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 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.