Engaging Māori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities
| Autor: | Barry Smith, Valmaine Toki, Khyla Russell, Phillip Wilcox, Moe Milne, Lynley Uerata, Ramari Viola Port, Karen Bartholomew, Helen Wihongi, Maui Hudson, Angela Beaton |
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| Rok vydání: | 2017 |
| Předmět: |
Male
0301 basic medicine Genetic Research Biomedical Research Native Hawaiian or Other Pacific Islander Best practice Context (language use) Indigenous 03 medical and health sciences 0302 clinical medicine Population Groups Humans 030212 general & internal medicine Sociology Cultural Competency Traditional knowledge Genetics (clinical) Biological Specimen Banks Community engagement business.industry Corporate governance Environmental resource management Community Participation Genomics Biobank Research Personnel 030104 developmental biology Female Engineering ethics business Cultural competence New Zealand |
| Zdroj: | Genetics in Medicine. 19:345-351 |
| ISSN: | 1098-3600 |
| DOI: | 10.1038/gim.2016.111 |
| Popis: | He Tangata Kei Tua, a relationship model for biobanks, was developed to facilitate best practice in addressing Māori ethical concerns by guiding culturally informed policy and practice for biobanks in relation to governance, operational, and community engagement activities. The model is based on key issues of relevance to Māori that were identified as part of the Health Research Council of New Zealand–funded research project, Te Mata Ira (2012–2015). This project identified Māori perspectives on biobanking and genetic research, and along with tikanga Māori it developed cultural guidelines for ethical biobanking and genetic research involving biospecimens. The model draws on a foundation of mātauranga (Indigenous knowledge) and tikanga Māori (Māori 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. This article describes the model and considers the policy and practice implications for biobanks seeking to address Māori ethical concerns. Although the model has focused on Māori aspirations in the New Zealand context, it provides a framework for considering cultural values in relation to other community or indigenous contexts. Genet Med 19 3, 345–351. |
| Databáze: | OpenAIRE |
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