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Marginalized measures: The harmonization of diversity in precision medicine research. 边缘化措施:精准医学研究中多样性的协调。
IF 2.9 2区 社会学 Q1 HISTORY & PHILOSOPHY OF SCIENCE Pub Date : 2025-04-01 Epub Date: 2024-10-07 DOI: 10.1177/03063127241288498
Melanie Jeske, Aliya Saperstein, Sandra Soo-Jin Lee, Janet K Shim

The production of large, shareable datasets is increasingly prioritized for a wide range of research purposes. In biomedicine, especially in the United States, calls to enhance representation of historically underrepresented populations in databases that integrate genomic, health history, demographic and lifestyle data have also increased in order to support the goals of precision medicine. Understanding the assumptions and values that shape the design of such datasets and the practices through which they are constructed are a pressing area of social inquiry. We examine how diversity is conceptualized in U.S. precision medicine research initiatives, specifically attending to how measures of diversity, including race, ethnicity, and medically underserved status, are constructed and harmonized to build commensurate datasets. In three case studies, we show how symbolic embrace of both diversity and harmonization efforts can compromise the utility of diversity data. Although big data and diverse population representation are heralded as the keys to unlocking the promises of precision medicine research, these cases reveal core tensions between what kinds of data are seen as central to 'the science' and which are marginalized.

为了广泛的研究目的,制作大型、可共享的数据集越来越受到重视。在生物医学领域,尤其是在美国,为了支持精准医学的目标,要求在整合了基因组、健康史、人口统计学和生活方式数据的数据库中提高历史上代表性不足人群的代表性的呼声也日益高涨。了解影响此类数据集设计的假设和价值观,以及构建数据集的实践,是社会调查的一个紧迫领域。我们研究了美国精准医学研究计划中如何将多样性概念化,特别关注了如何构建和协调包括种族、民族和医疗服务不足状况在内的多样性衡量标准,以建立相称的数据集。在三个案例研究中,我们展示了象征性地接受多样性和协调工作会如何损害多样性数据的效用。尽管大数据和多元化人群代表被誉为开启精准医学研究前景的钥匙,但这些案例揭示了哪些数据被视为 "科学 "的核心,哪些数据被边缘化之间的核心矛盾。
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引用次数: 0
Can democracy save children's lives? Addressing the constitutional problem of expertise. 民主能拯救儿童的生命吗?解决专业知识的宪法问题。
IF 2.9 2区 社会学 Q1 HISTORY & PHILOSOPHY OF SCIENCE Pub Date : 2025-04-01 Epub Date: 2025-01-06 DOI: 10.1177/03063127241310461
Brice Laurent

This comment critically examines Collins, Evans, and Reyes-Galindo's (CE&RG) concept of 'virtual diversity', proposed as a norm to safeguard scientific expertise in policy-making. CE&RG argue that scientists should acquire 'interactional expertise' in relevant 'non-scientific domains', enabling informed policy advice while preserving scientific integrity. This comment describes CE&RG's dualist approach, which separates epistemic and political concerns, and discusses its implications. It shows that for virtual diversity to contribute to the quality of and trust in expertise, this approach needs to be radically re-worked to include legitimacy-building processes. Using examples such as South Africa's AIDS policy and the COVID-19 pandemic, the comment argues that defending expertise requires ensuring the robustness of both scientific and political representations, of, in other terms, addressing expertise as a constitutional problem. Without a broader critical constitutional analysis, CE&RG's proposal risks reinforcing the crisis of expertise it seeks to remedy.

本评论对柯林斯、埃文斯和雷耶斯-加林多(CE&RG)提出的 "虚拟多样性 "概念进行了批判性研究。CE&RG 认为,科学家应掌握相关 "非科学领域 "的 "互动专业知识",从而在维护科学完整性的同时,为政策提供明智的建议。本评论介绍了 CE&RG 的二元论方法,即把认识论和政治问题分开,并讨论了其影响。它表明,要使虚拟多样性有助于提高专业知识的质量和信任度,就需要对这一方法进行彻底改革,将合法性建设过程纳入其中。评论以南非的艾滋病政策和 COVID-19 大流行病为例,认为捍卫专业知识需要确保科学和政治表述的稳健性,换句话说,需要将专业知识作为一个宪法问题来解决。如果不对宪法进行更广泛的批判性分析,CE&RG 的建议有可能会强化其试图补救的专业知识危机。
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引用次数: 0
Silence of the labs. 实验室一片寂静。
IF 2.9 2区 社会学 Q1 HISTORY & PHILOSOPHY OF SCIENCE Pub Date : 2025-04-01 Epub Date: 2025-01-22 DOI: 10.1177/03063127251314452
Banu Subramaniam

This is a commentary on 'Virtual diversity: Resolving the tension between the wider culture and the institution of science', by Harry Collins, Robert Evans, Luis Reyes-Galindo.

这是对《虚拟多样性:解决更广泛的文化和科学机构之间的紧张关系》的评论,作者:哈里·柯林斯,罗伯特·埃文斯,路易斯·雷耶斯-加林多。
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引用次数: 0
Categorical misalignment: Making autism(s) in big data biobanking. 分类错位:大数据生物银行中的自闭症。
IF 2.9 2区 社会学 Q1 HISTORY & PHILOSOPHY OF SCIENCE Pub Date : 2025-04-01 Epub Date: 2024-10-07 DOI: 10.1177/03063127241288223
Kathryne Metcalf

The opaque relationship between biology and behavior is an intractable problem for psychiatry, and it increasingly challenges longstanding diagnostic categorizations. While various big data sciences have been repeatedly deployed as potential solutions, they have so far complicated more than they have managed to disentangle. Attending to categorical misalignment, this article proposes one reason why this is the case: Datasets have to instantiate clinical categories in order to make biological sense of them, and they do so in different ways. Here, I use mixed methods to examine the role of the reuse of big data in recent genomic research on autism spectrum disorder (ASD). I show how divergent regimes of psychiatric categorization are innately encoded within commonly used datasets from MSSNG and 23andMe, contributing to a rippling disjuncture in the accounts of autism that this body of research has produced. Beyond the specific complications this dynamic introduces for the category of autism, this paper argues for the necessity of critical attention to the role of dataset reuse and recombination across human genomics and beyond.

生物学与行为之间的不透明关系是精神病学面临的一个棘手问题,它对长期以来的诊断分类提出了越来越多的挑战。虽然各种大数据科学已被反复用作潜在的解决方案,但迄今为止,它们所复杂化的程度远远超过了它们所能厘清的程度。针对分类错位问题,本文提出了造成这种情况的一个原因:数据集必须将临床类别实例化,才能使它们具有生物学意义,而它们是以不同的方式这样做的。在此,我采用混合方法考察了大数据的再利用在近期自闭症谱系障碍(ASD)基因组研究中的作用。我展示了来自 MSSNG 和 23andMe 的常用数据集是如何对不同的精神病学分类体系进行编码的,从而使这一系列研究对自闭症的描述产生了巨大的差异。除了这种动态变化给自闭症类别带来的具体复杂性之外,本文还认为有必要对人类基因组学及其他领域的数据集重复使用和重组的作用给予批判性关注。
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引用次数: 0
From the bench to public policy: Enhancing public trust in science. 从法官到公共政策:增强公众对科学的信任。
IF 2.9 2区 社会学 Q1 HISTORY & PHILOSOPHY OF SCIENCE Pub Date : 2025-04-01 Epub Date: 2025-01-13 DOI: 10.1177/03063127241310587
Shobita Parthasarathy

There is growing concern around the world about declining trust in the scientific enterprise. Some STS scholars argue that the solution is to move to a system of 'virtual diversity' where scientists are responsible for translating public concerns into their work. This commentary argues that this containment approach will have the opposite effect. The history of similar efforts suggests that scientists have trouble understanding the scope and urgency of public frustrations, and devalue the contributions of non-scientists, damaging the social fabric. A better approach for producing socially useful science and enhancing public trust is to create a truly inclusive scientific enterprise, which takes the knowledge and priorities of non-scientists seriously and engages them throughout the investigative process.

全世界越来越担心人们对科学事业的信任度下降。一些STS学者认为,解决方案是转向一种“虚拟多样性”的系统,在这种系统中,科学家负责将公众关注的问题转化为他们的工作。这篇评论认为,这种遏制措施将产生相反的效果。类似努力的历史表明,科学家很难理解公众挫折感的范围和紧迫性,并且贬低了非科学家的贡献,破坏了社会结构。生产对社会有用的科学和增强公众信任的更好方法是创建一个真正包容的科学企业,认真对待非科学家的知识和优先事项,并在整个调查过程中让他们参与。
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引用次数: 0
Virtual diversity: Resolving the tension between the wider culture and the institution of science. 虚拟多样性:解决更广泛的文化与科学机构之间的矛盾。
IF 2.9 2区 社会学 Q1 HISTORY & PHILOSOPHY OF SCIENCE Pub Date : 2025-04-01 Epub Date: 2024-07-29 DOI: 10.1177/03063127241263609
Harry Collins, Robert Evans, Luis Reyes-Galindo

There are widespread calls for increased demographic diversity in science, often linked to the epistemic claim that including more perspectives will improve the quality of the knowledge produced. By distinguishing between demographic and epistemic diversity, we show that this is only true some of the time. There are cases where increasing demographic diversity will not bring about the necessary epistemic diversity and cases where failing to exclude some voices reduces the quality of the scientific debate. We seek to resolve these tensions with an analysis that turns on the way the experience-based expertise of non-scientists can be absorbed into mainstream science. Mostly it has to be done via what we call 'virtual diversity', in which scientists take responsibility for acquiring interactional expertise in the non-scientific expertise-based domains which they consider provide knowledge valuable to the science. We argue that virtual diversity represents the only feasible option in most scenarios, with cases where demographic diversity or full cultural mergers provide the solution being the exception rather than the rule. This analysis is an exercise in the sociology of knowledge, which is considered as being continuous with philosophy. The paper is prescriptive as well as descriptive, and the moral, cultural, political, and educational implications of the argument are drawn out. A main conclusion is that the acquisition of virtual diversity should be a new norm for science, allowing the voices of experienced non-scientist citizens to be heard but without eroding the institution of science, which continues to be a vital foundation of truth in democracy.

人们普遍呼吁增加科学领域的人口多样性,这往往与认识论的主张有关,即纳入更多观点将提高所产生知识的质量。通过区分人口多样性和认识论多样性,我们表明这只是在某些时候是正确的。在有些情况下,增加人口多样性并不会带来必要的认识论多样性,而在有些情况下,不排除某些声音会降低科学辩论的质量。我们试图通过一种分析方法来解决这些矛盾,即如何将非科学家以经验为基础的专业知识纳入主流科学。在大多数情况下,这必须通过我们所说的 "虚拟多样性 "来实现,即科学家负责在他们认为对科学有价值的非科学专业知识领域获取互动专业知识。我们认为,在大多数情况下,虚拟多样性是唯一可行的选择,而人口多样性或全面文化合并提供的解决方案只是例外,而不是常规。这一分析是知识社会学的一项实践,而知识社会学与哲学是相通的。本文既是描述性的,也是规定性的,并引出了论证在道德、文化、政治和教育方面的影响。一个主要结论是,虚拟多样性的获得应成为科学的新规范,允许有经验的非科学家公民发表意见,但不会削弱科学制度,因为科学制度仍然是民主中真理的重要基础。
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引用次数: 0
Numbers and emotions in the governance of the Covid-19 datademic. Covid-19 数据学术治理中的数字与情感。
IF 2.9 2区 社会学 Q1 HISTORY & PHILOSOPHY OF SCIENCE Pub Date : 2025-04-01 Epub Date: 2024-07-29 DOI: 10.1177/03063127241262457
Emmanuel Didier

There is a rich body of literature on numbers as tools of governance. But the attention of the corpus in question is almost entirely on the rational properties of quantification. This article shows that government by numbers is also, and inseparably, a government by feelings. The Covid-19 pandemic was also a datademic in the sense that numbers populated and spread through the public sphere. We focus on three cases. Death tolls were associated with fear, immunization rates were linked to hope, and the threshold of 100,000 deaths was credited with symbolic significance. This article, based on the French case, examines how data like these, frequently perceived as objective evidence, can at the same time be a source of emotional engagement and, as such, be used to inform modes of public governance in times of crises.

关于数字作为治理工具的文献数量非常丰富。但这些文献的关注点几乎都集中在量化的理性属性上。本文指出,数字政府也是一种感情政府,而且不可分割。从数字在公共领域充斥和传播的意义上讲,科维德-19 大流行病也是一种数据学术。我们重点关注三个案例。死亡人数与恐惧有关,免疫接种率与希望有关,而 10 万人死亡的门槛则具有象征意义。本文以法国的案例为基础,探讨了类似这些经常被视为客观证据的数据,如何同时成为情感参与的源泉,并因此在危机时期被用于指导公共治理模式。
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引用次数: 0
Making modafinil: Classification and serendipity in drug development 莫达非尼的制造:药物开发中的分类和偶然性
IF 3 2区 社会学 Q1 HISTORY & PHILOSOPHY OF SCIENCE Pub Date : 2025-03-18 DOI: 10.1177/03063127251322113
Stephen J Scholte, Ohid Yaqub
How does a compound become a drug, and how do we decide for whom the drug is intended? Building a history of modafinil, this article examines how classification and serendipity affect drug development. We explore how mental health categories interact with drug development by tracing: how compound CRL40,476 was inadvertently created while exploring other compounds, and then became a focal point for development efforts; and how it secured Schedule IV status (low potential for abuse), orphan drug status (for niche markets), and then blockbuster drug status (>$1bn in annual sales). Classification of modafinil and its uses were negotiated under conditions of uncertainty, requiring substantial efforts to align interests across a wide array of institutions. We highlight these contingencies to show the considerable efforts that go into finding, and creating, markets for drug development. Taking these efforts for granted may confuse invention with innovation and is likely to lead to understatement of the costs and choices involved in drug development, particularly where mental health categories are concerned.
一种化合物如何成为一种药物,我们如何决定这种药物的目标人群?建立莫达非尼的历史,这篇文章探讨如何分类和意外影响药物的发展。我们通过追踪来探索心理健康类别如何与药物开发相互作用:化合物CRL40,476如何在探索其他化合物时无意中被创造出来,然后成为开发工作的焦点;以及它是如何获得附表IV(低滥用潜力)、孤儿药(针对利基市场)和重磅药(年销售额达10亿美元)地位的。莫达非尼的分类及其用途是在不确定的条件下进行谈判的,需要作出大量努力,以协调各种机构的利益。我们强调这些突发事件是为了表明为寻找和创造药物开发市场所作的巨大努力。将这些努力视为理所当然可能会混淆发明与创新,并可能导致低估药物开发所涉及的成本和选择,特别是在涉及精神健康类别的情况下。
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引用次数: 0
From distance(s) to civilization(s): (Extra)terrestrial intelligence(s) of (post-) Soviet Armenian astronomy 从距离(s)到文明(s):(后)苏联亚美尼亚天文学的(外)地智能(s)
IF 3 2区 社会学 Q1 HISTORY & PHILOSOPHY OF SCIENCE Pub Date : 2025-03-18 DOI: 10.1177/03063127251324659
Gabriela Radulescu
This article draws on post-positivist conceptualizations of distance in human geography to look at how Byurakan Astrophysical Observatory (BAO) astronomers identified with an ancient scientific-cultural legacy and how a corresponding imaginary bonded this legacy, BAO, and extraterrestrial intelligence. As part of the growing prospect of reaching out to other civilizations through radio waves in the 1960s, radio astronomers from Russian research institutes initiated the theoretical and empirical study of extraterrestrial civilizations and engaged with their Armenian counterparts. In so doing, they set a framework for contact through electromagnetic waves with extraterrestrial civilizations. Thereby, the epistemological constraints and affordances of astronomical distance gave rise to an (extra)terrestrial narrative of development. Armenian natural scientists responded positively to the study of extraterrestrial civilizations, though their engagement with this field remained passive. The scientific imaginary of extraterrestrial civilizations, however, contained pillars for the study of Armenian ancient astronomical past. As a result, when Soviet radio astronomy legitimized the study of extraterrestrial civilizations, it also legitimized the study of distant civilizations situated in the perceived historical past of the Armenian astronomical intelligentsia. In the rediscovery of ancient Armenia as an astronomical civilization by BAO (archeo)astronomers, national identity and historical continuity were at stake. Today, this imaginary continues.
本文利用人文地理学中后实证主义的距离概念,来研究比拉坎天体物理天文台(BAO)的天文学家如何认同一种古老的科学文化遗产,以及相应的想象如何将这种遗产、BAO和地外智慧联系起来。作为20世纪60年代通过无线电波与其他文明接触的日益增长的前景的一部分,来自俄罗斯研究机构的射电天文学家开始了对外星文明的理论和实证研究,并与亚美尼亚同行进行了接触。通过这样做,他们建立了一个通过电磁波与外星文明接触的框架。因此,天文学距离的认识论约束和启示产生了一种(外)地球的发展叙事。亚美尼亚自然科学家对地外文明的研究反应积极,尽管他们在这个领域的参与仍然是被动的。然而,地外文明的科学想象为研究亚美尼亚古代天文学的过去提供了支柱。因此,当苏联射电天文学使地外文明的研究合法化时,它也使亚美尼亚天文学知识分子所认为的历史上的遥远文明的研究合法化。在考古天文学家重新发现古代亚美尼亚是一个天文文明的过程中,国家身份和历史连续性受到了威胁。今天,这种想象还在继续。
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引用次数: 0
Bettie's travels: How pigs enable new connections between human health innovations and industrial agricultural pork production in Denmark. 贝蒂的旅行在丹麦,猪如何在人类健康创新和工业化农业猪肉生产之间建立新的联系。
IF 2.9 2区 社会学 Q1 HISTORY & PHILOSOPHY OF SCIENCE Pub Date : 2025-02-01 Epub Date: 2024-08-16 DOI: 10.1177/03063127241268772
Eva Vibeke Kofoed Pihl

Drawing on ethnographic fieldwork, this paper unfolds the past and present uses of pigs that structured the emergence of a pig model of gut-hormone based appetite control, leading to the current scientific breakthrough in treatment of obesity. While the hyping of next generation medications for obesity and type 2 diabetes centers on the efficacy and profits attached to these drugs, I unfold how science embedded in this development had the in-vivo and in-vitro travels of Bettie-an obese Göttingen Minipig pig-at its heart. Tracing how she became embedded in a circuit of vitality connecting industrial agriculture and science on human health, I show how both are governed by a shared valuation of pigs' fat. Bettie's fat, however, was not to be eaten. Instead, Bettie was consumed in knowledge production. For pigs to enter this new trajectory, Bettie emerged as a promissory site for extraction of molecular information made possible by new visualization technologies and representational strategies that allowed for the coupling of human-pig physiology at the cellular level. While her travels were spurred by the hope of discovery of small molecules, Bettie allows us to grasp an important shift in science, as the insights derived from her work emphasized the importance of physiology and the environment for human obesity. In doing so, she served as a visceral model. On a larger scale, Bettie's entering science on human health reflects a recursive structure of knowledge in which the present problems with obesity and type 2 diabetes derive from the solutions to previous problems associated with alleviating hunger.

本文通过人种学田野调查,阐述了猪在过去和现在的用途,这些用途构建了一个基于肠道激素的食欲控制猪模型,从而导致了目前在治疗肥胖症方面的科学突破。虽然治疗肥胖症和 2 型糖尿病的新一代药物的宣传重点是这些药物的疗效和利润,但我将介绍科学如何以肥胖的哥廷根 Minipig 猪贝蒂的体内和体外旅行为核心进行发展。在追溯贝蒂如何融入连接工业化农业和人类健康科学的生命力回路的过程中,我展示了两者是如何受猪脂肪的共同价值所支配的。然而,贝蒂的脂肪并不是用来吃的。相反,贝蒂被用于知识生产。为了让猪进入这一新的轨迹,贝蒂成为了提取分子信息的理想场所,新的可视化技术和表现策略使人猪生理学在细胞水平上的耦合成为可能。虽然她的旅行是受发现小分子的希望所驱使,但贝蒂让我们了解到科学的一个重要转变,因为从她的工作中得出的见解强调了生理和环境对人类肥胖的重要性。在此过程中,她起到了内脏模型的作用。在更大的范围内,贝蒂进入人类健康领域的科学反映了一种递归的知识结构,即目前的肥胖症和 2 型糖尿病问题源自以前与减轻饥饿有关的问题的解决方案。
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引用次数: 0
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