Atlantic Fellowship stories: Huti Watson

In the expanding field of human genomics, Huti Watson, deputy chair of Ngāti Porou Hauora Charitable Trust (NPHCT) Board, says Ngāti Porou Hauora is a leader in developing the capability of their iwi to engage in genomic research. A Senior Fellow of the Atlantic Fellowship for Social Equity (AFSE) she says the iwi’s genome project, the ‘Genetics of Gout in Tairawhiti’ co-led with Otago University formed the platform for this work.

Huti says in order to build board capacity to engage in the genetic research space she attended the Summer Internship for Indigenous Genomics (SING) in 2017. The yearly, weeklong course is taught mostly by Indigenous faculty members, and enables people from Indigenous communities, including students, to learn about genomics and discuss its uses and misuses. Begun in the US, SING has trained nearly 150 participants and expanded to New Zealand and Canada with some of its alumni obtaining PhDs in genetics and starting their own laboratories.  “SING shows us that Indigenous world views and science can co-exist with modern Western science,” says Huti.  “It’s helping us build networks to ensure we share knowledge and are not left behind. My motto when thinking about genetics research and Indigenous people is: “we need to be in the driving seat, otherwise we will be in the back seat.”

Huti has been appointed to a leadership panel within the Institute for Environmental Science and Research (ESR), and says that resources like the Te Mata Ira (Guidelines for Genomic Research with Māori) and Te Ara Tika guidelines are gaining traction because government and other organisations are seeking to develop their own strategies in this area. Areas of special ethical consideration include the collection and use of human tissue and how they are managed culturally.

In discussion with their communities 14 years ago Ngāti Porou Hauora decided that partnering genomic research was important to ensure its people were not left behind in benefitting from the new knowledge and enhanced services that improved understandings of both genetics and environmental factors would bring, including through new precision medicine approaches. It would also help to break the ’one size fits all’ models underpinning health systems. For example, assumptions that interventions informed by research with populations of European ancestry would also work well for Māori and Pacific peoples.

Internationally, the amount of Indigenous genomic data inclusion is still low. Recent analysis shows only 22% of individuals in genome-wide association studies were of non-European ancestry with people of African and Latin American descent and Indigenous people, together, representing less than 4% of participants. The reasons behind this lack of diversity in genome research are many, including a history of Western scientific abuse. One infamous example involved Arizona State University researchers, who in the 1990s took DNA samples from members of the Havasupai Tribe in Arizona for a study on diabetes, but later used the samples without the tribe’s consent for studies on schizophrenia and patterns of population mixing and migration. In 2010, the Havasupai won a US$700,000 settlement, and the university was forced to return all the samples it had collected.

Fortunately, this situation is changing with Indigenous and community-led research and health projects being acknowledged for their effectiveness. The scientists involved, many of whom come from groups that are under-represented both in DNA databases and the research workforce, make consultation and community involvement central to their work with Indigenous populations.  A key
component in Aotearoa NZ was to identify Māori concepts that would provide cultural reference points for engaging with biobanking and genomic research.

Huti says using her networks, she is supporting efforts to reach out to other iwi to discuss the benefits and issues involved in genetic research, chiefly that it needs to be co-designed and co-led by iwi, and based on the Te Mata Ira and Te Ara Tika guidelines. “I’m not a scientist,” says Huti. “but I am able to share experiences, acknowledging that other health providers have different contexts, settings and approaches, and I will strongly advocate for Māori governance over their own data.”

This work is part of the Aotearoa Variome Project, a Māori–led, MBIE-funded initiative to assemble a genomic resource that reflects genetic variation across modern day Māori. It is hoped to become a database for accurate and precise medicine for Māori in Aotearoa. In future, knowing a Māori individual’s genetic variants will allow their doctor to give targeted health advice based on that information. “I think this kind of advice or precision medicine will turn health promotion on its head in the future,” says Huti.

She hopes to integrate her AFSE health promotion project into the regions overall health promotion strategy. Every AFSE Fellow brings a social change project to their Fellowship year however her project was put on hold due to Covid.  While Ngāti Porou has primary, secondary and clinical services in the region, Huti sees the community itself as an untapped resource to transform health.

She plans to use community development and Māori knowledge principles to work in an enabling way with whanau and hapu to intensify transformative community-led action to generate wellness. People decide what their issues and solutions are, implement them, then critically reflect, how did that go, what do we need to change?

On the East Coast, an example of this type of community development and tikanga Māori approaches underpinned the establishment of Hauiti Hauora. It is a unique example of a Māori led health promotion service that promotes health and wellbeing using tikanga Māori principles and values alongside education and prevention programmes to improve the wellbeing of whanau and hapu. These processes subsequently built community capacity and spilt over to other aspects of community life including developing a formal organization, buildings and health promotion contracts.

When they started 25 years ago it was around thinking about wellness, traditional medicine, and massage – mirimiri – techniques. They went round to elders to mirimiri and asked them while massaging so what do you think should happen in this community? “Talking to our elders first is a tikanga, and offering mirimiri to them while using it as a tool to consult was very innovative.” But the real success of this community is that they have understood the goal, that healthcare services are not seen as the sole owner of healthcare outcomes and solutions, but as an important partner within the community’s wellness framework. 

“It is frustrating when people ask why aren’t healthcare doing this, and why aren’t you doing that? I’d think to myself, what are you doing about this? We are all in this together, it’s not just up to the organization to improve wellness, there is so much each one of us can do to contribute, it’s everyone together.”