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Post-identifiability in changing sociotechnological genomic data environments. 在不断变化的社会技术基因组数据环境中的后可识别性。
IF 1.6 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-03-28 DOI: 10.1057/s41292-023-00299-7
Kaya Akyüz, Melanie Goisauf, Gauthier Chassang, Łukasz Kozera, Signe Mežinska, Olga Tzortzatou-Nanopoulou, Michaela Th Mayrhofer

Data practices in biomedical research often rely on standards that build on normative assumptions regarding privacy and involve 'ethics work.' In an increasingly datafied research environment, identifiability gains a new temporal and spatial dimension, especially in regard to genomic data. In this paper, we analyze how genomic identifiability is considered as a specific data issue in a recent controversial case: publication of the genome sequence of the HeLa cell line. Considering developments in the sociotechnological and data environment, such as big data, biomedical, recreational, and research uses of genomics, our analysis highlights what it means to be (re-)identifiable in the postgenomic era. By showing how the risk of genomic identifiability is not a specificity of the HeLa controversy, but rather a systematic data issue, we argue that a new conceptualization is needed. With the notion of post-identifiability as a sociotechnological situation, we show how past assumptions and ideas about future possibilities come together in the case of genomic identifiability. We conclude by discussing how kinship, temporality, and openness are subject to renewed negotiations along with the changing understandings and expectations of identifiability and status of genomic data.

生物医学研究中的数据实践通常依赖于建立在有关隐私的规范性假设基础上的标准,并涉及“道德工作”在日益数据化的研究环境中,可识别性获得了一个新的时间和空间维度,尤其是在基因组数据方面。在这篇论文中,我们分析了在最近一个有争议的案例中,基因组可识别性是如何被视为一个特定的数据问题的:HeLa细胞系基因组序列的公布。考虑到社会技术和数据环境的发展,如大数据、生物医学、娱乐和基因组学的研究用途,我们的分析强调了在后基因组时代被(重新)识别意味着什么。通过表明基因组可识别性的风险不是HeLa争议的特异性,而是一个系统的数据问题,我们认为需要一个新的概念化。通过将后可识别性视为一种社会技术状况的概念,我们展示了在基因组可识别性的情况下,过去关于未来可能性的假设和想法是如何结合在一起的。最后,我们讨论了亲缘关系、时间性和开放性如何随着对基因组数据的可识别性和状态的理解和期望的变化而进行新的谈判。
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引用次数: 1
Homo chimaera after homo sapiens?: the legal status of human–non-human chimaeras with human brain cells 智人之后的猿人?:具有人类脑细胞的人类-非人类嵌合体的法律地位
IF 1.6 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-03-28 DOI: 10.1057/s41292-023-00302-1
V. Raposo
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引用次数: 0
Science and democracy on stage at the Science and Technology Select Committee 科学与民主在科学技术特别委员会的舞台上
IF 1.6 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-02-14 DOI: 10.1057/s41292-022-00289-1
R. Dimond, N. Stephens
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引用次数: 0
Correction: Core values of genomic citizen science: results from a qualitative interview study 更正:基因组公民科学的核心价值:来自一项定性访谈研究的结果
IF 1.6 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-01-27 DOI: 10.1057/s41292-023-00298-8
Christi J. Guerrini, M. Trejo, Isabel Canfield, A. McGuire
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引用次数: 0
Challenges facing the clinical adoption of a new prognostic biomarker: a case study. 临床采用新预后生物标志物面临的挑战:案例研究。
IF 1.6 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-01-21 DOI: 10.1057/s41292-022-00296-2
Trine Schifter Larsen, Jesper Eugen-Olsen, Ove Andersen, Jeanette Wassar Kirk

In this article, we show how a particular biomarker comes into being in an emergency department in a hospital in Copenhagen, Denmark. We explore the contextual becoming of this biomarker, suPAR, through interviews with nurses and physicians and through relational ontology. We find that as a prognostic biomarker suPAR is challenged in it becoming as an object for clinical practice in the emergency department by the power of diagnostic practices and the desire for experience-based scripts that quickly enable the clinician to reach the right diagnosis. Although suPAR is enacted as a promising triage strategy suggesting a low or high risk of disease, the inability to rule out specific diagnoses and producing the notion of secure clinical actions make its non-specificity and prognostic character problematic in clinical practices. Specific diagnostic criteria versus prognostic interpretation and non-specificity risk profiling challenges the way healthcare workers in an emergency department understand the tasks they are set to solve and how to solve them. We discuss how the becoming of suPAR is strengthened through enactments of specificity and engagement in triage strategies and we reflect on it's becoming through new diagnostic practices with the need to accommodate diagnostic ambiguity.

在本文中,我们展示了丹麦哥本哈根一家医院的急诊科是如何产生一种特殊的生物标志物的。我们通过对护士和医生的访谈,并通过关系本体论,探讨了这一生物标记物 suPAR 的产生背景。我们发现,作为一种预后生物标志物,suPAR 在成为急诊科临床实践对象的过程中,受到了诊断实践力量的挑战,也受到了对基于经验的脚本的渴望的挑战,这种脚本能让临床医生快速得出正确的诊断。虽然 suPAR 是一种很有前途的分诊策略,能提示疾病的低风险或高风险,但由于无法排除特定的诊断并产生安全临床行动的概念,其非特异性和预后性在临床实践中很成问题。具体的诊断标准与预后解释以及非特异性风险分析对急诊科医护人员理解他们要解决的任务以及如何解决这些任务的方式提出了挑战。我们讨论了如何通过制定特异性和参与分诊策略来加强 suPAR 的形成,并反思了通过新的诊断实践来适应诊断模糊性的必要性。
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引用次数: 0
Feral pharmaceuticalization-Biomedical uses of animal life in light of the global donkey hide trade. 野生动物制药--从全球驴皮贸易看动物的生物医学用途。
IF 1.6 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-01-07 DOI: 10.1057/s41292-022-00288-2
Mariana Bombo Perozzi Gameiro, Mathieu Quet

Medical and pharmaceutical uses of animal life have gone through vast changes in the past centuries. Although the commodification of animals and animal parts is by no means an invention of modernity, its procedures and practices have evolved in multiple ways across time. Most notably, the exploitation of non-human animal life has been increasingly segmented, industrialized, and globalized. The collateral expansion of scientific and market institutions has led to specific modes of rationalization of animal breeding, culture, and trade for pharmaceutical purposes. However, this rationalization process has never been immune to its own matter-and the materiality of non-human commodification processes irrigates seemingly ordered and layered practices. Based upon a study on the international trade of donkey hide, this paper offers a characterization of the current pharmaceutical uses of animal life through a series of epistemic and environmental tensions expressing frictions between the market's absorptive logic and non-human modes of existence. We describe this set of tensions as 'feral pharmaceuticalization' and contend that they offer new perspectives on the analysis of the contemporary pharmaceuticalization process. In addition, such tensions showcase the importance of investigating the expansion of technological markets not only as simultaneous knowledge and milieux (or bodies) making, or as simple science and market hegemonic processes, but also as the construction of new stages of conflict.

在过去的几个世纪中,动物的医疗和制药用途经历了巨大的变化。尽管动物和动物器官的商品化绝非现代性的发明,但其程序和做法却在不同时期经历了多种演变。最值得注意的是,对非人类动物生命的开发日益细分化、工业化和全球化。科学和市场机构的附带扩张导致了以制药为目的的动物繁殖、养殖和贸易的特定合理化模式。然而,这一合理化过程从未摆脱其自身的物质性--非人类商品化过程的物质性灌溉着看似有序和多层次的实践。基于对驴皮国际贸易的研究,本文通过一系列表达市场吸收逻辑与非人类生存模式之间摩擦的认识论和环境张力,对当前药物使用动物生命的情况进行了描述。我们将这一系列紧张关系描述为 "野生制药化",并认为它们为分析当代制药化进程提供了新的视角。此外,这种紧张关系表明,研究技术市场的扩张不仅是知识和环境(或身体)的同时制造,或者是简单的科学和市场霸权过程,而且也是冲突新阶段的构建,这一点非常重要。
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引用次数: 0
Negotiating the necessity of biomedical animal use through relations with vulnerability 通过与脆弱性的关系来讨论生物医学动物使用的必要性
IF 1.6 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-01-07 DOI: 10.1057/s41292-022-00295-3
R. McGlacken
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引用次数: 0
'We thank you for your sacrifice': Clinical vulnerability, shielding and biosociality in the UK's Covid-19 response. “我们感谢你们的牺牲”:英国应对Covid-19的临床脆弱性、屏蔽性和生物社会性
IF 1.6 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-01-01 DOI: 10.1057/s41292-021-00266-0
Clare Herrick

The UK response to Covid-19 has been unusually complex in its ever-shifting classifications of clinical vulnerability. By May 2020, 2.2 million people had been identified as 'clinically extremely vulnerable' (CEV) and were asked to 'shield' at home for over four months. To adhere to this strict guidance, they were enfolded within the patchy infrastructure of the 'shielding programme'. However, membership of the 'shielded list' has changed-often without warning or explanation-through time and across space. Drawing on policy and evidentiary documents, government speeches, reports, press conferences and media analysis of Covid-19 coverage between March 2020 and April 1, 2021, this paper traces the shifting delineations of clinical vulnerability in the UK response across three lockdowns. It argues that the complexities and confusions generated by the transience of the CEV category have fed into forms of biosociality that have been as much about making practical sense of government guidance as a form of mutual support amid crisis. This uncertainty has not eased as restrictions have been relaxed and vaccines rolled out. Instead, tracing individual immune response has become a burgeoning industry as 'the shielded' navigate the uneasy demands of taking 'personal responsibility' rather than being protected by 'the rules'.

英国对Covid-19的反应异常复杂,其临床脆弱性的分类不断变化。到2020年5月,已有220万人被确定为“临床极度脆弱”(CEV),并被要求在家中“隔离”4个多月。为了遵守这一严格的指导,它们被包裹在“屏蔽计划”的零星基础设施中。然而,随着时间和空间的推移,“屏蔽名单”的成员资格已经发生了变化——通常没有任何警告或解释。根据2020年3月至2021年4月1日期间对Covid-19报道的政策和证据文件、政府演讲、报告、新闻发布会和媒体分析,本文追溯了英国在三次封锁期间应对措施中临床脆弱性的变化描述。它认为,由于CEV类别的短暂性而产生的复杂性和混乱,已经形成了生物社会性的形式,这种形式既是一种危机中相互支持的形式,也是一种实际意义上的政府指导。随着限制的放松和疫苗的推出,这种不确定性并未缓解。相反,追踪个体免疫反应已经成为一个新兴的行业,因为“被屏蔽者”在承担“个人责任”而不是被“规则”保护的不安要求中游弋。
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引用次数: 2
To wish you well: the biopolitical subjectivities of medical crowdfunders during and after Aotearoa New Zealand's COVID-19 lockdown. 祝大家好运:在新西兰奥特罗阿封锁期间和之后,医疗众筹者的生物政治主体性。
IF 1.6 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-01-01 DOI: 10.1057/s41292-021-00251-7
Susan Wardell

Crowdfunding platforms apply a marketized, competitive logic to healthcare, increasingly functioning as generative spaces in which worthy citizens and biopolitical subjects are produced. Using a lens of biopower, this article considers what sort of biopolitical subjectivities were produced in and through New Zealand crowdfunding campaigns during the 2020 COVID-19 lockdown. It focuses on a discursive and dialogical analysis of 59 online medical crowdfunding campaigns that were active during lockdown and chose to mention the pandemic. These pages pointed to interrelated biological, social and economic precarities, speaking to questions about how citizens navigate uneven needs during uncertain times. Findings showed that crowdfunders referred to the pandemic in order to narrate their own situation in culturally coherent ways and to establish context-specific relations of care. This included contextualising their needs through establishing shared crisis narratives that also made the infrastructural contexts of healthcare visible and performing relational labour in ways that aligned with nationally specific affective regimes. By highlighting their own vulnerability, crowdfunders strategically mobilised broader lockdown discourses of self-sacrifice on behalf of vulnerable people. In this way, New Zealand's lockdown produced subjectivities both drawing on wider neoliberal moral regimes and specific to the nuanced and emergent moral systems of pandemic citizenship.

众筹平台将市场化的、竞争的逻辑应用于医疗保健,越来越多地成为产生有价值公民和生物政治主体的生成空间。本文从生物权力的角度,探讨了在2020年新冠肺炎封锁期间,新西兰众筹活动中产生了什么样的生物政治主体性。它侧重于对封锁期间活跃的59个在线医疗众筹活动进行话语和对话分析,并选择提及大流行。这些页面指出了相互关联的生物、社会和经济不稳定性,谈到了公民如何在不确定时期应对不平衡需求的问题。调查结果表明,众筹者提到大流行病是为了以文化上连贯的方式叙述自己的情况,并建立针对具体情况的关怀关系。这包括通过建立共同的危机叙述将他们的需求置于背景下,这也使医疗保健的基础设施背景可见,并以与国家具体情感制度相一致的方式执行关系劳动。通过强调自身的脆弱性,众筹者战略性地动员了代表弱势群体进行自我牺牲的更广泛的封锁言论。通过这种方式,新西兰的封锁产生了主体性,既借鉴了更广泛的新自由主义道德制度,也针对流行病公民的微妙和新兴道德体系。
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引用次数: 6
Discipline for pleasure: a new governmentality of HIV prevention. 快乐的纪律:艾滋病预防的新治理。
IF 1.6 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-01-01 DOI: 10.1057/s41292-021-00257-1
Tony Sandset, Kaspar Villadsen, Kristin Heggen, Eivind Engebretsen

This article explores recent HIV prevention campaigns for pre-exposure prophylaxis (PrEP), focusing on how they integrate pleasure and desire in their calls for self-discipline through a continual use of pharmaceuticals. This emerging type of health promotion, here represented by ads promoting the preventive use of pharmaceuticals, no longer simply approaches target groups with demands to abstain from harmful substances or practices and thus control risks, but also includes messages that recognize individuals' habits, values, and their desires for pleasure. Drawing on Foucault's work concerning discipline and security, we suggest that a novel, permissive discipline is emerging in contemporary HIV prevention. Further guided by Barthes's theory of images, we analyse posters used in prevention campaigns, scrutinizing their culture-specific imagery and linguistic messages, i.e. how the words and images interact. We conclude that these campaigns introduce a new temporality of prevention, one centred on pleasure through the pre-emption and planning that PrEP enables.

本文探讨了最近针对暴露前预防(PrEP)的艾滋病毒预防运动,重点关注他们如何通过持续使用药物将快乐和欲望结合起来,呼吁自律。这种新型的健康促进,在这里以宣传预防性使用药物的广告为代表,不再简单地向目标群体提出戒除有害物质或做法从而控制风险的要求,而且还包括承认个人习惯、价值观和他们对快乐的渴望的信息。借鉴福柯关于纪律和安全的工作,我们建议在当代艾滋病预防中出现一种新颖的、宽容的纪律。在巴特图像理论的进一步指导下,我们分析了用于预防运动的海报,仔细检查其特定文化的图像和语言信息,即文字和图像如何相互作用。我们的结论是,这些运动引入了一种新的临时预防,一种以预防和计划为中心的快乐为中心的预防。
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引用次数: 2
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