Arbour Laura, Cook Doris
University of British Columbia, Vancouver, Canada.
Community Genet. 2006;9(3):153-60. doi: 10.1159/000092651.
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.
在当前将遗传病因视为发病机制发现关键组成部分的研究环境中，受遗传疾病影响的原住民家庭和社区可能会被视为研究参与者。然而，由于担心遗传信息的影响以及历史上有害的研究行为，一些原住民社区在面对这种情况时会相当不安。因此，在遗传学被原住民家庭和社区视为研究调查重要组成部分的情况下，需要确保研究将按照双方的期望进行。一种尊重原住民个体及其文化并符合其价值观的研究关系至关重要。这种尊重延伸到生物样本的使用，即认为DNA是“借给”研究人员用于已获得同意的研究目的。本文将探讨在对原住民进行遗传学研究时维持尊重性研究关系的实际方法。
