Tucson Standard

Researchers at the University of Arizona Mel and Enid Zuckerman College of Public Health and the U of A Native Nations Institute are establishing a framework to protect Indigenous data collection and usage globally, thanks to a $1.5 million grant from the National Science Foundation.

For years, mistrust has surrounded the data collected by researchers, healthcare providers, and government agencies from Indigenous communities. Concerns have been raised about ownership, profit, and usage of this data. The grant will enable researchers to collaborate with colleagues from the University of California, Los Angeles, and New York University to develop policies, practices, and norms that place Indigenous peoples as authorities over their data.

"What we've seen from tribal governments is that being able to work and connect with other entities internationally and connect over some of the same experiences has been beneficial," said principal investigator Stephanie Russo Carroll. She emphasized that this grant provides unprecedented funding for linking existing research and policy-focused networks toward advancing Indigenous data sovereignty.

Ibrahim Garba, a co-investigator on the project, highlighted the importance of these connections in an emerging conversation involving multiple players handling various types of Indigenous data across different contexts.

The project aims to bring together scholars specializing in Indigenous data sovereignty, law, policy, information management, data governance, genomic sciences, and technology history. These experts will create training resources for universities, funders, federal agencies, publishers, and other research institutions.

Carroll will lead an alliance among 12 global Indigenous data sovereignty networks. These include the Global Indigenous Data Alliance and six networks representing regions such as the United States, Canada, Australia, New Zealand, and northern Europe’s Sapmi region.

Additionally included are five international Indigenous data governance research collectives: Center for Braiding Indigenous Knowledges and Science; Equity for Indigenous Research and Innovation Coordinating Hub; Collaboratory for Indigenous Data Governance; Local Contexts; Ngā Pae Te Māramatanga.

A web portal named the Indigenous DataSET (Sovereignty and Ethics Training) Hub will be created to host training materials meant to guide researchers. The project also plans to align scientific research with local standards for Indigenous data governance while supporting scholars in this field globally.

These activities aim to disrupt current data practices by revealing biases in collection methods. The ultimate goal is to advance science in service to communities. Carroll previously worked on creating CARE Principles for Indigenous Data Governance which advocate for collective benefit from data use under ethical guidelines driven by tribal control.

"What we've been noticing over the past six months or so is an explosion in tribal departments or tribes at large contemplating and beginning to draft tribal laws around data," Carroll added.

Other co-investigators include Nanibaá Garrison from UCLA and Jane Anderson from NYU. This research is supported by NSF's Office of International Science & Engineering under Award No. 2412372.