Data Sovereignty for Health Equity: Ethical Issues in Data Governance in the Context of Research Conducted Among American Indians/Alaska Natives in Urban and Other Non-Reservation Settings

Introduction: National funding sources are adopting policies of open access to all data collected with public funds. Although these policies increase research transparency, federally-recognized American Indian/Alaska Native (AIAN) tribes have long argued that all data collected on their land is protected under laws of tribal sovereignty, under the rubric of the data sovereignty movement. Historical abuses including research abuses represent barriers to AIAN participation in research. Scholars of data sovereignty assert that all knowledge is not the property of all people, and by controlling their data use, tribes can control the narratives that are published about AIAN peoples. Many AIAN people reside for short or long periods off Tribal lands, including in urban areas. We provide the ethical foundation for extending the principles of data sovereignty to data obtained from AIANs who are not on reservation land.

Methods: Using four concepts that guide modern medical bioethics--justice, beneficence, nonmaleficence, and autonomy--we reviewed data governance standards maintained by the US federal government and by international human rights organizations. We assessed these standards for relevance to off-reservation AIAN people, comparing the strategies that different bodies have suggested for protecting research subjects and their data in the context of power and possible exploitation.

Results: Data obtained from AIAN individuals includes biologic specimens as well as self-reported knowledge, perceptions, and behaviors. Collectively-held data such as traditional knowledge and cultural and spiritual practices may also be obtained from individual tribal citizens. Federal and state funding and population assessment structures which treat AIANs as racial/ethnic minorities may encourage researchers to disregard AIAN peoples' rights as sovereign citizens. IRBs do not protect collective rights. Mechanisms for protecting tribal data include data use agreements, tribal human subjects review boards, tribal health boards, and other tools that mediate an unethical pattern of exploitation and misrepresentation through data collection and dissemination without appropriate collaboration and review. These mechanisms and underlying principles may be adopted or adapted in the context of off-reservation AIAN research.

Conclusions: Through controlling the use of their data, many tribes may strike a balance between disappearing into the “other” category and being misrepresented, stereotyped, or exploited through health research. Ethical data governance practices both on and off reservation can increase AIAN participation in preventive interventions which can benefit AIAN individuals, families, and tribes and improve the validity and reliability of results.