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In whose pockets? How small Danish patient organisations balance legitimacy, representation and dependency in collaboration with public sector medical researchers and the life science industry 在谁的口袋里?丹麦小型患者组织如何与公共部门医学研究人员和生命科学行业合作,平衡合法性、代表性和依赖性
IF 1.6 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-06-02 DOI: 10.1057/s41292-023-00305-y
C. B. Jacobsen, D. Kristensen, B. Bruun
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引用次数: 0
Allostatic load: historical origins, promises and costs of a recent biosocial approach 异静态负荷:最近一种生物社会方法的历史起源、承诺和成本
IF 1.6 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-05-26 DOI: 10.1057/s41292-023-00303-0
Thibaut Serviant-Fine, M. Arminjon, Y. Fayet, É. Giroux
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引用次数: 0
Citizenship in times of crisis: biosocial state-citizen relations during COVID-19 in Austria. 危机时期的公民身份:新冠肺炎期间奥地利的生物社会国家公民关系。
IF 1.3 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-05-22 DOI: 10.1057/s41292-023-00304-z
Isabella M Radhuber, Christian Haddad, Katharina Kieslich, Katharina T Paul, Barbara Prainsack, Seliem El-Sayed, Lukas Schlogl, Wanda Spahl, Elias Weiss

Drawing upon 152 in-depth qualitative interviews with residents in Austria carried out in the first year of the pandemic, this article discusses how people's experiences with COVID-19 policies reflect and reshape state-citizen relations. Coinciding with a significant government crisis, the first year of COVID-19 in Austria saw pandemic measures justified with reference to a biological, often medical understanding of health that framed disease prevention in terms of transmission reduction, often with reference to metrics such as hospitalisation rates, etc. Instead of using this biomedical frame, our interviewees, however, drew attention to biopsychosocial dimensions of the crisis and problematised the entanglements between economy and health. We call this the emergence of a biosocial notion of citizenship that is attentive to psychological, social and economic dimensions of health. Insights into the biosocial nature of pandemic citizenship open a window of opportunity for addressing long-standing social injustices.

本文根据疫情第一年对奥地利居民进行的152次深入定性采访,讨论了人们对新冠肺炎政策的体验如何反映和重塑国家与公民的关系。在发生重大政府危机的同时,新冠肺炎在奥地利爆发的第一年,根据对健康的生物学、通常是医学理解,大流行措施是合理的,这种理解将疾病预防视为减少传播,通常参考住院率等指标。然而,我们的受访者没有使用这种生物医学框架,引起了人们对危机的生物-心理-社会层面的关注,并使经济和健康之间的纠缠成为问题。我们称之为公民身份的生物社会概念的出现,这种概念关注健康的心理、社会和经济层面。深入了解新冠肺炎公民身份的生物社会性质,为解决长期存在的社会不公正现象打开了机会之窗。
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引用次数: 0
Navigating biosafety concerns within COVID-19 do-it-yourself (DIY) science: an ethnographic and interview study. 在新冠肺炎自助科学中解决生物安全问题:人种学和访谈研究。
IF 1.3 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-03-28 DOI: 10.1057/s41292-023-00301-2
Anna Wexler, Rebekah Choi, Alex Pearlman, Lisa M Rasmussen

Non-establishment or do-it-yourself (DIY) science involves individuals who may not have formal training conducting experiments outside of institutional settings. While prior scholarship has examined the motivations and values of those involved in the subset of DIY science known as "DIY biology," little research has addressed how these individuals navigate ethical issues in practice. The present study therefore aimed to understand how DIY biologists identify, approach, and resolve one particular ethical issue-biosafety-in their work. We conducted a digital ethnography of Just One Giant Lab (JOGL), the primary hub for DIY biology during the COVID-19 pandemic, and subsequently conducted interviews with individuals involved with JOGL. We found that JOGL was the first global DIY biology initiative to create a Biosafety Advisory Board and develop formal biosafety guidelines that applied to different groups in multiple locations. There was disagreement, however, regarding whether the Board should have an advisory role or provide mandatory oversight. We found that JOGL practiced ethical gatekeeping of projects that fell outside the limits defined by the Board. Our findings show that the DIY biology community recognized biosafety issues and tried to build infrastructure to facilitate the safe conduct of research.

Supplementary information: The online version contains supplementary material available at 10.1057/s41292-023-00301-2.

非机构或自己动手(DIY)科学涉及可能没有受过正式培训的个人在机构环境之外进行实验。虽然之前的学术研究考察了那些参与被称为“DIY生物学”的DIY科学子集的人的动机和价值观,但很少有研究涉及这些人在实践中如何应对道德问题。因此,本研究旨在了解DIY生物学家如何在他们的工作中识别、处理和解决一个特定的伦理问题——生物安全。我们对新冠肺炎大流行期间自己动手做生物学的主要中心“只有一个巨人实验室”(JOGL)进行了数字民族志研究,随后对参与JOGL的个人进行了采访。我们发现,JOGL是第一个创建生物安全咨询委员会并制定适用于多个地点不同群体的正式生物安全指南的全球DIY生物学倡议。然而,对于委员会是否应该发挥咨询作用或提供强制性监督,存在分歧。我们发现,JOGL对超出董事会规定范围的项目实行道德把关。我们的研究结果表明,DIY生物学界认识到了生物安全问题,并试图建立基础设施来促进研究的安全进行。补充信息:在线版本包含补充材料,可访问10.1057/s41292-023-00301-2。
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引用次数: 0
Population anxieties in constituting Nordic welfare state futures: affective biopolitics in the age of environmental crises 构成北欧福利国家未来的人口焦虑:环境危机时代的情感生物政治
IF 1.6 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2023-03-28 DOI: 10.1057/s41292-023-00300-3
Riikka Homanen, Mianna Meskus
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引用次数: 0
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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Biosocieties
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