The University of Waikato is hosting the first ever SING Indigenous Genomics Conference as international scientists gather to discuss how they can work together.
The Summer Internship for Indigenous Genomics (SING) Consortia, which has organised the event, has been running workshops in America, Canada, Australia and New Zealand for the past 10 years. A combined workshop has been running in Raglan since Monday to plan for the future of the consortia and prepare for the conference.
Associate Professor from the university’s Faculty of Māori and Indigenous Studies, Maui Hudson, said it’s the first time a conference has focussed specifically on the field of Indigenous genomics and with papers presented entirely by Indigenous speakers.
“While there is a growing interest in working with Indigenous genomes, from both people and the environment in research worldwide, there are only a small number of Indigenous people internationally working in this field.”
He said genomics research as a field was shifting from just being available for people with rare diseases and cancers, to a place where, over time, genome sequences would become a normal part of peoples’ medical records and would be used to target medicines specific for a patients’ genetic makeup.
The problem for Indigenous populations, however, was the reference genomes used to inform precision medicine have been produced for European populations.
Dr Phil Wilcox from the University of Otago is currently leading work in New Zealand to create a reference genome for the Māori population, which could be used as a basis for clinical diagnoses around genetic conditions specific to Māori. There was similar work happening with some First Nations communities in Canada too.
“We know if we want to create precision medicines for Indigenous communities, we need population specific reference genomes for Indigenous communities, and that’s what this work is about.”
However, he said there were often challenges around that work happening.
“A history of marginalisation and mistrust of genetic research and, in particular, the treatment and storage of tissue used in genome research has been a large barrier for Indigenous peoples,” he said.
As a result, Professor Hudson, Dr Wilcox and their colleagues created the world’s first Indigenous led guidelines for research with Māori.
“What we found was while there had been a general aversion of getting involved in genetic research, a number of Māori have conditions that require this kind of intervention and they don’t really have a choice.”
He said for Māori, concerns centred on the protection of whakapapa and through their work they had adopted the concept of Tākoha.
He said koha is often conceptualised as a gift. Tākoha is a form of gifting that recognises the tapu associated with a gift and indicates that conditions are to be applied to the taonga being gifted.
“It is centred on the idea that the gift being given when people participate in genome research is the gift of responsibility, rather than physical tissue samples themselves. The Te Mata Ira guidelines outline what those responsibilities look like.”
Professor Hudson shared information about his latest project to develop biocultural labels at the conference. The labels are designed to create transparency around research with Indigenous genomes, integrity in how the information is being used, and maintain the provenance of the information over time to ensure participants continued to benefit from any future developments.
Dr Katharina Ruckstuhl, another of the co-conveners of SING Aotearoa, felt the presentations at the SING Indigenous Genomics Conference shared ideas from other Indigenous communities about the nature of responsible genomic research.
“The conference gives us a chance to explore how the SING consortia can expand training to other communities around the globe including non-Indigenous science communities,” she said.
