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This chapter tracks the development of Te Mana Raraunga, the Māori Data Sovereignty Network and the influence it has had alongside the Data Iwi Leaders Group in establishing Māori data sovereignty as a legitimate policy discourse within Aotearoa New Zealand. It outlines the key definitions, frameworks and tools that have been developed and are being utilized by agencies and institutions as Māori communities look to increase Māori control of Māori data.

This article explores the tensions one research team has faced in securing appropriate governance or stewardship (which we refer to as kaitiakitanga) of research data. Whilst ethical and regulatory frameworks exist which provide a minimum standard for researchers to meet when working with Maori, what our experience has highlighted is there is currently a “governance” gap in terms of who should hold stewardship of research data collected from Maori individuals or collectives. In the case of a project undertaken in the traditional healing space, the organisation best placed to fulfil this governance role receives no funding or support to take on such a responsibility; consequently by default, this role is being borne by the research team until such time as capacity can be built and adequate resourcing secured. In addition, we have realised that the tensions played out in this research project have implications for the broader issue of how we protect traditional knowledge in a modern intellectual property law context, and once again how we adequately support those, often community-based organisations, who work at the interface between Indigenous knowledge and the Western world.

Indigenous workforces have existed across the world since the creation of Earth. What has changed is the evolution of multicultural societies, governments, and landscapes that have become part of, or sit parallel to, sovereign Indigenous nations and their workforces. An international response to Employee Assistance Programming (EAP) and workplace health will be shared from various Indigenous groups across the globe. These societies include the Maori of New Zealand, First Nations of Canada, American Indian groups from the U.S. mainland, and Native Hawaiians. Guidelines for EAP practice include the discussion of historical trauma, communication skills, confidentiality, and environmental issues. Theoretical underpinnings for health sovereignty are shared through ancient teachings of Indigenous philosophies and their relationships to contemporary EAP development and utilization.

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.

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.

The COVID-19 pandemic has inequitably impacted Indigenous communities in the United States. In this emergency state that highlighted existing inadequacies in US government and tribal public health infrastructures, many tribal nations contracted with commercial entities and other organization types to conduct rapid diagnostic and antibody testing, often based on proprietary technologies specific to the novel pathogen. They also partnered with public-private enterprises on clinical trials to further the development of vaccines. Indigenous people contributed biological samples for assessment and, in many cases, broadly consented for indefinite use for future genomics research. A concern is that the need for crisis aid may have placed Indigenous communities in a position to forego critical review of data use agreements by tribal research governances. In effect, tribal nations were placed in the unenviable position of trading short-term public health assistance for long-term, unrestricted access to Indigenous genomes that may disempower future tribal sovereignties over community members' data. Diagnostic testing, specimen collection, and vaccine research is ongoing; thus, our aim is to outline pathways to trust that center current and future equitable relationship-building between tribal entities and public-private interests. These pathways can be utilized to increase Indigenous communities' trust of external partners and share understanding of expectations for and execution of data protections. We discuss how to navigate genomic-based data use agreements in the context of pathogen genomics. While we focus on US tribal nations, Indigenous genomic data sovereignties relate to global Indigenous nations regardless of colonial government recognition.

Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.