Aligning policy and practice to implement CARE with FAIR through Indigenous Peoples’ protocols

Indigenous Peoples have historically been targets of extractive research that has led to little to no benefit. In genomics, such research not only exposes communities to harms and risks of misuse, but also deprives such communities of potential benefits. Tribes in the US have been exercising their sovereignty to limit this extractive practice by adopting laws and policies to govern research on their territories and with their citizens. Federally and state recognized tribes are in the strongest position to assert research oversight. Other tribes lack the same authority, given that federal and state governments do not recognize their rights to regulate research, resulting in varying levels of oversight by tribes. These governance measures establish collective protections absent from the US federal government's research oversight infrastructure, while setting expectations regarding benefits to tribes as political collectives. Using a legal epidemiology approach, the paper discusses findings from a review of Tribal research legislation, policy, and administrative materials from 26 tribes in the US. The discussion specifies issues viewed by tribes as facilitators and barriers to securing benefits from research for their nations and members/citizens, and describes preemptive and mitigating strategies pursued by tribes in response. These strategies are set within the framing of the CARE Principles for Indigenous Data Governance (Collective Benefit, Authority to Control, Responsibility, Ethics), a set of standards developed to ensure that decisions made about data pertaining to Indigenous communities at the individual and tribal levels are responsive to their values and collective interests. Our findings illustrate gaps to address for benefit sharing and a need to strengthen Responsibility and Ethics in tribal research governance.

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.

Abstract: This article provides foundational definitions connected to Indigenous Peoples' data in relation to information institutions, specifically libraries and archives. The authors explain the relationship between Indigenous Data Sovereignty (IDSov) and Indigenous Data Governance (IDGov) before moving into a general overview of norms and principles related to enhancing IDSov and implementing IDGov and finishing with the CARE Principles for Indigenous Data Governance (Collective Benefit, Authority to Control, Responsibility, and Ethics). This article also provides examples of the application and implementation of the CARE Principles in libraries and archives, including Community-Driven Archives, Indigenous Librarianship, Local Contexts Labels and Notices in Libraries, and Language Materials. This article concludes with recommendations for applying the CARE Principles in information institutions. The purpose of the article's information is to provide foundational article, definitions, resources, and perspectives for information institutions and professionals, specifically librarians and archivists, to support IDSov and apply and use IDGov principles from Indigenous Peoples' viewpoints. The authors' intention is to show the importance of this work in communities, not just in information institutions. This article also highlights the importance of Indigenous librarianship when operationalizing IDGov. This article acknowledges the work being done in various information institutions to de-silo information practices and incorporate Indigenous Peoples' perspectives.

Biomedical data are now organized in large-scale databases allowing researchers worldwide to access and utilize the data for new projects. As new technologies generate even larger amounts of data, data governance and data management are becoming pressing challenges. The FAIR principles (Findable, Accessible, Interoperable, and Reusable) were developed to facilitate data sharing. However, the Indigenous Data Sovereignty movement advocates for greater Indigenous control and oversight in order to share data on Indigenous Peoples’ terms. This is especially true in the context of genetic research where Indigenous Peoples historically have been unethically exploited in the name of science. This article outlines the relationship between sovereignty and ethics in the context of data to describe the collective rights that Indigenous Peoples assert to increase control over their biomedical data. Then drawing on the CARE Principles for Indigenous Data Governance (Collective benefit, Authority to control, Responsibility, and Ethics), we explore how standards already set by Native nations in the United States, such as tribal research codes, provide direction for implementation of the CARE Principles to complement FAIR. A broader approach to policy and procedure regarding tribal participation in biomedical research is required and we make recommendations for tribes, institutions, and ethical practice.

Indigenous peoples in high-income settler-colonial countries experience disproportionately high cervical cancer incidence and mortality compared to non-Indigenous populations, reflecting systemic inequities and barriers to culturally safe care. HPV self-collection offers a potential solution to overcoming inequities by enabling women and people with a cervix to collect their own sample, improving autonomy, privacy, and access, and supporting culturally responsive models of care. While self-collection is accurate, acceptable, and increases screening participation, evidence is needed on how best to support implementation to reach Indigenous women and people with a cervix. This scoping review aimed to identify and describe implementation strategies, barriers, facilitators, and context-specific adaptations to HPV self-collection for cervical screening among Indigenous women and people with a cervix in high-income settler colonial countries. Eligible sources included peer-reviewed and grey literature published between August 2013 and November 2025 that described barriers, facilitators, implementation strategies, or context-specific adaptations to HPV self-collection among Indigenous women and people with a cervix in Australia, Aotearoa New Zealand, Canada, or the United States of America (USA). Database (PubMed, SCOPUS, ProQuest CINAHL) and grey literature searches targeting Indigenous-specific organisations, government websites were conducted, using the broad search terms: cervical screening, HPV, self-collection, and Indigenous peoples. Data were extracted and mapped against the Health Equity Implementation Framework to identify barriers, facilitators, and strategies relevant to the implementation of HPV self-collection. 32 publications were included, comprising 28 academic publications and 4 from the grey literature. Identified facilitators included client health literacy and knowledge, flexible models of care, culturally responsive care, supportive data and systems, and strengths-based messaging. Indigenous-led solutions were central to enabling these facilitators. While evidence comparing the impact of individual strategies is not available, community-driven, multi-component strategies were recommended. The most effective strategies appeared to combine flexible delivery models, such as home-based or outreach approaches, with tailored education focusing on increasing knowledge and building trust. Indigenous-led approaches and the involvement of Indigenous health workers and community leaders were central to strategies.

BackgroundResearch into the effectiveness of antenatal education classes is crucial for Indigenous Peoples from Aotearoa New Zealand, Australia, Canada and the United States who experience poorer maternal and infant health outcomes compared to non-Indigenous populations. Our systematic review questions were intended to determine the extent of Indigenous Peoples prioritisation and involvement in antenatal education classes, and to understand the experience of Indigenous Peoples from these countries in antenatal education classes.MethodsUsing a standardised protocol, we systematically searched five electronic databases for primary research papers on antenatal education classes within the four countries noted and identified 17 papers that met the criteria. We undertook a qualitative meta-synthesis using a socio-critical lens.ResultsSystematic review of the academic literature demonstrates that Indigenous Peoples of Aotearoa New Zealand, Australia, Canada and the United States are not prioritised in antenatal education classes with only two of 17 studies identifying Indigenous participants. Within these two studies, Indigenous Peoples were underrepresented. As a result of poor engagement and low participation numbers of Indigenous Peoples in these antenatal education classes, it was not possible to understand the experiences of Indigenous Peoples.ConclusionGiven that Indigenous Peoples were absent from the majority of studies examined in this review, it is clear little consideration is afforded to the antenatal health needs and aspirations of Indigenous Peoples of Aotearoa New Zealand, Australia, Canada and the United States. To address the stark antenatal health inequities of Indigenous Peoples, targeted Indigenous interventions that consider culture, language, and wider aspects of holistic health must be privileged.Trial registrationPROSPERO Registration ID: CRD4202017658

In this article, we discuss the current state of psychological research with Indigenous peoples, with a specific focus on research including Aboriginal and Torres Strait Islander peoples of Australia and the Māori people of Aotearoa (New Zealand). We identify how the mental health of Indigenous people is often significantly poorer than non-Indigenous people and could be contributing to the increased prevalence of comorbidity between mental health and substance abuse. However, we also show that there are concerns about the reliability of these data and that comparing Indigenous to non-Indigenous data is contested and often unreliable. The gap between Indigenous and non-Indigenous people is discussed within the context of competencies required for psychologists within Australia and Aotearoa (New Zealand), concerning their relevant National Psychology Boards accreditation standards, and core competencies for clinicians. Finally, we show that there is a paucity of research measuring the effectiveness of Western developed psychotherapies with Indigenous people, question their relevance and note the conspicuous silence around Indigenous psychological knowledge. In conclusion, we show that Aboriginal and Torres Strait Islander Peoples are lagging in most health statistics compared to Maori people and other Indigenous peoples which may reflect different experiences of colonisation in each country. However, these statistics also show that progress is possible to help Indigenous people, globally, to achieve their mental health goals.

Since moving to Aotearoa New Zealand, I have been attempting to learn about Mātauranga Māori and understand how we can embed values from local cultures and traditional knowledges into the design of our future built environments. These learnings help me rethink architectural design and pedagogy not only here, but also in my home country, Brazil, and the wider South American context. In the global context of climate and ecological crises, Indigenous knowledge can help us learn to live lives with a closer connection to the natural environment, to be mindful of the use of natural resources and to be more collective-oriented. Indigenous perspectives are important in our transition to a regenerative future, where we aim to go beyond sustainability to create positive impacts for ecology, health and society. In this context, I have been working with a team of researchers from Auckland University of Technology and Pontificia Universidad Católica de Valparaíso, Chile, on a project investigating co-design practices to develop better housing models with Indigenous communities. Indigenous concepts of ‘home’ are multidimensional and often extend beyond the physical and social environments where people live. Although there are diverse cultures across the world, fundamental ideals of ‘home’ are shared amongst many Indigenous communities, such as relationships that connect a person to all that surrounds them, connections to other people, living beings, land, ancestors, stories, languages, and traditions. Most housing options in colonised countries have tended to promote values of individualisation, private property rights and nuclear family units; public housing policies and architectural designs have often been imposed on indigenous communities based on non-indigenous ideals of good housing. However, more recently, these original values and collective forms of living have been re-emerging across the globe, with many successful examples of new collective housing co-designed with Indigenous communities. This presentation will share findings from this research carried out in Aotearoa New Zealand and South America, which investigates contemporary housing solutions co-designed with Indigenous communities. Case studies from different countries are explored, and interviews with architects reveal key lessons learned in participatory practices with residents. The findings show differences and similarities across the Pacific, highlighting key valuable shared principles that can be applied to all forms of housing for a regenerative future, such as multigenerational relationships, connection to the natural environment, shared spaces and resources and initiatives to create a real sense of community. The lessons learned about co-design processes can be valuable for designers working with collective housing in the Global South and other areas across the globe.

Political struggles are important to the identities of many indigenous peoples. This article examines identity as a predictor of crucial political outcomes—voter turnout, support for protest, and political party support—for Māori, the indigenous peoples of Aotearoa (New Zealand). We analyzed data from a national probability sample of Māori ( N = 663) that included a scale of subjective identification with various aspects of Māori identity: the Multidimensional Model of Māori Identity and Cultural Engagement. Use of the scale allowed us to examine the facets of ethnic identity that predict political mobilization for indigenous peoples. As expected, the identity domain relating to political struggle, Socio-Political Consciousness, was positively associated with support for left-wing parties and Māori rights protest but negatively associated with support for the right-wing party. However, Socio-Political Consciousness did not relate to voter turnout. These results demonstrate the importance of ethnic identity as a key predictor of political behaviors for indigenous peoples.

In settler colonial states like Australia and Aotearoa New Zealand, water for the environment and the water rights of Indigenous Peoples often share the common experience of being too little and too late. Water pathways have been constrained and defined by settler colonialism, and as a result, settler state water law has both a legitimacy problem, in failing to acknowledge or implement the rights of Indigenous Peoples, and a sustainability problem, as the health of water systems continues to decline. In both Australia and Aotearoa New Zealand, the focus of water law has historically been to facilitate use of the water resource to support economic development, excluding the rights of Indigenous Peoples and poorly protecting water ecosystems. However, in the early 21st century, both countries made significant advances in recognizing the needs of the environment and the rights of Indigenous Peoples. In Aotearoa New Zealand, Te Tiriti o Waitangi (the Treaty of Waitangi) provides an important bicultural and bijural framework that is beginning to influence water management. In 2017, as part of a Treaty dispute settlement, Aotearoa New Zealand passed legislation to recognize Te Awa Tupua (the Whanganui River) as a legal person and created a new collaborative governance regime for the river, embedding the interests and values of Māori at the heart of river management. In Australia, water recovery processes to increase environmental flows have been under way since the 1990s, using a combination of water buybacks and water savings through increased efficiency. There has been growing awareness of Indigenous water rights in Australia, although progress to formally return water rights to Indigenous Peoples remains glacially slow. Like Aotearoa New Zealand, in 2017, Australia also passed its first legislation that recognized a river (the Birrarung/Yarra River) as a living entity and, in doing so, formally recognized the responsibilities of the Wurundjeri Woi Wurrung people as Traditional Owners of the river. This trend toward more holistic river management under a relational paradigm, in which the relationships between peoples and places are centered and celebrated, creates a genuine opportunity for water governance in settler states that begins to address both the legitimacy and sustainability flaws in settler state water law. However, these symbolic shifts must be underpinned by relationships of genuine trust between Indigenous Peoples and the state, and they require significant investment from the state in their implementation.

A heavy over-representation of Indigenous people within criminal justice and state welfare systems is a co1runon factor of first-world colonized nation-states. In Australia, Aotearoa New Zealand, the US and Canada this over-representation positions Indigenous peoples as a group of key interest for criminological researchers and there is a significant body of criminological literature documenting this positioning in each country. This over-representation also positions Indigenous peoples as a disproportionately vulnerable group and highlights the criticality of ensuring that the conduct of research with Indigenous peoples meets high ethical standards. Conducting ethical research with, or about, Indigenous peoples, however requires much more than standard ethical approval from university or other institutional ethics committees. Research with Indigenous peoples, particularly the ethical aspects of this research, is not neutral territory. Not only are there unique ethical principles, guidelines and needs associated with such research, the realm is also awash with racial, cultural, social and political assumptions. The signing of a consent form, for example, taken as evidence of a participant's voluntary informed participation in the research, may neither be culturally applicable nor meaningful for Indigenous participants. The complex realm of ethical Indigenous research practice in settler states, therefore, has to be examined from both ends of the research spectrum. The ethical principles and perspectives that the Indigenous subjects of research have articulated and the ethical dimensions of worldviews and values that researchers themselves bring to their research alongside the compatibility of these with Indigenous research ethics are central concerns of ethical research practice with Indigenous peoples. The chapter begins with an overview of the shared positionality of Indigenous peoples on the hierarchy of socio-economic and cultural disadvantage and within criminal justice systems in their respective first-world colonized nation-states: Australia, Aotearoa New Zealand, the US and Canada. The chapter then details Indigenous ethical perspectives, as they are conceived formally and informally, and their ramifications for criminology researchers in the practice of ethical research. For Indigenous peoples, ethical research is research that recognizes and respects Indigenous cultural values, norms, knowledges and sovereign rights. To this encl most of our example first-world settler states have developed sets of ethical guidelines to inform researchers designing and conducting culturally appropriate and collaborative research. A cross-national comparative analysis of these demonstrates both the essential similarities across cultures and nation-states as well as national variations. The chapter then addresses the ethical impact of the cultural, social and racial milieu of the researcher: the researcher's worldview. Even if the researcher is fully cognizant of Indigenous ethical dimensions, the outc01ne is not necessarily ethical research. If they do not understand their own social position and how this frames their research practice then a significant potential to do research harm remains. Researchers' worldview, and the value and belief systems that flow from this, shape and influence the research questions they regard as important, the way data are gathered, from whom, and, often most critically, the interpretation of those data. Criminological research is not purely a scholarly endeavor and those interpretations have social and public policy resonance. Far removed from researchers themselves, research findings have real life effects on Indigenous peoples and communities. An Australian research example is used to demonstrate such ethical issues.

A new multi-proxy paleo database for lake ecosystem and catchment change in Aotearoa New Zealand points to the potential resource and ecosystem service roles of Typha orientalis (raupō). In the context of chronic wetland degradation in Aotearoa New Zealand over the past century, this iconic yet enigmatic wetland plant can be viewed, alternately, as an invasive threat; a valuable cultural and economic resource; and a natural, indigenous agent for bioremediation. Our investigation reconstructs the history of raupō over the past ~1000 years, based on 92 new pollen records generated from lake sites across Aotearoa New Zealand. At almost every site where raupō is present today, its expansion is promoted to varying extents during periods of human activity and at 87% of sites investigated, raupō shows its maximum palynological abundance post human arrival. Multiple patterns of response over time point to a range of hydrological, trophic, and cultural scenarios that are conducive for raupō expansion, raising prospects for its potential role in mitigating the ecological impacts of disturbance. Raupō expansion, promoted by anthropogenic forest clearances and associated sediment and nutrient flux, would in turn have provided new opportunities for its use as a valuable food and material resource, prompting further questions as to the extent it was deliberately managed by indigenous populations. As both a benefactor from, and provider for, expanding populations, raupō may be regarded as a human associate in Aotearoa New Zealand prehistory. As well as being indigenous to Aotearoa New Zealand, T. orientalis also occurs naturally in Australia and east Asia and shares the intrinsic ecological and morphological attributes of the ~40 species or hybrids of Typha that span most of the planet. This work therefore may encourage wider application of the genus as a biocultural asset informed from its local natural history.

Disordered eating is a significant issue in university student populations. Currently, access to interventions is limited. Online interventions present an innovative way to increase accessibility to treatment for those in need. The current study explored how an online intervention for disordered eating (everyBody) could be modified to suit the needs of university students in Aotearoa New Zealand. Aotearoa New Zealand is a unique cultural context, with an indigenous population that has a high incidence rate of disordered eating, highlighting the need to adapt everyBody to the local context. Individual interviews were conducted with nine students currently at university in Aotearoa New Zealand, aged between 18 and 33 years old (five females, four males). Three first-order themes were identified using template analysis. The themes indicate that participants perceived the programme as acceptable and feasible for use with Aotearoa New Zealand's university student population. Furthermore, the themes provide insight into potential adaptions to the programme to facilitate engagement and uptake. The suggested changes were largely consistent with previous research on E-therapy design (e.g., content length, therapeutic alliance), and also highlight changes specific to fit Aotearoa New Zealand's cultural context. The findings have implications for universities and other funders deciding on services for students with disordered eating and eating disorders.

Re-storying Māori Legal Histories:Indigenous Articulations in Nineteenth-Century Aotearoa New Zealand Nēpia Mahuika (bio) ON FEBRUARY 13, 1883, while building a cookhouse at Whakawhitira in the Waiapu valley, the Ngāti Porou chief Hāmana Mahuika was callously shot and killed by a disgruntled member of his own tribe.1 Widely lamented as the “terrible” loss of a “law abiding” leader, his death caused shock and outrage in and beyond the local community.2 Writing of the tragedy more than half a century later, iwi (tribal) scholar Rewiti Kohere recounts that at the time of the funeral: tribes in their hundreds came to Whakawhitira to lament over the massacred chief. Mokena Kohere, with a number of his Ngāti–Hokopus, came armed, even with their guns loaded. When the party arrived on the banks of the Waiapu, overlooking the settlement of Whakawhitira, they gave a volley. The people across the river could hear the whistling bullets overhead, and, leaving the body, ran away. When the supply of bullets ran out the fiery chief and his followers crossed the river, and, as though nothing had happened wept over the dead chief who lay in state. In accordance with ancient custom anybody could be killed in atonement for the shedding of blood, especially in the case of a murdered chief.3 If anybody could be killed in penance for a “massacred” chief, then why was Hāmana Mahuika’s assailant tried in a Pākehā (white European) settler court and not dealt with by the Indigenous peoples in accordance with their own laws and customs? How could this have been allowed to happen when Māori for a large part of the nineteenth century had actively enforced their own “law,” particularly in isolated communities like the East Coast? These questions are asked here not to simply instigate an investigation of Ngāti Porou decision making regarding the law in nineteenth-century Aotearoa, but to offer a new starting point for analysis, in which a re-examination through Māori eyes unsettles and re-stories Eurocentric legal histories that have misrepresented or ignored Native histories on these shores. This essay, then, responds to the questions raised above, but considers them in intersecting layered issues, from Indigenous agency and decolonization to the varied realities of evolving Māori tribal frameworks that were embedded in and altered, both [End Page 40] deliberately and sometimes reluctantly, by local customs and traditions amid new spiritualties, laws, ideologies, and religions. This is a paper about Indigenous articulation—a Ngāti Porou and Māori questioning and re-storying of our own nineteenth-century legal experiences. A Māori rearticulation of legal history in our own country is, like many other strands of historical inquiry here, a much-needed endeavor. Histories of the legal system in Aotearoa New Zealand have, for too long, focused predominantly on Pākehā pioneering experiences, which Jacinta Ruru argues has been “used to endorse a new narrative of nationhood—a country founded and settled by the British.”4 It is a history that has long been narrated by the colonizer, decorated with discourses of paternalism and the myths of nation-making. Paul McHugh points out that this dominant New Zealand legal history “became the legitimating account of the state itself and, in justifying the institutions of state governance, became an essential ideological (if not propagandist) element in nation building. Events and individuals became described and assessed in terms of progress towards an eventual and inevitable constitutional form.”5 In contrast, Māori legal histories have largely been ignored by many in the discipline who have simply been “unwilling to treat Māori law seriously.”6 This attitude, Richard Boast admits, has long been driven by “the narrow positivism that has characterised not only the practice but the teaching of law in this country until recently.”7 In decolonizing the Eurocentric history of law in Aotearoa New Zealand, Māori scholars have emphasized the need to re-story the narrative. Ani Mikaere asserts that “a necessary starting point is to remind ourselves that Māori law existed here in Aotearoa for many hundreds of years before 1840.”8 More recently, Carwyn...

Photovoice is an emerging qualitative research method used to engage community members in research that highlights their lived experiences and initiate change. Photovoice offers potential benefits to research conducted by and with Indigenous communities through privileging Indigenous knowledge and perspectives. There is a lack of synthesized evidence about the usage, benefits, and challenges of conducting Photovoice research by and with Indigenous communities, which this systematic methods review aims to address. We specifically focus on Indigenous young people in Canada, Australia, Aotearoa New Zealand, and the United States. Five databases were searched systematically for articles including keywords for ‘Indigenous’ and ‘Photovoice’. Empirical studies and methods papers reporting the use of Photovoice with majority cohorts of young Indigenous participants were included. Relevant data were extracted and Photovoice methods analysed using an integrative approach. Database searches yielded 1402 articles, with 109 reviewed in full and 41 included in the review. These articles represented 37 unique studies, with most from Canada ( n = 17), and the United States ( n = 14). Our analysis revealed great variability in how Photovoice has been applied across studies with Indigenous young people. However, some notable commonalities include recruitment of participants via community networks, and participant involvement in data collection and analysis. The potential benefits associated with using Photovoice with Indigenous young people included: fostering participant autonomy and authority; photography being familiar and fun; the visual medium being culturally appropriate for Indigenous peoples; and the method being effective for engaging the whole community. Challenges associated with Photovoice included: engagement difficulties between researchers and participants; issues with photography; and ethical complexities. These findings suggest that Photovoice is an appropriate and largely effective method to engage young Indigenous people in research. However, there are logistical and ethical issues associated with the method that require careful consideration.