Understanding the unique variation in the Aotearoa population and its health consequences is essential for accurate diagnosis and the effective use of genomics in our own healthcare. The Aotearoa New Zealand Genomic Variome project is developing a genomic catalogue; researchers have been sequencing the genomes of New Zealanders and identifying the variation inherent in these genomes to better document and understand variations within our population.
What we are doing
When engaging with communities, recruiting Māori participants is a fundamental step.
Cinnamon Lindsay-Latimer, a Māori researcher for Hāpai Te Hauora, which holds the regional Māori public health contract for Tāmaki Makaurau Auckland, has developed a successful strategy that has boosted the number of participants in the project, and is also helping Māori understand the importance of the mahi.
Cinnamon has attended events around Tāmaki Makaurau, including those celebrating Matariki, to talk to people and ask for participants, with the aim of building trust, acknowledging the Te Ao Māori view on DNA as taonga, demystifying genomics and increasing understanding of the potential benefits for Māori health.
“We’ve had considerable buy-in, particularly from young people; I think because we’re layering this with tikanga. Volunteers trust the organisations backing the project, they are reassured the University of Otago has processes that keeps their information safe and are impressed that a karakia accompanies their DNA sample. It makes sense to them.
They see the real-life examples in our handout where it has taken years to trace and treat genetic problems in a family, whenas a Variome will mean understanding the heritability of a disorder could take only a matter of weeks,” Cinnamon said.
“The lovely thing is that the participants go home to their whānau excited about being involved in something that will make a difference, and the whole whānau want to sign up.
Unfortunately, they can’t because we want to get as diverse a representation of the population as possible. But it shows its being talked about – it is interpreting the science, and it’s moving us beyond historical mamae in this space. They see good in it, and they see that their huge gift of DNA is respected. I’ve been blown away by the positive responses. It’s a project I’ve loved being part of.”
Critical to this project is that it is Māori-led, with co-development of processes that ensure consenting is carried out effectively and appropriately, and that benefits from the data and kaitiakitanga are consistent with Te Ao Māori. This project is ensuring research outcomes are equitable, benefit the wider community, and address concerns regarding ethical use and security of data.
Read more about the Aotearoa New Zealand Genomic Variome here