By Juliet McMurren
As part of an ongoing effort to build a knowledge base for the field of improving governance through data and technology, The GovLab publishes a series of Selected Readings, which provide an annotated and curated collection of recommended works on themes such as open data, data collaboration, and civic technology.
In this edition, to recognize and honor Indigenous Peoples’ Day, we have curated below a selection of literature on Indigenous data sovereignty (IDS), the principle that Indigenous peoples should be able to control the data collected by and about them, to determine how and by whom it is accessed, stored, and used, and to develop data practices and methodologies that reflect their lived experiences, cultures, and worldviews. The selection complements previously released readings on Personal Data, Data Governance, Algorithmic Scrutiny – among other Data related topics.
To suggest additional readings on this or any other topic, please email info@thelivinglib.org. All our Selected Readings can be found here.
Selected readings
Principles
Kukutai, Tahu and John Taylor (eds) Indigenous Data Sovereignty: Towards an Agenda (2016)

• The foundational work in the field, this edited volume brings together Māori, Australian Aboriginal, Native American, and First Nations academics, researchers and data practitioners to set out the case for Indigenous data sovereignty.  
• Organized in four parts, the book begins by providing a historical account of colonialist statistics and the origins of the concept of Indigenous data sovereignty. In the second part, the authors set out an Indigenous critique of official statistics as a colonialist practice primarily intended to serve settler governments through the control of Indigenous peoples. As a result, population statistics from these societies are imbued with colonialist norms that both ignore indicators significant to Indigenous peoples and reduce them to what contributor Maggie Walter calls 5D data: disparity, deprivation, disadvantage, dysfunction, and difference.
• The authors outline how Indigenous data sovereignty would work, setting out an agenda in which Indigenous people would control who should be counted among them, and establish collection priorities reflective of their cultural norms, interests, values and priorities.  This could include a move away from data about individuals as single indicators used to compare, rank and drive “improvement” to a more nuanced and complex view of data that focuses on social groupings beyond the household. They would also control who would have access to the data gathered, with culturally appropriate rules and protocols for consents to access and use data. These principles are encapsulated in the First Nations OCAP® data model, through which they assert their ownership, control over collection, use and disclosure; access to, and possession of all First Nations’ data.
• The third part of the book provides examples of Indigenous data sovereignty in practice, from the perspective of both data practitioners and data users. A case study of data sovereignty among the Yawuru of Western Australia outlines a methodology for developing data collection rooted in self-determination and community values of mabu buru (knowledge of the land) and mabu liyan (relational or community wellbeing).  Another examines the work of a Māori primary health care organization, National Hauora Coalition, which conducted a rapid response campaign to reduce high rates of acute rheumatic fever among Māori children in Auckland. Stewardship and analysis of their own community data enabled targeted interventions that reduced positive Group A strep rates among children by 75 percent and rates of rheumatic fever by 33 percent.
• The final section of the book outlines the emerging efforts of the New Zealand and Australian Government to engage with Indigenous peoples’ desire for data sovereignty through their statistical practices.  

Lovett, Raymond et al Good Data Practices for Indigenous Data Sovereignty and Governance (2019)

• This multi-authored chapter is the first in a volume the editors describe as born of frustration with dystopian “bad data” practices and devoted to the exploration of how data could be used “productively and justly to further social, economic, cultural and political goals.”
• The chapter sets out the context for the emergence of IDS movements worldwide, and gives a survey of IDS networks and their foundational principles, such as OCAP® (above) and the Māori principles of rangatiratanga (right to own, access, control and possess), manaakitanga (ethical use to further wellbeing) and kaitiakitanga (sustainable stewardship) as they apply to data about or from themselves and their environs.
• The article defines and differentiates IDS—the management of information in alignment with the laws, practices and customs of the nation-state in which it is located—and indigenous data governance (IDG), or power and authority over the design, ownership, access to and use of data.  It situates IDS movements alongside broader movements for Indigenous sovereignty informed by the rights laid out in the UN Declaration on the Rights of Indigenous Peoples. 

Rainie, Stephanie Carroll, Tahu Kukutai, Maggie Walter, Oscar Figueroa-Rodriguez, Jennifer Walker, and Per Axelsson (2019) Issues in Open Data – Indigenous Data Sovereignty. In T. Davies, S. Walker, M. Rubinstein, & F. Perini (Eds.), The State of Open Data: Histories and Horizons.

• Part of a wider report about the state of open data, this chapter discusses the tension between the principles of open data and IDS. Describing open data for Indigenous Peoples as a double-edged sword, the authors note the potential of open data to help deliver on Indigenous aspirations for sustainable development. At the same time, open data perpetuates data challenges born of colonization, including assumptions about a single nation-state and that open data is both useful and benign.
• The authors observe that there is a widespread lack of understanding about IDS within the open data movement, and that open data policy and discussions have been largely framed to address the needs and interests of nation-states, with minimal engagement with Indigenous peoples. The authors provide a critique of the ways in which the Open Data Charter overlooks the issue of IDS in its principles on open by default, citizen engagement, and inclusive development. They note that the Open Data Charter’s commitment to free use, reuse, and redistribution by anyone, at any time, and anywhere, for example, is in direct conflict with the rights of Indigenous Peoples to govern their own data and control how and by whom it is accessed.
• Opening state data that is unreliable, inaccurate, and designed, collected and processed according to the norms of state agencies poses additional problems for Indigenous peoples. Statistics about Indigenous peoples based on colonialist norms frequently perpetuate a narrative of inequality. Data infrastructures may be distorted by cultural assumptions, such as those about naming conventions, that misrepresent Indigenous people. In addition, the concept of open data has led to instances of cooptation and theft of Indigenous knowledge, when researchers have collected Indigenous knowledge about the environment, digitized it and shared it with Indigenous consent or oversight.
• Drawing on the experience of Indigenous data networks worldwide, the authors propose three steps forward for the open data community in its relationship to Indigenous peoples. First, it needs to engage with Indigenous peoples as partners and knowledge holders to inform stewardship of Indigenous data. Secondly, IDS networks, with contacts in Indigenous communities and the world of data, should act as intermediaries for this engagement. Finally, they call for a broader adoption of principles on the governance and stewardship of Indigenous data within research and administration.

Research Data Alliance CARE Principles for Indigenous Data Governance (2019)

• The RDA’s CARE principles propose an additional set of criteria that should be applied to open data in order to ensure that it respects Indigenous rights to self-determination. It argues the existing FAIR principles—that open data should be findable, accessible, interoperable and reusable—focus on data characteristics that facilitate increased sharing while ignoring historical context and power differentials.
• To supplement FAIR, they propose the addition of CARE: that open data should be for collective benefit, recognize Indigenous peoples’ authority to control their own data, carry a responsibility to demonstrate how they benefit self-determination, and have embedded ethics prioritizing the rights and wellbeing of Indigenous people.
• The principle of collective benefit asserts that data ecosystems should be designed in ways that Indigenous peoples can derive benefit from them. This includes active government support for Indigenous data use and reuse, using data to reduce information asymmetries between government and Indigenous communities, and the use of any value created from Indigenous data to benefit Indigenous communities. Authority to control recognizes the rights and interests of Indigenous peoples in their knowledge and data, and to govern and control how it is collected, accessed, used and stored.
• Those working with Indigenous data have a responsibility to demonstrate how they are using it to benefit Indigenous communities. This involves fostering relationships of partnership and trust, working to build capability and capacity within Indigenous communities, and grounding data in the experiences, languages and worldviews of those communities. Finally, the rights and wellbeing of Indigenous peoples must be the primary concern. This requires data design and collection practices that do not stigmatize Indigenous people and that align with Indigenous ethical practices, that address imbalances in power and resources, and that are mindful of the potential for future use and potential harms.

Applications and case studies
Carroll, Stephanie Russo, Desi Rodriguez-Lonebear and Andrew Martinez, Indigenous Data Governance: Strategies from United States Native Nations (2019)

• This article reviews IDS strategies from Native nations in the United States, connecting IDS and IDG to the rebuilding of Native nations and providing case studies of IDG occurring within tribal and non-tribal entities.
• The article leads with a definition of key terms, including data dependency, “a paradox of scarcity and abundance: extensive data are collected about Indigenous peoples and nations, but rarely by or for Indigenous peoples’ and nations’ purposes.” It proposes IDG as a method by which the aspiration of IDS can be achieved, through a self-reinforcing cycle: governance of data leads to data rebuilding, providing data for governance that in turn leads to nation rebuilding.
• The article offers three tribal, two non-tribal, and three urban, inter- and supra-tribal case studies of IDG in practice. The National Congress of American Indians Tribal Data Capacity Project, for example, was a pilot project to build tribal data capacity with five US tribes. Its outputs included a successful census conducted by the Pueblo of Laguna and the University of New Mexico, on tribal terms with tribal money for tribal purposes, and resulting in the development of proprietary software that remains the property of the tribe and that can be reused for subsequent collections.
• The article concludes with a set of recommendations for tribal rights holders and stakeholders. It recommends that tribal rights holders develop tribe-specific data governance principles, policies, and procedures, and generate resources for IDG. Stakeholders are called on to acknowledge, support and promote IDS and embed it in data collection practices by building frameworks specifying how IDS is to be enacted in data processes, investing in intertribal institutions and recruiting and training Indigenous data professionals, among other measures.

Chaney, Christopher Data Sovereignty and the Tribal Law and Order Act (2018)

• This article surveys the relationship between data sovereignty and the provision of criminal justice services, a key aspect of tribal sovereignty. The Tribal Law and Order Act (TLOA) 2010 addressed tribal data by mandating federal justice and law enforcement agencies to coordinate and consult with tribes over data collection, and providing tribal criminal justice agencies meeting federal and state requirements with access to national crime databases to enter and retrieve data.
• TLOA has resulted in broad and extensive opportunities for federally recognized tribes to submit and retrieve data. Subject to federal law, tribes have the right to determine what information they will submit and access, putting the tribe in control of its own data. It also greatly facilitates the administration of tribal law enforcement and justice by enabling access to federal databases on property, such as vehicles and firearms, and people, including those on fugitives, sex offenders, and missing persons. The author suggests that TLOA implementation could serve as a model for other federal agencies working towards tribal data sovereignty arrangements.  

[Dewar, J.] First Nations’ Data Sovereignty in Canada (2019).

• This paper provides an overview of First Nations experiences of Canadian efforts to identify First Nations individuals, communities, and Nations in official statistics and data, and of the development of First Nations Data Sovereignty efforts over the previous two decades.
• The paper surveys the ways in which early legislation constructed “Indians” and indian status within Canada counter to First Nations norms, harming traditional gender roles, leadership structures and governance, severing many First Nations women who “married out” from the culture and lands, and forcing First Nations people to choose between “enfranchisement” through education or employment and their Indian status and culture. 
• The paper then surveys the current First Nations statistical context, noting its numerous deficiencies. Sources of information and data, including the national census, were created with little or no Indigenous involvement or input, creating inconsistencies in the accuracy, reliability, usefulness, and comparability of the data. Even where the data is useful, it is not routinely used in planning and advocacy for the benefit of First Nations communities. First Nations are also required to meet onerous reporting requirements in order to access federal funding, but the resulting data—and other data from and about First Nations—are not effectively analyzed, used, or shared with First Nations. 
• The paper provides examples of effective instances of national and regional First Nations data sovereignty using OCAP® principles. These include the First Nations Information Governance Centre’s own survey work on health, childhood, education, labor and employment, but also similar provincial initiatives. The FNIGC is currently at work with regional partners to develop a National Data Governance Strategy to advance First Nations Data Sovereignty.

Garrison, Nanibaa’ et al Genomic Research Through An Indigenous Lens: Understanding the Expectations (2019)

• This multi-authored study compares research guidelines for genomic research among Indigenous peoples in Canada, New Zealand, Australia, and the United States. 
• It notes that while there is a dearth of genomic research about Indigenous peoples, Indigenous communities have been the subject of western science in ways that have been intrusive, disrespectful and unethical, leading to community harms and mistrust. Lack of community engagement and informed consent for secondary use of data, and past experiences of harmful and negative representation in publications, have reduced the willingness of Indigenous peoples to engage with genetic research.
• Canada, New Zealand, Australia, and the United States each have guidelines on scientific research among Indigenous peoples. The authors compare the provisions of these guidelines and the Indigenous Research Protection Act, a draft instrument developed by the Indigenous Peoples Council on Biocolonialism with the goal of protecting Indigenous peoples in research, across four principles: community engagement, rights and interests, institutional responsibilities, and ethical/legal oversight. They observe that while many of the policies provide for protection of Indigenous peoples relating to sample collection, secondary uses of data, benefits, and withdrawal from research, there is less consistency regarding cultural rights and interests, particularly in US instruments. 
• The authors examine ways Indigenous peoples have sought to “bridge the gap” between the benefits of genomic research and the protection of Indigenous peoples. Community protocol development, Indigenous-led genomics initiatives, and consent procedures that draw on UNDRIP have increased community engagement in some countries and fostered greater trust. Concrete progress has also been made in initiatives to preserve Indigenous rights and interests over biospecimens, including protocols that allow for the return of samples, biobanking, and Indigenous governance of resulting data.

Gifford, Heather and Kirikowhai Mikaere Te Kete Tū Ātea: Towards claiming Rangitīkei iwi data sovereignty (2019)

• This article gives an outline of the Te Kete Tū Ātea research project, an four-year, two phase participatory research initiative by the Rangitīkei Iwi Collective to establish iwi data sovereignty. The first phase resulted in the development of an iwi data needs analysis and comprehensive iwi information framework, which identified potential data sources, gaps in current information, and strategies to address those gaps. The second phase led to the prioritization of a key information gathering domain, economic data, and a statistical evaluation of current iwi data holdings. The project adopted a Kaupapa Māori approach: it was “Māori led, Māori controlled, privileged a Māori worldview, and was framed around questions identified by Māori as of relevance to Māori.”
• The first phase of the study identified a five domain framework to guide iwi data gathering. Collectively, these five domains—cultural, social, peoples, environmental and economic—make up  Te Kete Tū Ātea, informed by three goal dimensions: kaitiakitanga, strengthening identity and connection, and empowerment and enablement. 
• The study identified challenges in assessing the wellbeing of iwi, including statistical capacity within iwi and the availability of data, but the authors suggest that the approach itself could be borrowed and applied by other iwi nationwide.

Johnson-Jennings, Michelle, Derek Jennings, and Meg Little Indigenous data sovereignty in action: The Food Wisdom Repository (2019)

• This article arose from the experience of the authors at the Research for Indigenous Community Health (RICH) Center. Observing that while Indigenous health and nutrition information is available, it is dispersed and difficult to access, they proposed the development of a Food Wisdom Repository to gather meaningful data and information on Indigenous health practices and efforts. The result, supported by the Shakopee Mdewakanton Sioux Community, is an online digital repository of wise food practices grounded in Indigenous knowledge and IDS.
• The project draws on Indigenous worldviews, knowledge and ways of knowing, beliefs, and forms of power. In particular, it is framed around the idea of wise practices—pragmatic, flexible and sustainable practices rooted in a given local context and the wisdom of community members—rather than the objective, hierarchical, hegemonic and acontextual “best practices” of Western science.

Montenegro, Maria Subverting the universality of metadata standards: The TK labels as a tool to promote Indigenous data sovereignty (2019)

• This paper explores how metadata standards, and in particular the widely used Dublin Core, reinforce colonial legal property frameworks and disenfranchise Indigenous people, and how they could be used (or subverted) to exercise and promote IDS.
• The author notes that the rights and creator fields of DC are in direct conflict with Indigenous epistemologies and protocols on the access, circulation, and use of traditional Indigenous knowledge (TK). The rights field is embedded in western legal practice designed to recognize and protect new creations or inventions, and require a designated individual author and original work in order to offer any protection. This emphasis on originality and individuality is at odds with Indigenous knowledge that emphasizes collective and cumulative knowledge acquired over generations. Similarly, both western IP law and the creator field within DC recognize the individual who records the lifestyles, languages and cultural practices of Indigenous people in film, audio, or image as the legal author, rather than the communities from which the content arose. As subjects but not authors, Indigenous people have no control over these recordings of their cultural practices, or how they are stored, accessed or reused. Indeed, they are even legally required to seek permission from the author to reuse these materials that document their lives and culture.
• Developed in collaboration with Indigenous peoples, the TK labels are a set of digital tags that can be included as associated metadata in various digital information contexts such as CMSs, online catalogs and databases, finding aids and online platforms. These tags are intended to increase awareness of culturally appropriate circulation, access and use of Indigenous cultural materials. Designed to be used where communities are unable to assert legal control over materials, they provide important information about culturally appropriate use and stewardship. A Seasonal tag developed by the Penobscot Nation, for example, proscribes access to some content outside a given time of year, while an Attribution label, the most widely used, allows Indigenous communities to assert that they are the TK holders of the content and should be acknowledged as such.
• While the TK labels represent a welcome advance in capturing and asserting Indigenous metadata standards, they are voluntary, and therefore only function if non-tribal collecting institutions recognize the IDS of the tribes. 

McMahon, Rob, Tim LaHache, and Tim Whiteduck Digital Data Management as Indigenous Resurgence in Kahnawà:ke (2015)

• This article documents IDG experiences within the Kahnawà:ke Mohawk (Quebec) community as it set up and used ICT systems to manage community data on research, education, finance, health, membership, housing, lands, and resources. Their research followed the implementation of a customized digital data management system, and sought to find out employees of community service organizations, chiefly in education, conceived of and used data, and the role of data management as part of self-government and Indigenous resurgence. 
• The authors describe the initiative as an act of “everyday community resurgence,” but one that was accompanied by significant internal tensions and challenges. They note the need to avoid technological determinism in IDS, since the use of ICTs has the potential to exacerbate the effects of settler colonialism, concentrating and centralizing power.
• The article describes the rollout, architecture, and governance of the Kahnawà:ke data management system. One of the challenges faced by the community was in data sharing, with a lack of trust between community organizations leading to data hugging and silos. This tension, which has been identified in other research cited by the authors, points to the need for trust-building in order to promote more holistic data sharing and optimal data use.

Rainie, Stephanie Carroll et al Data as a Strategic Resource: Self-determination, Governance, and the Data Challenge for Indigenous Nations in the United States (2017)

• Despite the need of Indigenous nations for data to help identify problems and find solutions, US Indigenous nations encounter a data landscape characterized by “sparse, inconsistent, and irrelevant information complicated by limited access and utility” that does not serve to address tribally defined needs. Because much of this data is collected and controlled by others for their own purposes, mistrust in data collection is high.
• This article documents two cases studies in tribal data sovereignty and data governance, among the Ysleta del Sur Pueblo and Cheyenne River Sioux Tribe. It lays out the data priorities, agendas and challenges faced by each, and the resulting data initiatives, protocols and uses. The article also discusses how this data governance contributed to the tribes’ self determination.
• As part of a development strategy, in 2008 the Ysleta del Sur began to collect socioeconomic and demographic data annually from its citizens as part of its enrolment process. Implementing a census approach that incorporated cultural and local knowledge and western epistemologies, the project yielded data about population, poverty rates, household incomes, educational attainment, workforce and unemployment that was more complete than US census data. Strong community engagement yielded a 90 percent response rate, and the results inspired other data initiatives to support community strategic decision making. The socioeconomic data was also used to support successful applications for federal funding. 
• Identifying high levels of poverty and unemployment as a problem, the Cheyenne River Sioux Tribe sought a comprehensive plan to address these problems, for which they needed timelier, more granular, and more culturally and locally relevant data than that available through the federal government. With academic partners, it developed a survey and data collection process to collect baseline demographic and socioeconomic data from a sample of residents. The survey was able to quantify unemployment rates among people living on the reservation, but also captured employment categories missed by federal data collection, such as the arts microenterprise sector. The results were shared back to the community, and used to foster microenterprises and write grant applications. 

Walter, Maggie and Michelle Suina Indigenous data, indigenous methodologies and indigenous data sovereignty (2019)

• In this article, Walter and Suina propose that there is a dearth of Indigenous quantitative methodologies, driven by a longstanding mistrust of positivist research that positions Indigenous peoples within a deficit discourse. What the authors call “quantitative avoidance” leads to lived consequences for Indigenous peoples: since the statistics produced by quantitative methods form the primary evidence base for policy within the colonial societies, failing to engage with them removes Indigenous people from a critical part of the policy debate. 
• The authors make a case for developing Indigenous quantitative methodologies. They evidence the Albuquerque Area Southwest Tribal Epidemiology Center, whose mission is to collaborate with the 27 tribes of their health area to provide high quality, culturally congruent epidemiology, capacity development, program evaluation, and health promotion. Committed to honoring tribal sovereignty, AASTEC is committed to building capacity that enables tribes to control data design, collection, and management at all stages of the process. This requires not merely adapting western survey instruments, but redesigning them to incorporate the values and definitions of health of the communities they serve.
• The authors close with three recommendations for communities and stakeholders interested in building Indigenous quantitative methodologies. First, communities need to cultivate technical skills for survey development, data collection, analysis and reporting. Secondly, they need to build comfort and understand about research methods among tribal partners in order to undo decades of mistrust; the authors describe simulation exercises that help to demonstrate how worldviews shape expectations and perceptions around data that they have used successfully with Indigenous and non-Indigenous participants. Finally, they should pursue advocacy of IDS and an exchange of ideas that allows successful Indigenous research methodologies to be promulgated.

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