人口策展:丹麦精准医疗中个人与国家之间相互义务的构建。

IF 2.9 2区 社会学 Q1 HISTORY & PHILOSOPHY OF SCIENCE
Social Studies of Science Pub Date : 2024-12-01 Epub Date: 2024-05-31 DOI:10.1177/03063127241255971
Iben M Gjødsbøl, Jeanette Bresson Ladegaard Knox, Lea Skovgaard, Mette N Svendsen
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引用次数: 0

摘要

精准医疗计划如何(重新)组织个人与人群之间的关系?在这篇文章中,我们研究了国家基因组人群的策划如何形成社区,并在此过程中构建个人与国家之间的相互义务。通过对丹麦国家基因组中心(Danish National Genome Center,DNGC)的人种学实地调查,我们展示了咨询机构的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中的 "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,即尽可能多的基因组,而参考基因组则是通过排斥性政治来策划的,即只包括 "丹麦人 "的基因组。这两种数据群体以不同方式配置了可能从精准医疗中受益的 "丹麦病人 "群体,从而在个人、国家和领土之间规定了不同的道德连续性。我们认为,DNGC 的患者基因组群体加强了丹麦福利国家与所有个人之间的互惠义务和责任关系,而拟议中的丹麦参考基因组群体则强调了国家对具有民族国家生物领土归属的个人的承诺。讨论借鉴了社会和健康公民权的学术研究以及北欧的数据团结,展示了国家精准医学计划中的人口策展如何构建和分层政治义务。科学、技术和社会科学学术界以前曾解构过 "人口 "的概念,而在人类人口管理所产生的令人不安的暴力影响的背景下,我们指出了人口策展的重要性,它是一种工具,可使个人成为国家有责任并承诺照顾的社区的一部分。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Population curation: The construction of mutual obligation between individual and state in Danish precision medicine.

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.

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来源期刊
Social Studies of Science
Social Studies of Science 管理科学-科学史与科学哲学
CiteScore
5.70
自引率
6.70%
发文量
45
审稿时长
>12 weeks
期刊介绍: Social Studies of Science is an international peer reviewed journal that encourages submissions of original research on science, technology and medicine. The journal is multidisciplinary, publishing work from a range of fields including: political science, sociology, economics, history, philosophy, psychology social anthropology, legal and educational disciplines. This journal is a member of the Committee on Publication Ethics (COPE)
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