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.

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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