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.

Biobanking: Relational obligations.

The nature of the relationship between the donor and donee within a biobanking framework is complex and dynamic. Issues such as ownership, rights and benefits often influence outcomes and access for researchers. In New Zealand, a raft of soft and hard law measures exist unconvincingly to govern this relationship. This article examines the current legislative provisions in New Zealand and explores possible avenues such as dynamic and broad consent, equity and contract that may provide a more appropriate framework for biobanking donors and donees.

Therapeutic jurisprudence and mental health courts for Maori.

For Maori, indigenous peoples of New Zealand, the Treaty of Waitangi required the Crown to protect all the treasures of Maori. This has been taken to include health and cultural concepts, values and practices. Despite this guarantee studies indicate that half of all Maori will develop a mental disorder within their lifetime. Failure by the Crown to provide adequate services has led to those who have already developed a mental illness more predisposed to engage in behaviour that the law regards as criminal. This article suggests that the Treaty principles such as partnership, active protection and participation place an onus upon the Crown to protect and provide for the health needs and cultural identity of Maori. It is proposed that a Mental Health Court underpinned by therapeutic jurisprudence can provide a solution.