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dc.contributor.authorHudson, Mauien_NZ
dc.contributor.authorSouthey, Kimen_NZ
dc.contributor.authorUerata, Lynleyen_NZ
dc.contributor.authorBeaton, Angelaen_NZ
dc.contributor.authorMilne, Moeen_NZ
dc.contributor.authorRussell, Khylaen_NZ
dc.contributor.authorSmith, Barryen_NZ
dc.contributor.authorWilcox, Phillip L.en_NZ
dc.contributor.authorToki, Valmaineen_NZ
dc.contributor.authorCheung, Melanieen_NZ
dc.contributor.authorPort, Waioraen_NZ
dc.date.accessioned2017-10-27T01:14:55Z
dc.date.available2016en_NZ
dc.date.available2017-10-27T01:14:55Z
dc.date.issued2016en_NZ
dc.identifier.citationHudson, M., Southey, K., Uerata, L., Beaton, A., Milne, M., Russell, K., … Port, W. (2016). Key informant views on biobanking and genomic research with māori. New Zealand Medical Journal, 129(1447), 29–42.en
dc.identifier.issn0028-8446en_NZ
dc.identifier.urihttps://hdl.handle.net/10289/11436
dc.description.abstractThe 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 whanau 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_NZ
dc.format.mimetypeapplication/pdf
dc.language.isoen
dc.publisherNew Zealand Medical Association
dc.relation.urihttps://www.nzma.org.nz/journal/read-the-journal/all-issues/2010-2019/2016/vol-129-no-1447-16-december-2016/7102
dc.rights© 2016 NZMA. Used with permission.
dc.titleKey informant views on biobanking and genomic research with māorien_NZ
dc.typeJournal Article
dc.relation.isPartOfNew Zealand Medical Journalen_NZ
pubs.begin-page29
pubs.elements-id192015
pubs.end-page42
pubs.issue1447en_NZ
pubs.publication-statusPublisheden_NZ
pubs.volume129en_NZ
dc.identifier.eissn1175-8716en_NZ


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