Indigenizing Genomics and Advancing Indigenous Data Sovereignty

The ELSI Friday Forum was held on Friday, February 10, 2023.

Indigenous peoples have embodied genetic understanding within Indigenous knowledge systems long before encountering settler-science constructs. Mātauranga Māori was the dominant knowledge system in Aotearoa/New Zealand, with developed concepts of inheritance utilized in agriculture, social systems, family, and identity. The Diné (Navajo) people incorporated understanding of genetics through k’é or clanship systems and through artificial selection in cultivation practices. Through colonization, these Indigenous knowledge systems were displaced by western science, and Indigenous participation in scientific activity was minimized and devalued. Now, genomics is at the leading edge of decolonizing policy and cultural changes, rapidly moving to a model where research is led by and for Indigenous peoples. For instance, genomics research is increasingly led by Māori scientists, communities, and companies providing employment and skills growth, and mātauranga Māori of genomics is beginning to be taught in schools and universities. Furthermore, Indigenous data scientists are also advancing ethical frameworks, consent models, and using digital data tools such as artificial intelligence and machine learning approaches (e.g., blockchain and federated systems) to ensure genomics equitably benefits Indigenous people. The speakers will describe the development of Indigenous-led genomics in Aotearoa/New Zealand and the United States and consider its implications for ELSI research and practice related to genetics and genomics.

Panelist: Phillip Wilcox, BForSci (Hons), PhD (University of Otago)
Panelist: Krystal Tsosie, PhD, MPH, MA (Arizona State University, Native BioData Consortium)
Moderator: Josephine Johnston, LLB, MBHL (The Hastings Center, University of Otago)