Rakeiora Genomics Platform: building a prototype for genomic medicine in Aotearoa
Stephen Robertson2, Phillip Wilcox2, Cristin Print3, Huti Puketapu-Watson4, Helen Wihongi5, Claire Rye1, Ben Te Aika2, Donia Macartney-Coxson6, Jun Huh1, Nick Jones1, Ben Curran3, Matt Pestle1, Eirian PerkinsNo, Kenny Zhao1, Ben Halliday2, Nathalie Giraudon1 1New Zealand eScience Infrastructure, Auckland, Auckland, New Zealand2University of Otago, Dunedin New Zealand3University of Auckland, Auckland, Auckland, New Zealand4Ngāti Porou Oranga, Gisborne New Zealand5Te Whatu Ora Waitematā, Auckland, Auckland, New Zealand6Institute of Environmental Science and Research, Auckland, Auckland, New Zealand
Abstract
Rakeiora is a ‘pathfinder’ project to prototype how best to govern, acquire, protect, store and use genomic datasets for analysis to support primary and secondary health research in Aotearoa New Zealand. This kaupapa (topic, programme), at heart, is about establishing an innovative approach which embraces tikanga Māori, supports community-led approaches, action learning and ensures Māori Data Sovereignty. This approach has been applied to specific health research settings, established by co-design with Ngāti Porou Oranga and the Tairāwhiti Community in Rakeiora’s primary healthcare project, and by the Te Ira Tātai Whakaheke rōpū in Rakeiora’s secondary healthcare project in Aotearoa New Zealand. Nevertheless, much of the methodology and learning is applicable to embracing and meeting the expectations of Indigenous people in any community.
The tikanga attributes presented here, were developed early on and have been crucial to the project, underpinning the co-design approach that has been taken. There has been a genuine desire to take on board and incorporate the ideas and perspectives of not just the researchers who will use the system but of the kaitiaki (guardians), to ensure data sovereignty is respected and upheld while facilitating appropriate research and enabling improved outcomes for the individuals who are participating.
As the prototype phase concludes, we will discuss the construction of the analytical environment – the Rakeiora Genomics Platform – and reflect on the journey thus far, the design decisions, lessons learnt and, importantly, a demonstration of early results using the Rakeiora Infrastructure for both the primary and secondary care participants.
Biography
Dr Claire Rye is a Product Manager at New Zealand eScience Infrastructure (NeSI) based out of the University of Auckland. She is responsible for the National Data Transfer Service and works across the Aotearoa Genomics Data Repository and Rakeiora Pathfinder projects and looking at research data management and data lifecycle more generally across NeSI. Claire holds a PhD in organic chemistry and has spent the last 11 years working in the UK in a variety of research settings. Including working on Human Cell Atlas Data Coordination Platform, based at the European Bioinformatics Institute (EMBL-EBI).