The CARE Principles for Indigenous Data Governance

Abstract

Concerns about secondary use of data and limited opportunities for benefit-sharing have focused attention on the tension that Indigenous communities feel between (1) protecting Indigenous rights and interests in Indigenous data (including traditional knowledges) and ( 2) supporting open data, machine learning, broad data sharing, and big data initiatives. The International Indigenous Data Sovereignty Interest Group (within the Research Data Alliance) is a network of nation-state based Indigenous data sovereignty networks and individuals that developed the 'CARE Principles for Indigenous Data Governance' (Collective Benefit, Authority to Control, Responsibility, and Ethics) in consultation with Indigenous Peoples, scholars, non-profit organizations, and governments. The CARE Principles are people-and purpose-oriented, reflecting the crucial role of data in advancing innovation, governance, and self-determination among Indigenous Peoples. The Principles complement the existing data-centric approach represented in the 'FAIR Guiding Principles for scientific data management and stewardship' (Findable, Accessible, Interoperable, Reusable). The CARE Principles build upon earlier work by the Te Mana Raraunga Maori Data Sovereignty Network, US Indigenous Data Sovereignty Network, Maiam nayri Wingara Aboriginal and Torres Strait Islander Data Sovereignty Collective, and numerous Indigenous Peoples, nations, and communities. The goal is that stewards and other users of Indigenous data will 'Be FAIR and CARE.' In this first formal publication of the CARE Principles, we articulate their rationale, describe their relation to the FAIR Principles, and present examples of their application.

Operationalizing the CARE and FAIR Principles for Indigenous data futures

“…There is a scarcity of data that align with Indigenous rights and interests and which Indigenous Peoples can control and access in a manner consistent with the CARE Principles. There is an abundance of data that are buried in larger collections, hard to find, mislabelled, and controlled (legally and literally) by others in a manner inconsistent with the FAIR and CARE Principles 10 . These two trajectories are represented in Fig.…”

Indigenous Peoples' Data During COVID-19: From External to Internal

“…Indigenous data are information or knowledge in any format that impact the lives of Indigenous Peoples collectively and individually, including data about lands and resources; information about individuals; and collective cultural and traditional knowledges (Maiam nayri Wingara, 2018;Te Mana Raraunga, 2018;Carroll et al, 2019Carroll et al, , 2020aRainie et al, 2019). In the COVID-19 context, Indigenous data comprise information about COVID-19 testing (including community level measures such as municipal waste water), cases, hospitalizations, health service access, deaths, and comorbidities (Research Data Alliance COVID-19 Indigenous Data Working Group, 2020).…”

“…The CARE Principles for Indigenous Data Governance (Collective benefit, Authority to control, Responsibility, Ethics) are propelling international discussions around Indigenous Peoples' data during a global pandemic and beyond (Research Data Alliance International Indigenous Data Sovereignty Interest Group, 2019 ; Carroll et al, 2020a , b ; Research Data Alliance COVID-19 Indigenous Data Working Group, 2020 ). Using the CARE Principles as a framework, the Research Data Alliance (RDA) COVID-19 Working Group set forth guidelines that underscore the need to engage Indigenous Peoples across COVID-19 data lifecycles and ecosystems (Research Data Alliance COVID-19 Indigenous Data Working Group, 2020 ).…”

“…In many places we have seen the continued underfunding of Indigenous public health during the pandemic, which further limits the access and use of data for the distribution of resources and investments in infrastructure and immediate needs. Additionally, even when funds are provided, often they come with strings such as excess regulation and micro-management and/or fear from Indigenous Peoples to assert their own governance systems and Indigenous knowledge's to curb the spread of SARS-CoV-2 (Carroll et al, 2020b ). When the COVID-19 pandemic hit, an $82 billion emergency response package was announced by the Canadian federal government for the country (Harris, 2020 ).…”

How Do Data Bolster Pandemic Preparedness and Response? How Do We Improve Data and Systems to Be Better Prepared?

“…It is essential to engage with the owners of data, especially from vulnerable populations regarding the appropriate ways of using the data for their benefit. An example would be the CARE principles 5 (collective benefit, authority to control, responsibility, and ethics) focused on Indigenous data sovereignty to address historical power imbalances and aims to create value from Indigenous data and realize opportunities for Indigenous peoples and communities within the knowledge economy.…”