Home > Review Articles > Cultural considerations > Engaging Māori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities

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

Making Education Easy

From Māori Health Review Issue 67
Authors:
  • Beaton A et al.
Summary:

This paper describes the development of a relationship model for biobanks, He Tangata Kei Tua, that will enable best practice by addressing Māori ethical concerns. This model is intended to guide culturally informed policy and practice for biobanks in relation to governance, operational, and community engagement activities. The model is derived from key issues of relevance to Māori, which were identified by the Te Mata Ira research project conducted in 2012–2015. Te Mata Ira identified Māori perspectives on biobanking and genetic research, and together 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).

Comment:
Having seen the negative consequences of tissue banks and genomic research for Māori, I also recognise that Māori have the right to be fully informed about these activities, and consent to take part once informed consent is provided. As the authors suggest, there is the potential for this type of research to be leading-edge and innovative, and we don’t want to perpetuate health inequities by excluding people from sharing in the benefits of genomic medicine. I’d like to see this further ‘un-picked’ with regard to whānau or collective consent.
Reference: Genetics Med. 2017;19:345-51
Abstract
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Independent commentary by Dr. Matire Hardwood

Dr Matire Harwood (Ngapuhi) has worked in Hauora Māori, primary health and rehabilitation settings as clinician and researcher since graduating from Auckland Medical School in 1994. She also holds positions on a number of boards, committees and advisory groups including the Health Research Council. Matire lives in Auckland with her whānau including partner Haunui and two young children Te Rangiura and Waimarie.

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