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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
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)组织个人与人群之间的关系?在本文中,我们研究了国家基因组群体的管理如何制定社区,并以此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) 的人种学实地工作,我们展示了咨询机构成员如何协商两个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性政治来策划的,包含尽可能多的基因组,而参考基因组则通过排除性政治来策划,仅包括“丹麦人”的基因组。这两个数据群体以不同的方式配置了可能受益于精准医疗的“丹麦患者”社区,从而规定了个人、国家和领土之间不同的道德连续性。我们认为,DNGC 的患者基因组群体强化了丹麦福利国家与所有个人之间义务和责任的相互关系,而拟议的丹麦参考基因组群体则优先考虑了国家对拥有属于民族国家的传记领土的个人的承诺。借鉴社会和健康公民方面的学术成果以及北欧的数据团结,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。 尽管 STS 学术先前已经解构了“人口”的概念,但在人口管理带来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,它是使个人清晰地成为社区一部分的工具。国家有责任并承诺予以照顾。
更新日期:2024-05-31
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