Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review

Abstract

There is increasing potential to improve the research and reporting on the health and wellbeing of Indigenous and Tribal peoples through the collection and (re)use of population-level data. As the data economy grows and the value of data increases, the optimization of data pertaining to Indigenous peoples requires governance that defines who makes decisions on behalf of whom and how these data can and should be used. An international a priori PROSPERO (#CRD42020170033) systematic review was undertaken to examine the health research literature to (1) identify, describe, and synthesize definitions and principles; (2) identify and describe data governance frameworks; and (3) identify, describe, and synthesize processes, policies and practices used in Indigenous Data Governance (ID-GOV). Sixty-eight articles were included in the review that found five components that require consideration in the governance of health research data pertaining to Indigenous people. This included (1) Indigenous governance; (2) institutional ethics; (3) socio-political dynamics; (4) data management and data stewardship; and (5) overarching influences. This review provides the first systematic international review of ID-GOV that could potentially be used in a range of governance strategies moving forward in health research.

Data Sovereignty in Community-Based Environmental Monitoring: Toward Equitable Environmental Data Governance

“…Indigenous data sovereignty (IDS) has been defined as “Indigenous people's rights to control data from and about their communities and lands, articulating both individual and collective rights to data access and to privacy” (Carroll et al 2021 : 300). Discussions on IDS have gained traction in genomics (e.g., Garrison et al 2019 , Hudson et al 2020 ), health (e.g., Schnarch 2004 , Griffiths et al 2021 ), and ethnobiology (e.g., Fernández-Llamazares et al 2021 , McAlvay et al 2021 ) and are emerging in community-based environmental monitoring (Johnson et al 2021 ). Some institutional review boards are proposing mechanisms to advance Indigenous research ethics and data sovereignty in research (e.g., Nicholas 2022 ), but simultaneously, many Indigenous organizations are also developing ethical research guidelines to lay the groundwork for future research with those they represent, including considerations on data use (e.g., Putaiora Writing Group 2010 ; Nordling 2017 ).…”

The Health and Wellbeing of Indigenous and Tribal Peoples around the Globe: Ensuring and Promoting Best Practice in Research

“…Some authors specifically mentioned aspects of data governance and data sovereignty, such as Tribal/community ownership of data, approval of manuscripts for publication, establishment of a data governance committee, and reference to specific data sovereignty principles [ 10 , 11 , 20 , 26 , 27 , 28 , 30 , 35 ]. For example, Ward and colleagues [ 35 ] sought to understand the role of land in the wellbeing of Labrador Innu people.…”

“…Their work used Innu knowledge and ways of knowing through community-based participatory research and was guided by OCAP ® principles [ 44 ] relating to the ownership, control, access, and possession of First Nations data. Griffiths and colleagues [ 26 ] conducted a systematic review of Indigenous data governance in health research internationally. Key aspects identified in the review were Indigenous governance, institutional ethics, socio-political dynamics, data management and stewardship, and overarching influences including human rights, capacity, and funding.…”

“…Studies in the Special Issue arose in a variety of ways. Some were investigator-driven, based on the results of previous research and/or discussions with various stakeholders over many years [ 7 , 9 , 11 , 13 , 15 , 16 , 17 , 18 , 21 , 25 , 26 , 29 , 32 , 36 , 37 ]. Other studies reflected the priorities of government agencies, either through alignment with articulated strategies or through commissioned work [ 24 , 25 , 33 ].…”

“…The resulting Special Issue includes 31 papers in total, with 21 from Australia [ 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 ], 4 from the United States [ 28 , 29 , 30 , 31 ], 3 from Aotearoa/New Zealand [ 32 , 33 , 34 ], 1 from Canada [ 35 ], and 2 from authors in multiple countries [ 36 , 37 ]. This represents a substantial body of research on the health and wellbeing of Indigenous and Tribal peoples, possibly the largest collection ever published.…”