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Published on: August 15, 2019
Rakeiora Genomics Platform: a pathfinder for genomic medicine research in Aotearoa New Zealand
Claire E Rye1, Huti Puketapu-Watson2, Helen Wihongi3,4
1New Zealand eScience Infrastructure, University of Auckland, Auckland, Aotearoa New Zealand.
None:
The Rakeiora program was designed for high impact precision health research in Aotearoa New Zealand. It required a genomics platform to facilitate linkage of whole genome DNA sequencing data, healthcare records, and mātauranga whakapapa (genealogical knowledge) in a powerful, secure, and transparently governed computational environment. A team of Māori and non-Māori with diverse professional and cultural expertise co-developed Rakeiora; embedding te ao Māori (Māori world) was crucial, including principles derived from: tikanga Māori (Māori traditional rules, values, culture), Te Tiriti o Waitangi (agreement between the British Crown and many Māori chiefs), and data sovereignty. This internationally unique prospective hard-wiring of Indigenous values into a computational platform created a robust infrastructure which benefits all participants. Application of best practice standards and tools facilitate transparency, provide kaitiaki (guardians) control and governance over data and analyses, and enable genomic, bioinformatic and statistical analyses by researchers within a computational 'walled garden'. Although a prototype, the platform is designed to be scalable, accommodating diverse data types and communities, each with their own specific interests and needs. This paper outlines part of the Rakeiora program - the creation, development and technological aspects of the genomic analysis platform and its potential to enable precision health research in Aotearoa.
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