In the Journals

In the Journals, June 2019

Here are a selection of articles from June. The topics include issues of translation in social studies of medicine, access to health care, and many others.

American Anthropologist

Whose Global, Which Health? Unsettling Collaboration With Careful Equivocation (open access)

Emily Yates-Doerr

The recent push for multidisciplinary collaboration confronts anthropologists with a long‐standing ethnographic problem. The terms we have to talk about what we do are very often the same as the terms used by those with whom we work, and yet we are often doing very different things with these terms. I draw on over a decade of “awkward collaboration” with scientists working in highland Guatemala to explore how challenges of equivocation play out in research focused on improving maternal/child nutrition. In the interactions I describe, epidemiologists undertake ethnography, anthropologists study scientists, and a Mam–Spanish translator works for projects organized around English‐language funding structures and aspirations. I detail situations in which methods, interests, and goals coalesce and diverge to argue for the importance of careful equivocation, a research technique attuned to unsettling binaries that does not result in sameness or unity. I offer suggestions for how this technique might productively reshape the emerging global health imperative to work together.

“Human Nature” and the Biology of Everyday Life

Matthew Wolf-Meyer

Anthropologists are well poised to contribute to an immanent theory of human physiological experiences that accounts for the broad social and environmental influences that shape individual and community experiences of health and disease. This article forwards a theory of “the biology of everyday life” as a means to conceptualize the interactions between institutional expectations of behavior, cultural norms, and biological plasticity. Drawing on a wide variety of research on human sleep, this article shows how the expression of sleep needs vary within and between societies and are shaped primarily not by innate biological drives but cultural norms embedded in the institutions that comprise the infrastructure of everyday life. Embracing perspectives from laboratory scientists, social theorists, and ethnographers, the biology of everyday life offers a way to conceptualize human nature not as a set of drives but a supple interaction of physiological plasticity, cultural expectations, and social organization.

BioSocieties

Performativity and a Microbe: Exploring Mycobacterium Bovis and the Political Ecologies of Bovine Tuberculosis

Philip A. Robinson

Mycobacterium bovis, the bacterium responsible for causing bovine tuberculosis (bTB) in cattle, displays what I call ‘microbial performativity’. Like many other lively disease-causing microorganisms, it has an agency which is difficult to contain, and there is a need for fresh thinking on the challenges of dealing with this slippery and indeterminate microbe. As a practising veterinary scientist who side-stepped mid-career into a parallel training in the social sciences to view bTB from an alternative perspective, I create an interdisciplinary coming-together where veterinary science converges with a political ecology of (animal) health influenced by science and technology studies (STS) and social science and humanities scholarship on performativity. This suitably hybridized nexus creates a place to consider the ecologies of a pathogen which could be considered as life out of control. I consider what this means for efforts to eradicate this disease through combining understandings from the published scientific literature with qualitative interview-based fieldwork with farmers, veterinarians and others involved in the statutory bTB eradication programme in a high incidence region of the UK. This study demonstrates the value of life scientists turning to the social sciences to re-view their familiar professional habitus—challenging assumptions, and offering alternative perspectives on complex problems.

Moral Hierarchies within Autism Parenting: Making Parent-Therapists and Perpetuating Disparities within Contemporary China

Emily Xi Lin

Drawing upon 18 months of ethnographic fieldwork in China from 2013 to 2014, this article argues that moral hierarchies within autism parenting in fact reproduce local socioeconomic inequalities. In China, medical specialists, special education teachers and prominent parent advocates attempt to manage autism in a context of scarce resources by teaching parents how to serve as their children’s lifelong therapists. Yet, by focusing primarily on parents’ love for their children, while neglecting pragmatic issues related to social–economic disparities, autism advocates fail to understand the difficulties of parents with few socioeconomic resources. I illustrate my arguments by delving deeply into two case studies which illustrate both extremes of the moral hierarchy in autism parenting within China. In ethnographically attending to how parents are made into behavioral therapists and the moral hierarchies within autism parenting in China, this paper describes a culturally specific adoption of ABA. This article argues that scholars and local disability advocates need to pay closer attention to local particularities, including cultural histories of parenting, as well as the complex interactions between disability and social and economic inequalities, so as to better comprehend and address the immediate, existential, and long-range challenges which parents with little social capital face in managing autism

The Rise of Statins in Denmark: Making the Case for a Localized Approach to the Routinization of Pharmaceutical Prevention of Cardiovascular Disease

Sofie Rosenlund Lau, John Sahl Andersen, Flemming Dela, Bjarke Oxlund

This article provides a socio-historical account of the rise of preventive medicine in Denmark by exploring details of how pharmaceutical cholesterol-reduction became routinized as a standard of care. While other accounts of mass-prevention with statins primarily focus on the role of the pharmaceutical industry, we aim to show how routinization in a welfare state with free access to healthcare and where direct-to consumer advertisement is prohibited bring to the fore other actors and entities that are pivotal for the transformation of new treatment logics. Based on the close scrutiny of three decades of discussions in the Danish Weekly Medical Journal and interviews with key experts, we point to the important role of general practitioners as the main executors of preventive medicine in practice. Furthered by the introduction of new techno-scientific innovations such as guidelines and assessment tool, the routinization of statins in Denmark happened as a bottom-up process championed by a local group of therapeutic reformers who successfully manoeuvered the realms of science, politics and practice in order to transform contested global evidence into the very foundation of a new standard of care. We argue that localized processes of routinization are incredibly important for any understanding of pharmaceuticalization.

Liminality in Practice: A Case Study in Life Sciences Research (open access)

Megan Clinch, Sara Shaw, Richard Ashcroft, Deborah Swinglehurst

Contemporary health challenges (e.g., diabetes, climate change, antimicrobial resistance) are underpinned by complex interrelationships between behavioural, cultural, social, environmental and biological processes. Current experimental systems are only partially relevant to the problems they investigate, but aspirations to embed interdisciplinary working and community engagement into life scientists’ work in response to this partiality have proven difficult in practice. This paper explores one UK university-based life sciences research initiative as it seeks to develop modes of working which respond to this complexity. Drawing on ‘liminal hotspots’ as a sensitising concept, we explore how participating academics articulate complex problems, knowledge-making, interdisciplinary working and community engagement. Our analysis shows they become recurrently ‘trapped’ (institutionally and epistemologically) between fixed/universalised cosmologies of biology/disease, and more contemporary cosmologies in which biology and disease are conceptualised as situated and evolving. Adopting approaches to community organising based on ‘process pragmatism’, we propose ways in which life scientists might radically reorganise their practice and move beyond current limiting enactments of interdisciplinary and community engaged working. In doing so, we claim that the relevance and ‘humanness’ of life science research will be increased.

Digital orphans: Data closure and openness in patient-powered networks

Niccolò Tempini,

The basic structure of contemporary military biopolitics, in which military bodies and minds are kept alive and allowed to die, entails both an institutional problem of how to shore up life that is exposed to harm and a cultural problem of how to reckon with a routinized trade in life and death that happens not incidentally, but on purpose. Amidst this tension, the military psyche becomes both an inhabited, embodied site and an imaginative point of reference for the question of how to feel about war. This article takes stock of the contemporary landscape of war-related mental affliction via three relatively novel interventions: military suicide prevention, the framing post-traumatic stress as “moral injury,” and resiliency training meant to inoculate soldiers against the stress of the battlefield. Drawing on a range of clinical and media sources and ethnographic research with post-9/11 military personnel, I show how each of these efforts constructs specific forms of war-related psychic destruction as objects of public and institutional concern, normalizes the institutional arrangements that produce it, and informs public perceptions of what war is by constructing figures of what it does to those who fight it.

Contemporary Drug Problems

Stop Smoking the Easyway: Addiction, Self-Help, and Tobacco Cessation

Donncha Marron

This article examines Easyway, a popular clinical and self-help method for the treatment of smoking addiction established by the late Allen Carr in 1984. It begins by addressing how smoking has come to be constituted as a neuropharmacological addiction and some of the issues and concerns raised against this in the social sciences. After situating its theoretical and empirical focus, the article then proceeds with an interpretative thematic analysis of a selection of Easyway self-help texts. The aims here are as follows: firstly, to show how Easyway, as a discourse, constitutes the problem of nicotine addiction in novel and distinctive ways; secondly, to elaborate how the Easyway texts seek to govern readers—paradoxically, through their free capacity for reflection, introspection, and action—to overcome their situated addiction to smoking; and thirdly, to identify and locate the significance of the author’s implicit claims to charisma in underpinning his authority to know and treat nicotine addiction.

Ethos

“The Heavier Selves”: Embodied and Subjective Suffering of Organ Sellers in Bangladesh

Monir Moniruzzaman

The rapid growth of organ transplantation has created an illegal market for human organs sourced from the destitute poor predominantly in the developing world. Drawing on challenging fieldwork, I investigate the lived experiences of organ sellers who sold their bodily organs on the black market of Bangladesh. Sellers’ narratives reveal that living without an organ is not just a bodily alteration, but instead it results in embodied suffering and ontological impairment of being in the world. Organ sellers reported that they experienced embodied suffering due to selling their vital organs, which violates long‐standing cultural practices, such as bodily integrity, body ownership, and human dignity. In addition, these sellers faced subjective suffering due to selling living parts of themselves. As they felt, selling an organ divided their whole body into two halves, which destroyed their homeostatic balance, ontological harmony, and affinity with recipients. Sellers referred to these embodied and subjective sufferings as “heavier selves.”

Agency, Cultural Consonance and Depressive Symptoms: A Brazilian Example

William W. Dressler, Mauro C. Balieiro, José Ernesto dos Santos

Cultural consonance, or individual enactment of cultural models, is associated with lower depressive symptoms. This article incorporates individual agency into the cultural consonance model. Data were collected using mixed methods in Ribeirão Preto, Brazil. Brazil is a unique setting for this research, given that personal agency is institutionalized in the practice of o jeitinho (a distinctively Brazilian way of circumventing rules). Cultural consonance was measured relative to cultural models of life goals. A measure of a sense of personal agency combined scales of locus of control and frustration tolerance. Cultural consonance had a stronger association with depressive symptoms than individual agency. These results are also consistent with cultural consonance as a mediator of the association of agency and depressive symptoms. The implications for the conceptualization of culture and its role in mental health, and for the influence of psychological factors on culture, are discussed.

Youths’ Individual Pathways Towards Contextual Well‐Being: Utilizing Electrodermal Activity as an Ethnographic Tool at a Theater After‐School Program

Scarlett Eisenhauer

This article addresses how youth (with their embodied, physical, and cognitive resources) traverse, in situ, experiential pathways and how this plays a role in the experience of well‐being at Green Door Theater’s (GDT) after‐school program. Electrodermal activity (EDA) is used as part of a qualitative protocol to deepen our understanding of intracultural variation by highlighting individual attention and engagement during normative activities. After‐school programs, as with other cultural groups, involve negotiations between individuals and the community of practice. By comparing youth with higher and lower program engagement, it is shown that culturally shaped routine activities (performances and the “gospel circle”) are experienced differentially. Program staff strive for high‐engagement participation and want to achieve this through normative program scripts for activities, yet data reveal that well‐being can emerge in other ways as well. The article shows how the triangulation of evidence from each level of analysis (ethnography, EDA, and youth interpretations of their experiences) adds value to the overall understanding of the creation of well‐being in such programs.

Medical Anthropology Quarterly

Caring for “Super‐utilizers”: Neoliberal Social Assistance in the Safety‐net (open access)

Mark D. Fleming, Janet K. Shim, Irene Yen, Meredith Van Natta, Christoph Hanssmann, Nancy J. Burke

Hospitals throughout the United States are implementing new forms of care delivery meant to address social needs for structurally vulnerable patients as a strategy to prevent emergency department visits and hospitalizations and to thereby reduce costs. This article examines how the deployment of social assistance within a neoliberal institutional logic involves the negotiation and alignment of economistic values with ethics of care. We focus on care practices meant to stabilize the socioeconomic conditions of the most expensive patients in the health care system—the “super‐utilizers”—through the provisioning of basic resources such as housing, food, transportation, and social support. These patients typically suffer from multiple chronic illnesses accompanied by conditions of poverty, housing and food insecurity, exposure to violence and trauma, and associated substance use and mental health problems. We offer an account of how practices of social assistance are being forged within contexts defined by neoliberal governance.

Re‐racialization of Addiction and the Redistribution of Blame in the White Opioid Epidemic (open access)

Sonia Mendoza, Allyssa Rivera, Helena Hansen

New York City has the largest number of opioid dependent people of U.S. cities, and within New York, Whites have the highest rate of prescription opioid and heroin overdose deaths. The rise of opioid abuse among Whites has resulted in popular narratives of victimization by prescribers, framing of addiction as a biological disease, and the promise of pharmaceutical treatments that differ from the criminalizing narratives that have historically described urban Latino and black narcotic use. Through an analysis of popular media press and interviews with opioid prescribers and community pharmacists in Staten Island—the epicenter of opioid overdose in New York City and the most suburban and white of its boroughs—we found that narratives of white opioid users disrupted notions of the addict as “other,” producing alternative logics of blame that focus on prescribers and the encroachment of dealers from outside of white neighborhoods.

Protestant Techniques of Care: The Hindu, the Pentecost, and the “Secular”

Ian Whitmarsh

Modern techniques of caring for the self through staying healthy rely on an ethic of choice, often evoking critiques of the (neo)liberal subject. This sense of choice has carried frequently overlooked Protestant commitments from Luther to Kant and Locke to 19th‐century American health reformers, premised on a refusal of ritual, mysticism, and the priest as the source of truth. This article explores how these implicit commitments shape the relation to other religious traditions in countries like Trinidad. Campaigns against chronic disease in Trinidad carried out in public health venues and churches echo multinational health projects in pronouncing, “We all want a healthy life.” The article draws on a Caribbean ironic sense of secularity to analyze the way that the threat to this “want” found in other religious traditions such as Pentecostal healing and Hindu ecstatic practices reveals Protestant commitments masked within a modern global “secular” care of the self.

On Being (Not) Old: Agency, Self‐care, and Life‐course Aspirations in the United States

Sarah Lamb

This article examines U.S. endeavors to eradicate old age. Drawing on research with older, mostly white, Americans across social classes, I probe how older people engage in “healthy,” “successful” aging as a moral project, health identity, and way of approaching the life course. Moving beyond influential literature on biopolitics and biomedicine that tends to treat medicine, science, and biopolitical governance as overdetermined causal forces, I explore instead how a confluence of factors—including cultural ideologies of personhood and independence, medical interventions, social hierarchies, and individual experiences—together lead to the stigmatization of oldness. Social inequalities also matter, as an ethos of self‐care and individual agency to ward off oldness is most pronounced among the able‐bodied and socioeconomic elite. The aim is to illuminate the convergence of factors that stigmatize oldness in contemporary North America, while highlighting the ways that class profoundly figures in people’s varied attempts to not be old.

Administrative (in)Visibility of Patient Structural Vulnerability and the Hierarchy of Moral Distress among Health Care Staff

Julie S. Armin

Public programs such as Medicaid offer highly circumscribed access to health care for low‐income patients in the United States. This article describes the work of a variety of health care staff who manage specialized cancer care for publicly insured patients who have difficulty gaining or maintaining program eligibility or for uninsured and undocumented patients who are excluded from state programs. I highlight the moral distress that occurs when clinic employees become individually responsible for reconciling policies that limit patients’ access to care. I conclude that responsibility for securing access to cancer care for structurally vulnerable patients frequently falls to safety net clinics and that patients’ financial constraints are visible to particular types of staff, such as non‐licensed health care staff and non‐physician providers, who may experience moral distress disproportionately.

Thrifting for More: Savings and Aspirations in Health Care Sharing Ministries after the Affordable Care Act

Carolyn Schwarz

The Affordable Care Act (ACA) of 2010 includes health care sharing ministries (HCSMs) on the list of religious exemptions to the individual mandate. HCSMs are non‐profit, faith‐based organizations that share in the cost of medical bills but are not actually insurance. Precisely because HCSMs are not beholden to any of the ACA’s insurance reforms, they have the advantage of costing less. Based primarily on in‐depth interviews, I argue that thrift is the preeminent moral discourse that anchors the HCSM world. For members, thrift in health care is understood as a moral good and as a practice that offers possibilities for benefiting connected others and generating life fulfillment, or what Taylor refers to as “fullness.” I suggest that a focus on thrift raises questions about how Americans make determinations about worth in health care and how they construct health care–seeking as deeply attached to their visions of how they want life to be.

A Capable Surgeon and a Willing Electrologist: Challenges to the Expansion of Transgender Surgical Care in the United States

Eric Plemons

Since 2014, public and private insurance coverage for transgender Americans’ surgical care has increased exponentially. Training clinicians and equipping institutions to meet the surge in demand has not been as rapid. Through ethnographic research at a surgical workshop focused on trans‐ genital reconstruction and in a U.S. hospital working to grow its transgender health program, this article shows that effects of the decades‐long insurance exclusion of trans‐ surgery are not easily remedied through the recent event of its inclusion because patient access is not the only thing that has been restricted by coverage denial. Decades of excluding coverage for trans‐ genital reconstructive surgery have limited the development and circulation of technical skills required to perform these procedures, as well as the administrative processes needed to integrate them into existing clinical workflows. One surgeon estimates that turning expanded access into realized care is “a five or six‐year problem.”

Medical Humanities

The Politics of Female Pain: Women’s Citizenship, Twilight Sleep and the Early Birth Control Movement (open access)

Lauren MacLvor Thompson

The medical intervention of ‘twilight sleep’, or the use of a scopolamine–morphine mixture to anaesthetise labouring women, caused a furore among doctors and early 20th-century feminists. Suffragists and women’s rights advocates led the Twilight Sleep Association in a quest to encourage doctors and their female patients to widely embrace the practice. Activists felt the method revolutionised the notoriously dangerous and painful childbirth process for women, touting its benefits as the key to allowing women to control their birth experience at a time when the maternal mortality rate remained high despite medical advances in obstetrics. Yet many physicians attacked the practice as dangerous for patients and their babies and antithetical to the expectations for proper womanhood and motherly duty. Historians of women’s health have rightly cited Twilight Sleep as the beginning of the medicalisation and depersonalisation of the childbirth process in the 20th century. This article instead repositions the feminist political arguments for the method as an important precursor for the rhetoric of the early birth control movement, led by Mary Ware Dennett (a former leader in the Twilight Sleep Association) and Margaret Sanger. Both Twilight Sleep and the birth control movement represent a distinct moment in the early 20th century wherein pain was deeply connected to politics and the rhetoric of equal rights. The two reformers emphasised in their publications and appeals to the public the vast social significance of reproductive pain—both physical and psychological. They contended that women’s lack of control over both pregnancy and birth represented the greatest hindrance to women’s fulfilment of their political rights and a danger to the healthy development of larger society. In their arguments for legal contraception, Dennett and Sanger placed women’s pain front and centre as the primary reason for changing a law that hindered women’s full participation in the public order.

Acting by Persuasion— Values and Rhetoric in Medical Certificates of Work Incapacity: A Qualitative Document Analysis

Guri Aarseth, Bård Natvig, Eivind Engebretsen, Anne Kveim Lie

When the patient applies for disability benefit in Norway, the general practitioner (GP) is required by the National Insurance Administration (NAV) to confirm that the patient is unfit for work due to disease. Considering the important social role of medical certificates, they have been given surprisingly little attention by the medical critique. They may make essential differences to peoples’ lives, legitimise large social costs and, in addition, the GPs report that issuing certificates can be problematic. This article explores values, attitudes and persuasive language in a selection of medical certificates written by GPs. We direct attention to such texts as significant social actors using a mixed rhetoric including certain values and attitudes. When arguing for granting the patient disability benefit, some GPs emphasised the ‘worthiness’ of the patient by pointing to positive attitudes approved by the national insurance: a will to work and participate, to cooperate and be motivated. Others pointed out the patient’s positive character in terms of universally accepted values, called for the reader’s (the NAV official) sympathy , understanding and helpfulness or appealed to his/her willingness to be realistic and pragmatic and grant disability benefit (DB). The dialogic style varied: some certifiers—although they argued for disability benefit—showed openness to possible opposing or alternative voices by displaying their own uncertainty. Others addressed the reader to share responsibility, demanding or urging for DB. This shifting rhetoric, we believe, mirrors that the GPs see themselves as the patient’s advocate, and that they may find themselves conflicted. We propose further studies within qualitative research to investigate the effect of this rhetoric on the reader, the decision-makers. In addition, to improve the quality and accuracy of these important documents, we suggest that medical schools introduce students to the making of text as a specific skill of medical practice.

Sophistry in American Medicine? Platonic Reflections on Expertise, Influence and the Public’s Health in the Democratic Context

Evan V Goldstein

Without question, the American medical craft—the physicians, clinicians and healthcare organisations that comprise the American healthcare sector—provides immense value to patients and contributes expertise on matters relevant to the public’s health. However, several conspicuous realities about healthcare in America should give the reader pause. Most problematic are the comparative measures of access to care, quality of care, life expectancy, racial health disparity and cost, all of which demonstrate how many Americans experience relatively lower value public health than other Western liberal democratic states. Since the early 1900s, American medical craft behaviour contributed to suboptimal social investment in public health, successfully influencing greater medical investment and higher healthcare expenditure relative to social welfare investments. Today, American policymakers seek the ‘holy grail’, a mythical panacea that purports to restrict spending and improve care quality and value, leading the USA to chase ‘technocratic solutions to political problems’. This paper explores the claim that the USA is hampered by suboptimal public health decision making. Public health decision making has been historically impacted by the overextended reach of medical craft expertise—technê in Platonic terms of art—as permitted by the American democratic political system. American policymakers must not forget that the debate over technê, epistêmê, sophistry and who should have authority in public affairs is not new. Rather, it is an ancient debate, and now as then, the ancient arguments remain relevant in a democratic context. For particularly helpful insight, one ought to look no further than the lessons of Plato’s dialogues. Platonic lessons on expertise and decision making can enlighten our understanding of modern public health decision making, specifically regarding the appropriation, allocation and distribution of health-related resources in the state.

Genetics, Molar Pregnancies and medieval Ideas of Monstrous Births: The Lump of Flesh in The King of Tars

Natalie Goodison, Deborah J G Mackay, Karen Temple

The medieval English romance The King of Tars gives an account of a birth of a lump of flesh. This has been considered as fantastic and monstrous in past literature, the horrific union of a Christian and Saracen. However, while the text certainly speaks to miscegenation, we propose that this lump of flesh is actually a hydatidiform mole. We trace the hydatidiform mole from antiquity, surrounding it with contextual medieval examples, from theology, history and medicine, that also describe abnormal births as ‘lumps of flesh’. By discussing medieval ideas of monsters as a warning sign, we interpret the lump of flesh in terms of abnormal births, seed transmission, parental contribution and sin. Ideas of warning, blame and intervention present themselves as a response to moles both in medieval texts as well as in modern reactions to hydatidiform moles. We explore the epigenetics of hydatidiform moles and relate them to the medieval text. In The King of Tars, the fault for the lump of flesh could reside with either parent; we find that this is also the case in the genetic formation of the hydatidiform mole; we also argue that the epigenetics supports medieval theories of seed transmission.

Sensing Space and Making Place: The Hospital and Therapeutic Landscapes in Two Cancer Narratives

Victoria Bates

This article explores the role of senses in the construction and experience of place, focusing on patients’ experiences of hospital care. It compares two cancer narratives for their insights into the heterogeneous ways that hospital environments are made into therapeutic landscapes, arguing that they are a product of dynamic processes rather than something that is simply built. The article draws on a relational model of space and place, alongside literary analysis, to explore the making of un/healthy environments in embodied, affective and sensory terms. It indicates that sensory experiences in hospitals are made (un)therapeutic in relation to illness and recovery, as well as a range of social and human/non-human relations. These conclusions warn against making broad claims about ‘good’ or ‘bad’ hospital sensescapes, or against treating the hospital as a homogeneous space. They also offer new opportunities for medical geography and the medical humanities, by showing how illness and recovery are part of the relational making of space and place.

New Genetics and Society

Genomic Research and the Cancer Clinic: Uncertainty and Expectations in Professional Accounts (open access)

Anne Kerr, Julia Swallow, Choon Key Chekar, Sarah Cunningham-Burley

This paper explores clinicians’ and scientists’ accounts of genomic research in cancer care and the complexities and challenges involved with delivering this work. Contributing to the sociology of (low) expectations, we draw on sociological studies of uncertainty in medicine to explore their accounts of working with uncertainty as part of the management of patient and institutional expectations. We consider their appeals to the importance of modest inquiry and framing of the uncertainties of genomic medicine as normal and at times welcome as they sought to configure professional autonomy and jurisdictions and cultivate an experimental ethos amongst their patients. We argue that these types of uncertainty work [Star, S. L. 1985. “Scientific Work and Uncertainty.” Social Studies of Science 15 (3): 391–427] are a key feature of managing expectations at the intersections of genomic research and clinical care.

Science in Context

Epidemiological State-Building in Interwar Poland: Discourses and Paper Technologies

Katharina Kreuder-Sonnen

The paper argues that epidemic surveillance and state-building were closely interconnected in interwar Poland. Starting from the paper technology of weekly epidemiological reporting it discusses how the reporting scheme of Polish epidemics came into being in the context of a typhus epidemic in 1919–20. It then shows how the statistics regarding nation-wide epidemics was put into practice. It is only when we take into account these practices that we can understand the epidemiological order the statistics produced. The preprinted weekly report form registered Jews and Christians separately. Yet, the imagined national epidemiological space that emerged from it hardly took notice of this separation. Rather, the category that differentiated Polish epidemiological space in medical discourse was the capacity of contributing to the state-making practices of epidemic surveillance. This category divided Poland into two regions: a civilized and modern western region and a backward and peripheral eastern region.

ARA Relief Campaign in the Volga Region, Jewish Anthropometric Statistics, and the Scientific Promise of Integration

Marina Mogilner

The article builds a case for the Society for the Protection of the Health of the Jewish Population (Obshchestvo Okhranenia Zdorov’ia Evreiskogo Naselenia [OZE]) as a project of medicalized modernity, a mass politics of Jewish self-help that relied on a racialized and medicalized vision of a future Jewish nation. Officially registered in 1912 in St. Petersburg, it created the space for a Jewish politics that focused on the state of the collective Jewish body as a precondition for Jewish participation in any version of modernity. OZE futurism survived the years of World War I and the Russian Civil War, when the organization had to concentrate on rescue and relief rather than on facilitating the development of new bodies and souls. New archival evidence reveals how race science, medical statistics, and positive eugenics became composite elements of the Jewish anticolonial message and new subjectivity.

Giving Tshuve to the Sick: Correspondence Columns of the Yiddish Medical Press in Poland

Marek Tuszewicki

Several Yiddish medical publications of various profiles appeared in independent Poland until 1939. These print media were associated with OZE and TOZ organizational structures and aimed to promote modern concepts of health and healthcare among the Jewish population in its native tongue. Some of these magazines offered space for direct consultations, which took the form of a correspondence corner. Questions sent in by readers ranged from apparently neutral topics, such as a healthy diet or hygiene, to controversial matters tormenting individuals in provincial milieus. The correspondence gives us an insight into popular ways of thinking about health and disease and indicates issues of high importance for a society in the process of modernization. The present paper discusses the questions and answers as they appeared in the Yiddish medical press (particularly in the Folksgezunt and Der Doktor), and presents the most crucial aspects of Jewish life they shed light on, including the historical and cultural background.

Social Science and Medicine

Lobbying by Association: The Case of Autism and the Controversy over Packing therapy in France

Brigitte Chamak

The controversy over packing therapy used in psychiatry was studied here to illustrate how leading associations can influence public health policies. The main French associations of parents with autistic children succeeded in obtaining the prohibition of packing, announced by the French Secretary of State to the Ministry of Health in April 2016. Parents and professionals who had observed the positive effects of packing when nothing else worked for their part wondered what could be done for self-harming patients. The political authorities followed the opinion of the main associations of parents with autistic children at the expense of that of professionals. In this paper, the actions and discourse of the associations against packing are explored, as are the arguments of the psychiatrists who defend packing therapy. The different phases in the controversy from the first opposition in 2005 and the role of opinion leaders in associations are analyzed. The strategies to discredit psychiatry and to promote behavioral methods are also studied to understand the shift in the balance of power from professionals to association leaders. The mobilization of the associations prompted some psychiatrists to conduct evidence-based research and to formalize their practice. The controversy over packing, involving political decision-making processes, ethical issues and clinical questions, enables us to illustrate a case of lobbying by associations.

Biopolitics, space and Hospital Reconfiguration

Alec Fraser, Juan Baeza, Annette Boa, Ewan Ferlie

Major service change in healthcare – whereby the distribution of services is reconfigured at a local or regional level – is often a contested, political and poorly understood set of processes. This paper contributes to the theoretical understanding of major service change by demonstrating the utility of interpreting health service reconfiguration as a biopolitical intervention. Such an approach orients the analytical focus towards an exploration of the spatial and the population – crucial factors in major service change. Drawing on a qualitative study from 2011–12 of major service change in the English NHS combining documentary analyses of historically relevant policy papers and contemporary policy documentation (n = 125) with semi-structured interviews (n = 20) we highlight how a particular ‘geography of stroke’ in London was created building upon multiple types of knowledge: medical, epidemiological, economic, demographic, managerial and organisational. These informed particular spatial practices of government providing legitimation for the significant political upheaval that accompanies NHS service reconfiguration by problematizing existing variation in outcomes and making these visible. We suggest that major service change may be analysed as a ‘practice of security’ – a way of redefining a case, conceiving of risks and dangers, and averting potential crises in the interests of the population.

Unravelling Subjectivity, Embodied Experience and (Taking) Psychotropic Medication (open access)

Jacinthe Flore, Renata Kokanović, Felicity Callard, Alex Broom, Cameron Duff

This paper explores how distinctions between ‘intended’ and ‘side’ effects are troubled in personal narratives of taking psychotropic medications. Grounded in interviews with 29 participants diagnosed with mental illness in Victoria, Australia between February and December 2014, we consider how people interpret pharmaceutical compounds beyond their desired or intended effects, and how such effects shape and transform subjectivity and their relationship with their bodies. This paper contributes to recent discussions of mental illness and medication effects, informed by feminist science studies. It emphasises the co-constitution of social, affective and material relations in the context of ‘taking’ psychotropic medication. This paper discusses three key themes as important to the phenomenology of the nexus of illness and psychotropic medication: movement, ambivalence, and sociality. Our analysis demonstrates how psychotropic drugs are productive of subjectivity through their promises and potential, their unexpected harms and the institutions from which they are inseparable.

Social Studies of Science

Healing Fukushima: Radiation Hazards and Disaster Medicine in Post-3.11 Japan (open access)

Shi Lin Loh, Sulfikar Amir

What happens when expertise is forced to face disasters of unprecedented scales? How is knowledge produced in critical moments when every action and decision is a matter of life and death? And how are local social networks mobilized to cope with unforeseen crisis? This paper addresses these questions by examining the emergence of disaster medicine expertise in the aftermath of Fukushima nuclear disaster that struck Japan in 2011. Studies on Fukushima’s impact have to date revolved around the suffering of Tōhoku citizens and the development of Japan’s nuclear energy industry. Acknowledging the gravity of such work, this paper offers an alternative, but equally crucial angle on the disaster: that of the medical caregiving and public health system built in response to radiation hazards resulting from the triple meltdowns at Fukushima Daiichi nuclear power station. Through detailed interviews conducted with eight medical practitioners in Fukushima Prefecture, this paper analyses the significance and impact of Japan’s most recent radiation disaster on its public health infrastructure. To describe the contingent nature of radiation disaster medicine developed in response to radiation risk in Fukushima, we draw on Jasanoff’s characterization of scientific knowledge as ‘serviceable truths’ with regards to public policy and the law, suggesting that expertise in relation to disasters is usefully understood in analogous terms.

Standards and Legacies: Pragmatic Constraints on a Uniform Gene Nomenclature (open access)

Colin Michael Egenberger Halverson

Over the past half-century, there have been concerted efforts to standardize how clinicians and medical researchers refer to genetic material. However, practical and historical impediments thwart this goal. In the current paper I argue that the ontological status of a genetic mutation cannot be cleanly separated from its pragmatic role in therapy. Attempts at standardization fail due to the non-standardized ends to which genetic information is employed, along with historical inertia and unregulated local innovation. These factors prevent rationalistic attempts to ‘modernize’ what is otherwise trumpeted as the most modern of the medical sciences.

Sociology of Health and Illness

Financialising Acute Kidney Injury: From the Practices of Care to the Numbers of Improvement

Simon Bailey, Dean Pierides, Adam Brisley, Clara Weisshaar, Thomas Blakeman

Although sociological studies of quality and safety have identified competing epistemologies in the attempt to measure and improve care, there are gaps in our understanding of how finance and accounting practices are being used to organise this field. This analysis draws on what others have elsewhere called ‘financialisation’ in order to explore the quantification of qualitatively complex care practices. We make our argument using ethnographic data of a quality improvement programme for acute kidney injury (AKI) in a publicly funded hospital in England. Our study is thus concerned with tracing the effects of financialisation in the emergence and assembly of AKI as an object of concern within the hospital. We describe three linked mechanisms through which this occurs: (1) representing and intervening in kidney care; (2) making caring practices count and (3) decision‐making using kidney numbers. Together these stages transform care practices first into risks and then from risks into costs. We argue that this calculative process reinforces a separation between practice and organisational decision‐making made on the basis of numbers. This elevates the status of numbers while diminishing the work of practitioners and managers. We conclude by signalling possible future avenues of research that can take up these processes.

Diagnostic Dissonance and Negotiations of Biomedicalisation: Mental Health Practitioners’ Resistance to the DSM Technology and Diagnostic Standardisation

Amber D. Nelson

Previous research demonstrates that biomedicalisation and diagnostic processes are intertwined in American mental health care, but few studies examine practitioners’ negotiations. This study examines how Mental Health Practitioners (MHPs) negotiate the Diagnostic and Statistical Manual (DSM), diagnosis, standardisation and biomedicalisation‐in‐practice. Feminist grounded theory analysis of 42 semi‐structured interviews with licensed adolescent MHPs reveals accounts of discursive, everyday resistance to the DSM technology and standardisation, which I regard as key aspects of biomedicalisation. Findings demonstrate MHPs seemingly practice what I term diagnostic dissonance: a deep conflict between their professional theoretical orientations and the biomedical model legitimated in the DSM technology and insurers’ diagnostic standardisation. MHPs enact dissonance by undermining the DSM, working around standardisation and by coding the social. Coding the social refers to the employment of V‐codes – illegitimate secondary diagnoses – which convey social and relational conditions of mental distress. MHPs’ contestations of the DSM and standardisation are responses to a healthcare infrastructure that decontextualises mental health. Practitioner resistance to biomedicalisation‐in‐diagnosis is important because the biomedicalisation of mental health takes focus away from the social and relational conditions and solutions to individual and community health and illness.

Transcultural Psychiatry

Beyond China’s Drug Century: Yunnan’s first Therapeutic Community and Narratives of Drug Treatment and Mental Health Care

Sandra Teresa Hyde

China is experiencing rapid cultural change and new forms of sociability that are accompanied by social problems and novel humanitarian interventions that have been formulated to address those problems. The pressure related to the rapid transformation of the countryside into mid-level cities has led to recreational drug-use as a means of escape. These illegal drugs have greased the wheels of what I call an affective biopolitics that has influenced Chinese citizens. Carlos Rojas argues that development in China results from the effects of discrete protocols, or practices that stem from tensions between capital and labor, governmentality and biopolitics, and nationalism and globalization. To tease out the particulars of Rojas’ protocols and practices, in this article, I first review two historical periods: 1) the rise and fall of opium consumption in the early 19th century, and 2) the 21st-century psychology boom. I use these two literature reviews to set the stage to discuss my ethnographic study of Sunlight, China’s first residential therapeutic community for drug users in Yunnan Province. Sunlight’s residents and founders provide a unique window into local everyday drug use at a particular time in China’s economic boom, from 2007 through 2015. We know much about China’s opium century but very little about the contemporary context, new consumers who partake in pleasure-consuming drugs, or the reformers who address these 21st-century public health issues.

The Extraordinary Case of Russian Performance Artist Pyotr Pavlensky: Psychopathology or Contemporary Art?

Vladimir D. Mendelevich

This article examines the psychiatric and political issues surrounding the case of the controversial Russian performance artist Pyotr Pavlensky, who received a number of court-ordered psychiatric evaluations as part of the legal actions initiated subsequent to his political protest actions. The author presents the results of his own clinical investigation into Pavlensky’s case, arguing that previous diagnoses made by psychiatrists were unwarranted and unreasonable. This case draws the attention of experts to a problem: the need for more accurate criteria for the differentiation of behavioral disorders from behavior understood locally as socially-deviant. This issue is especially relevant during the assessment of the mental health of persons engaged in socially transgressive behavior which is explicitly framed as aesthetic and political action.

Culture, Medicine, and Psychiatry

Global Mental Health and Idioms of Distress: The Paradox of Culture-Sensitive Pathologization of Distress in Cambodia

Carol A. Kidron, Laurence J. Kirmayer

Efforts to provide culturally appropriate global mental health interventions have included attention to local idioms of distress. This article critically examines the potential gap between lay ethnopsychological understandings of the Cambodian idiom of baksbat (broken courage) on the one hand and clinical conceptualizations of the idiom as a potential indicator of posttraumatic stress disorder. Ethnographic semi-structured interviews with trauma survivors reveal resistance to current clinical translations and hybrid Euro-Western and Khmer treatment interventions. While the notion of idioms of distress is intended to draw attention to everyday non-pathologizing forms of discourse, the creation of hybrid assessment and treatment constructs linking idioms to trauma-related pathology may obscure the pragmatic communicative functions of the idiom, making them subordinate to an existing model of psychiatric disorder and pathologizing everyday modes of coping. Participants’ narratives highlight self-perceived connections between stressors that determine the trajectory and outcome of distress and shared cultural worldviews that together uniquely shape their meaning. These observations point to the dilemmas of linking idioms of distress with co-morbid illness constructs in ways that may pathologize normal emotional responses. Results have implications for efforts to develop effective models of post-conflict trauma care in global mental health.

How to Fail a Scale: Reflections on a Failed Attempt to Assess Resilience

Emily Mendenhall, Andrew Wooyoung Kim

How we interpret concepts from suffering to survival has been historically debated in the field of anthropology, transcultural psychiatry, and global mental health. These debates have centered on the notion that such concepts are cross-culturally reproducible, although scholars who work the boundaries of culture, medicine, and psychiatry often triangulate methods from internationally standardized scales to various interpretive methods from participant observation to narrative. This article considers resilience, as opposed to suffering, as the subject of a reproducible entity by discussing the failure of an attempt to capture resilience via an internationally reputed scale called the “Resilience Scale for Adults” among cancer patients in urban South Africa. Our effort to utilize the internationally validated scale, and our attempt to draw on ethnographic and interview work to translate this scale to a locally relevant entity failed due to linguistic, cultural, and practical issues. In brief, the attempt failed because our resilience scale was too long, syntactically ambiguous, and culturally inappropriate. We write this article to spur a larger conversation about evaluating resilience from scale to ethnography, and how the concept and measurement of resilience might figure into fields of anthropology and medicine.

Blood, Sweat, and/or Tears: Comparing NerviosSymptom Descriptions in Honduras

Max J. Stein

With the aim of advancing the cross-cultural investigation of the folk illness nervios, I conducted a dual-sited comparative study of symptom descriptions among two diverse research settings in Honduras. Baer et al. (Cult Med Psychiatry 27(3):315–337, 2003) used cultural consensus modeling (CCM) to confirm a core description of nervios among four Latino groups in the US, Mexico, and Guatemala, but observed that overall agreement and average competence in a shared illness model decreased along a gradient from presumably more-to-less economically developed sites. This has left unresolved whether such variation extends to other Latin American regions. This paper is an exploratory analysis of inter- and intracultural variation in nervios symptom descriptions by 50 Hondurans from the market town of Copán Ruinas (n = 25) and city of San Pedro Sula (n = 25). I performed CCM using a combination of free-listing, pile-sorting, and rating activities to establish if respondents across sites share a single model of nervios. I found consensus for the San Pedro Sula subsample, but not for Copán Ruinas or for the overall sample. Results suggest nervios is constitutive of differing forms of distress ranging from chronic illness to acute suffering, as well as anger- and panic-based manifestations that overlap with biomedical ideas about depression, anxiety, and panic disorder. This variation derives in part from demographic factors such as age, gender, and residence, but may also result from ethnic and regional diversity among subsamples. However, consensus only being present among San Pedro Sula respondents suggests their greater awareness of cultural distinctions between biomedical and folk medical knowledge, which is likely due to their exposure to manifold health frameworks in those settings.

Refracting Affects: Affect, Psychotherapy, and Spirit Dis-Possession

Samuele Collu

The notion of affect has generated much confusion in anthropology given its focus on that which seems to escape our language. The evanescent features of affects have irritated many anthropologists who consider affect theory as an empirically weak or esoteric hermeneutics. In this article, I respond to these critiques by developing an anthropology of therapy that foregrounds the role of affects. My intent is to explore the possible contribution of affect theory to medical and psychological anthropology. I draw from my ethnography on couple’s therapy in Argentina to suggest that we cannot understand therapeutic efficacy if we focus only on language and discourse. I ask what it means to regard affects as late modern spirits and take psychotherapy as a modern ritual of “affect dispossession.” I propose to ask how affects, like spirits, can haunt our present rendering our lives barely livable. Focusing on a session of therapy in Buenos Aires, I describe how a therapist channels the spirit of impasse that colonizes the lives of her patients. Developing an enchanted hermeneutics, I engage with Eve Sedgwick’s call for an other-than-paranoid social theory by engaging the imagination as an important organ of perception in the medical anthropology of affects.

What is ‘Alzheimer’s Disease’? The ‘Auguste D’ Case Re-opened

Kieran Keohane, Victoria Grace

What is Alzheimer’s: an organic, neuropathological psychiatric disease, caused by plaques and tangles in aging brains or/and an existential condition affecting the minds of aging persons experiencing disconnection from meaning-bearing networks of social relations? Reviewing current research and revisiting Alzheimer’s original case of ‘Auguste D’ this paper offers an historical–sociological genealogy that raises fundamental questions of causality, and even of the ontological status of Alzheimer’s and the dementia reputed to it as a disease entity. Drawing on Kuhn’s notion of ‘science as usual’ and Foucault’s notion of the discursive formation of ‘regimes of truth’, our analysis seeks to understand how a sole medical focus on either bio-markers of neurological disease or genetic association was accomplished in the absence of sufficient and robust evidence. To counter the exclusion of psychosocial considerations, this paper offers two original hypotheses on the iconic case of ‘Auguste D’, taking into account the social milieu in which she lived and the specific circumstances of her life. It goes on to suggest the way in which the contemporary socio-cultural context may have dementiagenic tendencies. This research supports Gaines and Whitehouse’s argument that research into the phenomenon and symptoms of Alzheimer’s should focus on extracorporal and psychosocial factors.

Science as Culture

Making Cells Worthwhile: Calculations of Value in a European Consortium for Induced Pluripotent Stem Cell Banking

Michael Morrison

The StemBANCC consortium was a large European consortium bringing together scientists from academic institutions and the pharmaceutical industry. The aim of the consortium was to produce 1500 induced pluripotent stem cell (iPSC) lines from participants with a variety of common, complex diseases. These cell lines were intended to help develop iPSC as tools for screening small molecule drug candidates and modelling human diseases in vitro. The scale of investment in this and other biobanks presents iPSC as a valuable commodity. However, StemBANCC was also mandated to make its making cells and data available to European researchers on a not-for-profit basis. To understand how making this quantity of stem cells and data available is configured as a valuable and worthwhile investment for the consortium partners, research materials (project documents, scientific literature and interviews with scientists working on StemBANCC) were analysed using theoretical tools from Valuation Studies. Combining STS and economic sociology, valuation studies analyse how the worth of things, ideas and phenomena result from context-specific practices of assessment and evaluation; worth incorporates moral, financial, scientific, economic. social and cultural registers of value. In this sense, practitioners evaluate the worth of the StemBANCC cells and data at a variety of sites, from participant recruitment to online databases. This provides an alternative to biovalue and similar conceptual models for theorising the generation of value in the Life Sciences.

The Politics of Biometric Standards: The Case of Israel Biometric Project

Avi Marciano

In 2017, after years of public debate, Israel ratified a national biometric project consisting of two initiatives: issuing of biometric ID cards and passports to all Israeli citizens and establishment of a centralized database for storing their bodily information. Design and implementation of a preceding four-year pilot study were accompanied by extensive standardization. Discourse and standard analyses of 33 official state documents – from legal records to performance reports – published by Israeli authorities during the pilot study, unravel the politics of biometric standards employed as part of this project. Biometric standards were used to establish hierarchies between individuals and groups by defining particular bodies as ‘biometrically ineligible.’ These individuals are mostly members of underprivileged and marginalized social groups. Biometric standards were also constructed discursively as scientific and objective to legitimize such discriminatory treatment. Israeli authorities used standards strategically, both as infrastructural elements and as a discursive means. As infrastructural elements, biometric standards were employed, inter alia, to achieve predetermined results and confirm the project’s success. As a discursive means, Israeli authorities actively adopted a ‘discourse of standardization’ to construct an objective and fair image to the project. Standardization of people – namely, quantification of lives, bodies and experiences – is inherently discriminatory because it necessarily results in the creation of categories and hierarchies between biometrically in/eligible bodies.


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