts of data, data governance and data management are becoming pressing challenges. The FAIR principles (Findable, Accessible, Interoperable, and Reusable) were developed to facilitate data sharing. However, the Indigenous Data Sovereignty movement advocates for greater Indigenous control and oversight in order to share data on Indigenous Peoples' terms. This is especially true in the context of genetic research where Indigenous Peoples historically have been unethically exploited in the name of science. This article outlines the relationship between sovereignty and ethics in the context of data to describe the collective rights that Indigenous Peoples assert to increase control over their biomedical data. Then drawing on the CARE Principles for Indigenous Data Governance (Collective benefit, Authority to control, Responsibility, and Ethics), we explore how standards already set by Native nations in the United States, such as tribal research codes, provide direction for implementation of the CARE Principles to complement FAIR. A broader approach to policy and procedure regarding tribal participation in biomedical research is required and we make recommendations for tribes, institutions, and ethical practice.