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

Abstract

Purpose: He Tangata Kei Tua, a relationship model for biobanks, was developed to facilitate best practice in addressing Māori 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 Māori 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 Māori perspectives on biobanking and genetic research, and along with tikanga Māori it developed cultural guidelines for ethical biobanking and genetic research involving biospecimens. The model draws on a foundation of mātauranga (Indigenous knowledge) and tikanga Māori (Māori 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 Māori ethical concerns. Although the model has focused on Māori 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.