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“Black race”, “Schwarze Hautfarbe”, “Origine africaine”, or “Etnia nera”? The absent presence of race in European pharmaceutical regulation “黑人种族”、“Schwarze Hautfarbe”、“起源非洲”或“Etnia nera”?欧洲药品监管中不存在种族问题
IF 1.6 4区 医学 Q2 Social Sciences Pub Date : 2022-12-14 DOI: 10.1057/s41292-022-00291-7
S. Mulinari, Anna Bredström
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引用次数: 1
Living in the era of codes: a reflection on China's health code system. 生活在代码时代:对中国卫生代码制度的反思。
IF 1.6 4区 医学 Q2 Social Sciences Pub Date : 2022-12-01 DOI: 10.1057/s41292-022-00290-8
Haiqing Yu

This article offers a critical analysis of China's health code system, a data-powered pandemic control and contact tracing system that supposedly subjects all individuals in the country to its panopticon control, a surveillance system that monitors and categorises the Chinese population into the healthy (green), the dubious (yellow), and the unhealthy (red). The article highlights the pretence of surveillance as care and the digital divide that normalises discrimination against the elderly and other digitally left-behind population. It also illustrates how, from policy making and technological design to user engagement, the health code system is implemented, optimised, and used in everyday life to meet the needs of the vulnerable population. The health code is better taken as a medium of adaptable and communicative process that can reset the relation between the system and the lifeworld. It is the process of interchange between the system and the lifeworld that deserves our critical attention.

本文对中国的健康代码系统进行了批判性分析,该系统是一个由数据驱动的流行病控制和联系人追踪系统,据称全国所有个人都在其监控之下,该监控系统将中国人口分为健康人(绿色)、可疑人(黄色)和不健康人(红色)。这篇文章强调了将监控伪装成关爱的做法,以及将歧视老年人和其他数字留守人群正常化的数字鸿沟。文章还说明了从政策制定、技术设计到用户参与,健康代码系统是如何在日常生活中实施、优化和使用的,以满足弱势群体的需求。健康代码最好被视为一种适应性和交流过程的媒介,可以重置系统与生活世界之间的关系。值得我们密切关注的是系统与生活世界之间的交流过程。
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引用次数: 0
"The elephant in the room": social responsibility in the production of sociogenomics research. "房间里的大象":社会基因组学研究成果中的社会责任。
IF 1.3 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2022-12-01 Epub Date: 2021-07-03 DOI: 10.1057/s41292-021-00239-3
Daphne Oluwaseun Martschenko

Sociogenomics examines the extent to which genetic differences between individuals relate to differences in social and economic behaviors and outcomes. The field evokes mixed reactions. For some, sociogenomics runs the risk of normalizing eugenic attitudes and legitimizing social inequalities. For others, sociogenomics brings the promise of more robust and nuanced understandings of human behavior. Regardless, a history of misuse and misapplication of genetics raises important questions about researchers' social responsibilities. This paper draws on semi-structured interviews with sociogenomics researchers who investigate intelligence and educational attainment. It does so to understand how researcher's motivations for engaging in a historically burdened field connect to their views on social responsibility and the challenges that come with it. In interviews, researchers highlighted the trade-off between engaging in socially contested research and the potential benefits their work poses to the social sciences and clinical research. They also highlighted the dilemmas of engaging with the public, including the existence of multiple publics. Finally, researchers elucidated uncertainties over what social responsibility is in practice and whether protecting against the misuse and misinterpretation of their research is wholly possible. This paper concludes by offering ways to address some of the challenges of social responsibility in the production of knowledge.

社会基因组学研究个体之间的基因差异与社会和经济行为及结果差异的关联程度。这一领域引起的反应不一。有些人认为,社会基因组学有可能使优生态度正常化,并使社会不平等合法化。而对另一些人来说,社会基因组学则带来了对人类行为进行更有力、更细致理解的希望。无论如何,滥用和误用遗传学的历史提出了有关研究人员社会责任的重要问题。本文采用半结构式访谈的方式,采访了研究智力和教育程度的社会基因组学研究人员。这样做是为了了解研究人员从事这一历史负担沉重的领域的动机是如何与他们对社会责任的看法以及随之而来的挑战相联系的。在访谈中,研究人员强调了从事有社会争议的研究与他们的工作为社会科学和临床研究带来的潜在益处之间的权衡。他们还强调了与公众接触的困境,包括多重公众的存在。最后,研究人员阐明了社会责任在实践中的不确定性,以及防止滥用和曲解他们的研究是否完全可行。本文最后提出了在知识生产过程中应对社会责任挑战的一些方法。
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引用次数: 0
Indentured clinical labor? An indigenist standpoint view of ‘forced surrogacy’ and reproductive governance in India 契约临床分娩?印度“强迫代孕”与生殖治理的本土主义观点
IF 1.6 4区 医学 Q2 Social Sciences Pub Date : 2022-10-19 DOI: 10.1057/s41292-022-00284-6
Sanghamitra Das
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引用次数: 0
Agri-food tech’s building block: narrating protein, agnostic of source, in the face of crisis 农业食品技术的基石:叙述蛋白质,来源不可知论,面对危机
IF 1.6 4区 医学 Q2 Social Sciences Pub Date : 2022-10-19 DOI: 10.1057/s41292-022-00287-3
J. Guthman, Charlotte Biltekoff
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引用次数: 2
Epigenetic citizenship and political claims-making: the ethics of molecularizing structural racism. 表观遗传公民权与政治诉求:结构性种族主义分子化的伦理。
IF 1.3 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Pub Date : 2022-10-19 DOI: 10.1057/s41292-022-00286-4
Jessica P Cerdeña

Epigenetics has generated excitement over its potential to inform health disparities research by capturing the molecular signatures of social experiences. This paper highlights the concerns implied by these expectations of epigenetics research and discusses the possible ramifications of 'molecularizing' the forms of social suffering currently examined in epigenetics studies. Researchers working with oppressed populations-particularly racially marginalized groups-should further anticipate how their results might be interpreted to avoid fueling prejudiced claims of biological essentialism. Introducing the concept of 'epigenetic citizenship,' this paper considers the ways environmentally responsive methylation cues may be used in direct-to-consumer testing, healthcare, and biopolitical interactions. The conclusion addresses the future of social epigenetics research and the utility of an epigenetic citizenship framework.

表观遗传学通过捕捉社会经历的分子特征而为健康差异研究提供信息的潜力引起了人们的极大兴趣。本文强调了这些对表观遗传学研究的期望所隐含的担忧,并讨论了将目前表观遗传学研究中的社会痛苦形式 "分子化 "可能带来的影响。从事受压迫人群--尤其是种族边缘化群体--研究的研究人员应进一步预测他们的研究结果可能会被如何解释,以避免助长生物本质论的偏见主张。本文引入了 "表观遗传公民 "的概念,探讨了环境响应性甲基化线索在直接面向消费者的测试、医疗保健和生物政治互动中的应用方式。最后,本文探讨了社会表观遗传学研究的未来以及表观遗传学公民权框架的实用性。
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引用次数: 0
Care during ART scale-up: surviving the HIV epidemic in Ethiopia. 扩大抗逆转录病毒疗法范围期间的护理:埃塞俄比亚艾滋病疫情的生存之道。
IF 1.6 4区 医学 Q2 Social Sciences Pub Date : 2022-10-03 DOI: 10.1057/s41292-022-00283-7
Makoto Nishi

Over the last decades, there has been a worldwide rise of new technologies for controlling the HIV epidemic by expanding antiretroviral medicines. This article examines how the pharmaceutical-driven model of public health, which emerged as a byproduct of antiretroviral treatment (ART) scale-up in Ethiopia, interplayed with local forms of actions, engagements, and voices through which suffering inflicted by the epidemic was cared for. Through the eyes of an Ethiopian woman with HIV, this article illustrates how the increasing emphasis on ART facilitated the defunding of some community-based care practices. Moreover, it rendered the realities of precarious life with HIV invisible in the landscape of therapeutic citizenship. However, for Ethiopians, ART scale-up unfolded amid multiple forms of HIV care practices and relationships that endured stigma, alienation, and uncertainty before and after ART. The experience of surviving the HIV epidemic in Ethiopia provides a vital premise upon which claims of meaningful care are made, and ways to otherwise develop healthcare actions and engagements are sought.

在过去的几十年里,通过扩大抗逆转录病毒药物的使用范围来控制艾滋病疫情的新技术在全球范围内兴起。本文探讨了在埃塞俄比亚,作为扩大抗逆转录病毒疗法(ART)的副产品而出现的以药品为驱动力的公共卫生模式,是如何与当地的行动、参与和声音形式相互作用的。本文通过一位埃塞俄比亚女性艾滋病感染者的视角,阐述了对抗病毒疗法的日益重视如何促进了一些社区护理实践的资金剥离。此外,它还使岌岌可危的艾滋病毒感染者的生活现实在治疗性公民身份中变得无影无踪。然而,对于埃塞俄比亚人来说,抗逆转录病毒疗法的推广是在多种形式的艾滋病护理实践和关系中展开的,这些实践和关系在抗逆转录病毒疗法前后都承受着耻辱、疏远和不确定性。在埃塞俄比亚,艾滋病毒流行病的生存经验提供了一个重要的前提,在此基础上提出了有意义的护理要求,并寻求以其他方式发展医疗保健行动和参与。
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引用次数: 0
The emergence of multimorbidity as a matter of concern: a critical review 多发性疾病的出现是一个值得关注的问题:一项批判性的综述
IF 1.6 4区 医学 Q2 Social Sciences Pub Date : 2022-09-24 DOI: 10.1057/s41292-022-00285-5
Esca van Blarikom, N. Fudge, D. Swinglehurst
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引用次数: 5
Core values of genomic citizen science: results from a qualitative interview study. 基因组公民科学的核心价值:一项定性访谈研究的结果。
IF 1.6 4区 医学 Q2 Social Sciences Pub Date : 2022-06-01 DOI: 10.1057/s41292-020-00208-2
Christi J Guerrini, Meredith Trejo, Isabel Canfield, Amy L McGuire

Genomic citizen science initiatives that promote public involvement in the study or manipulation of genetic information are flourishing. These initiatives are diverse and range from data donation studies, to biological experimentation conducted in home and community laboratories, to self-experimentation. Understanding the values that citizen scientists associate with their activities and communities can be useful to policy development for citizen science. Here, we report values-relevant data from qualitative interviews with 38 stakeholders in genomic citizen science. Applying a theoretical framework that describes values as transcendent beliefs about desirable end states or behaviors that can be categorized according to the motivational goals that they express and the interests they serve, we identified nine core values of genomic citizen science: altruism, autonomy, fun, inclusivity, openness, reciprocity, respect, safety, and solidarity.

促进公众参与基因信息研究或操纵的基因组公民科学倡议正在蓬勃发展。这些倡议是多种多样的,范围从数据捐赠研究到在家庭和社区实验室进行的生物实验,再到自我实验。理解公民科学家与他们的活动和社区联系在一起的价值观可以对公民科学的政策制定有用。在这里,我们报告了与基因组公民科学中38个利益相关者的定性访谈的价值相关数据。应用一个理论框架,将价值观描述为对理想的最终状态或行为的超越信念,可以根据他们表达的动机目标和他们所服务的利益进行分类,我们确定了基因组公民科学的九个核心价值观:利他主义,自主性,乐趣,包容性,开放性,互惠性,尊重,安全和团结。
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引用次数: 10
Device activism and material participation in healthcare: retracing forms of engagement in the #WeAreNotWaiting movement for open-source closed-loop systems in type 1 diabetes self-care. 医疗保健中的设备行动主义和物质参与:追溯 1 型糖尿病自我护理开源闭环系统 #WeAreNotWaiting 运动中的参与形式。
IF 1.6 4区 医学 Q2 Social Sciences Pub Date : 2022-04-22 DOI: 10.1057/s41292-022-00278-4
Bianca Jansky, Henriette Langstrup

The #WeAreNotWaiting movement is a global digital health phenomenon in which people with diabetes, mainly type 1 diabetes (T1D), engage in the development and usage of open-source closed-loop technology for the improvement of their "chronic living" (Wahlberg et al. 2021). The characteristics of a digitally enabled and technologically engaged global activist patient collective feed into existing narratives of user-led and open-source innovation. They also call for more exploration of what it actually means to be locally involved in this kind of technologically mediated and global form of patient engagement. Building on empirical research conducted in the German healthcare context, we explore the different forms of material participation encountered among a group of people with T1D (who describe themselves as loopers), who are engaged in the development and usage of this open-source technology. Introducing the concept of device activism, we retrace three different device-centered narratives that show how a globally shared concern and political participation through technology use varies with local practices. Hereby we stress that the engagement in the #WeAreNotWaiting movement is both shaped by and is shaping the matters of concerns: devices in, on, and with bodies.

#WeAreNotWaiting 运动是一种全球数字健康现象,其中糖尿病患者,主要是 1 型糖尿病(T1D)患者,参与开发和使用开源闭环技术,以改善他们的 "慢性生活"(Wahlberg 等,2021 年)。具有数字功能和技术参与的全球积极患者集体的特征,与现有的用户主导和开源创新的叙事相辅相成。他们还呼吁更多地探索本地参与这种以技术为媒介的全球患者参与形式的实际意义。在德国医疗保健领域开展的实证研究的基础上,我们探讨了一群患有 T1D 的患者(他们自称为 loopers)的不同形式的物质参与,他们参与了这项开源技术的开发和使用。我们引入了 "设备行动主义"(device activism)的概念,回溯了三个不同的以设备为中心的叙事,展示了全球共同关注的问题和通过技术使用进行的政治参与如何因地制宜。在此,我们强调,#我们不等待#运动中的参与既是由关注的问题--身体中、身体上和身体上的设备--形成的,也正在形成。
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Biosocieties
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