Rye Claire E, Puketapu-Watson Huti, Wihongi Helen, Aika Ben Te, Macartney-Coxson Donia, de Ligt Joep, Print Cristin G, Le Quesne Stabej Polona, Tsai Peter, Curran Ben, Jones Nick, Huh Jun, Perkins E Owen, Pestle Matt, Zhao Kenny, Halytskyy Yuriy, Robertson Stephen P, Halliday Benjamin J, Goodin Elizabeth, Markie David M, Lamont Alastair, Wilcox Phillip
New Zealand eScience Infrastructure, University of Auckland, Auckland, Aotearoa New Zealand.
Ngāti Porou Oranga, Gisborne, Aotearoa New Zealand.
J R Soc N Z. 2025 Mar 24;55(6):2481-2505. doi: 10.1080/03036758.2025.2469626. eCollection 2025.
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.
拉凯奥拉项目旨在新西兰奥塔哥开展具有高影响力的精准健康研究。该项目需要一个基因组学平台，以便在强大、安全且管理透明的计算环境中，将全基因组DNA测序数据、医疗记录和毛利族谱知识（家谱知识）相联系。一个由毛利人和非毛利人组成的团队，凭借多样的专业和文化专长共同开发了拉凯奥拉项目；融入毛利世界至关重要，包括源自毛利传统规则（毛利传统规则、价值观、文化）、《怀唐伊条约》（英国王室与众多毛利酋长之间的协议）以及数据主权的原则。这种将本土价值观前瞻性地、独特地融入计算平台的做法，创建了一个惠及所有参与者的强大基础设施。应用最佳实践标准和工具可促进透明度，赋予数据守护者对数据及分析的控制权和治理权，并使研究人员能够在计算“围墙花园”内进行基因组、生物信息学和统计分析。尽管该平台是一个原型，但它的设计具有可扩展性，能够容纳不同的数据类型和群体，每个群体都有自己特定的兴趣和需求。本文概述了拉凯奥拉项目的一部分——基因组分析平台的创建、开发和技术方面，以及它在新西兰奥塔哥实现精准健康研究的潜力。
