外借DNA:对土著家庭和社区进行基因研究时要考虑的问题。

Laura Arbour, Doris Cook
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引用次数: 114

摘要

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,受遗传疾病影响的土著家庭和社区可能被视为研究参与者。然而,由于担心遗传信息的影响和历史上有害的研究实践,一些土著社区在面对这一前景时感到相当不安。因此,在土著家庭和社区认为遗传学是研究探究的重要组成部分的情况下,需要保证研究将根据双方的期望进行。一种尊重土著个人和社区的文化并符合其价值观的研究关系至关重要。这方面延伸到生物样本的使用,考虑到DNA是“租借”给研究人员用于获得同意的研究目的。本文将探讨在与原住民进行遗传学研究时保持尊重研究关系的实际方法。
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DNA on loan: issues to consider when carrying out genetic research with aboriginal families and communities.

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.

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