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Surveillance life and the shaping of 'genetically at risk' chronicities in Denmark. 丹麦的监测生活和“基因风险”慢性病的形成。
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2022-03-01 Epub Date: 2021-07-13 DOI: 10.1080/13648470.2021.1893654
Laura Louise Heinsen, Ayo Wahlberg, Helle Vendel Petersen

Today, in the field of hereditary colorectal cancer in Denmark, more than 40,000 identified healthy individuals with an increased risk of cancer are enrolled in a surveillance program aimed at preventing cancer from developing, with numbers still growing. What this group of healthy individuals has in common is lifelong regular interaction with a healthcare system that has traditionally been geared towards treating the acutely and chronically ill. In this article, we explore how people living with an inherited elevated risk of colorectal cancer orient themselves towards their families' and their own predispositions as well as the lifelong surveillance trajectories that they have embarked upon - what we call surveillance life. Unlike prior critiques of predictive genetic testing as generative of 'pre-patients' or 'pre-symptomatically ill', we suggest that for those enrolled in lifelong surveillance programmes in welfare state Denmark, the relevance of risk fluctuates according to certain moments in life, e.g. at family reunions, when a close relative falls ill, in the time leading up to a surveillance colonoscopy or when enduring the procedures themselves. As such, rather than characterising surveillance life in terms of 'living with chronic risk' we show how 'genetically at risk' chronicities take shape as persons come to terms with a disease that possibly awaits them leading them to recalibrate familial bonds and responsibilities while leading lives punctuated by regular medical check-ups.

今天,在丹麦的遗传性结直肠癌领域,有4万多名癌症风险增加的健康个体参加了一个旨在预防癌症发展的监测项目,这个数字还在不断增长。这群健康个体的共同之处在于,他们一生都在与传统上以治疗急性和慢性疾病为目标的医疗体系进行定期互动。在这篇文章中,我们探讨了患有遗传性结直肠癌高风险的人是如何根据他们的家庭和他们自己的易感性来定位自己的,以及他们已经开始的终身监测轨迹——我们称之为监测生活。与先前对预测性基因检测的批评不同,我们认为,对于那些在福利国家丹麦参加终身监测项目的人来说,风险的相关性根据生活中的某些时刻而波动,例如在家庭团聚时,当近亲生病时,在进行监测结肠镜检查之前的时间或在忍受程序本身时。因此,我们不是用“生活在慢性风险中”来描述监测生活,而是展示“遗传风险”慢性病是如何形成的,因为人们面对一种可能等待着他们的疾病,导致他们重新调整家庭关系和责任,同时过着定期体检的生活。
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引用次数: 4
Merging care and prevention: preventive properties of antiretroviral drugs and HIV chronification in the case of Switzerland. 合并护理和预防:瑞士案例中抗逆转录病毒药物的预防特性和艾滋病毒的慢性化。
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2022-03-01 Epub Date: 2021-09-20 DOI: 10.1080/13648470.2021.1949891
Noëllie Genre, Francesco Panese

Medication is closely involved in the subjective experience of chronic diseases, but also in the chronification process of illnesses which is described in this paper in the specific case of HIV. The development of antiretroviral drugs (ARVs) and the progressive recognition of their potential dual use as treatment as prevention (TasP) and pre-exposure prophylaxis (PrEP) reshape the experience of HIV and its transmission. Acknowledging the importance of a socioanthropological approach to drugs, this paper highlights how therapeutic strategies of treatment and prevention currently shape the process of HIV chronification and its experience for people concerned with ARVs in Switzerland, whether they are seropositive patients on lifelong treatment or seronegative people affected by the preventive properties of drugs.

药物治疗与慢性病的主观体验密切相关,也与疾病的慢性化过程密切相关,本文将以HIV的具体病例进行描述。抗逆转录病毒药物(ARVs)的发展以及人们逐渐认识到其治疗与预防(TasP)和暴露前预防(PrEP)双重用途的潜力,重塑了艾滋病毒及其传播的经历。认识到社会人类学药物研究方法的重要性,本文强调了目前治疗和预防的治疗策略如何影响瑞士与抗逆转录病毒药物有关的人的艾滋病毒慢性化过程及其经历,无论他们是接受终身治疗的血清阳性患者还是受药物预防特性影响的血清阴性患者。
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引用次数: 0
Failing livers, anticipated futures and un/desired transplants. 肝脏衰竭,预期的未来和不希望的移植。
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2022-03-01 Epub Date: 2022-02-21 DOI: 10.1080/13648470.2021.2017126
Julia Rehsmann

This article looks at liver transplants as life-prolonging treatment for chronic liver failure and examines the role anticipation plays in the context of chronic liver conditions. Based on anthropological fieldwork in Germany, this article draws on three exemplary patient accounts to show how the anticipatory experience of waiting for a liver transplant serves as an important period in transplant trajectories, and how the lack of a wait may have long-term consequences for patients' wellbeing. A focus on waiting and anticipation in the context of chronic livers enables new understandings of the complex temporal qualities that living with chronic conditions entails. As the sole long-term treatment available for failing livers, the possibilities of transplant medicine shape patients' anticipation of their future. Conversely, the particular futures that patients anticipate mould how they make sense of their transplant and their chronic pre- and post-transplant lives. This article shows that rather than offering a unilinear treatment with a clear-cut end, liver transplants, as treatment for a wide range of chronic conditions, reproduce chronic lives.

这篇文章着眼于肝移植作为慢性肝功能衰竭的延长生命的治疗方法,并探讨了预期在慢性肝病的背景下所起的作用。基于在德国的人类学田野调查,本文借鉴了三个典型的患者帐户,以显示等待肝移植的预期经验如何在移植轨迹中发挥重要作用,以及缺乏等待如何可能对患者的健康产生长期影响。在慢性肝病的背景下,对等待和预期的关注使人们对慢性疾病所带来的复杂的时间特性有了新的理解。作为肝脏衰竭的唯一长期治疗方法,移植医学的可能性塑造了患者对未来的预期。相反,病人对未来的预期会影响他们如何理解自己的移植手术,以及他们在移植前和移植后的慢性生活。这篇文章表明,肝移植作为一种治疗多种慢性疾病的方法,并不是提供一种具有明确终点的线性治疗,而是再现慢性生命。
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引用次数: 1
Poverty and neglected tropical diseases in the American Rural South, by Christine Crudo Blackburn and Macey Lively, Lanham, MD, Lexington Books, 2021 《美国南部农村的贫困和被忽视的热带病》,克里斯汀·克鲁多·布莱克本和梅西·莱弗利著,兰哈姆,医学博士,列克星敦出版社,2021年
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2022-02-04 DOI: 10.1080/13648470.2021.1994336
Sarah E. Smith, Baili Gall, Michael Smetana, Maegan McCane, Courtney Helfrecht
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引用次数: 2
Vaccinal chronicity: immunotherapy, primary care, and the temporal remaking of lung cancer’s patienthood in Cuba 疫苗慢性性:古巴肺癌患者的免疫治疗、初级保健和时间重塑
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2022-01-02 DOI: 10.1080/13648470.2022.2041549
Nils Graber
Abstract The Cuban biotechnology industry is producing cancer immunotherapy, in particular, therapeutic vaccines that actively stimulate the immune system to stabilise the tumour. These products aim to transform metastatic malignancies into a chronic disease. Since 2010, this therapeutic concept has been integrated within a public health experiment, consisting of the large distribution of immunotherapies, including in primary healthcare centres, to enhance access and assess its effectiveness on a wider population of patients. Such experimental intervention, consisting of post-marketing clinical trials, has focused only on lung cancer, one of the most widespread and lethal cancers on the island. Combining interviews with ethnographic observations focusing on care performed by professionals, patients, and their relatives, this paper analyses the experience of lung cancer chronicity under this type of immunotherapy in Cuba. It shows how a certain form of continuity is made between prophylactic and therapeutic vaccination to shape a new temporality of cancer care, through the integration within primary care, constant access to biotechnology, and multiple care practices directed to strengthen the immunotherapy’s efficacy. If vaccinal chronicity remains fragile due to its experimental dimension and the fact that long-term survivorship is still an exceptional phenomenon, lung cancer patienthood is deeply transformed through a shared effort of the people and the state to provide more stable, meaningful, and inclusive care.
古巴生物技术产业正在生产癌症免疫疗法,特别是积极刺激免疫系统以稳定肿瘤的治疗性疫苗。这些产品旨在将转移性恶性肿瘤转化为慢性疾病。自2010年以来,这一治疗概念已被纳入一项公共卫生试验,包括在初级保健中心大规模分发免疫疗法,以增加获得免疫疗法的机会,并评估其对更广泛患者群体的有效性。这种实验性干预包括上市后的临床试验,只关注肺癌,这是岛上最普遍和最致命的癌症之一。结合访谈和人种学观察,重点关注专业人员、患者及其亲属的护理,本文分析了古巴在这种免疫治疗下肺癌慢性化的经验。它展示了如何在预防性和治疗性疫苗接种之间形成某种形式的连续性,通过初级保健的整合,不断获得生物技术,以及旨在加强免疫疗法功效的多种护理实践,形成一种新的临时性癌症护理。如果疫苗的慢性性由于其实验性而仍然脆弱,并且长期存活仍然是一种特殊现象,那么通过人民和国家的共同努力,提供更稳定、更有意义和更包容的护理,肺癌患者将得到深刻的改变。
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引用次数: 0
Chronicity and the patient’s decision-making work. The case of an advanced cancer patient 慢性与患者的决策工作。一个晚期癌症患者的病例
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2022-01-02 DOI: 10.1080/13648470.2022.2041546
S. Besle, A. Sarradon-Eck
Abstract This paper focuses on the particular situation of an advanced cancer patient whose condition has taken a chronic turn. We argue that chronicity of this kind sometimes falls at the frontier of Evidence Based Medicine because the uncertainty about the patient’s condition can lead physicians to resort to clinical trials or non-licensed drugs to prevent the disease from progressing. This situation leaves plenty of scope for individual adjustments between patients and their doctors. Advanced cancer is regarded here not just as a biological event but as a chronic illness and a ‘negotiated reality’. We argue that the chronicity of advanced cancer patients’ situation broadens the patients’ scope for ‘work’, and we have called this specific type of patient’s work ‘decision-making work’. This paper is based on a case study focusing on Patrick, a middle-aged Frenchman with metastatic lung cancer who underwent oncological treatment for seven years and was strongly determined to find new therapeutic options even if this meant having to go abroad. He actively orchestrated his therapeutic itinerary by reorganising his relationships with the medical world and coordinating the physicians’ work. His particular social position enabled Patrick to bypass some of the current medical rules and to reorganise the usual pattern of distribution of medical responsibilities. The chronicity of his condition placed him at the very frontier of the health care system.
摘要本文主要介绍一位晚期癌症患者的特殊情况,他的病情已经发生了慢性转变。我们认为,这种慢性病有时属于循证医学的前沿,因为对患者病情的不确定性可能导致医生求助于临床试验或未经许可的药物来预防疾病的进展。这种情况给病人和医生之间的个人调整留下了很大的空间。晚期癌症不仅被视为一种生物事件,而且被视为一种慢性疾病和“协商现实”。我们认为,晚期癌症患者的慢性状况扩大了患者的“工作”范围,我们将这种特定类型的患者工作称为“决策工作”。本文基于Patrick的案例研究,Patrick是一名患有转移性肺癌的中年法国人,他接受了七年的肿瘤治疗,并坚定地决定寻找新的治疗方案,即使这意味着必须出国。他通过重组他与医学界的关系和协调医生的工作,积极地安排他的治疗行程。他特殊的社会地位使帕特里克能够绕过一些现行的医疗规则,重新组织医疗责任分配的通常模式。他的慢性疾病使他处于医疗保健系统的前沿。
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引用次数: 1
The nebula of chronicity: dealing with metastatic breast cancer in the UK 慢性星云:处理转移性乳腺癌在英国
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2022-01-02 DOI: 10.1080/13648470.2022.2041547
Cinzia Greco
Abstract In this article, I explore how the concept of chronicity is mobilised by different actors in reference to metastatic breast cancer (MBC) and the transformation of the condition as a consequence of medical innovations. I do so by using data collected in the UK between 2017 and 2019 through in-depth interviews with medical professionals involved in the treatment of MBC and with patients living with MBC. I show how chronicity appears as a multidimensional and uncertain concept, which I analyse through the image of the nebula. While the medical literature tends to consider MBC chronic or on route to chronicisation, the medical professionals interviewed were uncertain as to whether MBC can be considered a chronic disease, and attempted to discuss chronicity through survival times, the kind of management possible for the disease, and how it compares to other conditions more commonly considered chronic. In some cases, the patients considered the idea of chronicity a source of hope or a way to link their condition to those of people with other diseases; however, they generally rejected the definition as inappropriate for their experience of the illness. Analysing the fluid uses of the concept of chronicity in the case of MBC contributes to the debate within medical anthropology on how medical categories acquire different values and uses and on the circulation of meanings between the biomedical context and the patient experience.
在这篇文章中,我探讨了慢性的概念是如何被不同的参与者动员,参考转移性乳腺癌(MBC)和条件的转变作为医学创新的结果。为此,我使用了2017年至2019年在英国收集的数据,这些数据是通过对参与MBC治疗的医疗专业人员和MBC患者的深入访谈收集的。我展示了慢性是如何作为一个多维度和不确定的概念出现的,我通过星云的图像分析了这一点。虽然医学文献倾向于认为MBC是慢性疾病或正在走向慢性疾病,但接受采访的医疗专业人员不确定MBC是否可以被视为慢性疾病,并试图通过生存时间、疾病可能的管理方式以及与其他通常被认为是慢性的疾病相比如何讨论慢性疾病。在某些情况下,患者认为慢性病是希望的源泉,或者是将他们的病情与患有其他疾病的人的病情联系起来的一种方式;然而,他们普遍拒绝这个定义,认为这与他们的疾病经历不合适。在MBC案例中分析慢性病概念的流动用途有助于医学人类学内部关于医疗类别如何获得不同价值和用途以及生物医学背景和患者经验之间意义循环的辩论。
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引用次数: 2
The friend within? The implantable cardioverter defibrillator between saving lives and chronically impairing them 内心的朋友?植入式心律转复除颤器在挽救生命和长期损害生命之间
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2022-01-02 DOI: 10.1080/13648470.2022.2041548
F. Barlocco
Abstract This article considers the way in which a medical technology, the implantable cardioverter defibrillator (ICD), by preventing fatal outcomes, in this case sudden death, deriving from cardiac diseases, and specifically hypertrophic cardiomyopathy, contributes to the development of a particular type of chronicity. While biomedicine celebrates technological advances in treatments and naturalises chronicity, focussing on life expectancy as a victory over the ‘acute’ aspects of the disease, the way in which patients live with the disease is left unquestioned. The article follows Smith-Morris’s (2010) perspective in seeing chronicity as the never-ending process of identifying with one’s disease, adding a focus on the role played by an embodied technology in relation to it. Based on participant observation in a clinical setting and interviews with clinicians, the article interrogates three key themes in the chronicity of cardiac patients implanted with an ICD: risk, quality of life and choice. The data shows a constant tension between managing a one-off potentially fatal ‘acute’ risk and life with serious disruptions due to the limitations imposed by the implanted device. The article argues that patients’ resources for facing the life and identity disrupted by the disease are limited by ideas of what living a diseased body is, which acritically follow discourses of ‘patient choice’ and a ‘technological imperative’ to avoid risk.
摘要:本文考虑了一种医疗技术,即植入式心律转复除颤器(ICD),通过预防致命的结果,在这种情况下猝死,源自心脏疾病,特别是肥厚性心肌病,有助于发展特定类型的慢性。虽然生物医学庆祝治疗方面的技术进步,并将慢性病归化,把重点放在预期寿命上,认为这是对这种疾病“急性”方面的胜利,但患者的生活方式却没有受到质疑。这篇文章遵循了Smith-Morris(2010)的观点,将慢性病视为一个人对疾病永无止境的认同过程,并将重点放在了与疾病相关的具体化技术所起的作用上。基于临床环境中的参与者观察和与临床医生的访谈,本文探讨了植入ICD的心脏病患者慢性性的三个关键主题:风险、生活质量和选择。数据显示,由于植入设备的限制,管理一次性潜在致命的“急性”风险和生命严重中断之间存在持续的紧张关系。这篇文章认为,病人面对被疾病打乱的生活和身份的资源,受到了关于如何活在一个患病的身体上的观念的限制,这些观念尖锐地遵循了“病人选择”和避免风险的“技术要求”的话语。
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引用次数: 0
The movement for global mental health: critical views from South and Southeast Asia 全球精神卫生运动:来自南亚和东南亚的批评观点
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2021-12-02 DOI: 10.1080/13648470.2021.2007755
Arnav Sethi
Critiques of psychiatric knowledge and practise have raised several concerns relating to: identification of diagnostic criteria, classification of distinct clinical entities, holistic understandings of causation, ‘legitimate’ treatment modalities, and claims to a universal symptomatology and nosology. This timely volume contributes to these longstanding debates and reminds us about all that is at stake if ‘mainstream’ psychiatric treatment and services are ‘universalised’, or perhaps more appropriately, ‘globalised’. As the contributors, including anthropologists, sociologists, public health professionals, historians, and clinical psychiatrists point out, this is indeed the primary aim of the Movement for Global Mental Health (MGMH). The book is divided into four broad themes: Critical Histories, Limits of Global Mental Health, Alternatives and Afterwords. The conceptually rich introduction covers good ground as it defamiliarises taken for granted assumptions about mental disorders that the MGMH tends to accept uncritically. Each chapter addresses certain problematic assumptions about causation, treatment and pervasiveness of mental disorders.
对精神病学知识和实践的批评提出了以下几个问题:诊断标准的确定,不同临床实体的分类,对因果关系的整体理解,“合法”的治疗方式,以及对普遍症状学和分类学的主张。这本及时的书对这些长期的争论做出了贡献,并提醒我们,如果“主流”精神病学治疗和服务“普遍化”,或者更恰当地说,“全球化”,那么一切都将岌岌可危。正如包括人类学家、社会学家、公共卫生专业人员、历史学家和临床精神病学家在内的贡献者所指出的那样,这确实是全球精神卫生运动(MGMH)的主要目标。这本书分为四个广泛的主题:关键的历史,全球心理健康的限制,选择和后记。概念丰富的介绍涵盖了良好的基础,因为它对MGMH倾向于不加批判地接受的关于精神障碍的想当然假设进行了陌生。每一章都阐述了关于精神障碍的因果关系、治疗和普遍性的某些有问题的假设。
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引用次数: 4
Six hours to study: temporality and ignorance in medical education. 六小时学习:医学教育的暂时性和无知。
IF 1.8 4区 社会学 Q2 ANTHROPOLOGY Pub Date : 2021-12-01 Epub Date: 2021-07-12 DOI: 10.1080/13648470.2021.1890943
Julia Knopes

Individual scientists, clinicians, and other experts cannot have absolute knowledge of all of the theories, methods, models, and findings in their field of practice. Rather, these individuals make choices about the kind of information that will be most meaningful and impactful in their work, while choosing - or being compelled to choose - what knowledge to overlook or ignore: a process identified as sufficient knowledge. In biomedicine, medical students are socialized to deliberately decide what information matters most; so, too, do practicing physicians openly acknowledge that they make choices around knowledge in daily practice. Within this process, time is a critical factor that mediates epistemological decision-making. In other words, how does time bound or restrict what forms and depth of medical knowledge that physicians and future physicians prioritize? When would someone intentionally limit time in order to constrain the amount and types of information he, she, or they acquire? To answer these questions, this study draws upon interviews and participant observation conducted with students at a medical school in the American Midwest. This article seeks to answer the aforementioned questions and to provide a new framework for, and expand discussions of, agnotology in the anthropology of medicine.

个别科学家、临床医生和其他专家不可能对其实践领域的所有理论、方法、模型和发现都有绝对的了解。更确切地说,这些人选择对他们的工作最有意义和影响的信息,同时选择-或被迫选择-忽略或忽略哪些知识:一个被确定为充分知识的过程。在生物医学领域,医学生被社会化了,他们会有意识地决定哪些信息最重要;因此,执业医生也公开承认,他们在日常实践中会根据知识做出选择。在这一过程中,时间是调节认识论决策的关键因素。换句话说,时间是如何限制医生和未来医生优先考虑的医学知识的形式和深度的?什么时候某人会故意限制时间来限制他、她或他们获得的信息的数量和类型?为了回答这些问题,本研究对美国中西部一所医学院的学生进行了访谈和参与观察。本文试图回答上述问题,并为医学人类学中的不可知论提供一个新的框架,并扩大对其的讨论。
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引用次数: 1
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