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Population curation: The construction of mutual obligation between individual and state in Danish precision medicine
Social Studies of Science ( IF 2.9 ) Pub Date : 2024-05-31 , DOI: 10.1177/03063127241255971 Iben M Gjødsbøl 1 , Jeanette Bresson Ladegaard Knox 2 , Lea Skovgaard 1 , Mette N Svendsen 1
Social Studies of Science ( IF 2.9 ) Pub Date : 2024-05-31 , DOI: 10.1177/03063127241255971 Iben M Gjødsbøl 1 , Jeanette Bresson Ladegaard Knox 2 , Lea Skovgaard 1 , Mette N Svendsen 1
Affiliation
How do precision medicine initiatives (re)organize relations between individuals and populations? In this article, we investigate how the curation of national genomic populations enacts communities and, in so doing, constructs mutual obligation between individuals and the state. Drawing on ethnographic fieldwork in the Danish National Genome Center (DNGC), we show how members of advisory bodies negotiated the inclusion criteria for two different genomic populations: a patient genome population and an envisioned ‘Danish’ reference genome population. The patient genome population was curated through a politics of inclusion, of as many genomes as possible, whereas the reference genome was to be curated through a politics of exclusion, to include only the genomes of ‘ethnic’ Danes. These two data populations configure differently the community of ‘Danish patients’ who might benefit from precision medicine, and thereby prescribe different moral continuities between person, state, and territory. We argue that the DNGC’s patient genome population reinforces reciprocal relations of obligations and responsibility between the Danish welfare state and all individuals, while the proposed Danish reference genome population privileges the state’s commitment to individuals with biographical-territorial belonging to the nation-state. Drawing on scholarship on social and health citizenship, as well as data solidarity in the Nordics, the discussion shows how population curation in national precision medicine initiatives might both construct and stratify political obligation. Whereas STS scholarship has previously deconstructed the concept of ‘population’, in the context of the troubling and violent effects of the management of human populations, we point to the importance of population curation as a vehicle for making the individual legible as part of a community to which the state is responsible and for which it is committed to care.
中文翻译:
人口管理:丹麦精准医疗中个人与国家之间相互义务的构建
精准医疗计划如何(重新)组织个体和人群之间的关系?在本文中,我们研究了国家基因组种群的管理如何制定社区,并在此过程中构建个人与国家之间的相互义务。借鉴丹麦国家基因组中心 (DNGC) 的民族志田野调查,我们展示了咨询机构成员如何协商两种不同基因组群体的纳入标准:患者基因组群体和设想的“丹麦”参考基因组群体。患者基因组群体是通过包容政治来策划的,即尽可能多的基因组,而参考基因组是通过排斥政治来策划的,只包括“种族”丹麦人的基因组。这两个数据群体对可能从精准医疗中受益的“丹麦患者”社区进行了不同的配置,从而在人、国家和地区之间规定了不同的道德连续性。我们认为,DNGC 的患者基因组种群加强了丹麦福利国家与所有个人之间的义务和责任互惠关系,而拟议的丹麦参考基因组种群则赋予了国家对具有民族国家传记领土归属的个人的承诺。借鉴了关于社会和健康公民的学术研究,以及北欧的数据团结,该讨论展示了国家精准医疗计划中的人口管理如何构建和分层政治义务。 虽然 STS 奖学金之前已经解构了“人口”的概念,但在人口管理的令人不安和暴力影响的背景下,我们指出了人口管理的重要性,作为使个人作为国家负责并致力于照顾的社区的一部分而清晰可辨的工具。
更新日期:2024-05-31
中文翻译:
人口管理:丹麦精准医疗中个人与国家之间相互义务的构建
精准医疗计划如何(重新)组织个体和人群之间的关系?在本文中,我们研究了国家基因组种群的管理如何制定社区,并在此过程中构建个人与国家之间的相互义务。借鉴丹麦国家基因组中心 (DNGC) 的民族志田野调查,我们展示了咨询机构成员如何协商两种不同基因组群体的纳入标准:患者基因组群体和设想的“丹麦”参考基因组群体。患者基因组群体是通过包容政治来策划的,即尽可能多的基因组,而参考基因组是通过排斥政治来策划的,只包括“种族”丹麦人的基因组。这两个数据群体对可能从精准医疗中受益的“丹麦患者”社区进行了不同的配置,从而在人、国家和地区之间规定了不同的道德连续性。我们认为,DNGC 的患者基因组种群加强了丹麦福利国家与所有个人之间的义务和责任互惠关系,而拟议的丹麦参考基因组种群则赋予了国家对具有民族国家传记领土归属的个人的承诺。借鉴了关于社会和健康公民的学术研究,以及北欧的数据团结,该讨论展示了国家精准医疗计划中的人口管理如何构建和分层政治义务。 虽然 STS 奖学金之前已经解构了“人口”的概念,但在人口管理的令人不安和暴力影响的背景下,我们指出了人口管理的重要性,作为使个人作为国家负责并致力于照顾的社区的一部分而清晰可辨的工具。