Gene editing technology could make vast improvements to the health of Māori communities, but is it ethical?
A church hall in Te Aroha, on the remote East Coast New Zealand, erupts into laughter. “Enough korero, just take it already” he says offering a beefy forearm, veins up. There’s widespread laughter and heckling from the back, but the moment is a subtly delicate one. The culmination of more than three years work of consultation among Māori communities on what to do about gout.
Here, Māori die young. Gout and other metabolic diseases are rife in East Coast communities. It is becoming increasingly clear that in addition to social factors like diet, significant genetic components exist that put some populations at greater risk. The ABCC2 gene, linked to these conditions, is particularly prevalent in Māori communities such as this, and are linked to the high levels of disease. Local tribal group Ngāti Porou are looking at what to do about it, investigating the use of genetic tools to work for the betterment of their people.
“The goal is to help our people live longer, and live well” says Jennie Harré Hindmarsh, health improvement officer at Ngati Porou Hauora.
“The people were saying to us, ‘We’re sick of being afflicted like this’… the genetics kept coming up, and we went to the communities and said, is this something you think we should get involved in?” Harré Hindmarsh carries a gently powerful presence, “We had started that conversation, and then came Crispr.”
If advances in genetics are fast, then gene-editing technology is light speed. Since the ‘Crispr’ enzyme [Clustered Regularly Interspaced Short Palindromic Repeats] was discovered in 2008, the possibility of ‘gene editing’ has drastically changed how we think of genetics, genomics and our futures. Often referred to as the ‘genetic scissors’, Crispr Cas9 is an enzyme that can easily ‘cut’ a genome, the long sequences of genes that encode all life. The Crispr enzyme ‘snips’ the sequence at the exact gene of interest, allowing scientists to swap out one gene for another, turn a gene ‘off’ or modify the way the gene is expressed. Of the 25,000 genes already identified in the human genome, mutations in more than 3000 have been linked to disease. Researchers in all areas have been fast to adopt the editing technology and its obvious potential to change peoples’ lives – including in the area of metabolic disease. Crispr CAS9 will give us real power to re-write the very code of life as we know it, in ourselves and the world around us.
But should we?
“Whakapapa; past, genealogy, is all very important to Māori” says Harré Hindmarsh.
The Māori sense of place, both physical and spiritual, is deeply nested in their connection to the past, to their ancestors and their history.
“DNA is Taonga. So we went to the people and asked ‘How does this this fit in?’”
Crispr CAS9 will give us real power to re-write the very code of life as we know it, in ourselves and the world around us.
The group helped develop ‘Te Mata Ira – Māori guidelines for genomic research’ and talked, constantly, with their community about the research and health. It was three years of conversation before any genetics work actually began, and over the past decade researchers from Otago University have made the long trek to the rugged East Coast more than 20 times.
“In the end they said, ‘We trust you, with this gift of our DNA, our whakapapa. We trust you to look after our family, both past and future, and to keep coming back.”
A cold wind drives in off Cape Cod, rattling the windows on Nantucket Island, Massachusetts. In another hall on the other side of the planet, another community have gathered. Kevin Esvelt – a player in the very development of the Cispr system, is here to talk to about gene editing, not in humans but in mice. Kevin’s lab at MIT have isolated a gene in mainland mice which offers them greater resistance to ticks. Increasing the prevalence of the gene in the islands’ mice population would lower tick-based transmission of Lymes Disease – a nasty infection that affects up to 30 percent of people living on the island. There’s clear potential to improve the lives of islanders through editing the genetic composition of their mice.
But should they?
“It’s not us who decide this. We made this tool but it’s you who decide if you want to use it. If you should use it.” A star boy of the genomics revolution, Esvelt is young, and ambitious. Having worked at prestigious institutions like Harvard Medical and the Weiss Institute, Esvelt knows how science works. But he’s wary:
“You don’t have the right to just go into your lab and build something that is ineluctably designed to affect people, (affect) entire ecosystems. Doing that in secret denies people a voice.”
He’s wary of the pitfalls of the past, the fear and misinformation around GMO, as just one example.
“The closed-door model (to science) is just morally unacceptable.”
At best disengaged, at worst totally distrusting, he sees a public that is largely excluded from scientific process and debate. Esvelt sees the opportunity to do things differently.
“That’s why I’m here, now. Not in three years. Not in five years. We don’t even know if this is possible. But you guys need to be involved. From the start. Say no and we pack up and go home. Easy as that.” He smiles, continuously.
And in the cutthroat world of medical and genetic research, his MIT ‘Sculpting Evolution’ Lab do run things in a startlingly different way. They publish all research proposals before they begin, in-progress manuscripts are publically viewable online and there is genuine and ongoing discussion with the community to direct projects like this. And it’s this totally open approach to science that Esvelt believes can edit not just genes, but science itself.
With genomics “it’s impossible to ignore that these things will affect us all, that these decisions belong to everyone.”
There is real opportunity to change.
And on the East Coast of New Zealand, Jennie Harré Hindmarsh agrees.
“There is great possibility there, get the process right and reap the benefits. And that’s social, cultural and scientific”.
If these tools are to succeed it will take more than skills in the lab. The Māori way, the community and the communication, has a lot to offer back to science.
“How we do things, that would help them I think, that would help those scientists.”