#DATABACK: Indigenous Genomic Data Justice for Indigenous Peoples (May 1, Krystal Tsosie/Keolu Fox)

Speakers: Krystal Tsosie and Keolu Fox

Title: #DATABACK: Indigenous Genomic Data Justice for Indigenous Peoples

Abstract: Despite over a decade of efforts to increase diversity in genomic datasets, Indigenous peoples still constitute less than 1% of total representation. The answer, however, is not simply to recruit more Indigenous peoples because defaulting to old, problematic norms of broad consent can recreate cycles of data exploitation and extraction that benefit Indigenous peoples last. To move forward, we need to rethink data equity approaches that center principles of Indigenous genomic data sovereignty, which means employing new techniques in blockchaining and federated learning in addition to Indigenous-led bio-databanks. Hence, Drs. Tsosie and Fox are advocating for an Indigenous data justice approach that is truly responsive to genomic medicine and precision health innovation.

Bios: Krystal Tsosie, PHD, MPH, MA is an Indigenous (Diné/Navajo Nation) geneticist-bioethicist at Arizona State University’s School of Life Sciences and Center for Biology and Society. She co-founded the Native BioData Consortium, the first US Indigenous-led biobank and 501c3 nonprofit research institution. Much of her current research centers on ethical engagement with Indigenous communities in precision health through genetic epidemiology, public health, and computational approaches. She is also increasingly exploring machine learning approaches and using digital data tools to operationalize Indigenous genomic data sovereignty to foster Indigenous-led data solutions and build Tribal Nations’ capacity in technology, health, education, and local data economies.

Keolu Fox is the first Kānaka Maoli (Native Hawaiian) to receive a doctorate in genome sciences, and is an assistant professor at the University of California, San Diego, affiliated with the Department of Anthropology, the Global Health Program, the Halıcıoğlu Data Science Institute, the Climate Action Lab, the Design Lab, and the Indigenous Futures Institute. His work focuses on the connection between raw data as a resource and the emerging value of genomic health data from Indigenous communities. He has experience designing and engineering genome sequencing and editing technologies, and a decade of grassroots experience working with Indigenous partners to advance precision medicine. As an ENRICH Global Chair, Keolu will build a library for Indigenous health data in partnership with Indigenous communities. He will pilot a platform that will enable collecting and protecting Indigenous health data using Indigenous Data Sovereignty (IDS) principles, which provides a framework for allowing Indigenous communities themselves to manage and benefit from their own data. Ultimately, he hopes to create a replicable standard for Indigenous data sovereignty.