Key informant views on biobanking and genomic research with Maori

Abstract or Summary

The aim of the Te Mata Ira project was to explore Maori views on biobanking and genomic research, and to identify ways to address Maori concerns over the collection and use of human tissue. Key informant interviews and workshops were conducted with Maori to identify Maori views in relation to biobanking and genomic research; and, informed by these views, interviews and workshops were conducted with Maori and non-Maori key informants (Indigenous Advisory Panel (IAP) members and science communities) to explore key issues in relation to Maori participation in biobanking and genomic research. Maori key informants identified the following as key deliberations: (1) the tension for Maori between previous well-publicised negative experiences with genomic research and the potential value for whanau and communities as technologies develop, (2) protection of Maori rights and interest, (3) focus on Maori health priorities, (4) control of samples and data, (5) expectations of consultation and consent and (6) a desire for greater feedback and communication. Maori and non-Maori key informants highlighted the need to enhance levels of Maori 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 Maori communities feel that their whakapapa, rights and interests are being appropriately protected.