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科学家和科学期刊应遵守使用和报告原住民数据的道德标准。

Scientists and scientific journals should adhere to ethical standards for the use and reporting of data from Indigenous people.

机构信息

Native BioData Consortium, Eagle Butte, SD, USA.

First Nations Health and Secretariat of Manitoba, Winnipeg, MB, Canada.

出版信息

Diabetologia. 2024 Nov;67(11):2404-2407. doi: 10.1007/s00125-024-06236-y. Epub 2024 Aug 6.

DOI:10.1007/s00125-024-06236-y
PMID:39103722
Abstract

Internationally, governments and scientists are bound by legal and treaty rights when working with Indigenous nations. These rights include the right of Indigenous people to control the conduct of science with Indigenous nations. Unfortunately, in some cases, individual scientists and scientific teams working with biological and genetic data collected from Indigenous people have not respected these international rights. Here, we argue that the scientific community should understand and acknowledge the historical harms experienced by Indigenous people under the veil of scientific progress (truth) and implement existing standards for ethical conduct of research and sovereign control of data collected within Indigenous communities (reconciliation). Specifically, we outline the rationale for why scientists, scientific journals and research integrity and institutional review boards/ethics committees should adopt, and be held accountable for upholding, current international standards of Indigenous data sovereignty and ethical use of Indigenous biological samples.

摘要

在国际上,政府和科学家在与原住民国家合作时受到法律和条约权利的约束。这些权利包括原住民控制与原住民国家进行的科学活动的权利。不幸的是,在某些情况下,与从原住民那里收集的生物和遗传数据合作的个别科学家和科学团队没有尊重这些国际权利。在这里,我们认为科学界应该理解并承认在科学进步(真理)的幌子下原住民所经历的历史伤害,并实施现有的研究道德行为和对在原住民社区内收集的数据的主权控制标准(和解)。具体来说,我们概述了为什么科学家、科学期刊以及研究诚信和机构审查委员会/伦理委员会应该采用并负责维护当前的原住民数据主权和原住民生物样本的道德使用的国际标准的基本原理。

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N Engl J Med. 2024 Jan 4;390(1):1-7. doi: 10.1056/NEJMp2307311. Epub 2023 Dec 30.
2
Recognizing Historical Injustices in Medicine and the .认识医学中的历史不公与…… (原文似乎不完整)
N Engl J Med. 2023 Dec 7;389(23):2202. doi: 10.1056/NEJMe2311317.
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4
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5
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4
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