Faculty of Māori and Indigenous Studies, University of Waikato, Hamilton, New Zealand.
Genomics Aotearoa, University of Otago, Dunedin, New Zealand.
Nat Rev Genet. 2020 Jun;21(6):377-384. doi: 10.1038/s41576-020-0228-x. Epub 2020 Apr 6.
Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.
在开放科学环境下，促进基因组数据的无限制获取，使得解决遗传资源中的原住民权益问题变得越来越具有挑战性。尽管原住民在遗传研究方面的经历受到了一系列负面互动的影响，但人们越来越认识到，只有通过原住民社区的更多参与，才能实现公平的利益。信任、问责制和公平性问题是原住民对遗传研究和基因组数据共享的批评的核心。本文观点强调了在基因组数据共享方面，原住民社区所面临的问题，并提出了基因组研究人员可以采用的原则和行动，以承认社区在数据方面的权益。
