Carroll Et Al 2021 - Operationalizing The CARE and FAIR Principles For Indigenous Data Futures
Carroll Et Al 2021 - Operationalizing The CARE and FAIR Principles For Indigenous Data Futures
com/scientificdata
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.
Introduction
This discussion emerged from two joint, virtual conference sessions that integrated parallel processes at
the Research Data Alliance (RDA): “Operationalising Be FAIR and CARE” (https://www.rd-alliance.org/
operationalising-be-fair-and-care) and “Implementing the CARE Principles: The CARE-full Process” (https://
www.rd-alliance.org/implementing-care-principles-care-full-process). The FAIR Data Maturity Model Working
Group, hosted by the Research Data Alliance, was endorsed for activity in September 2018 with the primary
objective to develop a core set of criteria that would be used across all the existing implementation methods
for FAIR Data Principles1 (see https://www.rd-alliance.org/group/fair-data-maturity-model-wg/case-statement/
fair-data-maturity-model-wg-case-statement). With this common set of criteria, outcomes of different assess-
ment methods could be compared and provide a better understanding of the true status across the research
community as we move towards meeting the criteria defined. Following a year-long public discussion and build-
ing on Indigenous Data Sovereignty network activities, the Global Indigenous Data Alliance released the CARE
Principles for Indigenous Data Governance in September 20192. After the launch of the CARE Principles, the
RDA International Indigenous Data Sovereignty Interest Group, which produced the CARE Principles, and the
RDA FAIR Data Maturity Model Working Group joined together to begin to explore how to operationalize FAIR
with CARE. This manuscript briefly introduces the CARE Principles and describes CARE in the context of scien-
tific data, FAIR in the context of Indigenous data, how FAIR and CARE intersect, and implications and next steps
for actionable change toward operationalizing FAIR with CARE.
1
Native Nations Institute at the Udall Center for Studies in Public Policy, University of Arizona, Tucson, Arizona,
USA. 2College of Public Health, University of Arizona, Tucson, Arizona, USA. 3Vision & Values, Brussels, Belgium.
4
Te Kotahi Research Institute, University of Waikato, Hamilton, New Zealand. 5Australian Research Data Commons,
Caulfield East, Victoria, Australia. 6Data Leadership, American Geophysical Union, Washington, D.C., USA. ✉e-mail:
[email protected]
The ‘CARE Principles for Indigenous Data Governance’ address concerns related to the people and purpose
of data; Collective benefit, Authority to control, Responsibility, and Ethics, and their respective sub-principles2.
The CARE Principles detail that the use of Indigenous data should result in tangible benefits for Indigenous
collectives through inclusive development and innovation, improved governance and citizen engagement, and
result in equitable outcomes3. Collective benefit is more likely to be realized when data ecosystems are designed
to support Indigenous nations and when the use/reuse of data for resource allocation is consistent with com-
munity values. UNDRIP asserts Indigenous Peoples’ rights and interests in data and their authority to control
their data. Access to ‘data for governance’ is vital to support self-determination and Indigenous nations should be
actively involved in ‘governance of data’ to ensure ethical reuse of data. Given the majority of Indigenous data is
controlled by non-Indigenous institutions there is a responsibility to engage respectfully with those communities
to ensure the use of Indigenous data supports capacity development, increasing community data capabilities, and
the strengthening of Indigenous languages and cultures. Similarly, Indigenous Peoples’ ethics should inform the
use of data across time in order to minimize harm, maximize benefits, promote justice, and allow for future use.
The CARE Principles are designed to be complementary to the FAIR Principles, Findable, Accessible,
Interoperable, Reusable1, and other mainstream data frameworks, and promote equitable participation and out-
comes from data access, use, reuse, and attribution in contemporary data landscapes2. Given the tension between
protecting Indigenous rights and interests in data while encouraging FAIR data in a global research environment
that also supports open data8, implementation of the CARE Principles should be seen as a required dimension
of open and FAIR data that ensures the use of data aligns with Indigenous rights, is as open as determined by
Indigenous communities, is purposeful, and enhances the wellbeing of Indigenous Peoples.
Earth Science Information Partners (ESIP) are working toward developing guidance on how to operationalize
CARE and FAIR for repositories. Earth and space science research data is highly relevant to Indigenous commu-
nities. ESIP’s Sustainable Data Management Cluster is currently reviewing the role of repositories for both CARE
and FAIR to determine the needed operational services and other criteria. An early observation from this work
is that data that are well documented through compliance with FAIR criteria are easier to manage when imple-
menting the CARE Principles.
Tribal databases and Indigenous Content Management Systems (e.g. Mukurtu.org) hold tribal data using
protocols consistent with tribal values and worldviews, thus employing CARE. However, these collections are
generally not consistent with FAIR principles and require enriched metadata and protocols. The Integrated Data
Infrastructure (IDI) in New Zealand has developed a data access protocol called Ngā Tikanga Paihere which
is based on Indigenous concepts and values consistent with CARE as well as ensuring the data are also FAIR
(https://data.govt.nz/use-data/data-ethics/nga-tikanga-paihere/). Application of CARE with FAIR requires a clear
set of criteria and tools such as the FAIR Data Maturity Model. Compiling existing and creating new tools and
criteria for implementing the CARE Principles are needed to achieve data that are FAIR with CARE.
The International Indigenous Data Sovereignty Interest Group, among many activities, created the CARE
Principles and now seeks to identify policy and practice to implement the principles across data ecosystems. The
CARE Principles, beyond supporting Indigenous Peoples’ rights and interests, is a new, game changing perspec-
tive, stimulating researchers across domains and regions as an effort to articulate community data rights.
The work on FAIR Principles and Open Science in recent years made it clear for both researchers and policymak-
ers, that FAIR and Open are two interdependent issues, which are related but not synonymous18. FAIR is a technical
removal (or lessening to a certain level) of the barriers, to make data interoperable, independent from the source,
domain, or underlying technology. On the other hand, openness is a legal term connected to the rights of the data
concerned. Some rights are well known and regulated (ownership), others are less regulated and more controversial.
The role of personal data rights is clear and legislated in most countries, but due to the cultural legislative differences
across regions and countries, there are no consistent rights. Both open and non-open datasets can be FAIR.
Community data rights are just at the beginning of a similar journey. The path provided by Indigenous Peoples
in the data governance and policy field, will soon be followed by others who would like to give a voice to their col-
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lective rights. The OCAP principles (ownership, control, access, and possession) were developed to recognise the
collective rights of First Nations communities in Canada to information collected from their territories (https://
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fnigc.ca/OCAP). OCAP , a registered trademark of the First Nations Information Governance Centre (FNIGC),
enabled First Nations to assert control over data collection processes in their communities19, as well as recognise
the authority to own, protect, and control how their information is used. The claiming of rights to own, control,
access, and possess information about their peoples is fundamentally tied to First Nations self-determination and
®
to the preservation and development of their culture. The OCAP principles are supported by the FNIGC which
has developed a First Nations Data Centre (FNDC) to provide access to unpublished and record-level data from
FNIGC led survey work, including the First Nations Regional Health Survey and the First Nations Regional Early
Childhood, Education and Employment Survey (https://fnigc.ca/fndc).
Data Maturity Model Working Group could support GIDA and the International Indigenous Data Sovereignty
Interest Group to develop the CARE criteria with broad community input, which was used in both the drafting of
the CARE Principles and the FAIR Data Maturity Model.
Fourth, utilize Indigenous design to benefit mainstream data communities. The CARE Principles are the first
attempt to outline collective rights as part of openness. We caution the co-optation of the CARE Principles into
other spaces just yet. As their full criteria for implementation have not yet been determined and used, we must
leave space for the design and maturity of the CARE Principles to occur within the Indigenous environments
from which they originate. While we recommend the time and space for future design, we fully recognize the
benefits of using that Indigenous innovation as a best practice to develop similar principles/criteria for other com-
munities with collective rights e.g., minoritized groups, geographically located communities, special professions,
or consumers. This could be aligned to FAIR, if the “decision point” described in the first point can be identified
and approached in an automated, machine-actionable way.
The discussion at the joint sessions underscored the need for Indigenous data to be both FAIR and CARE,
from data creation to data reuse. FAIR and CARE are complementary perspectives which enable maximum value
through the appropriate and ethical reuse of Indigenous data. However, assessing the FAIR-ness of a data set is
typically a technical exercise which can be done independently by the researcher to prepare the final data set for
reuse. On the other hand, the CARE Principles require engagement with people to address the cultural, ethical,
legal, and social dimensions associated with the intended uses of the dataset. As Indigenous communities expect
CARE-full data practices to be enacted at each step of the data lifecycle, we will need to reflect a broader temporal
dimension to our application of the CARE Principles. At present there is no process to assess whether a research
project meets the CARE Principles. Creating such an assessment represents the next stage towards an equitable
cyberinfrastructure that supports the FAIR and CARE-full use of Indigenous data.
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Acknowledgements
The authors acknowledge the Research Data Alliance (RDA) FAIR Data Maturity Model Working Group, the
RDA International Indigenous Data Sovereignty Interest Group, the Global Indigenous Data Alliance and other
Indigenous Data Sovereignty networks, as well as Indigenous Peoples and allies worldwide who advocate for
Indigenous control of Indigenous data. We are grateful for the discussion of attendees at the 7 April 2020 virtual
RDA Joint Session on “Operationalising Be FAIR and CARE” and the 12 November 2020 RDA Joint Session on
“Implementing the CARE Principles: The CARE-full Process.” We greatly appreciate Andrew Martinez’s graphic
design contributions.
Competing interests
Stephanie Russo Carroll and Maui Hudson are members of the Global Indigenous Data Alliance (GIDA) and
part of the working group that developed the CARE Principles. Shelley Stall is an employee of the American
Geophysical Union which promotes the adoption and use of the FAIR Principles and the CARE Principles. The
authors declare no other competing interests.
Additional information
Correspondence and requests for materials should be addressed to S.R.C.
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