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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.
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This literature review has been conducted to consider the various national legislation and international agreements that comprise New Zealand’s Intellectual Property Rights (IP) regime. It will evaluate if and how such legislation and agreements protect and enable Māori IP rights and interests with respect to Māori data, genomic data and mātauranga Māori. The review also identifies some mechanisms that might also enhance Māori control of these types of data. The Westminster approach of legislation in New Zealand and its approach to IP protection based on Copyrights, Patents and Trade Marks are juxtaposed against traditional Maori approaches of communally held ancestral knowledge (mātauranga) passed down through generations (whanaungatanga) based on guardianship and protection (kaitiakitanga) and the self-determination of use of such knowledge (rangatiratanga). Attempting to align tikanga concepts to the Westmionster model of law is challenging as the two share completely different notions of ownership and responsibility. Expectations of protection, to prevent misappropriation and commercialisation by non- Māori of mātauranga Māori and Māori data, extend beyond the parameters of existing IP law, creates a similar disjunct. Genomic Research generates data, some of which can be protected by IP, however researchers working with genetic/genomic data from taonga species have often failed to acknowledge the non-IP interests of Maori. As a result, Maori have taken it upon themselves to advocate for their rights to data through Māori data sovereignty discourse as well as create guidelines for culturally appropriate genomic research with explicit references to data security and management (e.g. Te Mata Ira, Te Nohonga Kaitiaki). Other extra-legal options, such as Biocultural Labelling to alert users where particular data has Māori rights and/or interests, are emerging to maintain create durable provenance data and connect next users of data with the responsible Indigenous communities. Though the intellectual property regime in New Zealand may provide some protections, there are still significant areas where the legal system does not provide sufficient protections for Māori data, taonga species and mātauranga. The UN Declaration on the Rights of Indigenous Peoples provides a framework of international support for Indigenous rights, but local government and other home-grown mechanisms are important to enable Māori governance of data. Local approaches Māori Data Sovereignty and Māori Data Governance afford Maori the opportunity to be directly involved as kaitiaki of their mātauranga and assert rangatiratanga over data and its use.
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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.
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One of the great challenges for indigenous and non-indigenous entrepreneurs in the twenty-first century is to move beyond profit maximisation as an acceptable modality for doing business and gravitate towards the concept of socially optimal outcomes, where maximising community well-being and minimising externalities to the natural environment and social justice are paramount. We present findings from a case-study analysis of M?ori enterprises that demonstrate a wealth of successfully kaupapa M?ori (M?ori ideology)-attuned strategy and policy. The case studies provide practical examples of the incorporation and expression of kaupapa M?ori values into strategy and policy of M?ori enterprises. We also identify the numerous challenges to implementing kaupapa M?ori in the management of M?ori Asset Holding Institutions and offer a way forward. Although the case studies are context specific, they provide some key principles and learning that can guide the greater uptake of kaupapa M?ori entrepreneurship.
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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.
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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.
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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.
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