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As the global ‘data revolution’ accelerates, how can the data rights and interests of indigenous peoples be secured? Premised on the United Nations Declaration on the Rights of Indigenous Peoples, this book argues that indigenous peoples have inherent and inalienable rights relating to the collection, ownership and application of data about them, and about their lifeways and territories. As the first book to focus on indigenous data sovereignty, it asks: what does data sovereignty mean for indigenous peoples, and how is it being used in their pursuit of self-determination? The varied group of mostly indigenous contributors theorise and conceptualise this fast-emerging field and present case studies that illustrate the challenges and opportunities involved. These range from indigenous communities grappling with issues of identity, governance and development, to national governments and NGOs seeking to formulate a response to indigenous demands for data ownership. While the book is focused on the CANZUS states of Canada, Australia, Aotearoa/New Zealand and the United States, much of the content and discussion will be of interest and practical value to a broader global audience.

As government policy settings have become more responsive to aspirations of Indigenous communities and researchers are more sensitive to the concerns of Indigenous communities, the research environment has become more conducive to understanding the cultural implications of genomic research. CELSI-us is a tongue-in-cheek reference to taking the temperature of the relationship between genomic researchers and Indigenous communities. If we create friction, then the temperature rises. But if we engage in a culturally responsive manner, then we take the heat out of the relationship and can focus on achieving mutually beneficial outcomes. This has been the focus of our work to date, and we hope that the guidelines we have produced make this challenging path easier for others to traverse.

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Gene editing is arguably the most significant recent addition to the modern biotechnology toolbox, bringing both profoundly challenging and enabling opportunities. From a technical point of view the specificity and relative simplicity of these new tools has broadened the potential applications. However, from an ethical point of view it has re-ignited the debates generated by earlier forms of genetic modification. In New Zealand gene editing is currently considered genetic modification and is subject to approval processes under the Environmental Protection Authority (EPA). This process requires decision makers to take into account Māori perspectives. This article outlines previously articulated Māori perspectives on genetic modification and considers the continuing influence of those cultural and ethical arguments within the new context of gene editing. It also explores the range of ways cultural values might be used to analyse the risks and benefits of gene editing in the Aotearoa New Zealand context. Methods used to obtain these perspectives consisted of (a) review of relevant literature regarding lessons learned from the responses of Maori to genetic modification, (b) interviews of selected ‘key Maori informants’ and (c) surveys of self-selected individuals from groups with interests in either genetics or environmental management. The outcomes of this pilot study identified that while Māori informants were not categorically opposed to new and emerging gene editing technologies a priori, they suggest a dynamic approach to regulation is required where specific uses or types of uses are approved on a case by case basis. This study demonstrates how the cultural cues that Māori referenced in the genetic modification debate continue to be relevant in the context of gene editing but that further work is required to characterize the strength of various positions across the broader community.

Background and objectives:‘Race’ and ethnicity data have become increasingly institutionalised within health research about indigenous peoples. While these data are critical to monitoring the differential distribution of risks and benefits in racialised societies, their uncritical and under-theorised use can perpetuate harmful biologically-deterministic and essentialist approaches to indigenous health. Additionally, indigenous rights and interests in data about us are often overlooked, with issues of indigenous data governance unresolved. The workshop objectives are to: Develop skills to critique uncritical use of ‘race’/ethnicity in indigenous health researchProvide examples from Aotearoa/New Zealand of frameworks or principles of indigenous data sovereignty

In 2007, the UN General Assembly endorsed the United Nations Declaration on the Rights of Indigenous Peoples. In the following years, there has been a strong call from a range United Nations agencies and spokespersons for countries to act to improve their statistics relating to Indigenous peoples as part of their response to the Declaration. These calls have emphasised the need for a holistic approach, describing strengths and resilience of Indigenous peoples and not just a focus on gaps and disadvantage. National responses have been mixed and overall statistics remain inadequate. Significantly, there has been no international statistical effort through the United Nations statistical structures to respond to the Declaration and the increasing array of calls for improved statistics. The United Nations Statistical Commission in particular has an array of mechanisms to study statistical needs and develop solutions across a broad international statistical agenda. It is time for countries to make a concerted effort to improve their own statistics on Indigenous peoples, and to insist that the Statistical Commission work in partnership with the Permanent Forum on Indigenous Issues and other stakeholders to lead a major international drive to improve statistics on and for Indigenous peoples.

In Aotearoa New Zealand (Aotearoa NZ), Māori (the Indigenous peoples of New Zealand) have long been objects of surveillance by state institutions and agents. State representations have centred on constructions of difference and deviance, on understandings of Indigenous peoples as dangerous, and on the management of Indigenous resistance to colonialism. This chapter considers how contemporary state surveillance practices in Aotearoa NZ, enabled by the expanded use of big data and linked government datasets, function to regulate and manage Māori. Through this lens, we explore continuities of current data practices for Indigenous peoples with the racialised logics and social orders set in place as part of global systems of imperialism and colonialism. Recognising that resistance has always been a part of Indigenous responses to colonialism, we also explore how Māori Data Sovereignty (MDSov), as part of broader Indigenous Data Sovereignty (IDS) movements globally, provides opportunities to counter and disrupt prevailing data relations and to imagine alternative futures.

Colonization fundamentally disrupted Indigenous knowledge systems, establishing epistemic hierarchies that privilege Eurocentric colonial epistemologies and methodologies. In this chapter, the authors explore how epistemic hierarchies are (re)produced in the current context of “big data” and datafication, in particular for mokopuna Māori in the nation-state known as New Zealand (NZ). (We use the concept of “mokopuna Māori” to refer to and position Māori babies, children, and young people within the Māori world as the sacred reflection of our ancestors and a blueprint for future generations.) The chapter then considers the possibilities for Indigenous epistemic justice in the “zone of nonbeing” or beyond the “abyssal line.”

Global disease trackers quantifying the size, spread, and distribution of COVID-19 illustrate the power of data during the pandemic. Data are required for decision-making, planning, mitigation, surveillance, and monitoring the equity of responses. There are dual concerns about the availability and suppression of COVID-19 data; due to historic and ongoing racism and exclusion, publicly available data can be both beneficial and harmful. Systemic policies related to genocide and racism, and historic and ongoing marginalization, have led to limitations in quality, quantity, access, and use of Indigenous Peoples' COVID-19 data. Governments, non-profits, researchers, and other institutions must collaborate with Indigenous Peoples on their own terms to improve access to and use of data for effective public health responses to COVID-19.

Indigenous Data Sovereignty (IDS) and Indigenous Data Governance (IDG) art terms increasingly being used across community, research, policy and in practice. The IDS movement has emerged in response to poor data practices, from the conceptualisation of data items through to reporting of data about Indigenous peoples. This chapter aims to provide clarity concerning the definitions of IDS and IDG; provide an overview of the historical context in which IDS has emerged; and provide examples of IDS and IDG across the spectrum of community, policy and practice.