# UA Research Project: Developing policy recommendations: Indigenous leader and individuals' perspectives on research, governance, and data sharing in Arizona

> **NIH NIH S06** · INTER TRIBAL COUNCIL OF ARIZONA, INC. · 2024 · $215,184

## Abstract

PROJECT SUMMARY: RESEARCH PROJECT 1 – Linking Research to Policy: Indigenous leaders’ and
individuals’ perspectives on research, governance, and data sharing in Arizona
Indigenous Peoples have specific and longstanding concerns regarding the collection, storage, and use of
specimens and data. Research on the perspectives of Indigenous individuals and communities on biobanking
in Aotearoa New Zealand, Canada, Alaska, and Hawaii has found many issues related to ethics, policy,
capacity, and a need for the recognition of Indigenous rights and interests for the governance of samples/data.
In a workshop with collaborators of a university-tribal partnership and a set of interviews of tribal health
professionals, policy experts, and tribal leaders, respondents themes included: importance of recognizing tribal
sovereignty; the use of tribal research review processes; the view among many tribes that knowledge and
intellectual property belong to the collective rather than to an individual; that scientific practices such as data
sharing may not be in a tribe’s best interest; and the ongoing need for richer and continued discussion of data
access, management, and sharing. Bolstering tribal data governance and enhancing other institutions
application of Indigenous data governance in their policies becomes increasingly important as biomedical and
genomics research moves toward broad data sharing policies. To address barriers that historically have
impeded ethical research practices, we need to better understand Indigenous norms for research, data, and
specimen governance. This research proposal connects the Inter Tribal Council of Arizona NARCH team with
researchers at the University of Arizona under the guidance of the NARCH CAB and an international expert-
practitioner Advisory Board. We apply an innovative Indigenous data governance framework to assess
individuals’ perceptions and to review tribal norms and practices. Our long-term goal is to enhance tribal data
governance in Arizona. Our research objective is to review tribal norms and practices for Indigenous specimen
and data governance, and to assess Indigenous leaders’ and individuals’ perspectives on research,
governance, and data sharing to inform the development of tribal data governance policies and practices in
Arizona. We hypothesize that respondents will identify the importance of recognizing tribes as sovereign
nations; that many will view knowledge and intellectual property as belonging to the collective group rather
than to discrete individuals; and that there is a need for policies, practices, and trainings on Indigenous data
governance topics such as data access, management, and sharing. We plan to accomplish our research
objective by pursuing the following three specific aims: Aim 1: Analyze existing documents and research on
tribal specimen/data storage policies. Aim 2: Assess Indigenous individuals’ opinions on (i) research, (ii)
governance, and (iii) data sharing. Aim 3: Assess tribal l...

## Key facts

- **NIH application ID:** 10922712
- **Project number:** 5S06GM142123-04
- **Recipient organization:** INTER TRIBAL COUNCIL OF ARIZONA, INC.
- **Principal Investigator:** Stephanie Russo Carroll
- **Activity code:** S06 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $215,184
- **Award type:** 5
- **Project period:** 2021-09-23 → 2026-07-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10922712

## Citation

> US National Institutes of Health, RePORTER application 10922712, UA Research Project: Developing policy recommendations: Indigenous leader and individuals' perspectives on research, governance, and data sharing in Arizona (5S06GM142123-04). Retrieved via AI Analytics 2026-05-29 from https://api.ai-analytics.org/grant/nih/10922712. Licensed CC0.

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