Key informant views on biobanking and genomic research with Māori

ResearchSpace/Manakin Repository

Show simple item record Hudson, ML en Southey, K en Uerata, L en Beaton, A en Milne, M en Russell, K en Smith, B en Wilcox, PL en Toki, VM en Cheung, Melanie en Port, W en 2018-10-23T03:20:19Z en 2016-12-16 en
dc.identifier.citation New Zealand Medical Journal 129(1447):29-42 16 Dec 2016 en
dc.identifier.issn 0028-8446 en
dc.identifier.uri en
dc.description.abstract The aim of the Te Mata Ira project was to explore Māori views on biobanking and genomic research, and to identify ways to address Māori concerns over the collection and use of human tissue. Key informant interviews and workshops were conducted with Māori to identify Māori views in relation to biobanking and genomic research; and, informed by these views, interviews and workshops were conducted with Māori and non-Māori key informants (Indigenous Advisory Panel (IAP) members and science communities) to explore key issues in relation to Māori participation in biobanking and genomic research. Māori key informants identified the following as key deliberations: (1) the tension for Māori between previous well-publicised negative experiences with genomic research and the potential value for whānau and communities as technologies develop, (2) protection of Māori rights and interest, (3) focus on Māori health priorities, (4) control of samples and data, (5) expectations of consultation and consent and (6) a desire for greater feedback and communication. Māori and non-Māori key informants highlighted the need to enhance levels of Māori participation in the governance of genomic research and biobanking initiatives, and acknowledged that only by increasing the level of transparency and accountability in relation to these activities will Māori communities feel that their whakapapa, rights and interests are being appropriately protected. en
dc.publisher New Zealand Medical Association en
dc.relation.ispartofseries New Zealand Medical Journal en
dc.rights Items in ResearchSpace are protected by copyright, with all rights reserved, unless otherwise indicated. Previously published items are made available in accordance with the copyright policy of the publisher. en
dc.rights.uri en
dc.rights.uri en
dc.title Key informant views on biobanking and genomic research with Māori en
dc.type Journal Article en
pubs.issue 1447 en
pubs.begin-page 29 en
pubs.volume 129 en
dc.rights.holder Copyright: New Zealand Medical Association en en
pubs.end-page 42 en
dc.rights.accessrights en
pubs.subtype Article en
pubs.elements-id 687410 en
dc.identifier.eissn 1175-8716 en
pubs.record-created-at-source-date 2017-10-09 en

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