Development of a Blockchain-Based Platform to Enable Indigenous Data Sovereignty and Shared Research Participation...

Area of Science:

• Health Informatics
• Computer Science
• Indigenous Studies

Background:

• Historical data misuse necessitates Indigenous Data Sovereignty (IDS) principles in research and technology.
• Indigenous health data requires ethical collection, storage, and usage practices.

Purpose of the Study:

• To explore blockchain technology's application in facilitating Indigenous-led research collaboration.
• To investigate the compatibility of blockchain with Indigenous Data Sovereignty (IDS) principles.

Main Methods:

• Partnership with Native BioData Consortium (NativeBio) and formation of a Community Advisory Board (CAB).
• Iterative prototyping and co-design of a blockchain platform using Ethereum.
• Incorporation of a community-based participatory research (CBPR) use case aligned with IDS principles.

Main Results:

• Development of a "b-IDS" proof-of-concept (POC) blockchain platform with three core components.
• Demonstrated potential for blockchain to operationalize IDS through proactive Indigenous partner engagement.
• POC design informed by direct engagement with NativeBio and the CAB.

Conclusions:

• Blockchain technology offers advantages for data governance, enabling oversight, shared decision-making, and consent.
• Proactive engagement with Indigenous partners is crucial for operationalizing IDS via blockchain.
• Future work should integrate additional research practices and ethics frameworks for broader application.