Exercising Sovereign Rights Over Data: A NSF Ethical and Responsible Research Project

02/23/21 02:25:pm


For a long time, research policy has been driven by crisis and scandal, from the Nuremberg Code, drafted after Nazi experiments on concentration camp prisoners during World War II, to the Belmont Principles, developed after exposure of a decades-long study by the US government on untreated syphilis in poor African American farmers living around Tuskegee, Alabama. By applying the concept of Indigenous data sovereignty, this project tries to correct this reactive posture by centering the legally recognized rights of Indigenous Peoples as self-determined collectives in developing policy for research that affects their communities.

–Ibrahim Garba

NNI's Stephanie Carroll (Ahtna) is Principal Investigator on a National Science Foundation (NSF) Ethical and Responsible Research (ER2) project that aims to strengthen the ability of Native nations to exercise sovereign rights over their data. Titled “An Indigenous data governance approach for enhancing ethical research policies and practices” (SES 2024269), the project draws on the concept of Indigenous data sovereignty, which is “the right of a nation to govern the collection, ownership, and application of its own data”. The project applies this framework to promote ethical uses of Indigenous data in academic research settings.

Launched in October 2020, the project surveys and analyzes current ethics standards for Indigenous data governance in law, policy, professional guidelines, and scholarly writings from across the CANZUS countries (Canada, Australia, New Zealand, United States). Findings from the analysis will guide efforts to explore gaps and opportunities in existing policies at US academic institutions through surveys and interviews. Project outcomes include resources such as policy recommendations, checklists, curricula, and published scholarship to be used by universities and other stakeholders to foster ethical uses of Indigenous data in research. An Advisory Board and two panels (Indigenous community constituents; data and ethics experts) support the project team with research strategy and analysis.

The project supports NNI’s mission of strengthening Indigenous governance capacities through the Institute’s ongoing work on Indigenous data sovereignty. Related projects include an analysis of tribal research laws from the perspective of Indigenous self-determination (“Indigenous self-determination in US research governance: an analysis of law, policy, and mechanisms”), and an examination of factors that foster ethical studies with Indigenous communities in federally funded research (“Supporting Indigenous scholars as data stewards and leaders in STEM”).

Project Leads (PI & Co-PIs)

STEPHANIE RUSSO CARROLL

(Ahtna-Native Village
of Kluti-Kaah)
NNI Associate Director; Assistant Professor, Mel and Enid Zuckerman College of Public Health
University of Arizona

JOHN HILDEBRAND

Professor,
Department of Neuroscience
University of Arizona

JANE BAMBAUER

Professor,
College of Law
University of Arizona

DOMINIQUE DAVID-CHAVEZ

(Arawak Taíno)
Postdoctoral Fellow, Department of Forest and Rangeland Stewardship, Colorado State University &
Native Nations Institute, University of Arizona

Project Support Staff

NOOR JOHNSON

Research Scientist,
National Snow and
Ice Data Center,
University of
Colorado Boulder

MERC FOX

Director,
CODATA Center of
Excellence in
Data for Society,
University of Arizona


IBRAHIM GARBA

(Karai-Karai)
Project Research Lead, College of Public Health; Native Nations Institute,
University of Arizona

DYNIKKA TSO

(Navajo Nation)
Student,
University of Arizona


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