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Is Whakapapa The Answer To Better Health Treatment?

Emma Andrews, Henare te Ua Māori Journalism Intern

Researchers have developed a prototype platform to incorporate whakapapa with biomedical science to provide better treatment plans for Māori and minority communities.

The Rakeiora Genomics Platform uses genome DNA sequencing data, healthcare records and mātauranga whakapapa data to provide researchers with more accurate information on a person's health.

Associate Professor Phillip Wilcox (Ngāti Rakaipaaka, Rongomaiwahine, Ngāti Kahungnunu ki te Wairoa, Te Aitanga-a-Mahaki), a quantitative geneticist and bioethicist at University of Otago, said the research described the development of a bespoke data access and analysis platform for application in precision health research.

"The idea of precision health is that treatments, medication 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, like the genealogical component of whakapapa, in a te ao Māori setting, rather than a 'one-size fits all' style model."

The research, carried out over a four-year period included two case studies that helped demonstrate the application of the platform for precision health research in Aotearoa, using and generating clinically relevant results across in primary care and in a tertiary care oncology setting, Wilcox said.

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Precision medicine - also known as genomic medicine or personalised medicine - uses a person's genetic information to help medical professionals carry out screening, diagnosing and treating patients more accurately, while reducing adverse drug reactions.

"Within this precision health space, because we have very low representation of Māori in these datasets, we need to create our own, which means we need bespoke approaches, because Māori have unique disease etiologies, or underpinning biology to disease is unique, unique pathway to interventions as well."

Before whakapapa information is used, its tapu nature means an environment needs to be established, where data use could be controlled by Māori, he said.

"The Rakeiora platform - using tools from mostly from overseas, some local - is designed to provide Māori communities and other communities with the opportunity to have governance over their taonga, their own whakapapa information."

Some communities have already made enquiries.

Ruling out a trial-and-error approach

How precision medicine works is, if someone is mis-prescribed warfarin, for example, without knowing if their body can metabolise the drug properly, due to their genetic make-up, it could lead to negative outcomes.

Medicating someone properly with DNA information can eliminate the grey area between 'can I or can't I have this drug?' It also provides a deeper understanding of an individual, when calculating disease risk.

When a person goes to a general practitioner with symptoms of a particular disease, the doctor may go over a person's information, such as age and sex, statistics according to the information provided and ask further questions to determine a diagnosis, Wilcox described.

Theoretically, the doctor might say 'you've got a risk of a severe cardiac event of X'.

"Now that X comes with quite a lot of imprecision around the estimate," he said. "DNA information can provide information to clinicians about somebody's risk of a disease or a risk of a condition, it gives you a more precise estimate of what that probability is."

In other instances, where there is no intervention or cure, such as age-related macular degeneration (AMD), patients can either slow progress or make changes in their lives in preparation.

"Some people will still want to know what their disease outcomes are going to be, so that they can prepare for it or they can prepare family members," Wilcox said. "Precision medicine is kind of a frontier of medicine, it sits alongside AI as being one of those frontier areas."

Putting science into practice

In England, the National Health Service (NHS) has developed and invested in its own Genomic Medicine Service.

In October 2022, the NHS produced a five-year genomic strategy that predicts, prevents, diagnoses and targets disease, making it accessible for all people in the NHS system.

Using the history of providing services, the 'evolutionary' 100,000 Genomes Project drove at scale and pace, because it was centrally funded, England's Professor Dame Sue Hill announced at a PHG Foundation conference in 2023.

"It enables genomics to be at the forefront of data and digital and the revolution there, so that it can bring together genomic data with other clinical data to inform genotype (genetic traits)/phenotype (physical traits) correlations," Hill said.

Again in 2022, $5 billion was spent on public funding for health relevant research alone, according to UK Research and Innovation, which is broken into $2.8 billion on research projects, $1.4 billion on infrastructure and other indirect support, and $865 million on health-relevant support funding.

"They've done so on the basis that these more accurate prescribing can reduce costs and does reduce costs," Wilcox said.

"When you've got whakapapa information, that's much cheaper to obtain in theory - I'll put it this way, whakapapa can save [Aotearoa], my calculation was up to $200 million."

For precision medicine to become available in New Zealand, the Genomics Aotearoa website states it would require new tools, practices and computing resources.

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