Media release

From: Written comment from study co-author

Associate Professor Phillip Wilcox (Ngāti Rakaipaaka, Rongomaiwahine, Ngāti Kahungnunu ki te Wairoa, Te Aitanga-a-Mahaki), Department of Mathematics and Statistics, Kaikōkiri Māori, Genetics Mātai Ira, University of Otago, comments:

"The publication describes the development of a bespoke data access and analysis platform for application in precision health research. The idea of precision health is that treatments, medications and even prevention of diseases can be tailored to the individual person, using the individual’s information such as their genome and other genetic information, for example, the genealogical component of whakapapa in a te ao Māori setting, rather than a ‘one-size fits all’ style model. Methods and tools developed in a research setting then feed into improving clinical practice and ultimately patients’ lives. Aotearoa/New Zealand is a lot earlier on this journey than the likes of the National Health Service (NHS) in the UK, and needs to develop its own paths to implementing precision health. The bespoke platform described here began with defining the desired attributes from tikanga Māori (Māori traditional rules, values, culture), Te Tiriti o Waitangi (agreement between the British Crown and many Māori chiefs), and Māori data sovereignty principles that implement  a new level of transparency and control over how participant data is used.

"Key to this was enabling kaitiaki (guardianship) control and governance over genome, health and whakapapa information, and the resulting analyses generated by the researchers in the computational environment known as a ‘walled garden’, with no data accessed or used without explicit permission and controls.

"Two case studies were included which help demonstrate the application of the platform for precision health research in Aotearoa using the and generating clinically relevant results across two diverse cohorts, one in Primary care and another in a Tertiary care oncology setting. Although the platform was designed using te ao Māori related principles, it can accommodate any community who desires control over their health and genetic information. Moreover the platform is both flexible and scalable, therefore we believe it has the it has potential to support a range of precision health research to benefit all New Zealanders. We have already received enquiries from various communities (including non-Māori communities) regarding use of the platform.”

Contact details for Associate Professor Wilcox are available on the sidebar (for logged-in journalists only).