"We can wipe an entire culture'': fears and promises of DNA biobanking among Native Americans
"We can wipe an entire culture'': fears and promises of DNA biobanking among Native Americans
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DOI：
10.1007/s10624-015-9391-4
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发表时间：
2015-09-01
影响因子：
1.1
通讯作者：
Heaney, Kathleen
中科院分区：
文献类型：
--
作者：
Abadie, Roberto;Heaney, Kathleen
本文探讨了美国原住民对DNA生物库的看法。一项定性研究在两个中西部城市居住的自称为土著的美国人中进行。调查结果显示了一个悖论：知情者对基因研究的变革力量抱有强烈的希望，同时表达了非常特殊的社会焦虑。新兴的基因组技术引起了人们的关注，担心可能会出现基于种族的基因污名化或歧视，从而阻碍人们获得医疗保险或就业。社会焦虑通常采用阴谋论的叙述形式，描绘强大的代理人剥削或虐待被剥夺公民权的人口。我们认为，虽然美洲原住民没有垄断生产的阴谋叙事，他们的焦虑源于一套独特的历史和社会环境，定位遗传学研究作为一个更大的政治叙事的一部分。我们的结论是，生物医学研究的部落方法，特别是使用“dna贷款”等概念的生物库，强调建立信任、合作和利益分享，是处理这项研究中引起的一些焦虑的一个很好的模式，但也可以作为生物库治理的一般模式。
This paper explores Native American perceptions on DNA biobanking. A qualitative study was conducted among self-declared Native Americans living off reservation in two Midwest cities. Findings demonstrate a paradox: Informants maintain strong hopes for the transformative power of gene-based research while voicing very particular social anxieties. Emerging genomic technologies elicit concerns over the potential for genetic stigmatization or discrimination based on race, preventing access to health insurance or employment. Frequently, social anxieties adopt the narrative form of conspiracy theories which portray powerful agents exploiting or abusing a disenfranchised population. We argue that while Native Americans do not have a monopoly on the production of conspiracy narratives, their anxieties originate in a unique set of historical and social circumstances that position genetics research as part of a much larger political narrative. We conclude by suggesting that tribal approaches to biomedical research and in particular the use of biobanks that use concepts such as "dna on loan'' and emphasize trust building, collaboration and benefit sharing present a good model to deal with some of the anxieties elicited in this research but could also be taken as a model for biobank governance in general.