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本文引用的文献

1
Human genome deadline cut by two years.人类基因组计划期限提前两年。
Nature. 1998 Sep 17;395(6699):207. doi: 10.1038/26061.
2
Group identity and human diversity: keeping biology straight from culture.群体认同与人类多样性:区分生物学与文化
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A model agreement for genetic research in socially identifiable populations.一份针对社会可识别群体的基因研究的示范协议。
Am J Hum Genet. 1998 Sep;63(3):696-702. doi: 10.1086/302013.
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Human genome diversity--a project?人类基因组多样性——一个项目?
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A genetic survey of vanishing peoples.对逐渐消失的族群的基因调查。
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原住民与人类基因组多样性计划的道德问题

Indigenous peoples and the morality of the Human Genome Diversity Project.

作者信息

Dodson M, Williamson R

机构信息

University of New South Wales, Sydney, Australia.

出版信息

J Med Ethics. 1999 Apr;25(2):204-8. doi: 10.1136/jme.25.2.204.

DOI:10.1136/jme.25.2.204
PMID:10226929
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC479208/
Abstract

In addition to the aim of mapping and sequencing one human's genome, the Human Genome Project also intends to characterise the genetic diversity of the world's peoples. The Human Genome Diversity Project raises political, economic and ethical issues. These intersect clearly when the genomes under study are those of indigenous peoples who are already subject to serious economic, legal and/or social disadvantage and discrimination. The fact that some individuals associated with the project have made dismissive comments about indigenous peoples has confused rather than illuminated the deeper issues involved, as well as causing much antagonism among indigenous peoples. There are more serious ethical issues raised by the project for all geneticists, including those who are sympathetic to the problems of indigenous peoples. With particular attention to the history and attitudes of Australian indigenous peoples, we argue that the Human Genome Diversity Project can only proceed if those who further its objectives simultaneously: respect the cultural beliefs of indigenous peoples; publicly support the efforts of indigenous peoples to achieve respect and equality; express respect by a rigorous understanding of the meaning of equitable negotiation of consent, and ensure that both immediate and long term economic benefits from the research flow back to the groups taking part.

摘要

除了绘制和测序一个人的基因组这一目标外,人类基因组计划还旨在描述世界各民族的遗传多样性。人类基因组多样性计划引发了政治、经济和伦理问题。当所研究的基因组是那些已经处于严重经济、法律和/或社会劣势及歧视之下的原住民的基因组时,这些问题就会明显地交织在一起。该项目的一些相关人员对原住民发表了轻蔑言论,这非但没有阐明其中涉及的深层次问题,反而使其更加混乱,同时还在原住民中引发了诸多敌意。该项目给所有遗传学家都带来了更严重的伦理问题,包括那些同情原住民问题的遗传学家。特别关注澳大利亚原住民的历史和态度,我们认为,只有那些推动该项目目标的人同时做到以下几点,人类基因组多样性计划才能继续进行:尊重原住民的文化信仰;公开支持原住民争取尊重和平等的努力;通过严格理解公平协商同意的含义来表达尊重,并确保研究产生的近期和长期经济利益回馈给参与的群体。