As big data, open data, and open science advance to increase access to complex and large datasets for innovation, discovery, and decision-making, Indigenous Peoples’ rights to control and access their data within these data environments remain limited. Operationalizing the FAIR Principles for scientific data with the CARE Principles for Indigenous Data Governance enhances machine actionability and brings people and purpose to the fore to resolve Indigenous Peoples’ rights to and interests in their data across the data lifecycle.
Data have become the new global currency, and a powerful force in making decisions and wielding power. As the world engages with open data, big data reuse, and data linkage, what do data-driven futures look like for communities plagued by data inequities? Indigenous data stakeholders and non-Indigenous allies have explored this question over the last three years in a series of meetings through the Research Data Alliance (RDA). Drawing on RDA and other gatherings, and a systematic scan of literature and practice, we consider possible answers to this question in the context of Indigenous peoples vis-á-vis two emerging concepts: Indigenous data sovereignty and Indigenous data governance. Specifically, we focus on the data challenges facing Native nations and the intersection of data, tribal sovereignty, and power. Indigenous data sovereignty is the right of each Native nation to govern the collection, ownership, and application of the tribe’s data. Native nations exercise Indigenous data sovereignty through the interrelated processes of Indigenous data governance and decolonizing data. This paper explores the implications of Indigenous data sovereignty and Indigenous data governance for Native nations and others. We argue for the repositioning of authority over Indigenous data back to Indigenous peoples. At the same time, we recognize that there are significant obstacles to rebuilding effective Indigenous data systems and the process will require resources, time, and partnerships among Native nations, other governments, and data agents.
31 August 2019 in Annual Review of Genomics and Human Genetics
Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples’ engagement with genomicresearch was hampered by a lack of standardized guidelines and institutional partnerships, resulting in group harms. This article provides a comparative analysis of research guidelines from Canada, New Zealand, Australia, and the United States that pertain to Indigenous peoples. The goals of the analysis are to identify areas that need attention, support Indigenous-led governance, and promote the development of a model research policy framework for genomic research and health care that has international relevance for Indigenous peoples.
Indigenous Peoples are increasingly being sought out for research partnerships that incorporate Indigenous Knowledges into ecology research. In such research partnerships, it is essential that Indigenous data are cared for ethically and responsibly. Here we outline how the ‘CARE Principles for Indigenous Data Governance’ can sow community ethics into disciplines that are inundated with extractive helicopter research practices, and we provide standardized practices for evolving data and research landscapes.
10 March 2017 in International Indigenous Policy Journal
Data about Indigenous populations in the United States are inconsistent and irrelevant. Federal and state governments and researchers direct most collection, analysis, and use of data about U.S. Indigenous populations. Indigenous Peoples’ justified mistrust further complicates the collection and use of these data. Nonetheless, tribal leaders and communities depend on these data to inform decision making. Reliance on data that do not reflect tribal needs, priorities, and self-conceptions threatens tribal self-determination. Tribal data sovereignty through governance of data on Indigenous populations is long overdue. This article provides two case studies of the Ysleta del Sur Pueblo and Cheyenne River Sioux Tribe and their demographic and socioeconomic data initiatives to create locally and culturally relevant data for decision making.