In the Journals

In the Journals — January, Part 2, and February 2015

This month’s post is extra large, as it gathers the tail end of last month as well. Also, if you haven’t already, check out the special issues listed at the end of this post. Enjoy!

January 2015, Part 2  (You can find Part 1 here)

Medical Anthropology

Anthropologies In and Of Evidence Making In Global Health Research and Policy (Invited Editorial)
Christopher J. Colvin

Anthropologists are not generally known for being optimistic about the state and status of their discipline’s contribution to health research, policy, and practice. Contemporary debates around the forms and effects of knowledge production in health often focus—despairingly, and with good reason—on the continuing dominance of quantitative, narrowly defined biomedical ways of knowing, the rise of the clinical trial and its broader project of evidence-based medicine (EBM), and the conflicted nexus between science and ‘Big Pharma’s’ pursuit of new pharmaceutical knowledge, technologies, and profits (Goldacre 2013; Lambert, Gordon, and Bogdan-Lovis 2006; Mykhalovskiy and Weir 2004; Petryna 2009). Despite the long-standing efforts of advocates from anthropology, sociology, history, and other disciplines to promote the importance of ‘neglected’ forms of social and behavioral research in health—research often glossed as ‘qualitative research’—the picture that most often emerges of the health arena is of a terrain that consists almost entirely of lab experiments, computer modeling, and randomized controlled trials (RCTs). In the last few years, however, I have had the opportunity to be involved in two small, but potentially revealing developments in qualitative health research that might complicate this conventional narrative in useful ways. I describe these developments next and examine what they may signify for broader questions in medical anthropology about the current processes and politics of knowledge production in global health research and policymaking.

Justice at the Margins: Witches, Poisoners, and Social Accountability in Northern Uganda
Tim Allen and Kyla Reid

Recent responses to people alleged to be ‘witches’ or ‘poisoners’ among the Madi of northern Uganda are compared with those of the 1980s. The extreme violence of past incidents is set in the context of contemporary upheavals and, in effect, encouragement from Catholic and governmental attitudes and initiatives. Mob justice has subsequently become less common. From 2006, a democratic system for dealing with suspects was introduced, whereby those receiving the highest number of votes are expelled from the neighborhood or punished in other ways. These developments are assessed with reference to trends in supporting ‘traditional’ approaches to social accountability and social healing as alternatives to more conventional measures. Caution is required. Locally acceptable hybrid systems may emerge, but when things turn nasty, it is usually the weak and vulnerable that suffer.

Breaking Silences and Upholding Confidences: Responding to HIV in the Lihir Islands, Papua New Guinea
Susan R. Hemer 

Various forms of silence are understood to characterize the response to HIV/AIDS in the Lihir Islands in Papua New Guinea. While some efforts have been made to prevent HIV and educate residents, these seem not to have been in proportion to its classification as a high-risk setting for transmission, given social factors associated with the Lihir gold mine. Confidentiality is both practiced yet critiqued in Lihir as another form of silencing that detracts from efforts to emphasize the serious nature of HIV, promote its prevention, and care for those who live with it. ‘Breaking the silence’ has come to be seen as key to preventing HIV in Lihir, yet while certain silences are acknowledged, others have escaped scrutiny.

Securitarian Healing: Roma Mobility and Health Care in Rome
Lorenzo Alunni 

Over the last decade, Roma populations in Europe have been the object of strict securitarian policies. The Rome case is particularly interesting due to the continued shift from securitarian to humanitarian discourses and actions led by local institutions. The specific health care system implemented in the legal and illegal Roma camps was one of the tools used. The ethnographic fieldwork behind this article involved following the daily activities of a mobile medical unit dedicated to Roma camps in Rome and monitoring a health care project led by a nongovernmental organization. This analysis focuses on one particular dimension of precarious forms of Roma citizenship that the health care policies have developed to address Roma issues: the international mobility dynamics relating to health issues, which drive subjects into a forced integration of multiple, incomplete, and fragmentary medical approaches.

Narrating Narcolepsy—Centering a Side Effect
Britta Lundgren

The mass-vaccination with Pandemrix was the most important preventive measure in Sweden during the A(H1N1) influenza pandemic of 2009–2010, and covered 60% of the population. From 2010, an increased incidence of the neurological disease narcolepsy was reported, and an association with Pandemrix was affirmed for more than 200 children and young adults. The parental experience of this side effect provided a starting point for a collectively shaped critical narrative to be acted out in public, but also personalized narratives of continual learning about the disease and its consequences. This didactic functionality resulted in active meaning-making practices about how to handle the aftermath—using dark humor, cognitive tricks, and making themselves and their children’s bodies both objects and subjects of knowledge. Using material from interviews with parents, this mixing of knowledge work and political work, and the potential for reflective consciousness, is discussed.

Strawberry Fields as Extreme Environments: The Ecobiopolitics of Farmworker Health
Dvera I. Saxton

Based on nearly two years of ethnographic research with farmworkers in California’s Pájaro Valley, in this article I build on Olson’s idea of “extreme environments.” By merging theories of biopolitics and political ecology, or ecobiopolitics, I explore the naturalization of chemically intensive systems of agricultural production and the health consequences they produce for farmworkers. State and industry regimes of agricultural knowledge and practice are designed to control workers and the environment in strawberry fields. They also produce devastating syndemics and chronicities of disease in farmworker bodies and communities. The relationships between health disparities and farmworkers’ lifetimes of exposure to toxic pesticides remain underexplored and poorly understood, perpetuating toxic ignorance about the relationships between pesticides and farmworker health. This enables equating worker well-being with industry well-being. Synergies between ethnographic and environmental health research are needed to challenge toxic ignorance, toxic layering, and the invisible harms they produce in agricultural communities.

Science, Technology, & Human Values

The Pharmaceutical Commons: Sharing and Exclusion in Global Health Drug Development
Javier Lezaun and Catherine M. Montgomery 

In the last decade, the organization of pharmaceutical research on neglected tropical diseases has undergone transformative change. In a context of perceived “market failure,” the development of new medicines is increasingly handled by public-private partnerships. This shift toward hybrid organizational models depends on a particular form of exchange: the sharing of proprietary assets in general and of intellectual property rights in particular. This article explores the paradoxical role of private property in this new configuration of global health research and development. Rather than a tool to block potential competitors, proprietary assets function as a lever to attract others into risky collaborative ventures; instead of demarcating public and private domains, the sharing of property rights is used to increase the porosity of that boundary. This reimagination of the value of property is connected to the peculiar timescape of global health drug development, a promissory orientation to the future that takes its clearest form in the centrality of “virtual” business models and the proliferation of strategies of deferral. Drawing on the anthropological literature on inalienable possessions, we reconsider property’s traditional exclusionary role and discuss the possibility that the new pharmaceutical “commons” proclaimed by contemporary global health partnerships might be the precursor of future enclosures.

“What Is the FDA Going to Think?”: Negotiating Values through Reflective and Strategic Category Work in Microbiome Science
Katherine W. Darling, Angie M. Boyce, Mildred K. Cho, and Pamela L. Sankar 

The US National Institute of Health’s Human Microbiome Project aims to use genomic techniques to understand the microbial communities that live on the human body. The emergent field of microbiome science brought together diverse disciplinary perspectives and technologies, thus facilitating the negotiation of differing values. Here, we describe how values are conceptualized and negotiated within microbiome research. Analyzing discussions from a series of interdisciplinary workshops conducted with microbiome researchers, we argue that negotiations of epistemic, social, and institutional values were inextricable from the reflective and strategic category work (i.e., the work of anticipating and strategizing around divergent sets of institutional categories) that defined and organized the microbiome as an object of study and a potential future site of biomedical intervention. Negotiating the divergence or tension between emerging scientific and regulatory classifications also activated “values levers” and opened up reflective discussions of how classifications embody values and how these values might differ across domains. These data suggest that scholars at the intersections of science and technology studies, ethics, and policy could leverage such openings to identify and intervene in the ways that ethical/regulatory and scientific/technical practices are coproduced within unfolding research.

Sociology of Health & Illness

Becoming incapacitated? Long-term sickness benefit recipients and the construction of stigma and identity narratives
Kayleigh Garthwaite 

The transition to becoming ‘incapacitated’ and receiving sickness benefits represents a significant shift in an individual’s narrative. Drawing on in-depth interviews with 25 long-term sickness benefits recipients in North-East England, this article focuses upon how individuals perceived and managed becoming ‘incapacitated’, particularly in relation to stigma and identity. The findings show that participants negotiated changes to their identity in varying ways – constructing new dimensions of self, validating their illness and pursuing aspirations. Importantly, the transition onto sickness benefits does not inevitably result in a shift to a negative identity. The term incapacity can include many realities, challenging the notion of sickness benefit recipients as being passively dependent. Instead, an active, sometimes very functional sense of self can be accompanied by a positive identity for recipients, which is especially important, in a context of the rhetoric surrounding ongoing welfare reform and sickness benefits recipients in the UK.

Potential challenges facing distributed leadership in health care: evidence from the UK National Health Service
Graeme Martin, Nic Beech, Robert MacIntosh, and Stacey Bushfield 

The discourse of leaderism in health care has been a subject of much academic and practical debate. Recently, distributed leadership (DL) has been adopted as a key strand of policy in the UK National Health Service (NHS). However, there is some confusion over the meaning of DL and uncertainty over its application to clinical and non-clinical staff. This article examines the potential for DL in the NHS by drawing on qualitative data from three co-located health-care organisations that embraced DL as part of their organisational strategy. Recent theorising positions DL as a hybrid model combining focused and dispersed leadership; however, our data raise important challenges for policymakers and senior managers who are implementing such a leadership policy. We show that there are three distinct forms of disconnect and that these pose a significant problem for DL. However, we argue that instead of these disconnects posing a significant problem for the discourse of leaderism, they enable a fantasy of leadership that draws on and supports the discourse.

Soft governance, restratification and the 2004 general medical services contract: the case of UK primary care organisations and general practice teams
Suzanne Grant, Adele Ring, Mark Gabbay, Bruce Guthrie, Gary McLean, Frances S. Mair, Graham Watt, David Heaney, and Catherine O’Donnell

In the UK National Health Service, primary care organisation (PCO) managers have traditionally relied on the soft leadership of general practitioners based on professional self-regulation rather than direct managerial control. The 2004 general medical services contract (nGMS) represented a significant break from this arrangement by introducing new performance management mechanisms for PCO managers to measure and improve general practice work. This article examines the impact of nGMS on the governance of UK general practice by PCO managers through a qualitative analysis of data from an empirical study in four UK PCOs and eight general practices, drawing on Hood’s four-part governance framework. Two hybrids emerged: (i) PCO managers emphasised a hybrid of oversight, competition (comptrol) and peer-based mutuality by granting increased support, guidance and autonomy to compliant practices; and (ii) practices emphasised a broad acceptance of increased PCO oversight of clinical work that incorporated a restratified elite of general practice clinical peers at both PCO and practice levels. Given the increased international focus on the quality, safety and efficiency in primary care, a key issue for PCOs and practices will be to achieve an effective, contextually appropriate balance between the counterposing governance mechanisms of peer-led mutuality and externally led comptrol.

Understanding health through social practices: performance and materiality in everyday life
Cecily Jane Maller 

The importance of recognising structure and agency in health research to move beyond methodological individualism is well documented. To progress incorporating social theory into health, researchers have used Giddens’ and Bourdieu’s conceptualisations of social practice to understand relationships between agency, structure and health. However, social practice theories have more to offer than has currently been capitalised upon. This article delves into contemporary theories of social practice as used in consumption and sustainability research to provide an alternative, and more contextualised means, of understanding and explaining human action in relation to health and wellbeing. Two key observations are made. Firstly, the latest formulations of social practice theory distinguish moments of practice performance from practices as persistent entities across time and space, allowing empirical application to explain practice histories and future trajectories. Secondly, they emphasise the materiality of everyday life, foregrounding things, technologies and other non-humans that cannot be ignored in a technologically dependent social world. In concluding, I argue the value of using contemporary social practice theories in health research is that they reframe the way in which health outcomes can be understood and could inform more effective interventions that move beyond attitudes, behaviour and choices.

On interviewing people with pets: reflections from qualitative research on people with long-term conditions
Sara Ryan and Sue Ziebland

There is mounting evidence that pets are associated with physiological, psychological and social benefits for humans. Much of this research has come from western countries, where there have been consistent calls for greater engagement with pet ownership and health. Drawing on a secondary analysis of 61 in-depth interviews with people, or carers of people, with long-term conditions, we explore how pets feature in people’s narrative accounts of their experiences. Our findings demonstrate the multifaceted nature of people’s relationships with pets, and the embedded and embodied ways in which human–nonhuman interactions are played out in narratives of chronic illness. Our study differs from other work on pets and health in that, by returning to the interview video recordings, we were able to explore the sometimes three-way interactions, the co(a)gency, between participants, pets and researchers. Pets were often presented as important family members, yet the researchers’ responses to the presence or talk about pets was often markedly different from their reactions to other household members. We conclude with cautioning against the downgrading of pets in narrative health research. Narrative approaches may invite participants to talk about what is important to them, yet they clearly have limitations in practice.

Unstable terminality: negotiating the meaning of chronicity and terminality in motor neurone disease (open access)
Sverre Vigeland Lerum, Kari Nyheim Solbrække, Trygve Holmøy, and Jan C. Frich 

This paper explores the meaning of chronicity and terminality in motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS). There is no known cause or cure for MND, and expected survival is 2–5 years, but several interventions may improve or prolong life. This study draws on qualitative interview data with health professionals in hospitals and primary care, and family carers, in Norway. The actors emphasised chronic and terminal aspects in subtly different ways along the entire illness trajectory, also when recounting the trajectory in retrospect. As a consequence of improved health services and medical technology the distinction between chronicity and terminality has become more vague and sometimes ambiguous. We suggest the concept unstable terminality to describe this ambiguity. While MND is a fatal diagnosis; it may be contested, as contingencies and interventions create an indefinite time scope. The instability creates challenges for primary care which is dependent on prognostic information to organise their effort; hospitals tackle the instability by pre-scheduled consultations allowing for avoidance of an explicit prognosis. Some carers experienced what we understand as a disruption within the disruption, living with chronic and terminal illness simultaneously, which made the limbo phase more challenging to overcome.

Male combat veterans’ narratives of PTSD, masculinity, and health
Nick Caddick, Brett Smith, and Cassandra Phoenix 

This article uniquely examines the ways a group of male combat veterans talk about masculinity and how, following post-traumatic stress disorder (PTSD), they performed masculinities in the context of a surfing group, and what effects this had upon their health and wellbeing. Participant observations and life history interviews were conducted with a group of combat veterans who belonged to a surfing charity for veterans experiencing PTSD. Data were rigorously explored via narrative analysis. Our findings revealed the ways in which veterans enacted masculinities in accordance with the values that were cultivated during military service. These masculine performances in the surfing group had important effects both on and for the veterans’ wellbeing. Significantly, the study highlights how masculine performances can be seen alternately as a danger and as a resource for health and wellbeing in relation to PTSD. The article advances knowledge on combat veterans and mental health with critical implications for the promotion of male veterans’ mental health. These include the original suggestion that health-promoting masculine performances might be recognised and supported in PTSD treatment settings. Rather than automatically viewing masculinity as problematic, this article moves the field forward by highlighting how hegemonic masculinities can be reconstructed in positive ways which might improve veterans’ health and wellbeing.

The business of care: the moral labour of care workers (open access)
Eleanor K. Johnson

Drawing on a case study conducted in a private residential care home, this article examines the emotional labour of care workers in relation to the moral construction of care and the practical experiences of work. An examination of the company’s discursive attempts to construct, manage and demarcate its employees’ emotional labour was carried out alongside an exploration of the carers’ own interpretations of, and enrolment in, the care-giving role. The potential economic and emotional consequences of these occurrences were a key focus of the inquiry. The study found that carers, encouraged by the company, naturalised their emotional labour, and that this had contradictory consequences. On the one hand it justified the economic devaluation of the carer’s work and left her vulnerable to emotional over-involvement and client aggression. On the other, it allowed the worker to defend the moral interests of those within her care and to see when those interests were in conflict with the economic motivations of her employer.

Stopped hearts, amputated toes and NASA: contemporary legends among healthy volunteers in US phase I clinical trials
Jill A. Fisher 

The first stage of testing new pharmaceuticals in humans is referred to as a phase I clinical trial. The purpose of these studies is to test the safety of the drugs and to establish appropriate doses that can later be given to patients. Most of these studies are conducted under controlled, in-patient conditions using healthy volunteers who are paid for their participation. To explore healthy volunteers’ experiences in clinical trials, an ethnographic study was conducted at six in-patient phase I clinics in the USA. In addition to the observation of clinic activities (from informed consent procedures to dosing to blood draws), 268 semi-structured interviews were conducted, 33 with clinic staff and 235 with healthy volunteers. Drawing on this dataset, this article explores healthy volunteers’ exchange of contemporary legends about phase I clinical trials. In addition to potentially scaring the listener and communicating distrust in the medical community, these incredible stories help participants cope with perceived stigma and establish a gradient of risk of trial participation, creating potential boundaries to their participation in medical research. The article argues that contemporary legends play a productive role in society, shaping how people view themselves and others and influencing their decisions about risky activities.

Patterns and causes of health inequalities in later life: a Bourdieusian approach
Pauline McGovern and James Y. Nazroo 

This study explores the relationship between social class and health change in older people in a path analysis, using data from the English Longitudinal Study of Ageing (n = 6241) in a Bourdieusian theoretical framework. Bourdieu drew a distinction between the occupational characteristics by which people are classified and the secondary properties of class that relate to lifestyle (economic, cultural and social capitals). Our path model includes both occupational and secondary characteristics of objective social class as well as a measure of subjective social class. We investigate the effects of the predictors on change in three health outcomes (self-rated health, number of symptoms of depression and number of difficulties with the activities of daily living). The analysis adds to Bourdieusian research by showing how the effects of objective social class on health are partially mediated by perceived social status. It also adds to substantive research on the relationship between class and health by suggesting that class-related health inequalities do persist for older people, even for those who are not in paid employment. It suggests that a large amount of the effect of occupation on the health of older people is not direct but indirect; through their personal wealth and lifestyle.

Technology and Culture

A Case in Pointe: Romance and Regimentation at the New York City Ballet
Whitney E. Laemmli 

This article analyzes the ballet dancer’s pointe shoe as a technology of artistic production and bodily discipline. Drawing on oral histories, memoirs, dance journals, advertisements, and other archival materials, it demonstrates that the shoe utilized by dancers at George Balanchine’s New York City Ballet was not the quintessentially Romantic entity it is so often presumed to be. Instead, it emerged from uniquely twentieth-century systems of labor and production, and it was used to alter dancers’ bodies and professional lives in particularly modern ways. The article explores not only the substance of these changes but also the ways in which Balanchine’s artistic oeuvre was inextricably intertwined with the material technologies he employed and, more broadly, how the history of technology and the history of dance can productively inform one another. Fundamentally, this article recasts Balanchine, seeing him not as a disconnected artist but as an eager participant in the twentieth-century national romance with American technology.

Theory, Culture and Society

Social Science and Neuroscience beyond Interdisciplinarity: Experimental Entanglements
Des Fitzgerald and Felicity Callard 

This article is an account of the dynamics of interaction across the social sciences and neurosciences. Against an arid rhetoric of ‘interdisciplinarity’, it calls for a more expansive imaginary of what experiment – as practice and ethos – might offer in this space. Arguing that opportunities for collaboration between social scientists and neuroscientists need to be taken seriously, the article situates itself against existing conceptualizations of these dynamics, grouping them under three rubrics: ‘critique’, ‘ebullience’ and ‘interaction’. Despite their differences, each insists on a distinction between sociocultural and neurobiological knowledge, or does not show how a more entangled field might be realized. The article links this absence to the ‘regime of the inter-’, an ethic of interdisciplinarity that guides interaction between disciplines on the understanding of their pre-existing separateness. The argument of the paper is thus twofold: (1) that, contra the ‘regime of the inter-’, it is no longer practicable to maintain a hygienic separation between sociocultural webs and neurobiological architecture; (2) that the cognitive neuroscientific experiment, as a space of epistemological and ontological excess, offers an opportunity to researchers, from all disciplines, to explore and register this realization.

Critical Neuroscience and Socially Extended Minds
Jan Slaby and Shaun Gallagher 

The concept of a socially extended mind suggests that our cognitive processes are extended not simply by the various tools and technologies we use, but by other minds in our intersubjective interactions and, more systematically, by institutions that, like tools and technologies, enable and sometimes constitute our cognitive processes. In this article we explore the potential of this concept to facilitate the development of a critical neuroscience. We explicate the concept of cognitive institution and suggest that science itself is a good example. Science, through various practices and rules, shapes our cognitive activity so as to constitute a certain type of knowledge, packaged with relevant skills and techniques. To develop this example, we focus on neuroscience, its cultural impact, and the various institutional entanglements that complicate its influence on reframing conceptions of self and subjectivity, and on defining what questions count as important and what kind of answers will be valued.

 

February 2015

American Ethnologist

Compassion technology: Life insurance and the remaking of kinship in Swaziland’s age of HIV
Casey Golomski 

An emergent life insurance market in Swaziland is prompting some families to remake kinship as the entrustment of a generation of deceased relatives’ children. Coincident with high HIV/AIDS mortality and changing economic policies for the financial services sector, Swaziland saw an influx of foreign insurance companies in the early 2000s. Those companies offered incentives like burial coverage and cash stipends, and they compelled families’ legal adoption of children as orphans through the state, an ambiguous contrast to customary child entrustment and caregiving practices. I offer ethnographic insight on financialization in the global South and conceptualize insurance as a biopolitical, moralized “compassion technology,” which enveloped persons’ financial-legal obligations within humanitarian and global health discourses of social regeneration.

Developmental diseases—an introduction to the neurological human (in motion)
Tobias Rees 

Plasticity has conceptually guided much research on the adult human brain since the late 1990s. The emergence of this idea has catapulted the neurosciences beyond the synaptic, chemical conception of the brain, its diseases, and its humans that dominated the second half of the 20th century. I explore the figure of what I call the “neurological human” to bring such mutations of the neuroscientific order of knowledge into a sharp analytical focus.

Cultural Anthropology (open access)

Wild Goose Chase: The Displacement of Influenza Research in the Fields of Poyang Lake, China
Lyle Fearnley

This article follows transnational avian influenza scientists as they move their experimental systems and research objects into what they refer to as the “epicenter” of flu pandemics, southern China. Based on the hypothesis that contact between wild and domestic bird species could produce new pandemic flu viruses, scientists set up a research program into the wild–domestic interface at China’s Poyang Lake. As influenza comes to be understood in terms of multispecies relations and ecologies in addition to the virus proper, the scientific knowledge of influenza is increasingly dependent on research conducted at particular sites, such as Poyang Lake. What does this movement of influenza research from laboratory to field mean for anthropological concepts of scientific knowledge? A widely shared premise among anthropologists is that scientific knowledge is made in experimental practice, but this practice turn in science studies draws largely from fieldwork inside laboratories. In this article, drawing on fieldwork with both influenza scientists and poultry breeders, I show how scientific research objects can be displaced by the practices of poultry breeders rather than by experimental practice itself. For these poultry breeders, refusing to respect the distinction of wild and domestic, were breeding wild birds.

The Thing in a Jar: Mushrooms and Ontological Speculations in Post-Yugoslavia
Larisa Jasarevic 

This essay thinks with things that ferment medical remedies in recycled jars and issue exuberant surpluses across kitchens in Bosnia and ex-Yugoslavia. While the jars are handled under the preferred sign of the mushroom and brewing recipes include instructions on non-commercial exchange, the nature of the things in the jar remains vague. Brewing in the kitchens and circling as gifts are buoyant life-forms that alter their hosts, inspire zones of unexpected connection and relational innovation, and direct home trials and ontological speculations around some burning, practical questions: How best to relate to the mushroom? With whom should one relate via the mushroom, and how? The texts explores the fungal materialities and pluripotencies with an ear for popular experiments, teasing out the banal as well as charmed interplay between imagination and association, knowledge and experience. I join the conversation on new materialisms and step into spaces of being and relating across formal differences, but do so in the idiom of kitchen fermentations rather than multispecies or multiethnic relations to attend to the kinds of things that act and inspire wonder outside ready-made rubrics and analytics.

From Anthropologist to Actant (and back to Anthropology): Position, Impasse, and Observation in Sociotechnical Collaboration
Anthony Stavrianakis 

Anthropologists are increasingly invited to participate in collaborations with natural scientists, among other experts, in their capacity as anthropologists. Such invitations give pause for thought about the character of the positions and practices that an anthropologist can occupy and perform. This article draws on participant observation in the Socio-Technical Integration Research (STIR) project, an endeavor based at Arizona State University, which aimed to modulate scientific practice. I observe and analyze the disquiet of participating social scientists by questioning the epistemic, ethical, and affective parameters of such modulation, in which social scientists were ultimately positioned and framed as actants—and not engaged as thinking subjects—for the reflexivity of natural scientists toward natural scientific work. I describe how such a method for increasing and extending the scope of scientific reflexivity was ultimately bound to the dominant instrumental norms and values of contemporary technoscience. The article suggests that reflection on problems of collaboration through questions of position and mode of engagement opens the scope and parameters for contemporary anthropological inquiry into anthropological collaborations within domains of science and technology.

 

Health and Place

The meaning of ‘place’ in families’ lived experiences of paediatric outpatient care in different settings: A descriptive phenomenological study
Gemma Heath, Sheila Greenfield, and Sabi Redwood 

Health service reforms in the United Kingdom have sought to ensure that children and young people who are ill receive timely, high quality and effective care as close to home as possible. Using phenomenological methods, this study examined the experience and impact of introducing new, community-based paediatric outpatient clinics from the perspective of NHS service-users. Findings reveal that paediatric outpatient ‘care closer to home’ is experienced in ways that go beyond concerns about location and proximity. For families it means care that ‘fits into their lives’ spatially, temporally and emotionally; facilitating a sense of ‘at-homeness’ within the self and within the place, through the creation of a warm and welcoming environment, and by providing timely consultations which attend to aspects of the families’ lifeworld.

Re-thinking children׳s agency in extreme hardship: Zimbabwean children׳s draw-and-write about their HIV-affected peers
Catherine Campbell, Louise Andersen, Alice Mutsikiwa, Claudius Madanhire, Morten Skovdal, Constance Nyamukapa, and Simon Gregson 

We compare two analyses of the same ‘draw-and-write’ exercises in which 128 Zimbabwean children represented their HIV-affected peers. The first, informed by the ‘New Social Studies of Childhood’, easily identified examples of independent reflection and action by children. The second, informed by Sen׳s understandings of agency, drew attention to the negative consequences of many of the choices available to children, and the contextual limits on outcomes children themselves would value: the support of caring adults, adequate food, and opportunities to advance their health and safety. Conceptualisations of agency need to take greater account of children׳s own accounts of outcomes they value, rather than identifying agency in any form of independent reflection and action per se.

Conceptualizations of pluralistic medical fields: exploring the therapeutic landscapes of Nepal
Rikke Stamp Thorsen 

Using the concept of ‘therapeutic landscapes’ this study explores how people in Nepal conceptualize their health care opportunities and how health care seeking practices are interpreted and experienced differently among people in their everyday contexts. Relational therapeutic landscapes were experienced through notions related to time and place as treatments were positioned along spectrums ranging from home to city and past to present. Conceptualizations of treatments were influenced by accessibility, lack of knowledge and uncertainties related to getting diagnosis as well as structural constraints beyond the health care system.

“It is about being outside”: Canadian youth’s perspectives of good health and the environment
Roberta L. Woodgate and Olga Skarlato 

Drawing on qualitative data generated from an ethnographic study exploring Canadian youth’s understanding of health, this paper examines youth’s perspectives of the relationships between health and environment. Seventy-one youth (12 to 19 years of age) took part in individual and focus group interviews, as well as in photovoice interviews. Although initial discourse about health mainly focused on healthy eating and exercise, youth were more enthused and able to share their thoughts and feelings about the relationships between health and environment during the photovoice interviews. For these youth, good health was defined and visualized as “being outside” in a safe, clean, green, and livable space. Youth talked about conditions contributing to healthy environments and how healthy environments contributed to a strong sense of place. Overall, the conversations about the environment evoked many feelings in the youth. Results are discussed in the context of current research and in relation to youth, but also more broadly in relation to research on health and environment.

Putting the party down on paper: A novel method for mapping youth drug use in private settings
Signe Ravn and Cameron Duff 

This article proposes a novel method for generating context-rich knowledge about ‘hard-to-access’ places. We ground our discussion in a recent qualitative study of social settings of youth drug use in Denmark. The study confirmed that private house parties are common sites of youth drug use, although these parties presented limited opportunities for fieldwork. In response, a ‘map-task’ was introduced to the study to complement fieldwork and interviews. We assess the most significant methodological and epistemological features of this map-task, and explore how it may to used to conduct observations ‘from a distance’ in hard-to-access places. Further, we argue that the map-task has a number of analytical and logistical advantages for scholars interested in the health and social aspects of ‘hidden’ phenomena, such as youth drug use.

Dreaming of toilets: Using photovoice to explore knowledge, attitudes and practices around water–health linkages in rural Kenya
Elijah Bisung, Susan J. Elliott, Bernard Abudho, Corinne J. Schuster-Wallace, and Diana M. Karanja 

As part of a knowledge, attitudes, practices and empowerment (KAPE) project implemented by the United Nations University Institute for Water, Environment and Health (UNU-INWEH) in the Lake Victoria Basin, this paper reports findings from a photovoice study with women in Usoma, a lakeshore community in Western Kenya. Drawing on ecosocial and political ecology theory, findings reveal that access to water, perceptions and practices were shaped by ecological and broader structural factors. Further, collective actions to improve access were constrained by institutional and economic structures, thus (re)enforcing inequalities.

 

Philosophy, Ethics, and Humanities in Medicine (open access)

Luria revisited: cognitive research in schizophrenia, past implications and future challenges
Yuliya Zaytseva, Raymond CK Chan, Ernst Pöppel, and Andreas Heinz 

Contemporary psychiatry is becoming more biologically oriented in the attempt to elicit a biological rationale of mental diseases. Although mental disorders comprise mostly functional abnormalities, there is a substantial overlap between neurology and psychiatry in addressing cognitive disturbances. In schizophrenia, the presence of cognitive impairment prior to the onset of psychosis and early after its manifestation suggests that some neurocognitive abnormalities precede the onset of psychosis and may represent a trait marker. These cognitive alterations may arise from functional disconnectivity, as no significant brain damage has been found. In this review we aim to revise A.R. Luria’s systematic approach used in the neuropsychological evaluation of cognitive functions, which was primarily applied in patients with neurological disorders and in the cognitive evaluation in schizophrenia and other related disorders. As proposed by Luria, cognitive processes, associated with higher cortical functions, may represent functional systems that are not localized in narrow, circumscribed areas of the brain, but occur among groups of concertedly working brain structures, each of which makes its own particular contribution to the organization of the functional system. Current developments in neuroscience provide evidence of functional connectivity in the brain. Therefore, Luria’s approach may serve as a frame of reference for the analysis and interpretation of cognitive functions in general and their abnormalities in schizophrenia in particular. Having said that, modern technology, as well as experimental evidence, may help us to understand the brain better and lead us towards creating a new classification of cognitive functions. In schizophrenia research, multidisciplinary approaches must be utilized to address specific cognitive alterations. The relationships among the components of cognitive functions derived from the functional connectivity of the brain may provide an insight into cognitive machinery.

Erasing traumatic memories: when context and social interests can outweigh personal autonomy
Andrea Lavazza 

Neuroscientific research on the removal of unpleasant and traumatic memories is still at a very early stage, but is making rapid progress and has stirred a significant philosophical and neuroethical debate. Even if memory is considered to be a fundamental element of personal identity, in the context of memory-erasing the autonomy of decision-making seems prevailing. However, there seem to be situations where the overall context in which people might choose to intervene on their memories would lead to view those actions as counterproductive. In this article, I outline situations where the so-called composition effects can produce negative results for everyone involved, even if the individual decisions are not as such negative. In such situations medical treatments that usually everyone should be free to take, following the principle of autonomy, can make it so that the personal autonomy of the individuals in the group considered is damaged or even destroyed. In these specific cases, in which what is called the “conformity to context” prevails, the moral admissibility of procedures of memory-erasing is called into question and the principle of personal autonomy turns out to be subordinate to social interests benefitting every member of the group.

Social Science & Medicine

As always, Social Science & Medicine has more articles than we can cover here. However, three recent items of note are special issues or sections of issues in January and February:

Special issue section Transnational Healthcare: Cross-Border Perspectives; Edited by David Bell, Ruth Holliday, Meghann Ormond and Tomas Mainil

Special Issue: Social Networks, Health and Mental Health; Edited by Alexander C. Tsai and Andrew V. Papachristos

Special Issue: Educational Attainment and Adult Health: Contextualizing Causality; Edited by Jennifer Karas Montez and Esther M. Friedman

 

Social Studies of Science

Politicizing science: Conceptions of politics in science and technology studies
Mark B Brown

This essay examines five ideal–typical conceptions of politics in science and technology studies. Rather than evaluating these conceptions with reference to a single standard, the essay shows how different conceptions of politics serve distinct purposes: normative critique, two approaches to empirical description, and two views of democracy. I discuss each conception of politics with respect to how well it fulfills its apparent primary purpose, as well as its implications for the purpose of studying a key issue in contemporary democratic societies: the politicization of science. In this respect, the essay goes beyond classifying different conceptions of politics and also recommends the fifth conception as especially conducive to understanding and shaping the processes whereby science becomes a site or object of political activity. The essay also employs several analytical distinctions to help clarify the differences among conceptions of politics: between science as ‘political’ (adjective) and science as a site of ‘politics’ (noun), between spatial-conceptions and activity-conceptions of politics, between latent conflicts and actual conflicts, and between politics and power. The essay also makes the methodological argument that the politics of science and technology is best studied with concepts and methods that facilitate dialogue between actors and analysts. The main goal, however, is not to defend a particular view of politics, but to promote conversation on the conceptions of politics that animate research in social studies of science and technology.

Sustaining cyborgs: Sensing and tuning agencies of pacemakers and implantable cardioverter defibrillators
Nelly Oudshoorn

Recently there has been a renewed interest in cyborgs, and particularly in new and emerging fusions of humans and technologies related to the development of human enhancement technologies. These studies reflect a trend to follow new and emerging technologies. In this article, I argue that it is important to study ‘older’ and more familiar cyborgs as well. Studying ‘the old’ is important because it enables us to recognize hybrids’ embodied experiences. This article addresses two of these older hybrids: pacemakers and implantable cardioverter defibrillators inserted in the bodies of people suffering from heart-rhythm disturbances. My concern with hybrid bodies is that internal devices seem to present a complex and neglected case if we wish to understand human agency. Their ‘users’ seem to be passive because they cannot exert any direct control over the working of their devices. Technologies inside bodies challenge a longstanding tradition of theorizing human–technology relations only in terms of technologies external to the body. Cyborg theory is problematic as well because most studies tend to conceptualize the cyborg merely as a discursive entity and silence the voices of people living as cyborgs. Inspired by feminist research that foregrounds the materiality of the lived and intimate relations between bodies and technologies, I argue that creating these intimate relations requires patients’ active involvement in sustaining their hybrid bodies. Based on observations of these monitoring practices in a Dutch hospital and interviews with patients and technicians, the article shows that heart cyborgs are far from passive. On the contrary, their unique experience in sensing the entangled agencies of technologies and their own heart plays a crucial role in sustaining their hybrid bodies.

Trust in standards: Transitioning clinical exome sequencing from bench to bedside
Stefan Timmermans 

Clinical exome sequencing is a genetic technology making the transition from a laboratory research tool to a routine clinical technique used to diagnose patients. Standards help make this transition by offering authoritative shortcuts for time-intensive tasks, but each shortcut means that something is lost during abstraction. In clinical exome sequencing, reliance on standards may obscure the match between a patient’s phenotype and genotype. Based on three years of observations, I show how a clinical exome sequencing team decides when to trust standards and when to develop workarounds. I argue that the match between phenotype and genotype is circumscribed by the team’s reliance on specific standards and that trusting in standards means trusting in experts’ appropriate use of standards, generating a workflow of reflexive standardization.

 

Special Issues Previously Covered on Somatosphere

Medical Anthropology: Ethics, Epistemology, and Engagement: Encountering Values in Medical Anthropology

Culture, Medicine, and Psychiatry: The Practice of Constraint in Psychiatry: Emergent Forms of Care and Control

Medicine Anthropology Theory (MAT)Inaugural Issue


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