Engaging Maori in Biobanking and Genetic Research: Legal, ethical and policy challenges

Beaton, Angela and Smith, Barry and Toki, Valmaine and Southey, Kim and Hudson, Maui (2015) Engaging Maori in Biobanking and Genetic Research: Legal, ethical and policy challenges. The International Indigenous Policy Journal, 6 (3).

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Official URL: http://ir.lib.uwo.ca/iipj/vol6/iss3/1/

Abstract or Summary

Publically funded biobanking initiatives and genetic research should contribute towards reducing inequalities in health by reducing the prevalence and burden of disease. It is essential that Maori and other Indigenous populations share in health gains derived from these activities. The Health Research Council of New Zealand has funded a research project (2012-2015) to identify Maori perspectives on biobanking and genetic research, and to develop cultural guidelines for ethical biobanking and genetic research involving biospecimens. This review describes relevant values and ethics embedded in Maori indigenous knowledge, and how they may be applied to culturally safe interactions between biobanks, researchers, individual participants, and communities. Key issues of ownership, privacy, and consent are also considered within the legal and policy context that guides biobanking and genetic research practices within New Zealand. Areas of concern are highlighted and recommendations of international relevance are provided. To develop a productive environment for "next-generation" biobanking and genomic research,"‘next-generation" regulatory solutions will be required.

Item Type:Journal article
Keywords that describe the item:equity, ethics, biobanking, Maori, indigenous, New Zealand, health, genetic research, genetics
Subjects:R Medicine > RA Public aspects of medicine
Divisions:Schools > Centre for Health & Social Practice
ID Code:3301
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Deposited On:10 Aug 2015 04:03
Last Modified:10 Aug 2015 04:06

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