UC San Diego

American Indian and Alaska Native (AI/AN) governments can use Indigenous Data Sovereignty (IDS) to regulate the collection, management, and access to data generated by their members. However, it is difficult to exercise IDS when data are managed by external partners, especially in open-data environments that use machine learning algorithms. Tribes have cautioned that in this of era of rapidly-generated data (“big data”), protections are needed to safeguard privacy specific to their people and cultures. This dissertation uses IDS and its principles detailing the right of Indigenous communities to govern their “collection,” “management,” and “application of data” as a theoretical underpinning for three studies examining the application and use of IDS in public health practice, digital technology operation, and research conduct. The dissertation presents findings from: (1) a systematic review of literature describing IDS frameworks and identifying barriers and facilitators to IDS (n = 41 articles); (2) a multi-platform social media listening study focused on the representation of traditional AI/AN tobacco use compared to retail tobacco advertising and use; and (3) a case study on stakeholder engagement to design a privacy-preserving, record-keeping system (“blockchain”) protecting AI/AN genomic data and formulate a proposed framework to incorporate IDS into the design and operation of digital technologies. The systematic review of IDS literature details how IDS is operationalized in public health systems and research practice. Technologies with IDS applications include biobanking, genomics, machine learning, blockchain, and biosensor feedback. The social media surveillance (“infodemiology”) study on traditional tobacco content themes on social media found that users interacting with the hashtag #TraditionalTobacco were far more likely to see recreational tobacco use and advertising than they were to see traditional AI/AN uses of tobacco, raising questions about the need for more AI/AN-focused interventions. Finally, the case study on stakeholder engagement to design a blockchain system presents a process for establishing partnerships respecting IDS and an implementation science framework that might have utility in AI/AN contexts.

The findings presented have the potential to make public health practice more responsive to the priorities of AI/AN communities, and inform policy and program development at all levels of government.