In this month’s Member Spotlight, we are featuring Dr. Stephanie Russo Carroll (Rainie), an Ahtna woman from Alaska and a Citizen of the Native Village of Kluti-Kaah. Stephanie is a co-Chair for the International Indigenous Sovereignty Interest Group at RDA. She is the co-founder of the US Indigenous Data Sovereignty Network and a founding member of the Global Indigenous Data Alliance (GIDA). Stephanie holds several other positions, including Assistant Professor of Public Health, Associate Director for the Native Nations Institute at the Udall Center for Studies in Public Policy, and Co-Director for the Center for Indigenous Environmental Health Research, at the University of Arizona.
Stephanie first became involved in RDA during International Data Week 2016 in Denver, Colorado. Her colleague suggested she attend and present, and from that experience, Stephanie was inspired to form an RDA interest group to address Indigenous data sovereignty at an international level.
The International Indigenous Sovereignty Interest Group at RDA was the first global collaboration to focus on research data and principle -based work in this field. Indigenous data sovereignty is the right of Indigenous Peoples and nations to govern the collection, ownership, and application of their data. The concept has grown in intensity and scope over the past five years, both within RDA and internationally, evident in the formation of a GIDA in July 2019.
The “CARE Principles for Indigenous Data Governance,” soon to be launched by the RDA IG and GIDA is the result of these efforts. In November 2018, at International Data Week in Botswana, Stephanie and fifteen other individuals collaborated to develop the draft guidelines, which align alongside FAIR principles.
When asked about RDA’s impact on her and her work, she tells us that RDA has enabled her and her colleagues to expand their geographic reach, increase awareness of this topic, deepen their own connections, and grow new relationships in Africa, Latin American, and Asia. RDA has also fostered connections to allow IG members and other colleagues to, as co-Chair Tahu Kukutai coined such action, “marry deep disciplinary expertise, and principle-based activism and advocacy." One such output is Garrison et al. (2019) “Genomic Research through an Indigenous Lens: Understanding the Expectations” which both analyses nation state based research guidelines with respect to genomics research with Indigenous peoples and lays out principles for such work in the future.
To learn more about Indigenous Data Sovereignty, the CARE Principles, be sure to attend her group’s session at Plenary 14 in Helsinki and follow #BeFAIRandCARE.
Garrison, Nanibaa’, Maui Hudson, Leah Ballantine, Ibrahim Garba, Andrew Martinez, Maile Taualii, Laura Arbour, Nadine R. Caron, Stephanie Carroll Rainie. “Genomic Research through an Indigenous Lens: Understanding the Expectations.” Annual Review of Genomics and Human Genetics Volume 20(2019). https://www.annualreviews.org/doi/abs/10.1146/annurev-genom-083118-015434