title: Key informant views on biobanking and genomic research with Māori.
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.
authors.affiliation: Māori and Indigenous Governance Centre, University of Waikato, Hamilton.
authors.forename: Maui
authors.initials: M
authors.lastname: Hudson
authors.affiliation: Independent Researcher, Hamilton.
authors.forename: Kim
authors.initials: K
authors.lastname: Southey
authors.affiliation: Independent Researcher, Hamilton.
authors.forename: Lynley
authors.initials: L
authors.lastname: Uerata
authors.affiliation: Health and Social Practice, Waikato Institute of Technology, Hamilton.
authors.forename: Angela
authors.initials: A
authors.lastname: Beaton
authors.affiliation: Independent Researcher, Northland.
authors.forename: Moe
authors.initials: M
authors.lastname: Milne
authors.affiliation: Otago Polytechnic, Waikouaiti.
authors.forename: Khyla
authors.initials: K
authors.lastname: Russell
authors.affiliation: Planning and Funding, Lakes DHB, Rotorua.
authors.forename: Barry
authors.initials: B
authors.lastname: Smith
authors.affiliation: Department of Statistics, University of Otago, Dunedin.
authors.forename: Phillip
authors.initials: P
authors.lastname: Wilcox
authors.affiliation: Faculty of Law, University of Waikato, Hamilton.
authors.forename: Valmaine
authors.initials: V
authors.lastname: Toki
authors.affiliation: Centre for Brain Research, University of Auckland, Auckland, Waiora Port, Independent Researcher, Hamilton.
authors.forename: Melanie
authors.initials: M
authors.lastname: Cheung
mesh_terms: D018070:Biological Specimen Banks / Q000458:organization & administration*; D023281:Genomics / Q000379:methods*; D006292:Health Priorities; D006303:Health Services, Indigenous; D006801:Humans; D009520:New Zealand