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Rakeiora: A pathfinder for genomic medicine in Aotearoa/New Zealand

A programme to improve genomic knowledge that will impact on the wellbeing of New Zealanders is being co-developed and co-governed with Māori. It is a “pathfinder” to test options to acquire, protect, use and store genomic datasets for use in healthcare research in Aotearoa New Zealand.

Genomics is an area of research that underpins genetic or molecular profiling for precision medicine. Human genomics is seeing rapid global growth, but to maximise its benefits for New Zealand we need to be mindful of our unique cultural and genetic composition, significant health inequities and historical misuses of genomics. Therefore, we cannot simply adopt methods developed overseas.

Solutions are needed that work for New Zealand populations, especially those with Māori or Pacific descent. Research has shown that currently available health-related genetic information from other populations has limited applicability to Māori and Pacific peoples. 

We require coherent national processes to bring together genomic data with multiple other forms of health-related information from multiple spheres of research and practice to benefit all New Zealanders. This means co-developing with Māori a foundation for an innovative and scalable national genomics research infrastructure to manage and govern data, its ownership and guardianship, including New Zealand-specific genomic databases. The aim is to enable researchers to translate genomic knowledge into health practices that advance the wellbeing of New Zealanders, and in particular address the country’s health inequities by developing genomic tools that put the needs and priorities of Māori at the centre.

Ngāti Porou Hauora Chair Teepa Wawatai is looking forward to working with the Rakeiora partnership as it ventures into new horizons. “Aeons ago our ancestors raised their vision beyond the horizon and set their sails to discover new land, a place that would sustain life, where they could stand and flourish. Genomics is the new horizon and within it lies new ground waiting to be explored; yielding treasure that will enrich our lives. Our tipuna closely held the secrets of navigating a pathway across the ocean so they could find their way back again. As it was then, so it is today. Ngāti Porou, with our partners, want to chart a sure course, a safe way, and a secure place to store sacred treasure and utilise it for wide benefit.”

Jennie Harre Hindmarsh, Phil Wilcox, Cris Print

Researchers Jennie Harré Hindmarsh (Ngāti Porou Hauroa), Phil Wilcox (University of Otago), Cris Print (University of Auckland)

“This is a once in a lifetime opportunity to ensure genomic data are collected and used appropriately to benefit all New Zealanders, especially Māori and Pacific peoples, including people with cancer. By co-designing and co-governing this genomic data analysis with Māori colleagues, we want to reduce health inequities and expand Māori leadership in this exciting research field,” programme co-lead Cristin Print added.

About the programme

The aim is to maximise our ability to scale up genomics nationally and to inform future precision health research and practice for genomic data use in New Zealand. Direct patient care is not a specific goal of the two-year programme.

The Rakeiora programme encompasses two medium-scale research projects. Two exemplar populations will provide complementary information, giving representation of health and genomic data at two ends of the spectrum rural Tairāwhiti (East Coast) and urban Auckland, and primary care and tertiary care (tertiary care is specialised consultative health care, and in this project has a cancer focus) as well as the opportunity to work with Māori, Pasifika and Pākehā.

More details on the projects are in this interview with Jamie Morton for the NZ Herald  (2 December 2019).

Stephen Robertson, Donia Macartney-Coxson

Researchers Stephen Robertson (University of Otago), Donia Macartney-Coxson (ESR)

Outcomes

The expected outcomes will include:

  • Genome sequences from hundreds of individuals co-led and co-governed with Māori and stored securely but accessible for ethically approved and consented research
  • Data linkable and protected with careful governance and approval to primary and secondary care health data and National Health Datasets
  • Recommendations for process scale up
  • Knowledge on how to apply research for health benefits

Team

  • Dr Phil Wilcox (University of Otago) (iwi affiliations Ngāti Rakaipaaka, Rongomaiwahine, Ngāti Kahungunu) – co-lead researcher
  • Professor Cris Print (University of Auckland) – co-lead researcher
  • Professor Stephen Robertson (University of Otago) – co-lead researcher
  • Dr Jennie Harré Hindmarsh, Ngāti Porou Hauroa
  • Dr Donia Macartney-Coxson, ESR