Engaging Maori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities
Engaging Maori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities
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DOI：
10.1038/gim.2016.111
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发表时间：
2017-03-01
影响因子：
8.8
通讯作者：
Wihongi, Helen
中科院分区：
文献类型：
--
作者：
Beaton, Angela;Hudson, Maui;Wihongi, Helen
目的：He Tangata Kei Tua 是生物样本库的关系模型，旨在通过指导生物样本库在治理、运营和社区参与活动方面的文化知情政策和实践，促进解决毛利人伦理问题的最佳实践。方法：该模型基于与毛利人相关的关键问题，这些问题被确定为新西兰健康研究委员会资助的研究项目 Te Mata Ira（2012-2015 年）的一部分。结果：该项目确定了毛利人对以下问题的看法：生物样本库和基因研究，并与 tikanga Maori 一起制定了道德生物样本库和涉及生物样本的基因研究的文化准则。该模型借鉴了 matauranga（土著知识）和 tikanga Maori（毛利人协议和实践）的基础，对于生物样本库、研究人员、伦理委员会成员以及在地方、区域、国家或国际环境中参与有关生物样本库咨询或建议的人员来说非常有用。结论：本文描述了该模型，并考虑了对寻求解决毛利人伦理问题的生物样本库的政策和实践影响。尽管该模型侧重于新西兰背景下毛利人的愿望，但它提供了一个考虑与其他社区或土著背景相关的文化价值观的框架。
Purpose: He Tangata Kei Tua, a relationship model for biobanks, was developed to facilitate best practice in addressing Maori ethical concerns by guiding culturally informed policy and practice for biobanks in relation to governance, operational, and community engagement activities.Methods: The model is based on key issues of relevance to Maori that were identified as part of the Health Research Council of New Zealand-funded research project, Te Mata Ira (2012-2015).Results: This project identified Maori perspectives on biobanking and genetic research, and along with tikanga Maori it developed cultural guidelines for ethical biobanking and genetic research involving biospecimens. The model draws on a foundation of matauranga (Indigenous knowledge) and tikanga Maori (Maori protocols and practices) and will be useful for biobanks, researchers, ethics committee members, and those who engage in consultation or advice about biobanking in local, regional, national, or international settings.Conclusion: This article describes the model and considers the policy and practice implications for biobanks seeking to address Maori ethical concerns. Although the model has focused on Maori aspirations in the New Zealand context, it provides a framework for considering cultural values in relation to other community or indigenous contexts.