Understanding and supporting Whānau Consent

To scope traditional and contemporary understandings of ‘whānau consent’ in regards to genetic, tissue and organ testing, collection, donation and banking.

To understand how whānau go about gaining ‘whānau consent’ and what processes may support these conversations.

To scope ways in which we can present information about what helps and hinders whānau discussion about consent in an interactive format for whānau to view, supporting them through an informed consent process for genetic-related testing, treatment and/or research.

Genetic testing, tissue banks and data bases are increasingly becoming a part of the health landscape. Personalised or precision medicine based on genetic or tissue information has the potential to bring real health benefits to indigenous people, yet many remain wary for political, personal and ethical reasons.

A particular challenge for Māori is the tension between individual and collective consent – genes do not just provide individual information but identify much across whānau and generations. Western concepts of individual rights are insufficient to manage this process; however, individual rights are upheld in current legal and ethical consent processes in Aotearoa.

We wish to understand, and inform, the whānau consent process for genetic, tissue and other data collection, testing and research by asking: What is ‘Whānau Consent’ and what does it look like? What key pieces of information do whānau require? What helps, and hinders, whānau discussion during the informed consent process, and over time? How do we, as a research community, support a safe process for whānau? We propose kaupapa Māori qualitative research that will firstly explore these questions and secondly will scope the development of a resource for whānau to support them as they navigate the ‘whānau consent’ process.

Using a series of Hui workshops, governed by tikanga Māori, we will document discussion through story-telling and critical conversations. The hui will be video recorded and transcribed for thematic analysis. The findings, and possibly edited versions of the video, will be utilised during a scoping exercise to consider the best resource for whānau to access and use.

The research team is a collaborative of different disciplines including kaupapa Māori theorists, clinicians, health and disability ethics experts and innovators in documentary making. With such leadership, we anticipate a project that is innovative, inspiring and influential.