DNA on loan: Issues to consider when carrying out genetic research with aboriginal families and communities

DNA on loan: Issues to consider when carrying out genetic research with aboriginal families and communities
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DOI:
10.1159/000092651
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发表时间:
2006-01-01
期刊:
COMMUNITY GENETICS
影响因子:
--
通讯作者:
Cook, D
Cook, D
中科院分区:
其他
文献类型:
--
作者:
Arbour, L;Cook, D

文献摘要

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在目前的研究环境中,遗传病因学被认为是发现发病机制的关键组成部分,土著家庭和社区受遗传条件的影响,可被视为研究的参与者。但由于担心遗传信息的影响和历史上有害的研究做法,一些原住民社区在面对这一前景时有相当大的不安。因此,在土著家庭和社区认为遗传学是研究调查的重要组成部分的情况下,需要保证研究将按照相互的期望进行。必须建立一种研究关系,在土著人的文化范围内尊重土著人和土著社区,并与他们的价值观保持一致。这方面延伸到生物样本的使用,认为DNA是为了获得同意的研究目的而"借给"研究人员的。本文将探讨在与原住民进行遗传学研究时,如何保持相互尊重的研究关系。版权所有(C)2006 S. Karger AG,巴塞尔。
In the current research milieu where genetic etiology is considered a critical component in the discovery of pathogenesis, aboriginal families and communities affected with genetic conditions may be considered as research participants. However, because of concerns about the impact of genetic information and historical harmful research practices, some aboriginal communities have considerable unease when faced with this prospect. Therefore, in the circumstance that genetics is considered an important part of research inquiry by aboriginal families and communities, there needs to be assurance that the research will be carried out according to mutual expectations. A research relationship that respects aboriginal individuals and communities within their culture and is in keeping with their values is essential. This respect extends to the use of biological samples, considering the DNA to be 'on loan' to the researcher for the purpose of the research for which consent was obtained. This paper will explore practical ways of maintaining a respectful research relationship when genetics research with aboriginal people is undertaken. Copyright (C) 2006 S. Karger AG, Basel.