Menzies School of Health Research, Charles Darwin University, Darwin, NT 0811, Australia.
Trends Mol Med. 2012 Dec;18(12):702-8. doi: 10.1016/j.molmed.2012.08.003. Epub 2012 Sep 21.
Indigenous populations, in common with all populations, stand to benefit from the potential of genetic research to lead to improvements in diagnostic and therapeutic tools for a wide range of complex diseases. However, many Indigenous communities, especially ones that are isolated, are not included in genetic research efforts. This situation is largely a consequence of the challenges of ethically conducting genetic research in Indigenous communities and compounded by Indigenous peoples' negative past experiences with genetic issues. To examine ways of addressing these challenges, we review one investigation of a cancer cluster in remote Aboriginal communities in Arnhem Land, Australia. Our experiences demonstrate that genetic research can be both ethically and successfully conducted with Indigenous communities by respecting the authority of the community, involving community members, and including regular community review throughout the research process.
原住民群体与所有人群一样，将受益于遗传研究的潜力，为广泛的复杂疾病带来诊断和治疗工具的改进。然而，许多原住民社区，特别是那些与世隔绝的社区，并未被纳入遗传研究工作中。这种情况主要是由于在原住民社区进行遗传研究的伦理挑战以及原住民人民对遗传问题的负面过往经历所导致的。为了探讨应对这些挑战的方法，我们回顾了澳大利亚阿纳姆地偏远原住民社区癌症集群的一项调查。我们的经验表明，通过尊重社区的权威、让社区成员参与以及在研究过程中定期进行社区审查，可以在遗传研究中与原住民社区进行既符合伦理道德又取得成功的合作。
