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Rakeiora: ground-breaking research guides the path to precision healthcare

Precision medicine (also known as personalised medicine) helps guide healthcare providers’  understanding of genetic contributions to a patient’s health, susceptibility or resilience to disease,  and their response to therapeutic interventions. Aotearoa’s current precision health research  and practice ecosystem is relatively scattered, with academic research programmes, hospital services, clinical trials, government initiatives and private health care providers all contributing.

Braided river

Our work
The nationally scalable prototype computational infrastructure developed through the Rakeiora project links together whole genome sequence data and healthcare information for individuals and whānau. 

It is flexible enough to allow different types of federated storage for genomic data from different groups. A powerful but secure “walled garden” environment is used by researchers to analyse the data, while upholding kaitiakitanga (guardianship) and data sovereignty principles consistent with Te Tiriti o Waitangi. 

The Rakeiora prototype also aspires to also incorporate whakapapa (genealogy) alongside genomic and healthcare information. This nationally scalable prototype provides an evidence base for a new model of healthcare and opens many opportunities for research. 

The impact

Genomically informed precision health in Aotearoa ultimately will lead to improved healthcare for all New Zealanders. One of the most significant outcomes is that the project's approach ensures Māori have the greatest opportunity to derive value from precision health. 

This has been through deliberate co-design, co-governance and co-innovation with Māori, respecting Māori data sovereignty, CARE (Collective benefit, Authority to control, Responsibility, Ethics) and FAIR (Findable, Accessible, Interoperable, Reusable) principles and the principle of tino rangatiratanga over Māori genomic resources and Māori hauora data. 

Stephen Robertson, one of the Rakeiora co-leads, said the equity-driven hard wiring of indigenous values into a nationally scalable genomic research infrastructure is, as a far as we know, unique and strengthens the Rakeiora infrastructure for Māori and non-Māori alike. 

“The inclusion of mātauranga by Māori to the project generates a far better infrastructure than would otherwise be possible.” The Rakeiora infrastructure includes specific procedures for data security and privacy, and aims to ensure that individuals, whānau, iwi, mātāwaka (urban Māori communities and organisations) as well as non-Māori communities can maintain control and sovereignty over their genomic information.

Effective collaboration promoted the inter-weaving of tikanga Māori and western science into the project’s processes and protocols.

Read more about Rakeiora here