Rakeiora Genomics Platform: a pathfinder for genomic medicine research in Aotearoa New Zealand

被引:0
作者
Rye, Claire E. [1 ]
Puketapu-Watson, Huti [2 ]
Wihongi, Helen [3 ,4 ]
Aika, Ben Te [5 ]
Macartney-Coxson, Donia [6 ]
de Ligt, Joep [7 ]
Print, Cristin G. [8 ,9 ]
Le Quesne Stabej, Polona [8 ]
Tsai, Peter [8 ,9 ]
Curran, Ben [8 ,10 ]
Jones, Nick [1 ]
Huh, Jun [1 ]
Perkins, E. Owen [1 ]
Pestle, Matt [1 ]
Zhao, Kenny [1 ]
Halytskyy, Yuriy [1 ]
Robertson, Stephen P. [11 ]
Halliday, Benjamin J. [11 ]
Goodin, Elizabeth [11 ]
Markie, David M. [12 ]
Lamont, Alastair [13 ]
Wilcox, Phillip [9 ,13 ]
机构
[1] Univ Auckland, New Zealand Esci Infrastruct, Auckland, Aotearoa, New Zealand
[2] Wananga Aotearoa, Aotearoa, Aotearoa, New Zealand
[3] Te Whatu Ora Waitemata, Aotearoa, Aotearoa, New Zealand
[4] Te Whatu Ora Te Toka Tumai Auckland, Aotearoa, Aotearoa, New Zealand
[5] Univ Otago, Res & Enterprise Off, Dunedin, Aotearoa, New Zealand
[6] Med Res Inst New Zealand, Wellington, Aotearoa, New Zealand
[7] Inst Environm Sci & Res, Bioinformat & Genom, Wellington, Aotearoa, New Zealand
[8] Univ Auckland, Auckland, Aotearoa, New Zealand
[9] Maurice Wilkins Ctr Mol Biodiscovery Auckland, Aotearoa, New Zealand
[10] Childrens Canc Inst Australia, Computat Biol Grp, Sydney, Australia
[11] Univ Otago, Dunedin Sch Med, Dept Womens & Childrens Hlth, Dunedin, Aotearoa, New Zealand
[12] Univ Otago, Dunedin Sch Med, Dept Pathol, Dunedin, Aotearoa, New Zealand
[13] Univ Otago, Dept Math & Stat, Dunedin, Aotearoa, New Zealand
关键词
Precision medicine; genomics; Indigenous data sovereignty; tino rangatiratanga; data platform; PRECISION MEDICINE; GENETIC EVALUATION; FULL PEDIGREE; RISK-TAKING; HEALTH; SCIENTISTS; ENGAGEMENT; BIOBANKING; POLITICS;
D O I
10.1080/03036758.2025.2469626
中图分类号
O [数理科学和化学]; P [天文学、地球科学]; Q [生物科学]; N [自然科学总论];
学科分类号
07 ; 0710 ; 09 ;
摘要
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 m & amacr;tauranga whakapapa (genealogical knowledge) in a powerful, secure, and transparently governed computational environment. A team of M & amacr;ori and non-M & amacr;ori with diverse professional and cultural expertise co-developed Rakeiora; embedding te ao M & amacr;ori (M & amacr;ori world) was crucial, including principles derived from: tikanga M & amacr;ori (M & amacr;ori traditional rules, values, culture), Te Tiriti o Waitangi (agreement between the British Crown and many M & amacr;ori 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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页数:25
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