ELSIcon2024 Plenary: Indigenous Data Sovereignty: Finding Pathways for Equitable Benefit Sharing from Genomic Science

ELSIcon2024 • Plenary • June 10, 2024 

Authors: Maui Hudson - University of Waikato, Te Pua Wananga ki te Ao (New Zealand)

Indigenous Data Sovereignty (IDS) represents a vital paradigm shift in the realm of genomic science, offering a framework that respects the inherent rights and unique cultural contexts of Indigenous communities. This talk will explore pathways to achieving equitable benefits from genomic science by engaging with the principles of IDS. Central to this approach is the recognition of Indigenous sovereignty, the establishment of robust data governance structures, preserving cultural values, and fostering greater community participation in responsible research and innovation. By expanding on concepts of data ownership and informed consent to embed indigenous provenance and attribution throughout data ecosystems we can create opportunities for more equitable benefit-sharing arrangements. The secure storage of genomic data, appropriate metadata and labeling, long-term partnerships between communities and researchers, and advocacy for policy reform further underscore the importance of IDS in developing pathways for Indigenous communities to receive equitable benefits from genomic science.

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