Another set of great papers from the journals in April. Enjoy!
‘I knew before I was told’: Breaches, cues and clues in the diagnostic assemblage
Louise Locock, Sarah Nettleton, Susan Kirkpatrick, Sara Ryan and Sue Ziebland
Diagnosis can be both a ‘diagnostic moment’, but also a process over time. This paper uses secondary analysis of narrative interviews on ovarian cancer, antenatal screening and motor neurone disease to explore how people relate assembling procedural, spatial and interactional evidence before the formal diagnostic moment. We offer the idea of a diagnostic assemblage to capture the ways in which individuals connect to and re-order signs and events that come to be associated with their bodies. Building on the empirical work of Poole and Lyne (2000) in the field of breast cancer diagnosis, we identify how patients describe being alerted to their diagnosis, either through ‘clues’ they report picking up (often inadvertently) or through ‘cues’, perceived as a more intentional prompt given by a health professional, or an organisational process. For patients, these clues frequently represent a breach in the expected order of their encounter with healthcare. Even seemingly mundane episodes or behaviours take on meanings which health professionals may not themselves anticipate. Our findings speak to an emergent body of work demonstrating that experiences of formal healthcare during the lead-up to diagnosis shape patients’ expectations, degree of trust in professionals, and even health outcomes.
Lucy C. Farrell, Megan J. Warin, Vivienne M. Moore, and Jackie M. Street
The potential for regulatory measures to address escalating rates of obesity is widely acknowledged in public health circles. Many advocates support regulations for their potential to reduce health inequalities, in light of the well-documented social gradient in obesity. This paper examines how different social groups understand the role of regulations and other public health interventions in addressing obesity. Drawing upon focus group data from a metropolitan city in southern Australia, we argue that implementing obesity regulations without attention to the ways in which disadvantaged communities problematise obesity may lead to further stigmatisation of this key target population. Tuana’s work on the politics of ignorance, and broader literature on classed asymmetries of power, provides a theoretical framework to demonstrate how middle class understandings of obesity align with dominant ‘obesity epidemic’ discourses. These position obese people as lacking knowledge; underpinning support for food labelling and mandatory nutrition education for welfare recipients as well as food taxes. In contrast, disadvantaged groups emphasised the potential for a different set of interventions to improve material circumstances that constrain their ability to act upon existing health promotion messages, while also describing priorities of everyday living that are not oriented to improving health status. Findings demonstrate how ignorance is produced as an explanation for obesity, widely replicated in political settings and mainstream public health agendas. This politics of ignorance and its logical reparation serve to reproduce power relations in which particular groups are constructed as lacking capacity to act on knowledge, whilst maintaining others in privileged positions of knowing.
Global health diplomacy: A critical review of the literature
Arne Ruckert, Ronald Labonté, Raphael Lencucha, Vivien Runnels and Michelle Gagnon
Global health diplomacy (GHD) describes the practices by which governments and non-state actors attempt to coordinate and orchestrate global policy solutions to improve global health. As an emerging field of practice, there is little academic work that has comprehensively examined and synthesized the theorization of Global Health Diplomacy (GHD), nor looked at why specific health concerns enter into foreign policy discussion and agendas. With the objective of uncovering the driving forces behind and theoretical explanations of GHD, we conducted a critical literature review. We searched three English-language scholarly databases using standardized search terms which yielded 606 articles. After screening of abstracts based on our inclusion/exclusion criteria, we retained 135 articles for importing into NVivo10 and coding. We found a lack of rigorous theorizing about GHD and fragmentation of the GHD literature which is not clearly structured around key issues and their theoretical explanations. To address this lack of theoretical grounding, we link the findings from the GHD literature to how theoretical concepts used in International Relations (IR) have been, and could be invoked in explaining GHD more effectively. To do this, we develop a theoretical taxonomy to explain GHD outcomes based on a popular categorization in IR, identifying three levels of analysis (individual, domestic/national, and global/international) and the driving forces for the integration of health into foreign policy at each level.
Katherine Weatherford Darling, Sara L. Ackerman, Robert H. Hiatt, Sandra Soo-Jin Lee and Janet K. Shim
Despite a proclaimed shift from ‘nature versus nurture’ to ‘genes and environment’ paradigms within biomedical and genomic science, capturing the environment and identifying gene-environment interactions (GEIs) has remained a challenge. What does ‘the environment’ mean in the post-genomic age? In this paper, we present qualitative data from a study of 33 principal investigators funded by the U.S. National Institutes of Health to conduct etiological research on three complex diseases (cancer, cardiovascular disease and diabetes). We examine their research practices and perspectives on the environment through the concept of molecularization: the social processes and transformations through which phenomena (diseases, identities, pollution, food, racial/ethnic classifications) are re-defined in terms of their molecular components and described in the language of molecular biology. We show how GEI researchers’ expansive conceptualizations of the environment ultimately yield to the imperative to molecularize and personalize the environment. They seek to ‘go into the body’ and re-work the boundaries between bodies and environments. In the process, they create epistemic hinges to facilitate a turn from efforts to understand social and environmental exposures outside the body, to quantifying their effects inside the body. GEI researchers respond to these emergent imperatives with a mixture of excitement, ambivalence and frustration. We reflect on how GEI researchers struggle to make meaning of molecules in their work, and how they grapple with molecularization as a methodological and rhetorical imperative as well as a process transforming biomedical research practices.
CAM within a field force of countervailing powers: The case of Portugal
Joana Almeida, Jonathan Gabe
This paper examines the extent to which the position of the medical profession and the state towards complementary and alternative medicine (CAM) practitioners has changed since the late 1990s, taking Portugal as a case study. Using Light’s concept of countervailing powers, we consider the alliances, interests, rhetoric and degrees of control between these three actors over time, focussing particularly on the extent to which CAM practitioners have acted as a countervailing force in their relationship with the medical profession and the state. It also brings to the fore the position of supra-state agencies concerning CAM regulation. A critical discourse analysis was conducted on data derived from a systematic search of information dating from the late 1990s up to 2015. Our analysis suggests that CAM has emerged as an active player and a countervailing power in that it has had significant influence on the process of state policy-making. The medical profession, in turn, has moved from rejecting to ‘incorporating’ CAM, while the state has acted as a ‘broker’, trying to accommodate the demands and preferences of both actors while simultaneously demonstrating its power and autonomy in shaping health policy. In sum, the history of countermoves of CAM, the medical profession and the state in recasting power relations regarding CAM regulation in Portugal has highlighted the explanatory value of Light’s countervailing power theory and the need to move away from a professional dominance and corporatist approach, in which CAM has simply been seen as subjugated to the power of the medical profession and the state.
Fluid technologies: The Bush Pump, the LifeStraw® and microworlds of humanitarian design
Peter Redfield
Over the past decade, many ingenious, small-scale gadgets have appeared in response to problems of disaster and extreme poverty. Focusing on the LifeStraw®, a water filtration device invented by the company Vestergaard Frandsen, I situate this wave of humanitarian design relative to Marianne de Laet and Annemarie Mol’s classic article on the Zimbabwe Bush Pump. The LifeStraw shares the Bush Pump’s principle of technical minimalism, as well as its ethical desire to improve the lives of communities. Unlike the pump, however, the straw defines itself through rather than against market logic, accepting the premise that one can ‘do well while doing good’. Moreover, it does not share the assumed framework of de Laet and Mol’s Zimbabwean socio-technical landscape: a postcolonial state happily en route to national self-definition. Nonetheless, it clearly embodies moral affect, if in the idiom of humanitarian concern rather than development. My aim is to open up three interrelated lines of inquiry for discussion. First, I consider aspects of a postcolonial condition at the micro-level of immediate needs, including assumptions about nation-state politics and markets. Second, I emphasize science and technology in the form of infrastructure, the material frontline of norms. Third, I return reflexively to love, and the complicated allure of engagement in academic work.
Survivors and scientists: Hiroshima, Fukushima, and the Radiation Effects Research Foundation, 1975–2014
Susan Lindee
In this article, I reflect on the Radiation Effects Research Foundation and its ongoing studies of long-term radiation risk. Originally called the Atomic Bomb Casualty Commission (1947–1975), the Radiation Effects Research Foundation has carried out epidemiological research tracking the biomedical effects of radiation at Hiroshima and Nagasaki for almost 70 years. Radiation Effects Research Foundation scientists also played a key role in the assessment of populations exposed at Chernobyl and are now embarking on studies of workers at the Fukushima Daiichi Nuclear Power Plant. I examine the role of estimating dosimetry in post-disaster epidemiology, highlight how national identity and citizenship have mattered in radiation risk networks, and track how participants interpreted the relationships between nuclear weapons and nuclear energy. Industrial interests in Japan and the United States sought to draw a sharp line between the risks of nuclear war and the risks of nuclear power, but the work of the Radiation Effects Research Foundation (which became the basis of worker protection standards for the industry) and the activism of atomic bomb survivors have drawn these two nuclear domains together. This is so particularly in the wake of the Fukushima disaster, Japan’s ‘third atomic bombing’. The Radiation Effects Research Foundation is therefore a critical node in a complex global network of scientific institutions that adjudicate radiation risk and proclaim when it is present and when absent. Its history, I suggest, can illuminate some properties of modern disasters and the many sciences that engage with them.
Keeping gay and bisexual men safe: The arena of HIV prevention science and praxis
Adam Isaiah Green
In this article, I draw from an ongoing ethnographic study of HIV prevention for gay, bisexual, and ‘men who have sex with men’ to develop an institutional analysis of HIV behavioral intervention science and praxis. I approach this analysis through the lens of the social worlds framework, focusing on the institutional arena in which HIV behavioral interventions are devised and executed. Toward this end, I focus on two fundamental points of contention that lie at the heart of the prevention enterprise and put its social organization in high relief: (1) conceptions of health and lifestyle practices and (2) attributions of expertise. These core contentions reveal less the steady advance of normal science than an arena of actors ensconced in boundary work and jurisdictional struggles over how to engineer behavior change and reduce the scale of the HIV epidemic. Their resolution, I argue, has occurred in a historically contingent process determined by the political economy of the US HIV prevention arena and the differential structural location of its social worlds.
Jenna M Grant
Controversies about global clinical trials, particularly HIV trials, tend to be framed in terms of ethics. In this article, explore debates about ethics in the Cambodia Pre-Exposure Prophylaxis trial, which was designed to test the safety and efficacy of tenofovir as a prevention for HIV infection. Bringing together studies of public participation in science with studies of bioethics, I show how activists around the Cambodian Pre-Exposure Prophylaxis trial circulated and provoked debates about standards of research ethics, as opposed to research methodology. This postcolonial bioethics was configured through the circulation of and debate about ethics guidelines, and historically and culturally specific relations of vulnerability and responsibility between foreigners and Cambodians and between Cambodian leaders and Cambodian subjects. I argue that this shift in the object of ethical concern, from the experimental human subject to the relation between subjects and researchers, illustrates how a postcolonial field of articulation reformulates classical bioethics.
Maximilian Fochler
Research and innovation policy has invested considerable effort in creating new institutional spaces at the interface of academia and business. High-tech startups founded by academic entrepreneurs have been central to these policy imaginaries. These companies offer researchers new possibilities beyond and between academia and larger industry. However, the field of science and technology studies has thus far shown only limited interest in understanding these companies as spaces of knowledge production. This article analyses how researchers working in small and medium-sized biotechnology companies in Vienna, Austria, describe the cultural characteristics of knowledge production in this particular institutional space. It traces how they relate these characteristics to other institutional spaces they have experienced in their research biographies, such as in academia or larger corporations. It shows that the reasons why researchers decide to work in biotechnology companies and how they organize their work are deeply influenced by their perception of deficiencies in the conditions for epistemic work in contemporary academia and, to a lesser degree, in industry.
The value of practice: A critique of interactional expertise
Rodrigo Ribeiro and Francisco PA Lima
Collins and Evans have proposed a ‘normative theory of expertise’ as a way to solve the ‘problem of demarcation’ in public debates involving technical matters. Their argument is that all citizens have the right to participate in the ‘political’ phases of such debates, while only three types of experts should have a voice in the ‘technical’ phases. In this article, Collins and Evans’ typology of expertise – in particular, the idea of ‘interactional expertise’ – is the focus of a detailed empirical, methodological and philosophical analysis. As a result, we reaffirm the difference between practitioners and non-practitioners, contesting the four central claims about interactional expertise – namely, that (1) the idea of interactional expertise has been proven empirically, (2) it is possible to develop interactional expertise through ‘linguistic socialization alone’, (3) the idea of interactional expertise supports the ‘the minimal embodiment thesis’ that the individual human body or, more broadly, ‘embodiment’ is not as relevant as linguistic socialization for acquiring a language and (4) interactional experts have the same linguistic fluency, understanding and judgemental abilities of practitioners within discursive settings. Instead, we argue, individuals’ abilities and understandings vary according to the ‘type of immersion’ they have experienced within a given practice and whether they bring with them another ‘perspective’. Acknowledging these differences helps with demarcation but does not solve the ‘problem of demarcation’. Every experience is perspectival and cannot handle, alone, the intertwined and complex issues found in public debates involving technical matters. The challenge, then, concerns the ways to mediate interactions between actors with distinct perspectives, experiences and abilities.
Postsocialism, the psy-ences and mental health
Eugene Raikhel and Dörte Bemme
Over the past decades, the formerly socialist countries of East Central Europe and Eurasia have experienced a range of transformations which bear directly upon the domains of mental health, psychiatry, and psychology. In particular, the disciplines and professions concerned with the human mind, brain, and behavior (“the psy-ences”) were strongly affected by sociopolitical changes spanning the state-socialist and postsocialist periods. These disciplines’ relationship to the state, their modes of knowledge production, and the epistemic order and subjectivities they contributed to have all undergone dramatic ruptures. In this essay, we trace the literature on these issues across three thematic domains: (a) history and memory; (b) the reform of psychiatry in an era of global mental health; and (c) therapy and self-fashioning. We argue for a closer articulation between the social science and historical literature on socialism and its “posts” and the literature among anthropologists, sociologists, and historians on the sciences of the mind and brain, and we suggest that each of these literatures helps to critically open up and enrich the other.
Jack R. Friedman
Since the end of Communism, mental health care in Romania has increasingly sought to align its practices with idealized models of Western psychiatric practice. Much of this realignment has been made possible by accessing and integrating new pharmaceuticals into psychiatric hospital settings. Less straightforward have been the painful attempts to create a system modeled on international standards for training and certifying psychotherapists. Unfortunately, the political, economic, infrastructural, and epistemological environment of the Romanian mental health care system has prevented many other reforms. This paper examines the ironic trajectory that Romanian psychiatry has taken since the end of state socialism. Specifically, this paper shows how psychiatric practice in most places (outside of university-training hospitals) is increasingly disconnected from a concern with the social conditions that surround mental illness during a period when social upheaval is profoundly impacting the lives of many people who receive mental health care. Thus, as the contribution of social problems to the suffering of those with mental illnesses has increased, some Romanian mental health practitioners have moved away from a concern with these social problems under the guise of aligning their psychiatric practices with (imagined) Western standards of biomedical care. The paper provides a brief history of Romanian psychiatry and explores contemporary challenges and contradictions in many Romanian psychiatric treatment settings through the case study of a 31-year-old Romanian female diagnosed with paranoid schizophrenia.
For lack of wanting: Discourses of desire in Ukrainian opiate substitution therapy programs
Jennifer J. Carroll
Available treatments for addiction and substance abuse in Ukraine have been shaped by the economic, political, and social shifts that have followed the country’s independence. The introduction of methadone-based opiate substitution therapy (OST) for opiate addicts is especially representative of this. Biomedical paradigms of addiction, its etiology, and its treatment, promoted and paid for by international donors and elite global health entities, are being met by Ukrainian notions of personhood and psychology in both public discourse and clinical settings. Ukrainian physicians who work in OST programs frequently reference desire (желание) as the most significant factor in determining the success or failure of treatment. They refer to a desire to be treated, desire to get better, desire to live. The moralized imperative to possess this desire to get better is, in many ways, a reflection of how addiction and the addicted psyche is constructed and understood in the Ukrainian context. By exploring discourses of desire in narratives of addiction and treatment, I examine how notions of psychology, will, and self-control intersect, shaping the subjectivity, agency, and daily experiences of this vulnerable population.
Jinneography: Post-Soviet passages of traumatic exemplarity
Khashayar Beigi
While Russia has historically and geographically close ties with Islam, the second most-practiced religion in its vast territories, the collapse of the USSR changed the terms of this relationship in significant ways. One key shift is the emergence of new immigration patterns between Russia and former Soviet states. Traversing distant lands from the peripheries of the Caucasus and Central Asia to mainland Russia in search of work, migrants have come to recognize each other as fellow Muslims dispersed in a theological geography on the ruins of the universal comradeship dreamed by the Soviet utopia. I propose to study the Islamic pedagogical practice of ibra in the context of sociohistorical dynamics of education and migration between Russia and Central Asia to further locate and analyze this shift in relation to current debates on post-Soviet subjectivity. By discussing the case of a spirit possession of a Tajik national performed in Russia, I argue that the collective participation in the session pedagogically invokes, ciphers, and extends the post-Soviet terrains of history as ibra, or exemplary passage of worldly events. To do so, I first locate the Quranic concept of ibra as a pedagogical paradigm in Islamic traditions as well as an ethnographic lens in the context of educational campaigns for the Muslims of Eurasia and then apply the concept to my analysis of the possession session in order to show that in the ritualistic incarnations of ghosts, or jinns, the civil war of Tajikistan and its continuing cycle of terror is ciphered into a desire for learning, as well as a focus on approximation to the divine.
Namrita S. Singh, Nino Jakhaia, Nino Amonashvili, and Peter J. Winch
Trajectories of illness and recovery are ongoing and incomplete processes cocreated by individuals, their informal support networks, formal care-givers and treatment contexts, and broader social systems. This analysis presents two case histories of care-seeking for, and recovery from, mental illness and psychosocial problems in the context of protracted internal displacement. These case histories present individuals with experiences of schizophrenia and depression drawn from a sample of adult long-term internally displaced persons (IDPs) in Georgia, a country in the South Caucasus. Dimensions of care-seeking were compiled into a matrix for analysis. Interviews were open coded, and codes were linked with matrix dimensions to construct each case history. Findings illustrated that individuals moved cyclically among self-care, household support, lay care, and formal services domains to understand and manage their problems. Living with mental illness and within displacement are experiences that intersect at various points, including in the recognition and perceived causes of illness, stressors such as discrimination and isolation, the affordability and availability of services, and the capacity of social networks to provide informal care. Interventions are needed to support informal care-givers and build lay referral networks, as well as to identify intervention points within care-seeking processes. Interventions that target the mental health needs of displaced persons have the potential to contribute to the development of an innovative community mental health care system in Georgia.
Relationality in a time of surveillance: Narcissism, melancholia, paranoia
Stephen Frosh
This article explores apparent shifts in the cultural use of psychoanalytic concepts, from narcissism, through melancholia, to paranoia. It tries to track these shifts, very loosely, in relation to changes in sociocultural and political atmospheres, noting that none of the shifts are complete, that each one leaves previous states of being and of mind at least partially in place. Narcissism was perhaps the term of choice for examining the problem of forging relationships that feel meaningful in a context of rapid change and neo-liberal expansion; then melancholia was (and is) drawn on to conceptualise the challenge of confronting loss and colonial ‘theft’; and now the annexation of the polity – and of everyday life – by massively insidious surveillance produces a culture and subjecthood that is fundamentally, and understandably, paranoid
Thinking with reproduction: Maternal time, citizenship, migration and political subjectivity
Aoileann Ní Mhurchú
This article thinks with reproduction (what Baraitser and Tyler call ‘natal thinking’ (2013, p. 3)) to conceptualise its role as both an empirical and theoretically rich site through which to further develop thinking about citizenship as fluid (in flux). Focusing on the mother-child (born and unborn) subject, the article considers the manner in which thinking with the cyclical and eternal time of reproduction reconfigures the possibility of political community and political identity through the idea of repetition which undoes at the same time as it repeats. The article reflects upon how actions by migrant mothers undo (exceed) at the same time as they repeat understandings about the role of inclusion (commonality) versus exclusion (otherness) in citizenship. It argues that such acts can be seen as that which invoke excess and otherness in political subjectivity as another starting point for/of political possibility rather than just as an exception.
Aline Wiame
This article aims to show how Fernand Deligny’s thought and practices with autistic children, as well as his impact on Deleuze and Guattari, offer a paradigm of subjectivity that in turn rests upon an aesthetic and political account of what we can shape and share in common with autistic people. Well known by French educators and followers of alternative psychiatry, Fernand Deligny remains quite unknown in English-speaking parts of academia (a first translation of some of his texts should be published in 2015) despite his influence on the work of Deleuze and Guattari. Nevertheless, Deligny’s proposals are of great interest for renewing how we think about subjectivity.
Haunted metaphor, transmitted affect: The pantemporality of subjective experience
Sadeq Rahimi
A major motivation for the rise of interest in subjectivity has been the failure of traditional theories of the person in predicting or explaining political affect. The failure may be attributed primarily to the inability of traditional theories to recognize and incorporate the collective and the temporal in their conceptualizations of human desire, experience and affect. While models of the collectively constituted subject have well replaced atomistic models of the individual, theories capable of temporal dislodgment of subjective experience are yet to gain a clear voice. Theoretic advances such as Raymond Williams’ structures of feeling, Derrida’s hauntology, or Abraham and Torok’s cryptonymy point the way to meaning based models of subjectivity that can accommodate multiplicities of both voices and temporalities in meaning and experience. A discussion of subjective experience as pantemporal is presented here specifically through an examination of metonymic and metaphoric functions as constituents of meaning and desire. Among other advantages, the pantemporality model is suggested to allow for analysis of such phenomena as intergenerational transmission of trauma and political affect.
Embodying ‘the new white race’: Colonial Doctors and Settler Society in Algeria, 1878–1911
Charlotte Ann Chopin
This article examines the cultural identifications of doctors of French origin working for the colonial medical service in Algeria at the end of the nineteenth century. As representatives of the state, doctors were expected to uphold the gendered values of civilisation which underpinned the French Third Republic and its empire. Yet they also formed part of a mixed European settler community which insisted upon its own racial and cultural specificity. Faced with a series of centralising reforms to the service from 1878, doctors tied their pursuit of professional freedom to a wider settler movement for autonomy. In so doing, they came to embody a self-proclaimed ‘new white race’ which sought to physically regenerate the empire. In tracing these doctors’ mediation between their governmental employers and their settler patients, this article exposes tensions within French medical culture in Algeria and reflects on the consequences for the operation of colonial power.
The Gospel of Good Obstetrics: Joseph Bolivar DeLee’s Vision for Childbirth in the United States
Carolyn Herbst Lewis
This article reconsiders the place of obstetrician Joseph Bolivar DeLee in the historical narrative. Often celebrated as a founding father of the profession, and denigrated as one of the leading proponents of instrumental childbirth, DeLee was not entirely the man historians and childbirth activists blame him for being. Rather than seeking to resolve the contradiction between DeLee’s widely cited professional writings and his lesser known practices, this article instead focuses on the broader tenure of DeLee’s career, particularly his ‘Gospel of Good Obstetrics’. Doing so permits us to see the efforts of a physician who spent nearly 50 years defending the advantages of home birth without anaesthesia and without instrumentation and who built institutions that provided Chicago mothers with these birthing experiences. This article also explores how DeLee envisioned his techniques and institutions as the basis for an obstetrics revolution in the United States.
Were the First Transplants Done by Donation after Cardiac Death?
Frederick J. White
Controlled organ donation after cardiac death (DCD) after awaiting cardiac arrest (Maastricht Category III) has been controversial since its formalisation in the Pittsburgh Protocol in 1992. Much of the controversy involves its abbreviated time to declaration of death by cardiocirculatory criteria and its departure from brain death in the required determination of death. Proponents assert that DCD is a renaissance of the earliest days of transplantation, before widespread acceptance of the concept of brain death. Equivalence between modern DCD and historic non-heartbeating organ donation is used to justify DCD practice and dismiss concerns that DCD may not meet the required determination of death. However, examination of the thoughts of transplantation pioneers regarding the required determination of death and examination of the facts and circumstances of their early transplantation cases reveals that moral equivalence drawn between modern DCD and the first organ transplants is not well founded in historical evidence.