Health outcomes for Maori and Pacific people could benefit from a new approach to gathering genetic information from indigenous populations, reports 1News’ James Fleury.
New Zealanders with roots to a remote Cook Islands atoll could hold the key to understanding how genes and disease interact across the Pacific.
American company Variant Bio is using a new approach to gathering genetic information to develop drugs for obesity and diabetes.
Professor Tony Merriman from the University of Alabama told 1News working with the Pukapukan community will be a game changer for understanding Polynesian genetics and metabolic disease.
“Genetics and genomics research has been really heavily dominated by people of European ancestry, making the development of treatments difficult.”
He said the lack of understanding is partly because indigenous groups have historically been reluctant to share genetic information.
“What’s happened in the past is researchers will often go in and interact once with the community, take DNA and samples and never go back.“
South Auckland’s Nuku Rapana, originally from Pukapuka, is one of 320 people with roots to the island who submitted DNA samples.
He said working with Variant Bio has helped Pukapukans understand their health needs.
“One of the problems that we find ourselves here in New Zealand is the occurrence of diabetes and gout. Gout affects our people very badly.”
The biotech company engages with communities, learning about health priorities and each group’s unique history prior to collecting samples, Variant Bio scientist Dr Jaye Moors said.
And following a new partnership with drugmaker Novo Nordisk, indigenous groups who have participated will share a 4% stake of Variant Bio’s revenue.
“We will use our best efforts to make sure that any drugs Variant Bio ultimately develops and brings to market will be made available at an affordable price to the communities,” said Moors.
Merriman said any similar organisation partnering with minority communities will now have a bar to get over when it comes to benefit sharing.
“You know, let’s hit 5% next time,” he said.
Ethical standards and cultural sensitivity
Ngāti Porou Hauora’s Huti Watson serves on Variant Bio’s ethics and advisory board.
She said, on behalf of the iwi, they provide a critical role in ensuring the company adheres to the highest ethical standards and that cultural sensitivity is considered.
She said the company has been responsive to their input.
“If we say, you know, this is the best way, in my experience, to work with a particular indigenous population, then they generally will take that on board pretty quickly.”
She said that for many Māori, it will take a huge shift to engage or participate in genomic research.
“We know about the harms in the past around genomic testing and the assumptions that have been made around Māori in the past with what they used to call ‘the warrior gene’ – well, they call it ‘the warrior gene debacle’ – and of course we know that that’s been very detrimental towards our population.
“There’s a lot of hesitancy, there’s a lot of suspicion in our whānau, and of course, we’ve done some work in the space to not really tell other iwi what to do, but to share our journey.”
Ngāti Porou has provided leadership and had been involved in significant genomic research projects over the last two decades to create the infrastructure that allows the use of precision medicine in clinics, said Watson.
The iwi has a long-term relationship with Otago University, Auckland University, and the Maurice Wilkins Centre for Molecular Biodiversity.
“Those long-term relationships develop trust and authenticity in what it is that we do together. They take into consideration our tikanga.”
By 1News’ James Fleury
