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The vast array of activities that tribal organisations in Aotearoa/New Zealand are responsible for illustrates the importance of high-quality information to support their decision-making. Tribal information needs encompass a broad range of domains, types of information and processes for management. This chapter examines the growingiwi(tribal) interest in data and their uses in the context of oneiwi, Te Whakatōhea, to explore howiwiare beginning to conceptualise their rights and interests over data in Aotearoa/New Zealand. It is focused on the Whakatōhea Māori Trust Board and how it is collecting and becoming the steward for a range of
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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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- data sovereignty
- crown law (1)
- data (1)
- ethics (1)
- genes (1)
- genetic databases (1)
- genomic sequencing (1)
- indigenous data sovereignty (1)
- iwi sovereignty (1)
- population genetics (1)
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