Indigenous peoples and the morality of the Human Genome Diversity Project

Indigenous peoples and the morality of the Human Genome Diversity Project
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DOI:
10.1136/jme.25.2.204
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发表时间:
1999-04-01
影响因子:
4.1
通讯作者:
Williamson, R
Williamson, R
中科院分区:
人文科学1区
文献类型:
--
作者:
Dodson, M;Williamson, R

文献摘要

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除了绘制和测序人类基因组图的目标外,人类基因组计划还打算描述世界各国人民的遗传多样性。人类基因组多样性项目引发了政治、经济和伦理问题。当研究中的基因组是土著人民的基因组时,这些显然是相交的,这些土著人民已经是土著人民,在经济、法律和/或社会方面处于严重的不利地位和歧视。一些与该项目有关的个人对土著人民发表了不屑一顾的评论,这一事实令人困惑,而不是阐明了所涉及的更深层次的问题,并在土著人民中引起了很大的敌意。该项目对所有遗传学家,包括那些同情土著人民问题的人,提出了更严重的伦理问题。我们特别关注澳大利亚土著人民的历史和态度,认为人类基因组多样性项目只有同时实现以下目标才能继续进行:尊重土著人民的文化信仰;公开支持土著人民实现尊重和平等的努力;通过严格理解公平谈判同意的含义来表达尊重,并确保从研究中获得的短期和长期经济利益回馈参与群体。
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(It, 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 ts of indigenous peoples to achieve respect and equalityexpress respect by a rigorous understanding of the meaning of equitable negotiation of consent, andensure that both immediate and long term economic benefits from the research pow back to the groups taking part.