While human genetic research promises to deliver a range of health benefits to the population, genetic research that takes place in Indigenous communities has proven controversial. Indigenous peoples have raised concerns, including a lack of benefit to their communities, a diversion of attention and resources from non-genetic causes of health disparities and racism in health care, a reinforcement of "victim-blaming" approaches to health inequalities, and possible misuse of blood and tissue samples. Drawing on the international literature, this article reviews the ethical issues relevant to genetic research in Indigenous populations and considers how some of these have been negotiated in a genomic research project currently under way in a remote Aboriginal community. We consider how the different levels of Indigenous research governance operating in Australia impacted on the research project and discuss whether specific guidelines for the conduct of genetic research in Aboriginal and Torres Strait Islander communities are warranted.

译文

虽然人类基因研究有望为人们带来一系列健康益处,但事实证明,在土著社区进行的基因研究存在争议。土著人民提出了关切,包括缺乏对其社区的利益,将注意力和资源从健康差异的非遗传原因和卫生保健中的种族主义转移,加强对健康不平等的 “指责受害者” 方法,以及可能滥用血液和组织样本。本文借鉴国际文献,回顾了与土著居民遗传研究相关的伦理问题,并考虑了其中一些问题是如何在偏远土著社区目前正在进行的基因组研究项目中进行谈判的。我们考虑在澳大利亚运作的不同程度的土著研究治理如何影响该研究项目,并讨论是否有必要在土著和托雷斯海峡岛民社区进行基因研究的具体准则。

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