PUKUmahi!: Kia whai te huarahi tika. NETwork! Roadmap for safe travel: Ensuring health benefits flow on to Māori

Abstract

Neuroendocrine tumours (NET) are complex and variable, making it very difficult for clinicians to determine the best course of treatment. The NETwork project seeks to better understand the epidemiological impact of NETs in New Zealand, and to better characterise the disease to help inform oncologists how to treat it. The estimated incidence rate of patients with NETs in New Zealand is approximately 200 patients per year, however the impact among Māori is not yet known. Māori are disproportionately burdened by cancers of the lungs, stomach, and pancreas, so it is tempting to speculate that NET incidence among Māori could also be high. It is essential that Māori are involved in the study in order to get an accurate indication of the impact of this cancer in New Zealand, what genes are driving the cancers, and how each can be treated. The multi-faceted NETwork project combines epidemiological analysis and deep genome sequencing of retrospective and prospective NET tissues. Under the guidelines set out in Te Ara Tika, the design of this research project is mainstream, but is likely to involve Māori participants and have direct relevance to Māori. Despite being neither Māori-centred nor Kaupapa Māori in our approach, the NETwork team are dedicated to honouring the Treaty of Waitangi principles of partnership, participation, and protection. Mindful of the past transgressions involving the use of tissues and genetic information obtained from indigenous populations here in New Zealand and overseas, the NETwork group are keen not to repeat these errors themselves, nor facilitate the opportunity for others to do so. Following ongoing consultation with Te Mata Ira, Maui Hudson, Dr Helen Wihongi, and Associate Professor Papaarangi Reid, we have established a ‘roadmap for safe travel’ to guide all aspects of the multi-faceted project. The framework has three key principles (kawa) underpinning its Governance structure, and three core cultural protocols (tikanga) to be incorporated into the implementation strategies. Adhering to these kawa and tikanga should facilitate the establishment and maintenance of relationships with key stakeholders; a vital aspect to the project. The roadmap for safe travel is still in its early stages of development, and consultation is ongoing. Nevertheless, the NETwork team have a strong platform from which to further develop their project. Although the presented framework is specific to the NETwork project, it could easily be adjusted and utilised for other clinical and biomedical projects.