Models of Data Governance and Advancing Indigenous Genomic Data Sovereignty

While there has been considerable deliberation about ownership and stewardship of genomic data, as of yet, there does not exist a singular framework that encapsulates the current and future trajectory of how these data governance models can exist for Indigenous communities. We succinctly describe two case studies in the Akimel O'odham (Pima) communities that demonstrate the spectrum of data governance structures, in which tribal members have no input to complete control of data collection and usage. We describe (1) tribal-trust relationships, (2) non-tribal partnerships, and (3) tribally-driven models in context of an Indigenous people whose genomic and health data have been widely misused and exploited by outside researchers and the new narrative in which the O'odham have begun re-asserting their sovereignty in data domains.