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“为您量身定制”:公众参与与精准医学的政治合法化

"Tailored-to-You": Public Engagement and the Political Legitimation of Precision Medicine.

作者信息

Blasimme Alessandro, Vayena Effy

出版信息

Perspect Biol Med. 2016;59(2):172-188. doi: 10.1353/pbm.2017.0002.

DOI:10.1353/pbm.2017.0002
PMID:37765710
Abstract

With the launch of the Precision Medicine Initiative (PMI) in January 2015, the White House granted a high degree of federal support to an emerging biomedical paradigm. What explains this level of political recognition? Based on literature and policy analysis, we reconstruct the scientific and the legislative paths that led to the political endorsement of precision medicine. First, we describe the proliferation of personalized approaches to therapy ignited by the discovery of hemoprotein cytochrome P450 polymorphism in 1988. Then, we analyze the legislative history of precision medicine, from the unsuccessful introduction of Genomics and Personalized Medicine Acts in the second half of the last decade, to the highly acclaimed PMI. However, scientific progress and political contingency alone do not explain the upheaval of precision medicine as an institutionally supported initiative. On examination, the launch of a Precision Medicine Research Cohort and the incorporation of a participatory ethos into the fabric of the PMI proved to be crucial determinants of the political support for precision medicine. Weaving together the scientific and legislative antecedents of precision medicine, we illuminate how the mutual constitution of science and social order generates political recognition for innovative biomedical paradigms.

摘要

随着2015年1月精准医疗计划(PMI)的启动,白宫给予了这一新兴生物医学范式高度的联邦支持。如何解释这种政治认可程度呢?基于文献和政策分析,我们重构了促成精准医疗获得政治认可的科学路径和立法路径。首先,我们描述了1988年血红蛋白细胞色素P450多态性的发现所引发的个性化治疗方法的激增。然后,我们分析精准医疗的立法历程,从过去十年后半期基因组学与个性化医疗法案的引入失败,到备受赞誉的PMI。然而,仅靠科学进步和政治偶然性并不能解释精准医疗作为一项得到机构支持的计划所引发的变革。经考察,精准医疗研究队列的启动以及将参与性理念融入PMI的架构被证明是精准医疗获得政治支持的关键决定因素。我们将精准医疗的科学和立法前身交织在一起,阐明了科学与社会秩序的相互构成如何为创新生物医学范式带来政治认可。

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