ENGAGING NATIVE AMERICANS IN GENOMICS RESEARCH.

ENGAGING NATIVE AMERICANS IN GENOMICS RESEARCH.
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让美洲原住民参与基因组学研究。

DOI:
10.1111/aman.12369
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发表时间:
2015
影响因子:
3.5
通讯作者:
Bader,Alyssa
Bader,Alyssa
中科院分区:
法学2区
文献类型:
--
作者:
Malhi,RipanS;Bader,Alyssa

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北美土著群体很少被纳入基于群体的遗传研究(Need and Goldstein 2009; Reich et al. 2012)。科学家与美洲土著民族之间动荡的互动历史很可能导致了北美土著民族基因组数据的缺乏。例如,在土著社区采集血液样本的研究人员往往没有回来报告和解释研究结果(wicwar 2004)。这种对土著社区成员的剥削造成了对科学家的不信任(Schroeder et al. 2006),导致许多土著美国人拒绝参与基因研究。基因组科学家通过使用有利于统计变通的方法(Wall et al. 2011)或方便的抽样来应对土著的不信任,而不是做出必要的努力与土著社区建立强有力的合作关系。因此,从美洲原住民社区收集到的少量基因数据并没有提供很多信息。总的来说,印第安人已经选择退出或被排除在主要的基因组努力之外,以了解世界范围内的人类遗传多样性,如国际单体型图计划和1000基因组计划。基因组科学家已经开始参与以社区为基础的参与式研究,其中包括科学家和印第安人之间的互利伙伴关系。西北阿拉斯加药物遗传学研究网络(NWA-PRGN; Woodahl et al. 2014)是基因组科学家和土著社区之间大型成功合作的一个例子。这一伙伴关系进行基础和应用药物基因组学研究,包括土著和非土著机构
Native North American groups have rarely been included in population-based genetic studies (Need and Goldstein 2009; Reich et al. 2012). 3 The tumultuous history of interactions between scientists and the indigenous peoples of the Americas has likely contributed to the dearth of genomic data on Native North American peoples. For instance, researchers who have taken blood samples in indigenous communities have often not returned to report and explain research results (Wichwar 2004). This exploitation of indigenous community members has created a mistrust of scientists (Schroeder et al. 2006) that leads many Native Americans to refuse to participate in genetic studies. Genomic scientists have reacted to indigenous mistrust by using methods that favor statistical workarounds (Wall et al. 2011) or convenience sampling rather than making the necessary effort to develop strong collaborative relationships with indigenous communities. As a result, the little genetic data that has been collected from Native American communities has not been very informative. Overall, Native Americans have opted out or have been left out of major genomic efforts to understand human genetic diversity from populations worldwide such as the International HapMap Project and the 1000 Genomes Project.Genomic scientists have begun to engage in forms of community-based participatory research that involve mutually beneficial partnerships between scientists and Native Americans. An example of a large, successful partnership between genomic scientists and indigenous communities is the Northwest-Alaska Pharmacogenetics Research Network (NWA-PRGN; Woodahl et al. 2014). This partnership, which conducts basic and applied pharmacogenomics research, includes both indigenous and nonindigenous institutions
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