A programme to improve genomic knowledge that will impact on the wellbeing of New Zealanders and will be co-developed and co-governed with Māori has been given the go-ahead.
MBIE is funding the Genomics Aotearoa’s Rakeiora project as a “pathfinder” programme to test options to acquire, protect, use and store genomic datasets for use in healthcare research in Aotearoa New Zealand.
The two-year programme has a budget of $4.717m. It will be co-led by Prof Cristin Print (University of Auckland), Prof Stephen Robertson (University of Otago) and Dr Phillip Wilcox (University of Otago, whose iwi affiliations are Ngāti Rakaipaaka/Rongomaiwahine/Ngāti Kahungunu) and includes Principal Investigators Dr Jennie Harré Hindmarsh (Ngāti Porou Hauora) and Dr Donia Macartney-Coxson (ESR).
Genomics is the study of the genome, the complete set of genetic material present in a cell or organism. It 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 have 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,” Dr Robertson said.
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.
This will 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 its 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.”
“This is a once in a lifetime opportunity to ensure genomic data is 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,” Dr Print added.
Direct patient care is not a specific goal of the two-year programme; the aim is rather 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.
About the Rakeiora programme
This Pathfinder programme will encompass two medium-scale research projects to maximise the Pathfinder programme’s breadth of learning and ability to scale up nationally.
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 - as well as the opportunity to work with Māori, Pasifika and Pākehā. Tertiary care is specialised consultative health care.
Organisations involved in the Rakeiora Pathfinder programme are the University of Otago, University of Auckland, ESR, and Ngāti Porou Hauora.
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
- Prof Peter Dearden, 021 176 1680
- Prof Cris Print, 021 228 4443
- Prof Stephen Robertson, 03 479 7469
- Dr Phil Wilcox, 021 387, 7892
- Mr Teepa Wawatai, 021 620 093