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奥特亚罗瓦基因组数据存储库:珍稀物种测序数据的避风港。

Aotearoa genomic data repository: An āhuru mōwai for taonga species sequencing data.

作者信息

Te Aika Ben, Liggins Libby, Rye Claire, Perkins E Owen, Huh Jun, Brauning Rudiger, Godfery Tracey, Black Michael A

机构信息

Research and Enterprise Office, University of Otago, Dunedin, New Zealand.

School of Natural Sciences, Massey University, Auckland, New Zealand.

出版信息

Mol Ecol Resour. 2025 Feb;25(2):e13866. doi: 10.1111/1755-0998.13866. Epub 2023 Sep 15.

Abstract

The Aotearoa Genomic Data Repository (AGDR) is an initiative to provide a secure within-nation option for the storage, management and sharing of non-human genomic data generated from biological and environmental samples originating in Aotearoa New Zealand. This resource has been developed to follow the principles of Māori Data Sovereignty, and to enable the right of kaitiakitanga (guardianship), so that iwi, hapū and whānau (tribes, kinship groups and families) can effectively exercise their responsibilities as guardians over biological entities that they regard as taonga (precious or treasured). While the repository is designed to facilitate the sharing of data-making it findable by researchers and interoperable with data held in other genomic repositories-the decision-making process regarding who can access the data is entirely in the hands of those holding kaitiakitanga over each data set. No data are made available to the requesting researcher until the request has been approved, and the conditions for access (which can vary by data set) have been agreed to. Here we describe the development of the AGDR, from both a cultural perspective, and a technical one, and outline the processes that underpin its operation.

摘要

奥特亚罗瓦基因组数据存储库(AGDR)是一项倡议,旨在为存储、管理和共享源自新西兰奥特亚罗瓦的生物和环境样本所产生的非人类基因组数据提供一个国内安全选项。该资源的开发遵循毛利数据主权原则,并赋予kaitiakitanga(监护权),以便毛利部落、分支和家庭(部落、亲属群体和家庭)能够有效地履行其作为守护者对他们视为taonga(珍贵或珍视之物)的生物实体的责任。虽然该存储库旨在促进数据共享——使其可供研究人员查找并与其他基因组存储库中的数据实现互操作——但关于谁可以访问数据的决策过程完全由对每个数据集拥有kaitiakitanga的人掌控。在请求获得批准且访问条件(可能因数据集而异)达成一致之前,不会向请求的研究人员提供任何数据。在此,我们从文化和技术两个角度描述AGDR的发展情况,并概述其运作所依据的流程。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c78f/11696480/c50d151d77ad/MEN-25-e13866-g002.jpg

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