Genomic Justice and Imagined Communities.
Genomic Justice and Imagined Communities.
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基因组正义和想象的社区。
DOI：
10.1002/hast.737
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发表时间：
2017
期刊：
影响因子：
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通讯作者：
Schwartz-Marin E
中科院分区：
文献类型：
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作者：
Schwartz-Marin E
在本期黑斯廷斯中心报告中，玛雅·萨巴泰洛 (Maya Sabatello) 和保罗·阿佩尔鲍姆 (Paul Appelbaum) 探讨了美国精准医学计划中嵌入的社区假设，该计划旨在招募反映美国种族和民族多样性的捐助伙伴。正如 Sabatello 和 Appelbaum 所讨论的那样，该倡议就像其他国家生物库工作一样，旨在实现一个需要高度关注的想象中的基因社区，并且考虑到 PMI 核心的公私合作形式，此类努力可能会成为加深现有不平等的途径，而不是缓解不平等。自二十世纪初第一个国家生物样本库项目出现以来，正义概念引发了关于基因组医学、知情同意、公民身份、利益分享和利润获取的争论。在一个典型案例中，一家冰岛公司创建的解码基因组生物库引发了关于公共利益和私人利益之间适当关系的激烈辩论，并成为第一个全球性的例子，展示了基因社区在我们共同的未来中可能产生的经济和政治影响。 2001 年，冰岛的案例在墨西哥推动了一项政策议程，以应对全球健康正义以及基于对 DNA 的深入了解的未来基于市场的殖民主义的前景。
In this issue of the Hastings Center Report, Maya Sabatello and Paul Appelbaum explore the assumptions about community embedded in the U.S. Precision Medicine Initiative, which aims to recruit donor‐partners who reflect the United States’ racial and ethnic diversity. As Sabatello and Appelbaum discuss, the initiative is like other national biobanking efforts in bringing to life an imagined genetic community in need of critical attention, and given the public‐private forms of partnership at the heart of the PMI, such efforts could become avenues to deepen existing inequalities rather than to alleviate them. The notion of justice has underwritten debates about genomic medicine, informed consent, citizenship, benefit sharing, and profit making since the first national biobanking project emerged at the dawn of the twenty‐first century. In a paradigmatic case, the creation, by an Icelandic company, of the deCODE genomic biobank opened up fierce debates about the proper relationship between public good and private gain and became the first global example of the economic and political implications that imagined genetic communities could have in our shared future. In Mexico, in 2001, the Icelandic case fueled a policy agenda to deal with global health justice and the prospects of a future market‐based colonialism predicated on the intimate knowledge of DNA.