Engaging Maori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities.

PURPOSE: He Tangata Kei Tua, a relationship model for biobanks, was developed to facilitate best practice in addressing Maori ethical concerns by guiding culturally informed policy and practice for biobanks in relation to governance, operational, and community engagement activities. METHODS: The model is based on key issues of relevance to Maori that were identified as part of the Health Research Council of New Zealand-funded research project, Te Mata Ira (2012-2015). RESULTS: This project identified Maori perspectives on biobanking and genetic research, and along with tikanga Maori it developed cultural guidelines for ethical biobanking and genetic research involving biospecimens. The model draws on a foundation of matauranga (Indigenous knowledge) and tikanga Maori (Maori protocols and practices) and will be useful for biobanks, researchers, ethics committee members, and those who engage in consultation or advice about biobanking in local, regional, national, or international settings. CONCLUSION: This article describes the model and considers the policy and practice implications for biobanks seeking to address Maori ethical concerns. Although the model has focused on Maori aspirations in the New Zealand context, it provides a framework for considering cultural values in relation to other community or indigenous contexts.Genet Med 19 3, 345-351.

Key informant views on biobanking and genomic research with Maori.

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.