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Science, Medicine, and Anthropology
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Fernando Vidal’s and Nélia Dias’s Endangerment, Biodiversity and Culture by Frédéric Keck

12 février 2016 - 6:01pm

Endangerment, Biodiversity and Culture

By Fernando Vidal and Nélia Dias (editors)

Routledge, 2016, 264 pages

What do natural reserves, botanical and zoological parks, anthropology museums and department of linguistics have in common? They all describe their objects as endangered beings. The series of essays collected by Fernando Vidal and Nélia Dias start from this diagnosis. If there is a contemporary “endangerment sensibility” in global communities of experts, what is its history, and what kinds of assemblages does it produce?

Raising such historical questions involves stepping back from the catastrophic discourse on species extinction and the sense of crisis that often accompanies environmental humanities. When so many different objects are described and conceived as endangered, what does it tell about our contemporary ontologies? First and foremost, it means that the classical distinction between a stabilized nature and a realm of culture opened to human initiative is obsolete. At the age of the ‘anthropocene’ (beautifully evoked by Julia Adeney Thomas in her coda to Vidal’s and Dias’s volume entitled “Who is the ‘We’ Endangered by Climate Change?”), when the human species appears as a geological force able to transform its environment permanently, all the beings we live with appear as more or less endangered.

The two terms that constitute the title of this book—biodiversity and culture—do not rely, therefore, on the classical distinction between nature and culture. On the contrary, the editors rely on Philippe Descola’s argument that the problem of biodiversity forces us to think “beyond nature and culture”, since natural diversity is as endangered as cultural diversity. The problem is rather to think about the different ways to represent diversity, thus raising the question: how does the loss of diversity appear as a danger today?

One of the main answers given to this question at the global level is by drawing up lists. The Red List of Threatened Species elaborated since 1963 by the IUCN (International Union for Conservation of Nature) has established a standard, more or less followed by the Endangered Species Act adopted in the US in 1970. The same kind of listing has been made for languages—as in UNESCO’s Language Vitality and Endangerment Framework—or for human societies—it was one of the motivations for the anthropological distinctions between the “primitive races” and “civilized societies.” The same mode of representation works for tangible and intangible heritage protected by UNESCO since 1972 or listed in the Heritage at Risk Register in the United Kingdom since 1998. Rodney Harrison argues that “one of the important implications of the World Heritage Listing is that it enables forms of government ‘at a distance’ (that) has made possible a shift from the conservation of endangered monuments and buildings to the listing of forms of imperiled traditions and customs as part of the expansion of museological forms of management. (…) Such an expansion has taken place by way of a looping effect (…) such that they ultimately generate their own endangered worlds.” (214)

The museum is probably the paradigmatic form of listing, through the practice of the inventory for national heritage. Following that model, nature itself was conceived as a museum whose diversity should be listed and preserved—in short, as a botanical and zoological garden for human contemplation. About natural species, David Sepkoski writes: “Under the endangerment sensibility, the threat to be protected against is extinction, and what is to be preserved is not any single entity but rather diversity itself.” (62) The discourse on extinction is at least two centuries old, but Sepkoski notes that it has shifted from the scientific representation of a slow, gradual and inevitable competition between individuals to an ecological warning on the sudden and catastrophic disappearance of whole species. But such a position raises questions on which species, language, society or heritage site should be preserved locally, and how many of them would constitute “diversity.” As Etienne Benson notes, “the endangerment sensibility facilitates certain kinds of relationships and hinders others.” (176) Thus, Stefanie Gänger shows that the memorialization of the “dying gasp” of Pascual Cona, presented in 1927 as one of the last Araucanians, was a way for the Chilean government, through “salvage anthropology”, to silence the land claims of their descendants, now called Mapuche.

Observing the localities where lists of endangered beings are invented and implemented allows the authors of these volumes to describe the emotions that produce, through a sense of endangerment, these objects that need to be conserved. Fernando Vidal and Nélia Dias discuss, from the perspective of social anthropology and sciences studies, the notion of intrinsic value, which is highly debated in environmental humanities. They show that values emerge out of contested encounters between different relations to the environment, expressed through emotions and engagements. The distance produced by comparison between different areas allows the authors to step back from the catastrophic sense of urgency while opening the field to a plurality of ontologies engaged in controversies about endangered heritages. “Realizing that biocultural persuasion is the product of a ‘crisis narrative’ does not imply denying the legitimate reasons for worrying about the erosion of diversity on a global scale; rather, it offers a starting point for analyses of endangerment that are less defined with regard to crisis, and more oriented toward the possibilities that emerge from human agency and from the ‘processes of hybridity’ that characterize globalization.” (13)

One of the main results of this collective investigation is to draw attention to the analogies between the museum, the lab and the natural reserve, considered as vulnerable machineries to preserve endangered beings. They are repositories where objects are stored away from risks of destruction or extinction, and that must be constantly maintained. Rebecca Lemov thus shows that Claude Lévi-Strauss conceived the Laboratoire d’anthropologie sociale of the Collège de France on the model of departments of cultural anthropology he had visited in the US, as a space where computers would help humans preserve massive stockpiles of data, under the conviction, often expressed with romantic tropes of lament, that after “savage” societies had disappeared, the files written about them were themselves vulnerable. Lemov thus speaks of a “second-order endangerment” as “a particular way of arranging objects and ordering systems.” (89) Lemov shows the influence on Lévi-Strauss of a project of microcard database led by Bert Kaplan in the US, whose ambition was “to revolutionize the storage of social scientific data sets that were effectively like the California Condor or the Roseate Spoonbill, facing extinction from forces of neglect or active harm (such as floods, fire and poor storage conditions.)” (97) Lemov thus asks important questions on the techniques through which the life of societies is transformed into “stocks of knowledge” that can be stored, circulated and used for academic purposes—a question that is still relevant when physical microcards have been replaced by huge databanks on websites.

If anthropology labs are conceived as museums for the preservation of data on disappearing societies, natural reserves are also conceived as museums where biodiversity is conserved. Stefan Bargheer thus shows that biosphere reserves were designed by UNESCO in contrast with national parks, not as spaces where wildlife should be preserved from human contact, but as sites of experimentation on the monitoring of biodiversity. The definition of zones (core zone, buffer zone and transition zone) allowed naturalists to preserve the core zone from the spillover caused by the intervention in the transition zone. Etienne Benson also contrasts relations to wild birds in the US, between discovery, salvage, preservation and management, through the analysis of controversies on the reintroduction of condors raised in captivity. “Trapping or shooting one of these free-living condors, he notes, even for the purposes of science, bore less resemblance to collecting in the style of late nineteenth-century naturalists and egg enthusiasts than to stealing a specimen from a museum drawer or a living animal from a zoo exhibit.” (189)

Joanna Radin gives an interesting cause for these analogies between different spaces where endangered beings are preserved: the same technologies are used to freeze and cold-store things, coming from cryobiology, a technique invented in the 1930’s for the sperm of farm animals. She looks at the dissemination of a rationality she calls “planned hindsight”, in which value is given to collections preserved in the present by the use that can be made in the future by scientists who will have more knowledge or need of variation than today. Different projects of “frozen arks” thus aim at salvaging not species themselves but the tissues collected by scientists that contain potential knowledge for the future. “Planned hindsight,” Radin writes, “requires the imagination of the present as a future past. Endangerment serves as both a prophecy and a prognosis, which makes the project of freezing life appear as worthy of investment even if its benefits cannot be clearly defined.” (236)

Endangerment, through the various forms it has produced in global landscapes, thus appears as more than a diffuse sensibility providing intrinsic value to threatened beings. It is a stage in a rational process of valuation of life, a mode of accumulation of the past and investment in the future that mobilizes affects and concepts in a productive way.

 

Frédéric Keck is a researcher at the Laboratoire d’anthropologie sociale and the head of the research department of the musée du quai Branly. He has published works on the history of social anthropology and on contemporary biosecurity practices.

“Bioculturalism” — An interview with Jason DeCaro by Jason DeCaro

8 février 2016 - 8:05pm

“Bioculturalism” resumes this week with the first of three new interviews with self-professed biocultural anthropologists. This series aims to get anthropologists and closely-related others talking seriously, and thinking practically, about how to synergize biological and social scientific approaches to human health and well-being, and to what positive ends. New interviews will be published every other week, followed by a new piece by series organizer Jeffrey G. Snodgrass on Internet gaming, which has progressed in tandem with the series’ publication.

In this interview, Jason DeCaro responds to questions posed Snodgrass.

 

How and why might cultural anthropologists and social scientists interested in health benefit from integrating biological variables/biomarkers into their research and analysis?

This is hard to answer in the abstract because it depends so much on the research question, but I will give it a shot. In psychological and medical anthropology, we talk a lot about embodiment. The body is deeply encultured, to the extent that I am completely convinced neurological functioning can’t be understood properly without reference to the shaping of the nervous system through culturally-constructed developmental experiences throughout the lifespan. Perhaps that is more a case for why biologically-oriented anthropologists should attend to culture. But here’s the thing. It seems to me that the reverse is equally compelling. Twenty years ago, who would have thought that inflammation has a role in depression? (It does.) And we’ve known for a while that physical activity does as well. And undernutrition. And so on and so forth.

Another way of looking at this is that biomarkers provide one part—not the whole, just a piece, but an important one—of the picture regarding the subjective impact of daily experience. I emphasize “subjective,” even though we’re talking about a quantifiable bio measure, because brain-body connections are so pervasive that subjectivity influences a wide array of biological parameters. It’s sort of boring, honestly, when the biomarkers just confirm what you already thought based on talking to people. But on the other hand, when the biomarkers tell you something counterintuitive or surprising—like that some group (or even an individual) is biologically responding in a way that you wouldn’t expect based on what you otherwise know about them—it’s illuminating. Such was my reaction, for instance, when I and collaborators recently completed a data analysis (unpublished but presented at AAA 2015) showing that, once food security was controlled for, a biomarker of chronic stress was “worse” in young children from households with greater material assets in an East African community where I work. I won’t give away the end of the story, which would take too much space anyway, but these “huh?” moments lead us to re-examine what we know about people—re-open those interview transcripts and field notes—and ask “what is the body telling us here?”

 

How would you respond directly to one potential cultural anthropological or social scientific critique of such an integrative “biocultural” approach?

Not going there anymore. I’m no longer investing energy in endless scripted arguments about the purported value or purported dangers of biocultural research as a general class (which are really just a subset of arguments about integrative holism in anthropology, and don’t seem to have changed much since I was a first year graduate student in 1998). Biocultural research isn’t for everyone, nor is it the best approach for every research question, but ideally it complements cultural anthropology nicely, especially in medical anthropology. On the other hand, done poorly, yes indeed it can be dreadfully reductionist and everything else people fear. So my view boils down to this: do it very well, with careful ethnographic contextualization and a thorough understanding of biology… great. Don’t do it at all, great. AAA is a big conference with plenty of room in those cavernous hotels we rent out. I hope we’ll all see each other in some sessions, but if not I’ll certainly give a friendly wave in the hallways.

 

What is one potential caution you’d have for cultural anthropologists or social scientists considering a biocultural approach?

To do biocultural research well requires a high level of sophistication regarding social/cultural anthropology and human biology at the same time. For one thing, this means that teamwork is incredibly valuable… I work almost entirely in collaborative teams now, because I just can’t be good enough at everything. And the research question (along with any measures that are going to be employed while addressing it) should flow from theory. If the theoretical framework doesn’t naturally call for an integrative biocultural approach, that is a red flag. Theory can and should be stretched of course, but it’s important to ask ourselves: will including a biomarker or a biological interpretation really tell us something substantially more than we could learn without it? Will it address a theoretically interesting question in a new and exciting way that moves the field forward? I ask students these questions all the time, and if they don’t have strong answers, I send them back to the drawing board. If they do, then I’m the biggest cheerleader they could want for their integrative approach.

 

What is one piece of research (ideally your own) that points to the benefits of such an integrative approach?

I’d like to point to some work that was done by my colleague Lesley Jo Weaver, on which I am honored to have been a co-author:

Weaver LJ, Worthman CM, DeCaro JA, Madhu SV. 2015. The signs of stress: Embodiments of biosocial stress among type 2 diabetic women in New Delhi, India. Social Science & Medicine 131:122-130.

In brief, Jo found that congruence with gender roles among women with diabetes in India protected against the adverse effects of diabetes on mental health and inflammation, even when biomarkers showed the diabetes to be poorly controlled. Trade-offs among biological, social, and cultural dimensions of well-being that can only be identified within an integrative framework that joins ethnography and biomarkers with clinical outcomes. Good stuff.

 

What are some other references to help cultural anthropologists or social scientists interested in such an approach get started?

DeCaro JA. 2015. What’s biological about biocultural research? (Part 1). Anthropology News 56(3):e1-e2.

DeCaro JA. 2015. What’s biological about biocultural research? (Part 2). Anthropology News 56(6):e1-e2.

 

Jason DeCaro, PhD, Associate Professor of Anthropology at the University of Alabama, is a biocultural medical and psychological anthropologist and human biologist. His research concerns interactions among the social and cultural architecture of everyday life, cognitive processes, and physiologic systems in human development and the production of differential well-being across the lifespan. His primary international research site is Mwanza, Tanzania, where he has conducted research on child care practices, household adversity, caregiver mental health, and young child growth and development. He also is active in the Southeast U.S., where he has investigated emotion regulation and the biological stress response during the transition into grade school. He directs the Developmental Ecology and Human Biology Lab, which supports the analysis of blood and saliva biomarkers related to immune function, stress physiology, metabolism, and nutrition.

 

Bioculturalism” aims to get anthropologists and closely-related others talking seriously, and thinking practically, about how to synergize biological and social scientific approaches to human health and well-being, and to what positive ends. It is edited by Jeffrey G. Snodgrass.

In the Journals, January 2016 by Aaron Seaman

8 février 2016 - 7:53pm

In addition to our regular roundup of journal offerings, the current issue of Medical Anthropology is a special issue, entitled “Diversions of Biomedical Technologies in a Globalized World,” on which we have posted here.

Critical Public Health

Blood and the public body: a study of UK blood donation and research participation

Simon Cohn

This paper draws on interview and ethnographic data to describe donor accounts of blood donation in England, and how this contrasts to their responses when invited to also participate in two associated public health research studies. Donor views about usual blood donation combine the general, if flexible, theme of altruism with powerful notions of the social collective, giving rise to the sense that they are making tangible, physical ties and constructing a social body through the act of donation. However, their accounts of research participation are more open and ambiguous. At the core of this is the sense that they do not know what exactly they are ‘giving’, since the research is ultimately about collecting information, rather than substance. Equally, the donor-participants are not sure who they are giving it to, since they have no sense of the social collective that potentially might benefit from the research. The paper argues that the concept of ‘the population’ in public health is not only a term that is alien and abstract for the blood donors, but increasingly is a post hoc category for large-scale epidemiological studies. As a result, rather than supporting the obvious assumption that individual bodies make up populations, in practice, particular population renderings determine the nature of individual bodies. In so doing, the need to address ideas of ‘the social’, as distinct from ‘the population’, is increasingly unnecessary in much of public health research.

Theories of practice and public health: understanding (un)healthy practices

Stanley Blue, Elizabeth Shove, Chris Carmona, and Michael P. Kelly

Psychological understandings and individualistic theories of human behaviour and behaviour change have dominated both academic research and interventions at the ‘coalface’ of public health. Meanwhile, efforts to understand persistent inequalities in health point to structural factors, but fail to show exactly how these translate into the daily lives (and hence health) of different sectors of the population. In this paper, we suggest that social theories of practice provide an alternative paradigm to both approaches, informing significantly new ways of conceptualising and responding to some of the most pressing contemporary challenges in public health. We introduce and discuss the relevance of such an approach with reference to tobacco smoking, focusing on the life course of smoking as a practice, rather than on the characteristics of individual smokers or on broad social determinants of health. This move forces us to consider the material and symbolic elements of which smoking is comprised, and to follow the ways in which these elements have changed over time. Some of these developments have to do with the relation between smoking and other practices such as drinking alcohol, relaxing and socialising. We suggest that intervening in the future of smoking depends, in part, on understanding the nature of these alliances, and how sets of practices co-evolve. We conclude by reflecting on the implications of taking social practices as the central focus of public health policy, commenting on the benefits of such a paradigmatic turn, and on the challenges that this presents for established methods, policies and programmes.

Health

Gene worlds

Stefan Timmermans and Sara Shostak

Drawing from a critical sociology of knowledge perspective, we situate the production of genetic information within relevant political, financial, and professional contexts. We consider as well the broad range of social conditions that render genetic knowledge salient in clinical settings and for population health. This sociological analysis of genetic knowledge highlights how genetic knowledge flourishes and shapes social environments and how in turn environments select for particular forms of genetic knowledge. We examine the role of the laboratory, regulatory state, and social movements in the production of genetic knowledge and the clinic, family, and population health as critical sites where genetic knowledge becomes actionable.

Health and Place

Home-making after stroke. A qualitative study among Dutch stroke survivors (open access)

Louise Meijering, Christa S. Nanninga, and Ant T. Lettinga

Stroke survivors may suffer from physical limitations as well as cognitive and behavioural difficulties. Many survivors work on their recovery in a rehabilitation clinic with the aim to return to their own home again. Since full recovery is often not feasible, they face the challenge of coming to terms with lasting effects of the stroke and of giving meaning to their home place again.

Based on in-depth interviews with stroke survivors, we discuss the meaning of the home with respect to changed post-stroke identities. Our findings show how, for many participants, a formerly comfortable home becomes a space of struggle. Formerly stable bodily routines become time-consuming and demanding, reciprocal relationships with significant others change, often becoming unbalanced dependence. In conclusion, each stroke survivor faces a different struggle to accommodate a changed self in a house that does not feel like home anymore. These findings imply that stroke rehabilitation services need to address the individual and everyday challenges that stroke survivors and their families face at home, to improve their sense of home and well-being.

Journal of the History of Medicine and Allied Sciences

Animals, Pictures, and Skeletons: Andreas Vesalius’s Reinvention of the Public Anatomy Lesson

Allen Shotwell

In this paper, I examine the procedures used by Andreas Vesalius for conducting public dissections in the early sixteenth century. I point out that in order to overcome the limitations of public anatomical demonstration noted by his predecessors, Vesalius employed several innovative strategies, including the use of animals as dissection subjects, the preparation and display of articulated skeletons, and the use of printed and hand-drawn illustrations. I suggest that the examination of these three strategies for resolving the challenges of public anatomical demonstration helps us to reinterpret Vesalius’s contributions to sixteenth-century anatomy.

Louis Sambon and the Clash of Pellagra Etiologies in Italy and the United States, 1905–14

David Gentilcore

This article explores the extent to which the bacterial concept of disease acted as an obstacle to the understanding of deficiency diseases, by focusing on explorations into the cause of pellagra in the early twentieth century. In 1900, pellagra had been epidemic in Italy for 150 years and was soon to become so in the United States, yet the responses of medical investigators differed substantially. To account for these, the article reconstructs the sharply contrasting reactions to a provocative theory proposed by Louis Sambon. Applying a tropical diseases approach to pellagra, Sambon argued that pellagra had nothing at all to do with maize consumption, as the Italians had long thought, but was caused by the bite of a parasite-carrying insect. Italian pellagrologists, involved in a dogmatic quest for a toxin in maize, and with pellagra rates there on the decline, marginalized the Sambon hypothesis. By contrast, in the United States, with pellagra on the rise, the dominant infectious paradigm put Sambon center stage, his proposed etiology shaping the earliest American investigations. When the deficiency disease concept gained currency in 1913, the relatively closed world of Italian pellagrology was wrong-footed, while the more open-ended U.S. community was better able to follow up the new lead. The article discusses what these shifts and the resulting controversies reveal about the medical contexts. The actor-centered approach, with reaction to Sambon’s intervention as a kind of test-case, is the key to understanding these controversies and why they mattered.

An Asymmetrical Network: National and International Dimensions of the Development of Mexican Physiology

Marcos Cueto

This article examines the history of Mexican physiology during the period 1910–60 when two noted investigators, José J. Izquierdo, first, and Arturo Rosenblueth, second, inscribed their work into an international network of medical research. The network had at its center the laboratory of Walter B. Cannon at Harvard University. The Rockefeller Foundation was its main supporter. Rosenblueth was quite familiar with the network because he worked with Cannon at Harvard for over ten years before returning to Mexico in the early 1940s. Izquierdo and Rosenblueth developed different strategies to face adverse conditions such as insufficient laboratory equipment, inadequate library resources, a small scientific community, and ephemeral political support. Both acquired local influence and international prestige, but the sources of financial and academic power remained in the United States. This case study provides insight into the circulation of scientific ideas and practices in an important Latin American country and suggests that the world’s circulation of science among industrial and developing nations during the mid-twentieth century was intrinsically asymmetric but opened temporary opportunities for talented individuals and groups of researchers.

Medical Aid, Repression, and International Relations: The East German Hospital at Metema

Iris Borowy

Between 1984 and 1988, the German Democratic Republic (GDR) built a hospital in a remote part of Ethiopia, close to the Sudanese border. The project evolved in a complex combination of contexts, including the general foreign policy goals of the GDR, its specific alliance with Ethiopia, the famine of 1984–85, civil war in Ethiopia, and a controversial resettlement program by the government of Mengistu Haile Mariam. Though almost unknown today, it was a high-profile project at the time, which received the personal support both by Erich Honecker in the GDR and Mengistu Haile Mariam in Ethiopia. However, their interest was directed more at the political goals the project was expected to serve than at the hospital itself. Both the preparation and the implementation of the project were extremely difficult and almost failed due to problems of transportation, of red tape, and of security. The operation of the hospital was also not ideal, involving frustrated personnel and less than complete acceptance by the local population. Ironically, for all its practical difficulties, the hospital has outlived both governments and their political goals, surviving as a medical institution.

Social Science & Medicine (two issues, here and here, selected articles below)

“I was on the way to the hospital but delivered in the bush”: Maternal health in Ghana’s Upper West Region in the context of a traditional birth attendants’ ban

Andrea Rishworth, Jenna Dixon, Isaac Luginaah, Paul Mkandawire, and Caesar Tampah Prince

This study examines perceptions and experiences of mothers, traditional birth attendants (TBA), and skilled birth attendants (SBA) regarding Ghana’s recent policy that forbids TBAs from undertaking deliveries and restricts their role to referrals. In the larger context of Ghana’s highly underdeveloped and geographically uneven health care system, this study draws on the political ecology of health framework to explore the ways global safe motherhood policy discourses intersect with local socio-cultural and political environments of Ghana’s Upper West Region (UWR). This study reveals that futile improvements in maternal health and the continued reliance on TBAs illustrate the government’s inability to understand local realities marked by poor access to SBAs or modern health care services. Using focus group discussions (FGDs) (n = 10) and in-depth interviews (IDIs) (n = 48) conducted in Ghana’s UWR, the findings suggest that mothers generally perceive TBAs as better placed to conduct deliveries in rural isolated communities, where in most cases no SBAs are present or easily accessible. The results indicate that by adhering to the World Health Organization’s guidelines, the local government may be imposing detrimental, unintended consequences on maternal and child health in remote rural locations. In addition, the findings suggest that the new policy has resulted in considerable confusion among TBAs, many of whom remain oblivious or have not been officially notified about the new policy. Furthermore, participant accounts suggest that the new policy is seen as contributing to worsening relations and tensions between TBAs and SBAs, a situation that undermines the delivery of maternal health services in the region. The study concludes by suggesting relevant policy recommendations.

Economic constraints on taste formation and the true cost of healthy eating

Caitlin Daniel

This article shows how an interaction between economic constraints and children’s taste preferences shapes low-income families’ food decisions. According to studies of eating behavior, children often refuse unfamiliar foods 8 to 15 times before accepting them. Using 80 interviews and 41 grocery-shopping observations with 73 primary caregivers in the Boston area in 2013–2015, I find that many low-income respondents minimize the risk of food waste by purchasing what their children like—often calorie-dense, nutrient-poor foods. High-income study participants, who have greater resources to withstand the cost of uneaten food, are more likely to repeatedly introduce foods that their children initially refuse. Several conditions moderate the relationship between children’s taste aversion and respondents’ risk aversion, including household-level food preferences, respondents’ conceptions of adult authority, and children’s experiences outside of the home. Low-income participants’ risk aversion may affect children’s taste acquisition and eating habits, with implications for socioeconomic disparities in diet quality. This article proposes that the cost of providing children a healthy diet may include the possible cost of foods that children waste as they acquire new tastes.

“We don’t wear it on our sleeve”: Sickle cell disease and the (in)visibile body in parts

Rebekah M. Ciribassi and Crystal L. Patil

This paper approaches the lived experiences of patients with a genetically inherited chronic disease, sickle cell disease (SCD), through the lens of (in)visibility. SCD has been referred to as an “invisible” disease for a variety of interrelated reasons, including the difficulty of objectively measuring its characteristic symptoms, the lack of popular or specialist attention, and its characterization as a “black” disease. By mobilizing “invisibility” as a way of probing the day-to-day reinforcements of marginality, this article delves into how structural forces are experienced, interpreted, and negotiated by individual actors. To this end, we present ethnographic data collected from November 2009 until November 2013 with SCD patients and healthcare workers in Chicago. These data emphasize that rendering (in)visible is not a totalizing act, but rather meaningfully breaks the body into differentially visible and ideology-laden parts. More broadly, this indicates the need to rigorously question sources and effects of authority in biomedicine.

Migrant maternity in an era of superdiversity: New migrants’ access to, and experience of, antenatal care in the West Midlands, UK

Jenny Phillimore

Rapid increase in the scale, speed and spread of immigration over the past two decades has led to an increase in complexity of populations termed superdiversity. Concerns have been expressed about impacts of the pressure that superdiversity is said to place upon maternity services. High migrant fertility and infant and maternal mortality rates have long been observed in diverse areas with inadequate antenatal monitoring seen as a major causal factor in migrants’ maternity outcomes. Using qualitative data from a study of new migrants’ access to maternity services in the UK’s West Midlands region, with some of the highest infant and maternal mortality rates in Europe, this paper looks at the reasons migrants’ access to antenatal care is poor. The paper finds that contrary to earlier studies which pointed to a lack of priority placed on such care by migrants, a combination of structural, legal and institutional barriers prevent migrant women accessing effective antenatal care.

“Heroes’ invisible wounds of war:” constructions of posttraumatic stress disorder in the text of US federal legislation

Jonathan Purtle

Public policies contribute to the social construction of mental health problems. In this study, I use social constructivist theories of policy design and the methodology of ethnographic content analysis to qualitatively explore how posttraumatic stress disorder (PTSD) has been constructed as a problem in US federal legislation. I analyzed the text of 166 bills introduced between 1989 and 2009 and found that PTSD has been constructed as a problem unique to combat exposures and military populations. These constructions were produced through combat-related language and imagery (e.g., wounds, war, heroism), narratives describing PTSD as a military-specific phenomenon, and reinforced by the absence of PTSD in trauma-focused legislation targeting civilians. These constructions do not reflect the epidemiology of PTSD—the vast majority of people who develop the disorder have not experienced combat and many non-combat traumas (e.g., sexual assault) carry higher PTSD risk—and might constrain public and political discourse about the disorder and reify sociocultural barriers to the access of mental health services.

Sociology of Health & Illness

‘Rule your condition, don’t let it rule you’: young adults’ sense of mastery in their accounts of growing up with a chronic illness (open access)

Janet Heaton, Ulla Räisänen, and Maria Salinas

Poor control of chronic illness is often attributed to patients’ non-adherence to medical advice and treatment. Policy and practice has traditionally focused on improving adherence, assuming that the more patients comply, the better their control and outcomes will be. Drawing on complexity theory, we question this logic in a secondary analysis of qualitative data from studies of young adults’ experiences of growing up with a chronic illness. Examining their sense of mastery of their condition, we found they valued both being in medical control of their condition and having autonomy but had different ideas about how to achieve these goals. While some young adults mostly shared the traditional medical view that achieving good control was the key to retaining their autonomy, others saw control and autonomy as independent, non-linear and potentially conflicting goals. The latter endeavoured to achieve both goals by striking a balance, variously adopting strategies of engagement with and resistance to their regime in the changing social contexts of their lives. We suggest that policy and practice needs to do more to promote autonomy and adaptive capacity, rather than simply maximising adherence and control, recognising the mundane complexity of living with and managing a chronic illness.

The emergence of trust in clinics of alternative medicine

Inge Kryger Pedersen, Vibeke Holm Hansen, and Kristina Grünenberg

Demands for alternative medicine have increased since the 1970s in nations in which western scientific evidence has become the basis for health care. This paradox has been the impetus to examine how trust emerges in clinics of alternative medicine. Alternative practitioners are self-regulated and the clients pay out of their own pockets to attend non-authorised treatments with very limited scientific evidence of their effects. Trust is a key issue in this context. However, only a few studies have dealt with the ways in which alternative practitioners win their clients’ trust. Drawing on three qualitative studies and informing the empirical findings with a sociological concept of trust, this article provides new empirical insights on how trust emerges in Danish clinics of acupuncture, reflexology and homeopathy. The analysis demonstrates how trust is situational and emerges through both clients’ susceptibility and practitioners’ individual skill development and strategies, as well as from objects, place and space. Trust is developed on relational and bodily as well as material grounds. It is argued that the dynamics and elements of trust identified do not only minimalise uncertainties but sometimes convert these uncertainties into productive new ways for clients to address their ailments, life circumstances and perspectives.

On social plasticity: the transformative power of pharmaceuticals on health, nature and identity (open access)

Johanne Collin

This article proposes a theoretical framework on the role of pharmaceuticals in transforming perspectives and shaping contemporary subjectivities. It outlines the significant role drugs play in three fundamental processes of social transformation in Western societies: medicalisation, molecularisation and biosocialisation. Indeed, drugs can be envisaged as major devices of a pharmaceutical regime, which is more akin to the notion of dispositif, as used by Foucault, than to the sole result of high-level scheming by powerful economic interests, a notion which informs a significant share of the literature. Medications serve as a key vector of the transformation of perspective (or gaze) that characterises medicalisation, molecularisation and biosocialisation, by shifting our view on health, nature and identity from a categorical to a dimensional framework. Hence, central to this thesis is that the same underlying mechanism is at work. Indeed, in all three processes there is an evolving polarity between two antinomic categories, the positions of which are constantly being redefined by the various uses of drugs. Due to their concreteness, the fluidity of their use and the plasticity of the identities they authorise, drugs colonise all areas of contemporary social experiences, far beyond the medical sphere.

Navigating the field of temporally framed care in the Danish home care sector

Pernille Tufte and Hanne Marlene Dahl

The organisational and temporal framing of elderly care in Europe has changed in the wake of new public management reforms and standardised care services, the strict measurement of time and work schedules have become central aspects of care work. The article investigates the crafting of care in this framing: how care workers approach the services specified in their rotas and navigate between needs, demands and opportunities in the daily performance of duties. Applying feminist theory on time and anthropological theory on social navigation, it examines the practice of home care work in two Danish municipalities. Data are derived predominantly from participant observation. The article identifies two overarching temporal dilemmas in different home care situations: one where process time prevails over clock time and another where the care workers balance the two. Focusing on how care workers respond to these dilemmas in practice, the article identifies various navigation tactics, including leaving time outside, individualised routinisation, working on different paths simultaneously and postponing tasks. By assessing care workers’ performance in the temporal framing of work and focusing on care workers’ mediation between different time logics, this study provides an in-depth perspective on the broader feminist literature on the dilemmas of care.

Felicity Callard and Des Fitzgerald’s “Rethinking Interdisciplinarity Across the Social and Neurosciences” by Jörg Niewöhner

4 février 2016 - 10:15pm

Rethinking Interdisciplinarity Across the Social and Neurosciences

by Felicity Callard and Des Fitzgerald

Palgrave (Pivot series), 2015, 160 pages

The first thing you notice when picking up a copy of Rethinking Interdisciplinarity Across the Social and Neurosciences is the almost waxy feel of the cover. I do not have another volume from Palgrave’s Pivot series to hand as I write, so I do not know whether this is particular to this book or not. In any case, as an environmental scientist and anthropologist, the haptics of “rethinking interdisciplinarity” immediately take me back to field notebooks: handy size so it fits into pockets, sturdy cover so you can stuff it into a backpack or box of equipment, and, most importantly of all, water-repellent so you may take notes out in the rain.

And a field notebook is what geographer Felicity Callard and sociologist Des Fitzgerald have written in at least two senses of the word. First, it is a report back from the field. The two have spent many years in the ‘interdisciplinary’ field of social cognitive neuroscience and they share with us their impressions. Second, it is a field notebook that you may take to your own interdisciplinary field, so in moments when you have become thoroughly disoriented, disheartened and generally fed up with academic knowledge production, you may take some solace from this little helper. While the book does contain some ready-to-use bullets for the hurried reader in the form of short notes and queries sections, my distinct impression is that solace will not be given to those trying to use the book like a conversion table from imperial to metric. This is where the field notebook metaphor ends. The questions, problems and trajectories arising from the practices of ‘experimental entanglement’ are far too varied, ambivalent and situated to be reduced to a best practice guide to interdisciplinarity. Callard and Fitzgerald are very much aware of that and so the small volume—what in German some call a “Zwischenmonographie”, i.e. an in-between or, ironically, an inter-monograph—is more of a starting than an end point.

The book is beautifully written. The vignettes from the field are vivid and offer rich insights into the ups and downs of co-laborative fieldwork in the neurosciences. The analyses are thought-provoking, always (self-)reflexive, committed but never trivial, and always with a great sense of irony always prepared to acknowledge the comical if not hilarity in some of the occurrences without ever losing track of the serious matters of concern or respect for their co-laborators.

Callard and Fitzgerald report on their own work within different formats of interdisciplinary neuroscientific research. They limit the scope to what is perhaps best described as the emerging and rapidly changing field of social cognitive neuroscience or cognitive social neuroscience or, in rare moments, neurosocial cognition or cognitive science. Yet their case is certainly one that holds true for most interdisciplinary endeavours between interpretative social sciences, humanities and life sciences.

The book sets out to deliver an honest account of ‘what goes into and what goes on in’ experimental entanglements within the neurosciences and it is successful in delivering that. It spells out many of the quotidian practices of co-labouring: how to start and get the money, how to find your own position, how to conduct yourself and experiments with whom and why and how to come clean. It is not interested in defining, systematising or even canonising forms of interdisciplinarity. And it does not engage in extensive genealogical or conceptual work. Yet neither is it simply telling tales. It offers reflections, conceptual trajectories and it contextualises impressions from the field. I found this very good to think with in many ways.

The book is structured into a more pragmatic first and a more conceptual second half, the authors tell us. Whether one shares this impression or not, the book is very accessible through abstracts and summaries. Seven chapters deal with different aspects of experimental entanglements discussing modes of co-labouring, particular topics and experiences (in particular: ‘the social’ [Fitzgerald] and ‘the resting state’ [Callard] in the neurosciences), and overarching topics of power and emotions.

Rather than going through the chapters individually and repeating what Callard and Fitzgerald have already done so well, I would like to focus on a few select points that I found particularly enticing.

The notion of ‘experimental entanglement’ works well in that it emphasises how a group of people is called together in an often carefully choreographed socio-technical environment—and how that choreography becomes mangled in practice in surprisingly productive or extremely boring ways. Callard and Fitzgerald emphasise the importance of social interaction, of emotion, of serendipity and of staying with uncomfortableness rather than immediately trying to resolve it into an epistemic or even intellectual gain. Yet they never dismiss the importance of good ideas, of disciplinary training, of hard work and of thorough analysis. What they do dismiss without further ado is the myth of science as the orderly and rational production of objective knowledge and with it forms of science communication and bioethics built on that myth. This is refreshing. The messier understanding of ‘laboratory’ that is implied in experimental entanglement is helpful. It draws heavily on Haraway and others at the intersection of science and technology studies and feminist critique and understands lab practices as the material-discursive production, reflection and diffraction of phenomena. This draws heavily on constructivism, but it acknowledges that the world kicks back (Barad). In this sense, experimental entanglement loses all its associations with the ‘inter-’ of separate disciplinary entities, knowledge as an a-cultural object and science as rational practice. Why this is not reflected in the title of the book is not entirely clear. It could have said on the tin exactly what it does, but perhaps marketing got in the way of that.

Callard and Fitzgerald suggest turning the process of experimental entanglement into an object of research itself. To my mind, this is one of the key points of the book. Importantly, this is not about self-reflexivity for the sake of it or for purposes of (re)claiming an identity and rights to go with it. It is not territorial in any simple sense. It is about dealing with being entangled and coming out of it producing knowledge that others may continue to invent around, rather than reproducing knowledge like itself. The point is well made in the book. Yet the authors also run into difficult waters as the proof of the pudding, as they say, is in the eating, i.e. in demonstrating how becoming entangled experimentally produces interesting knowledge. Callard and Fitzgerald try to stay true to the conceptual, empirical and methodical gains derived from their work, but the strong focus on ‘interdisciplinarity’ structurally means that the reader is referred to published articles for some of the hard conceptual discussions to be had in the social neurosciences. As someone who knows the field reasonably well, I do not mind too much. Yet I can see people from other fields feeling a little left out from the details of the conceptual gains. This is, of course, a strategic decision. I am just commenting that separating matter from form has its consequences. An option may have been to include ‘co-curating concepts’ (Rabinow 2008) as a fourth mode of entanglement besides co-authoring, co-experimentation and co-organization. While this is implicitly contained in the three practices discussed, I feel it might have deserved more attention.

Strongly related to this discussion of curating concepts, Callard and Fitzgerald raise questions about the practice of being reflexive. The automated diary room à la Big Brother to track and reflect process and progress is in my mind a starting point for a much broader discussion about different modes of ‘reflexing’ as a collective, epistemic, non-teleological and temporary form of research (cf. Boyer 2015, Niewöhner forthcoming). Much of the interpretative tradition in the social and cultural sciences has been set on intellectual practice as centred on the individual (genius). We can learn from science and technology studies and indeed from the neurosciences how scientific practice and indeed reflexivity can gain from acknowledging and practicing knowledge as a social and socio-technical practice. To what extent this then is experimental entanglement or simply good ‘normal science’ is a discussion that Callard and Fitzgerald touch on and that we should continue.

Attending to the spaces and rhythms of experimental entanglement is another carefully crafted point in the book and again: it is not important that one shares Callard and Fitzgerald’s categories of matrices, topologies, incorporations and laboratories, though a lot is to be said for them. It is the twist in thinking that makes entanglement an object of topological inquiry that is important. How do I learn to be affected within particular physical spaces and choreographies? And almost in passing, Callard and Fitzgerald quote Paul Harrison to remind us that we must not forget to attend to the non-related and perhaps non-relatable in a scientific world full of interdisciplinary connections. And this is not (only) the subaltern or marginalised.

A closing remark about power and critique: I believe that Callard and Fitzgerald are right to alert us to the naiveties with respect to symmetries in co-laboration, the wonders of frank and open language, and understandings of social exchange and scientific practice in some kind of a-social vacuum. I myself certainly felt found out remembering the many times that I have portrayed entanglements as harmonious choreographies just to counteract what I perceived as the dominant deconstructivist atmosphere in the room. It is obvious that powerful asymmetries exist between disciplines, between abilities to shape discourses, between resources, etc. These are (also) structural and they need to be kept transparent as constant contributors to knowledge production. Callard and Fitzgerald are right in demanding that a Weberian and Foucauldian tradition be kept alive within entanglements. Their response to the often-voiced concern that experimental entanglements evacuate critical spaces, however, I find unnecessarily defensive. The particular poverty of dialectics from a critical distance has been analysed by many (e.g. Latour). So I fully understand if people are not interested in becoming entangled. Yet anything but acknowledging these two different modes of critique as complementary or simply doing different things seems territorial behaviour in its least interesting form. Perhaps I have given this too much space here again—the book deals with it, but not in extenso, so perhaps best we leave it at that and get on with it.

On a more interesting note, Callard and Fitzgerald suggest subjugation as a positive and perhaps playful form of dealing with inevitable (power) asymmetries that might come after reciprocity. Not to put too fine a point on it, but it seems that what they are after may well be contained within a broader understanding of reciprocity. After reciprocity—read as ‘After Nature’ by Marilyn Strathern (1992) —thus may carry the dual meaning of entanglement moving beyond reciprocity understood in the sense of a mechanistic, symmetrical and direct quid pro quo. Yet taking a broader view of how complex practices of (gift) exchange always operate on and in social order, one may note that subjugation is experimental entanglement modelled after reciprocity understood in Marshal Sahlins’ way of generalized reciprocity, i.e. a true gift that carries a vagueness about the obligation to reciprocate (Sahlins 1972). This might also open up another notion of power after Foucault that traces questions of care and legitimacy through ecologies of practice. This, however, is certainly more than a field notebook can take.

 

References

Boyer, D. (2015). Reflexivity Reloaded. From Anthropology of Intellectuals to Critique of Method to Studying Sideways. Anthropology Now and Next, Berghahn Books: 91-110.

Latour, B. (2004). “Why Has Critique Run out of Steam? From Matters of Fact to Matters of Concern.” Critical Inquiry 30(2): 225-248.

Niewöhner, J. (forthcoming in 2016). Co-laborative anthropology: crafting reflexivities experimentally. Analysis and Interpretation. J. Jouhki and T. Steel. Helsinki, Ethnos.

Rabinow, P., G. E. Marcus, J. D. Faubion and T. Rees, Eds. (2008). Designs for an anthropology of the contemporary. Durham & London, Duke University Press.

Sahlins, M. D. (1972). Stone age economics. Chicago, Aldine-Atherton.

Strathern, M. (1992). After Nature: English Kinship in the Late-twentieth Century. Cambridge, Cambridge University Press.

 

Jörg Niewöhner is associate professor of urban anthropology at the Institute of European Ethnology, Humboldt-Universität zu Berlin. He is a member of the Laboratory: Social Anthropology of Science & Technology as well as deputy director of the Integrative Research Institute THESys (Transformation of Human-Environment Systems). His research has entangled him in molecular biology (epigenetics), the social neurosciences and psychiatry, among other fields.

Diversions of Biomedical Technologies in a Globalized World — A special issue of Medical Anthropology by Aaron Seaman

3 février 2016 - 6:00pm

The current issue of Medical Anthropology is a special issue, entitled “Diversions of Biomedical Technologies in a Globalized World.” As Claire Beaudevin & Laurent Pordié write in their introduction, “Diversion and Globalization in Biomedical Technologies,” the issue’s seven articles confront a series of questions about the drift, detours, uptake, translation, and off-shoots of biomedical technologies:

How can we analyze the contrast between the original use of a biomedical technology and its new, diverted orientation? Can we ‘measure’ the amplitude of diversions in the light of what local biopolitics consider to be a ‘normal’ use? What is the content of the referential norm, the benchmark: is it made of techniques, morality, experience, explicit regulations? Who decreed it? And thus, who is challenged by the escape from this referential, and why? Is there a difference between diversions that go beyond the scope of biomedicine and those that remain within biomedicine? Are diversions always contesting normative biomedical power and setting up new moral orders? Are they sometimes foreshadowing future legitimate uses?

 

Alignments? X-ray Diversions, Haptics, Credibility—With a ‘Bone-Setting’ Clinic in Hyderabad City

Guy Attewell

In this article, I engage with the diversions of technologies conventionally used for diagnostic scanning among practitioners who perform fracture-reduction and related manual interventions around bodily pain, ostensibly outside the mainstream orthopedic sector, in the city of Hyderabad, south central India. I attend to the performative dimensions of a technology-practice assemblage, and show how enactments of fracture reduction as viable and credible, targeted at establishment orthopedic surgeons, have been enabled through a distributive agency, afforded by scanning technologies. The use of X-rays and other medical scanning technologies by nonbiomedical practitioners have not displaced haptic and other technics of embodied knowledge, but they have been mobilized in order to create wider recognition of the practitioners’ skills. This is a process in which a new configuration of medical practice is constituted.

The Detour of an Obstetric Technology: Active Management of Labor Across Cultures

Irene Maffi

Active management of labor (AML) is an obstetric technology developed in Ireland in the 1970s to accelerate labor in nulliparous women. This technology achieved rapid success in Great Britain and in English-speaking countries outside America, which adopted it before many other states around the world. In this article, I explore AML’s technical and social characteristics when it was first designed, and then examine its local inflections in a Jordanian and a Swiss maternity hospital to shed light on the ways its transnational circulation modifies its script. I argue that its application is shaped by local material constraints and specific sociocultural configurations, gender regimes, and hospital cultures. Finally, I make a comparative analysis of AML practices in these two settings and in the foundational textbook to disentangle the technical and sociocultural components modeling its local applications.

Gendering the Gift of Life: Family Politics and Kidney Donation in Egypt and Mexico

Megan Crowley-Matoka and Sherine F. Hamdy

In this article, we demonstrate how living kidney donation is a particularly gendered experience. We draw on anthropologists’ contributions to understanding the globalization of reproductive technologies to argue that kidney donation similarly endangers and preserves fertility, thereby unsettling and reifying gendered familial labor. Based on fieldwork in two ethnographic sites—Egypt and Mexico—we examine how kidney donation is figured as a form of social reproduction. In both settings, kidney recipients rely almost exclusively on organs from living donors. We focus on how particular gender ideologies—as evident, for example, in the trope of the “self-sacrificing mother”—can serve as a cultural technology to generate donations in an otherwise organ-scarce medical setting. Alternatively, transplantation can disrupt gender norms and reproductive viability. In demonstrating the pervasiveness of gendered tropes in the realm of transplantation, we unsettle assumptions about the “family” as the locus of pure, altruistic donation.

Wayward Relations: Novel Searches of the Donor-Conceived for Genetic Kinship

Maren Klotz

Searching and finding supposedly anonymous sperm donors or half-siblings by diverting direct-to-consumer genetic testing is a novel phenomenon. I refer to such new forms of kinship as ‘wayward relations,’ because they are often officially unintended and do not correspond to established kinship roles. Drawing on data mostly from the United Kingdom, Germany and the United States, I argue that wayward relations are a highly contemporary means of asserting agency in a technological world characterized by tensions over knowledge acquisition. I make the case that such relations reaffirm the genetic grounding of kinship, but do not displace other ways of relating—they are complementary not colonizing. Wayward relations challenge the gate-keeper status of fertility clinics and regulators over genetic knowledge and classical notions of privacy.

Translating Population Difference: The Use and Re-Use of Genetic Ancestry in Brazilian Cancer Genetics

Sahra Gibbon

In the past ten years, there has been an expansion of scientific interest in population genetics linked to both understanding histories of human migration and the way that population difference and diversity may account for and/or be implicated in health and disease. In this article, I examine how particular aspects of a globalizing research agenda related to population differences and genetic ancestry are taken up in locally variant ways in the nascent field of Brazilian cancer genetics. Drawing on a broad range of ethnographic data from clinical and nonclinical contexts in the south of Brazil, I examine the ambiguities that attention to genetic ancestry generates, so revealing the disjunctured and diverse ways a global research agenda increasingly orientated to questions of population difference and genetic ancestry is being used and reused.

Innovations ‘Out of Place’: Controversies Over IVF Beginnings in India Between 1978 and 2005

Sandra Bärnreuther

In 1978, the year the first in vitro fertilization (IVF) baby was born in the United Kingdom, a research team in Kolkata reported that it too had successfully produced an IVF baby in India. However, the claim was dismissed at the time, because the experiment was conducted outside authorized institutions and recognized centers of innovation—in short, because it was an innovation ‘out of place.’ Tracing controversies over the case between 1978 and 2005, I show the importance of space or place in processes of knowledge production and recognition. Further, I explain the initial repudiation and subsequent partial recognition of the claim through shifts in the landscape of legitimate spaces of innovation. By discussing this specific case of the production of science and technology in the Global South, I challenge conventional narratives of diffusion that are prevalent in studies on the worldwide proliferation of reproductive technologies.

Neuromodulation Technologies and the Regulation of Forms of Life: Exploring, Treating, Enhancing

Baptiste Moutaud

Deep brain stimulation (DBS) is one of the most innovative treatments for a range of neurological and psychiatric conditions. As the practice spreads worldwide, this invasive neurosurgical technology has become the subject of major social, scientific, and ethical concerns about its regulation. In this article, I describe its implementation in a French neuroscience ward and the different forms of practice that structure and promote the development and circulation of this neuromodulation technology. I explore how alternative experimental uses of DBS and deviations from its original therapeutic objectives both interfere with and promote its dissemination. At first, it appeared that neuroscientists could use DBS as a powerful tool to create reproducible experimental human models of emotional or behavioral symptoms so as to explore the functions of the human brain in vivo. In parallel, implanted patients influenced the care program by viewing DBS as a potential technology of self-enhancement for a wide range of personal situations. These alternative uses of DBS have challenged its modes of regulation and standardization and have raised new medical, scientific, and moral controversies. These concern not only ethical and methodological norms of medical and scientific practices but also the anthropological tensions raised by the forms of life that are emerging from neuroscience and experimental practices.

From fish lives to fish law: learning to see Indigenous legal orders in Canada by Zoe Todd

1 février 2016 - 7:18pm

“The necessity of respecting game is still widely acknowledged by Inuit. The awareness, that the continuity of society depends on the maintenance of correct relationships with animals and the land, is still very strong.” (Aupilaarjuk et al. 1999: 2)

In 2012, I spent eight months living and working in the Inuvialuit hamlet of Paulatuuq, which is situated on the coast of the Beaufort Sea in the Inuvialuit Settlement Region, in Canada’s Northwest Territories. I was interested in people’s relationships to fish, and how fishing relationships were being asserted within the community in the face of cumulative colonial and environmental impacts, including looming mining interests, affecting the region. My first two degrees are in Biology and Rural Sociology and when I started ethnographic work in Paulatuuq, I still saw the relationships between humans and their environments with colonial eyes: fish were food, fish were specimens, fish were inputs in surveys and dry policy documents.

Ice-fishing in Paulatuuq at Dennis Lake, June 2012

I knew better than to see fish this way. I grew up fishing with my parents and sisters on Baptiste Lake in north-central Alberta through the 1980s and 1990s. I swam with the fish in that green prairie kettle lake every summer throughout my entire childhood. I dreamt about fish and their fish-lives beneath the inscrutable, rippled lake-surface. I squealed with joy at the silver flash of minnows in the shallows on lazy July days and, for many dinners through my adolescence, we ate fish my step-dad caught in the Red Deer River, Pepper’s Lake, and on his own re-watered wetland in central Alberta. But even with fish woven so intimately into every part of my life, it had never occurred to me that fish were also citizens, interlocutors, story-tellers, and beings to whom I owed reciprocal legal-governance and social duties. These lessons had been deeply erased from dominant (non-Indigenous) public discourse in Alberta and I had not recognized the implicit ways fish were woven into my own life as more than food. This is the thing about colonization: it tries to erase the relationships and reciprocal duties we share across boundaries, across stories, across species, across space, and it inserts new logics, new principles, and new ideologies in their place.

Anishinaabe legal scholar John Borrows (Pohlmann 2014) argues that Canada is enlivened by legal pluralities. By this, he means that Canada is not governed only by laws derived from French and English legal systems, but that the country is deeply shaped by the legal orders of First Peoples in North America whose territories were dispossessed by the colonizers. But through colonial sleight of hand, the Canadian State has tried to get us to forget that fish, too, are citizens within the territories we inhabit, that we share treaties and governance relationships with fish, plants, and other more-than-human agents.[1] Colonialism has worked tirelessly to erase the Indigenous laws that govern Indigenous territories across Canada. This erasure obscures Indigenous legal orders and thinking in which humans, animals, water and land are integrated into nuanced and duty-full relationships with one another[2], replacing these legal-governance realities with ones that draw solely on anthropocentric French and English legal paradigms.

Humpback whitefish (illustration by Zoe Todd, 2015)

Part of the struggle in identifying Indigenous law owes to their implicit nature, as Indigenous legal scholar Val Napoleon (2007:8) points out:

[M]any Indigenous peoples are not aware of the law they know—they just take it for granted and act on their legal obligations without talking about it. This is in contrast to explicit law, in which everything is explained and talked about and written down. Sometimes Indigenous peoples think that their laws have to look like western laws and so they try to describe them in western terms.

It took me nearly my entire lifetime as a Red River Métis (otipemisiw, Michif) woman to learn to see the implicit Indigenous laws operating all around me throughout Indigenous territories in Canada. It was the experience of doing ethnography in Paulatuuq that taught me, finally, of the urgency and necessity of honouring Indigenous laws and the beautiful ways that they incorporate the more-than-human into legal-governance paradigms and discourses. In my work, I went looking for human responses to colonial relations, but quickly learned that resistance to colonial dispossession is articulated and mobilized not only through human means, but also through the bones, bodies, and movement of fish.

Lake trout (illustration by Zoe Todd, 2015)

 

In addition to focusing on the relation between fish, people, law, and colonialism my work also dwells on the complexities and paradoxes of doing ethnographic work as a Métis woman within the homeland of another Indigenous people.[3] The greatest challenge I face in ‘doing ethnography’ is in becoming familiar and contending with tensions between, first, my obligations to Euro-Western academic research structures, paradigms, and ideals and, second, those duties I am bound to across, within, and between Indigenous legal orders and philosophies in Canada. In this tension lies the underlying reality that before I am a researcher or philosopher or academic, I am a citizen living within a complex, if at times unspoken, plurality of legal-governance systems—and inter-related histories, philosophies, stories, and ideas—operating in Canada. I draw my understanding of simultaneous interrelatedness and difference across settler-colonial and Indigenous thinking, stories, and laws from the work of Papaschase Cree Scholar Dwayne Donald (2009:6), who outlines a principle of ‘ethical relationality’ as:

An ecological understanding of human relationality that does not deny difference, but rather seeks to more deeply understand how our different histories and experiences position us in relation to each other. This form of relationality is ethical because it does not overlook or invisibilize the particular historical, cultural, and social contexts from which a particular person understands and experiences living in the world. It puts these considerations at the forefront of engagements across frontiers of difference.

Ethical relationality encourages me to contend with my research relationships differently than the Canadian and British academies where I was trained. The University, as a structure and a system, is built upon and informed by the laws and ethics of Euro-Western thinking and governance; it also operates to reify laws that are used to dispossess Indigenous peoples. However, to work in Indigenous territories and with Indigenous peoples’ cosmologies in North America necessarily brings me into legal-governance and ethical relations across the plurality of laws that enliven these dynamic territories.

Fishing trip to Billy Lake, Paulatuuq, July 2012

Donald’s work invites us to attend to the space between and across a) the Euro-Western legal-ethical paradigms that build and maintain the academy-as-fort (or colonial outpost)[4], fixing it within imaginaries[5] of land as property and data as financial/intellectual transaction, and b) Indigenous legal orders and philosophies which enmesh us in living and ongoing relationships to one another, to land, to the more-than-human, and which fundamentally challenge the authority of Euro-Western academies which operate within unceded, unsurrendered and sentient lands and Indigenous territories in North America. It also brings our anthropological attention to the simultaneous and often contradictory negotiations that Indigenous peoples make across both sameness and difference in contending with the colonial Nation State in Canada.

In Paulatuuq, interlocutors Andy Thrasher, Millie Thrasher, Annie Illasiak and Edward and Mabel Ruben taught me that fish are more than food. Fish are simultaneously many things: food; sentient beings with whom humans share territory; specimens of study and regulation in wildlife co-management regimes; citizens and agents in legal-governance relationships, examples of what Ann Fienup-Riordan (2000:57) calls ‘active sites of engagement’. Across these sites, human-fish relations inform and capture memory, stories, teaching, and philosophies. I also learned that human-fish relations can act as ‘micro-sites’ across which fish and people, together, actively resist and shape colonial logics and processes within Inuvialuit territories. Just as humans can shape and experience the colonial encounter, so too can animals. Human-fish relations in Paulatuuq therefore present a plurality of meanings, strategies and principles for those enmeshed within them. As a result, fish pluralities in Paulatuuq deeply inform a vibrant and creative set of local strategies through which some community members have refracted colonial State formations of human-animal and human-environmental relations (Todd 2014).

Annie Illasiak, an elder I worked with in Paulautuq, repeated the same lesson to me several times while I was working and living in the community. That teaching was ‘you never go hungry in the land if you have fish’[6]. At first, I thought she meant this teaching as a purely utilitarian subsistence or survival lesson: even if every other source of food is unavailable, if you have fish, you won’t starve. It wasn’t until after I had moved back to Scotland to write that I began to untangle my utilitarian understanding of the statement and began to see the fish pluralities she was referencing. This was not a lesson solely about food, but about the many manifestations and articulations of human-fish relations in Paulatuuq: as long as you have fish, you have stories, memories and teachings about how to relate thoughtfully with the world and its constituents. As long as you have fish (and other animals), you are nourished not only physically, but in a plurality of emotional, spiritual and intellectual ways as well. A world without fish is not only a hungry one, but one intellectually and socially bereft.

People I worked with in Paulatuuq demonstrated to me how they employ what Inuvialuit political leader and thinker Rosemarie Kuptana (2014) calls the Inuit practice of ‘principled pragmatism’. Working across both sameness and difference, Paulatuuq people employ strategies that incorporate elements of the Canadian State’s wildlife scientific co-management system and Inuvialuit legal orders and thinking to assert the well-being of humans and fish alike. Employing this dynamic strategy, Paulatuuqmiut successfully shut down a government-mandated commercial fishery in a vital local watershed in the 1980s (Todd 2014). The lives and stories of fish and people are tightly woven together in complex ways, and these relationships inform not just what might be glossed as cultural, religious, ontological or ecological concerns but also shape concrete, gritty, practical, fleshy lived legal-political (decolonial) realities as well.

Arctic Char (illustration by Zoe Todd, 2015)

By working outwards from particular and specific fish stories and memories that interlocutors shared with me in Paulatuuq, I was brought into a rich world of Indigenous legal-governance operating in dynamic ways across Canada. I was taught to see fish as non-human persons who consciously and actively respond to the human and non-human worlds around them. I was taught to understand land, climate/atmospheres, water and animals as sentient and knowing and to position my engagement with these agents ethically, reciprocally, and accountably. My presence as someone entangled in settler-colonial research systems was also made explicit, and forced me to question and engage with the uncomfortable question of what my role is (if any) as a southerner working in arctic Canada. At the end of the day, I realized that I cannot work in the northern research industry while research in unceded Indigenous lands remains controlled, in large part, by southern non-Indigenous research institutions which operate under settler-colonial legal constructs (Moffitt et al. 2015). For now, I work in the territories where I grew up. I make this choice so that I can renew and tend to the relationships to fish, people, lands and Indigenous laws that I was raised with but unable to ‘see’.

Through my ethnographic experience, I was taught by Inuvialuit interlocutors to train my eyes, ears, heart and mind to honour implicit Indigenous laws long-obscured by the dominance of British and French laws employed by the Canadian State. I was also sensitized to the differences between laws, stories and relationships in Paulatuuq and those Métis teachings I grew up with on the green waters of Baptiste Lake in Alberta. Working within the frameworks of Indigenous legal orders re-situates my duties from those that prioritise the academic-research industrial complex to a nuanced and careful negotiation of duties within, across and between Indigenous laws that centre and tend to land, water, fish, humans, and climate. For me, ethnography and anthropology remain fraught structures, processes and spaces. However, by tending to my duties to Inuit thinkers, and the philosophies they articulate (and intellectual labour they perform), and in tending to my legal-ethical duties as an Indigenous feminist working within the ongoing settler-colonial realities that shape Canada, I can slowly but insistently untangle some of the violences the academy reproduces in its iterations and interpretations of Indigenous philosophy.[7]

 

Notes

[1] Vanessa Watts (2013:23) argues that: “habitats and ecosystems are better understood as societies from an Indigenous point of view; meaning that they have ethical structures, inter-species treaties and agreements, and further their ability to interpret, understand and implement. Non-human beings are active members of society. Not only are they active, they also directly influence how humans organize themselves into that society.”

[2] There is a rich literature on Indigenous legal orders and Indigenous cosmologies to refer to here. I suggest reading the work of Mario Aupilarkuuk et al. (1999); John Borrows, Sarah Hunt, Kahente Horn-Miller, Sylvia McAdam, Val Napoleon, Tracey Lindberg, Jim Tully, Sharon Venne, Vanessa Watts and others.

[3] This is a tension that Indigenous scholars Olga Ulturgasheva and Stacy Rasmus (2014) interrogate in their ethnographic work across and between territories in Alaska and Siberia.

[4] Donald (2009: 4) interrogates the ‘frontier logics’ that still operate within Canada to separate Indigenous and non-Indigenous pedagogies and stories, and he employs the Fort as metaphor to illustrate the active way the education system works to keep Indigenous stories and philosophies outside the classroom.

[5] In a recent talk in Ottawa, Canada in October 2015, Tracey Lindberg called these the ‘colonial legal fictions’ that the Canadian State relies upon to dispossess Indigenous peoples from living, thinking, and sentient lands.

[6] I explore this in depth in my doctoral work and in a recent publication (Todd 2014).

[7] For further reading on the negotiations of Indigenous philosophies within and outside of Euro-Western academic structures in North America, please review the works of John Borrows, Dwayne Donald, Sarah Hunt, Tracey Lindberg, Cutcha Risling Baldy, Erica Violet Lee, Val Napoleon, Audra Simpson, Kim TallBear, Eve Tuck, Vanessa Watts, Kyle Powys Whyte and other contemporary Indigenous thinkers working on these issues.

 

Works Cited

Aupilaarjuk, Mariano, Tulimaaq, Marie, Joamie, Akisu, Imaruittuq, Emile, Nutaraaluk, Lucassie. (1999). Interviewing Inuit Elders Volume 2: Perspectives on Traditional Law. Oosten, Jarich, Laugrand, Frederic, and Wim Rasing, Editors. Accessed December 29, 2015:   http://tradition-orale.ca/english/pdf/Perspectives-On-Traditional-Law-E.pdf.

Donald, Dwayne. (2009). Forts, Curriculum, and Indigenous Metissage: Imagining Decolonization of Aboriginal-Canadian Relations in Educational Contexts. First Nations Perspectives 2(1): 1-24.

Fienup-Riordan. Ann. (2000). An Anthropologist Reassess Her Methods. Pp. 29-57 in Hunting Tradition in a Changing World: Yup’ik Lives in Alaska Today. Fienup-Riordan, A., Tyson, W., John, P., Meade, M. and J. Active, eds. New Brunswick: Rutgers University Press.

Kuptana, Rosemarie. (2014). Indigenous Peoples in Canada: Politics, Policy and Human Rights-based Approaches to Development and Relationship-Building. Text from a lecture given at Trent University’s 50th Anniversary, Friday August 08, 2014. Full transcript online: https://www.facebook.com/notes/10152653528630909/.

Moffitt, Morgan, Chetwynd, Courtney, and Zoe Todd. (2015). Interrupting the Northern Research Industry: Why Northern Research should be in Northern Hands. Northern Public Affairs 4(1). Accessed January 29, 2016: http://www.northernpublicaffairs.ca/index/interrupting-the-northern-research-industry-why-northern-research-should-be-in-northern-hands/.

Napoleon, Val. (2007). Thinking About Indigenous Legal Orders. Research Paper for the National Centre for First Nations Governance. Accessed June 05, 2014: http://fngovernance.org/ncfng_research/val_napoleon.pdf.

Pohlmann, Monica. (2014). John Borrows on indigenous legal traditions: ‘We need to explore how we can take that law and carve it in new and beautiful ways’. The Globe and Mail. Accessed 06/07/2015: http://www.theglobeandmail.com/globe-debate/john-borrows-on-indigenous-legal-traditions-we-need-to-explore-how-we-can-take-that-law-and-carve-it-in-new-and-beautiful-ways/article21960774/.

Todd, Zoe. (2014). Fish pluralities: Human-animal relations and sites of engagement in Paulatuuq, Arctic Canada. Etudes/Inuit/Studies 38(1-2): 217-238.

Ultargasheva, Olga and Stacy Rasmus. (2014). Developing Indigenous Research Methodologies in the Arctic. Field Notes: the Polar Field Services Newsletter. Accessed January 23, 2016: http://polarfield.com/blog/developing-indigenous-research-methodologies-in-the-arctic/.

Watts, Vanessa. (2013). Indigenous Place-Thought and Agency amongst Humans and Non-humans (First Woman and Sky Woman go on a European Tour!). DIES: Decolonization, Indigeneity, Education and Society 2(1): 20–34

Zoe Todd (Métis) is from Amiskwaciwâskahikan (Edmonton) in Treaty Six Territory in Alberta, Canada. She writes about Indigeneity, art, architecture, decolonization and healing in urban contexts. She also studies human-animal relations, colonialism and environmental change in northern Canada. She is a tenure-track lecturer in Anthropology at Carleton University in Ottawa, Canada and a PhD Candidate in Social Anthropology at Aberdeen University. She was a 2011 Pierre Elliott Trudeau Foundation Scholar. 

Web Roundup: Zika virus and the politics of public health responses by Jane Roberts

31 Janvier 2016 - 7:43pm

What a difference a month makes. At the start of 2016, its likely that Zika virus was on very few of our radars, yet as we reach the close of January, we find ourselves in the midst of an emerging epidemic, where facts about the virus and associated birth defects have combined with larger questions about the politics of public health responses in the wake of a crisis, both on an individual and governmental level. The emergence of yet another widespread epidemic so soon after Ebola leads again to questions how responses are formulated, and who gets priority access to medications and hospital beds in the face of a shortage of resources or available vaccines.

Some have suggested that the arrival of Zika virus is foreshadowing dystopian climate future, where the realm of science fiction is slowly becoming a reality as a result of “pushing the limits of our planets ecology”. This article in the Guardian proposes that the emergence of viruses such as Zika affect society on a much broader scale beyond the immediate health implications, most notably in the increased likelihood that residents of wealthy developed world will travel less frequently to places just starting to emerge from poverty for fear of contagion, leaving the poor and vulnerable bear the brunt.

An interesting article in The Lancet looks at the history of moral panic and pandemics, highlighting the importance of choice of language in shaping how people respond. It brings up interesting ideas regarding ho pandemics or epidemics are actually not only how widespread a disease actually is, but also how it is perceived, something that seems especially relevant as we watch yet another virus emerge hot on the heels of the recent Ebola epidemic. This concern with how early information is disseminated is also referenced in the New York Times where the article highlights the delicate task public health officials have in having to communicate to both the general public and policy makers alike the seriousness of the outbreak so as to mobilize resources, but without causing panic. Everything involved in rolling out an official response needs to be considered, right down to the language used, with the difference between ‘concern’ and ‘alarm’ or ‘association’ and ‘causation’ having the potential to shape public response.

What are the psychological effects of infectious diseases? And how some devolve into moral panics? This is something we may be seeing more of as the debates over how best to tackle Zika move into conversations about abortion and government declarations advising women to refrain from becoming pregnant for several years -recommendations leading to questions over how far states should go in response to health panics. Recent guidelines established by the Centers for Disease Control and Prevention get pretty close to recommending abortion for women who have been diagnosed with Zika, however the language leaves that idea on the table noting that “Referral to a maternal-fetal medicine or infectious disease specialist with expertise in pregnancy management is recommended”. It is this link between the Zika virus and birth defects that has opened up avenues for discussion about abortion, with several articles mentioning how the virus is changing Latin America’s relationship with abortion. The idea of lifting a ban on abortion is the focus for an article in Wired as well, with doctors at a loss for how to protect their patients given that no vaccine exists on the horizon. For clinicians there is the ever-present question of how best to respond and advise in the face of uncertainty. Zika makes the confusion even worse as the virus doesn’t make everyone ill, so not having any symptoms is no guarantee of safety. Are those who choose to get pregnant signing up for a future where they are somehow destined to be blamed? Somehow held responsible for choosing to get pregnant? Once we get into the territory of choice, the virus stops becoming just a public health issue and moves into a more politically driven moral domain. SO as we watch what happens in the development and response to Zika virus, there is no shortage of food for thought…

In the meantime, for another look at ethical considerations in public health responses to epidemics and pandemics, this report focuses on ethical considerations in public health response to influenza. For a look at some ideas proposing 5 myths about pandemics and how they are refuted, have a look here . And finally, some practical advice from researchers working in mosquito infested areas on how to avoid mosquito bites.

Ethnographic presents and futures of ‘health’—a summary of the Ethnographies and Health workshop by Emma Garnett

28 Janvier 2016 - 10:04pm

In this report we offer an overview of a two-day workshop entitled Ethnographies and Health that was held in October at the London School of Hygiene and Tropical Medicine (LSHTM), and present personal reflections on the discussions and debate from four participants. Critically engaging with ethnography as a practice, methodology, and theoretical orientation, the aim of the workshop was to explore our fieldwork choices and the kinds of knowledge(s) they generate across and within fields of health research (broadly defined). We invited submissions for the workshop from early career researchers from a range of disciplines, acknowledging from our own experiences that while ethnography has increasing presence and recognition within health research, those conducting ethnography may be thinly spread across multiple academic settings, both traditional disciplinary departments in the social sciences and, increasingly, more bio-medically oriented health sciences departments.

The diversity of disciplines and fields of research represented by the 26 people selected to participate in the workshop was matched by the diversity of contemporary modes of ethnographic engagement with, of, and through ‘health’. The workshop encouraged a rich array of questions, focusing on the multiplicity and heterogeneity of ‘healths’ which ethnography opens up and details, and the nuanced ways in which our own entanglements with research settings always encourage additional queries and uncertainties. The opening speakers, Simon Cohn (LSHTM) and Tiago Moreira (Durham University), illuminated in different ways just how ethnography as a practice and mode of making knowledge may come into tension with, for example, biomedical framings of health and/or with the expectations of funders and others in the field. These tensions may also be productive, enabling us to rethink what ‘participating’ in the field is or really means, and to creatively engage with normative assumptions of science and policy. Yet, this also requires us as ethnographers to carefully consider the cuts, classifications and boundaries we make in the practice of our fieldwork, because, as Judy Green (LSHTM) pointed out in her closing summary of the workshop, these decisions are not neutral, and we risk a certain hypocrisy if we challenge the categories of some social actors, but not our own.

Starting out with the notion that ethnography may be better understood as a ‘sensibility’ and health as a ‘multiverse of healths’, the presentations that followed from early career researchers spanned a range of diverse topics including (among others) studies of public health interventions, everyday experiences of health, and structures of care-giving, and described a range of approaches including visual ethnography, auto-ethnography, and historical and linguistic methods. Key themes that emerged through resultant discussions included questioning the different scales of ‘health’ that ethnography highlights and moves between; how a focus on the material and spatial dimensions of health practices open up new modes and models of ‘health’; and the positionality of ethnography in relation to health professional practice and ethical values and structures. We invited workshop participants to reflect on the content and discussions of the workshop, and to consider how it intersected or challenged their own work and approach as early career researchers. By presenting reflections from four participants below we hope to provide both an account of the workshop from those who participated, but also to foreground some of the tensions and questions which were raised and to encourage further dialogue with others adopting ethnographic approaches in, of, and through ‘health’.

 

‘Doing ethics’ as an ethnographer
Gemma Hughes (University of Oxford)

There was a sense of camaraderie at the workshop, created by sharing tales of the field. Mentioning NHS ethics triggered quite a few “war” stories: comparisons of difficulties encountered. Getting ethical approval for my research study, involving vulnerable research participants and multiple organisations, was arduous and intricate. The approval process that safeguards vulnerable people from the potential harms of research is designed for medical, experimental studies. Researchers specify the intervention or procedure participants will receive, as set out in the protocol, so the committee can weigh up potential harms and benefits in deciding if the proposed study is ethical.

Translating this process to a qualitative study requires a stretching of the meaning of “interventions and procedures” to cover interviews and observations. Fitting an ethnographic study into the boxes on the forms is exasperating, as the whole point of taking an ethnographic approach is to try to follow participants into their social world—not controlling the environment, the interview, or conversation but being with people on their terms, taking an interest in what matters to them. So we complete the form by trying to imagine ourselves in the future, and describe what we will ask people we haven’t yet met. Having “got through” the ethics committee, the ethnographer’s ethics work doesn’t end with annual reports containing notification of any breaches in protocol. Instead the nature of ethnographic inquiry is such that we are forced to continually re-evaluate our position. Matt Maycock (University of Glasgow) told us about some of the decisions he had to make during his fieldwork in prisons (e.g. What to wear? What to disclose about himself? Should he carry keys?), demonstrating that those very aspects of ethnographic research that could cause it to fall foul of the ethics process (i.e. its unpredictable, iterative, and unfolding nature) are those that compel the ethnographer not only to think deeply about their position but to act ethically. Matt’s choices to eschew the trappings of power available to him (uniform, non-disclosure, keys) in his efforts to develop respectful relationships with his participants demonstrate an approach to ethics that goes beyond careful planning on paper towards an enacted ethical practice. This is not to say that ethnographers are somehow naturally more ethical than other researchers; rather, if we have a case to conduct research differently from experimental trials then it follows that we also need to “do” ethics differently.

 

Balancing normative concerns for health with an ethnographic sensibility
Periklis Papaloukas (De Montfort University)

When I was initially asked to provide a reflective account on the Ethnographies and Health workshop, I was perplexed as I was thinking about it. Was this an event which helped me advance my research skills in any way, and more specifically with regard to my PhD project? In that aspect, how is ethnography even involved with my own topic, exploring the experiences of LGBT persons diagnosed with multiple sclerosis, a project mostly influenced by critical health psychology? The answer to that is not straightforward. Notwithstanding the ambiguity, visual ethnography has allowed me to expand my research perspective. This was made clear by the end of the workshop, as multiple presenters offered their own meaningful understandings with regard to that. The repositioning of the visual ethnographical component of my theoretical and methodological aspect of my project was an immediate outcome. The echoing of the idea that (visual) ethnography allows for the capturing of an expanding and multiversal social reality of a health experience resonated with my aims and objectives. Visual ethnography influenced by the participatory paradigm of photovoice was not just a tool of data collection anymore. I now see it as an equally important theoretical approach with both critical health psychology and interpretative phenomenological analyses which are producing the integrative theoretical framework which informs the design of the research.

Additionally, the discussions—including the feedback I received and the common exploration of the ‘zooming in and out’ concept—have allowed me to self-critically acknowledge that in spite of my (perhaps over-ambitious) goal of social action and transformation, I need to be careful as to not reproduce normatively created classifications, categories, or labels, or not to create new ones which might be equally oppressive and/or arbitrary. Is the title LGBT inclusive enough? Does the term ‘person with multiple sclerosis’ capture adequately the lived experience of these individuals? My presence at the workshop has given me the opportunity to recognise these essential questions (in a critical health sense) or even create new ones which will provide me with further theoretical enhancement which any PhD project needs. This convergence of practitioners and researchers with such varied research backgrounds and positions, coupled with the all-inquiring eye of more experienced academics, has given me the privilege to take part in productive discussions, to get meaningful feedback, and to enrich my theoretical and practical understandings of the (visually-oriented) ethnographical components of my health and illness related project.

 

Confronting different—and difficult—subjectivities of health
Carys Banks (University of Bath)

Following the excellent workshop at LSHTM in October this year, I would be interested in exploring further the question: What is the role of the anthropologist/ethnographer within health and social care sectors? It was repeatedly affirmed at the ethnographies workshop that as anthropologists and ethnographers our role is to challenge normative notions of lived experiences of health and illness with a view to proliferating and opening up new interpretations of these.

Placing importance on the subjectivity of lived experiences can be viewed as emancipatory in that it suggests there is potential for people to flourish in ways that are meaningful to them. Yet, this all-encompassing approach to health subjectivities is perhaps challenged when faced with the objective fact that some ‘ways of living’ are more likely than others to cause life-limiting illnesses and physical suffering. Though there are many exceptions within our society—for instance religious interpretations of the importance of suffering—generally speaking, within societies (Britain being one) where scientific advancement has led to an overwhelming focus on improving medical treatments and alleviating pain, human experiences such as illness and physical suffering have come to be seen as experiences to fear and, if possible, to avoid.

I am interested in exploring what the role of the anthropologist/ethnographer is and/or should be in situations when, for example, it becomes apparent that certain ‘ways of living’ carry with them high possibilities of developing life-threatening illnesses that are likely to cause real physical suffering. One highly pertinent example of this tension was indicated through Zoran Milosavljevic’s (University of Hull) presentation, which explored online interactions between gay men in HIV/AIDS communities. In these situations, is it our role to ‘educate’ individuals and groups with a view to encouraging them to adhere to lifestyle behaviours which aim to avoid, even negate, ill health and physical suffering? Alternatively, do we remain on the margins of these arguably normatively shaped notions of responding to health and illness, attempting to understand the internal and external factors and power relations that come to shape people’s lives?

Finally, this prompts us to consider what are the implications of this for how anthropologists/ethnographers attempt—or not—to influence policy and practice in these areas?

 

Attuning to the materiality of ‘healths’
Francesca Morra (Oxford Brookes University)

I arrived at the Ethnographies and Health workshop aiming at getting new insights on how to do anthropology of mental health, and certainly I came back with much more than I expected. In my presentation, I argued that mental distress, and symptom experience in particular, can offer the ethnographer a view on the implicit and nonsensical angles of social and cultural environments. As suggested by Joanna Reynolds (LSHTM), in this way we can build a scalar perspective, connecting trivial fragments to broad dynamics. But how can we access, or prompt, those fragments?

All the contributions taught me something about the ways in which we can practice ethnography. Firstly, I noticed a common interest in the materiality—the ‘doing’—of illness. Precisely, it was argued that materiality is expressed by objects and actions mediating the relation between bodies and environments: a cut undershirt in my work, clothing and handbags in Christina Buse’s (University of York) research, and the techniques du corp—washing, dressing, eating—mentioned by Ursula Read (King’s College London).

Secondly, since these sensory experiences are mostly non verbal, the ethnographer can approach them borrowing some tools from other disciplines. In particular, Ursula Read suggested using occupational therapy’s methods to account for details of everyday gestures, “to learn to make the familiar strange.” Alternatively, Periklis Papaloukas (De Montfort University) employed Photovoice to explore places that are usually taken for granted, such as public toilets and sidewalks.

Finally, I think that all the contributions engaged with what was emphasized during the workshop’s opening reflections: ethnography has a creative potential, that of re-thinking and possibly re-constructing its object, to truly ‘participate’ in the field. If we consider that the history of mental health is a history of competing narratives, it becomes clear how crucial could be the ethnographer’s position within the the discourse.

 

Reflections and next steps as Early Career Researchers

It is clear from these series of workshop reflections that contemporary ethnographic engagements with health are rich and diverse, contributing to both lively debate between different disciplines and fields of practice, as well as in the development of social and cultural theory more specifically. As organizers and contributors, we have valued the opportunity to create a shared space for the articulation of ‘uncomfortable’ fieldwork encounters and explicitly discuss the practical work of doing (and achieving) ethnography in, of, and through ‘health’. We hope that the workshop will be the start of a continuing dialogue—establishing an email list being the first step—for early career ethnographers (and others) engaging with the ever-shifting and complex fieldwork relations which make up contemporary ethnographic engagements with ‘health’.

 

Further Information

Participants and abstracts from the Ethnographies & Health workshop

Further reflections on the workshop, by Judy Green (LSHTM)

 

Carys Banks is a third-year doctoral student based within the Department for Health at the University of Bath, UK. Her academic training is in social anthropology and through her doctoral research she is ethnographically exploring the translation of policy into everyday practice within social care support settings for adults with learning disabilities. In particular, she is focusing on how the value of ‘choice’ is constructed within these contexts of care.

Emma Garnett, PhD, is a post-doctoral researcher at the London School of Hygiene & Tropical Medicine (LSHTM). She recently completed her PhD in Anthropology and Science and Technology Studies, which was an ethnographic exploration of data practices in a multi-disciplinary public health project studying air pollution and health. Research interests include social studies of science and technology, environmental health, and the politics of knowledge making in science-policy practices.

Gemma Hughes is currently studying (part-time) for a DPhil in Evidence-Based Health Care at Oxford University, developing a case study of integrated care. Gemma also holds a senior (part-time) post in a Clinical Commissioning Group. Gemma has an MSc in Social Policy and Planning from the LSE and a BA in Philosophy and Literature (University of Essex) and is interested in tracing the connections between policy intentions and the lived experience of everyday lives through ethnography.

Sarah Milton, PhD, is a Research Fellow in Medical Anthropology at LSHTM. She has research interests in ageing, gender, and the body, and local practices of public health in the UK. Her PhD was an ethnographic account of women dating in later life, focusing on the intersections between class, heterosexuality, and femininity. More recently she has researched how welfare shapes later life and how alcohol licensing is shaping neighbourhoods in London. She has a strong commitment to ethnographic methodology.

Francesca Morra is a PhD student in the department of Social Sciences at Oxford Brookes University. She is also a clinical psychologist. Her research examines the experience of mental distress within the Italian asylum system, focusing on the interactions between psychic life, migratory pathways, and categories of citizenship.

Periklis Papaloukas is a PhD candidate with the School of Applied Social Sciences at De Montfort University (DMU), Leicester, UK. His doctoral thesis research is focusing on the experience of lesbian, gay, bisexual, trans, and queer (LGBT) persons living with the chronic condition of multiple sclerosis. He has an MSc in Health Psychology from the Department of Psychology, University of Bath, UK and a bachelor’s in Psychology from Panteion University of Social and Political Sciences at Athens, Greece. His research interests lie in critical health and social psychology, chronic illness and its psychosocial impacts, and human rights, and he strongly advocates for an inclusive society with equality and equity at its core.

Joanna Reynolds is a PhD student in the Department of Social & Environmental Health Research at LSHTM. She has a background in social anthropology and public health and is committed to applying anthropological theories, methodologies, and critical perspectives to public health ‘problems’. Her PhD thesis explores enactments of ‘community’ in relation to a community-based empowerment programme, and aims to contribute to approaches to evaluating the health impacts of such programmes. Her interests lie in health and social inequalities, qualitative methods, ethnography, and public health evaluation.

Top of the Heap: Alexander I. Stingl by Hannah Gibson

25 Janvier 2016 - 8:08pm

For this installment of the Top of the Heap series, I spoke with Alexander I. Stingl, who is a sociologist and a research consultant for Medical Humanities and Social Sciences with the Institute for General Medicine (IAM) of the University Clinic of the Friedrich-Alexander University Erlangen-Nürnberg, Germany.

Alexander I. Stingl

On dancing with the smarts: Cleanse and repeat!

My current and fairly substantial reading list is partially determined by the courses I am teaching during this winter semester at a German university; however, not only do I get to teach mostly courses in English instead of German, but also, and more importantly, courses that I am fairly free to design as I please in terms of the subject matter. As a consequence, I get to roam a vast landscape of scholarship, queering and cutting-together-apart disciplinary knowledges and literatures in the process.

The invitation to write for the Top of the Heap series is, therefore and for many other more superficial reasons and intellectual vanities, riddled with the difficulty of having to make decisions: does one focus on old and new favorites in teaching, books and papers that have ultimately shaped one’s own intellectual development, (mis)use the opportunity to feature the works of deserving friends, or take literally the idea of the title and feature the books one is about to read, that have piqued one’s interest, that are on top of the heap. I will take the literal route and pick a few from the very top of my heap, a.k.a. my current reading list that is both looming and daunting, most of which is sitting materially on my temporary desk in a comfortably warm and cushy apartment in a cold and wet, and presently quite misty, Northern German city, where I have rented a small bedroom with a small, attached office-space—a serenest of atmospheres, disturbed only on occasion by the impossibly long freight trains, a-shaking the house when passing through the nearby train station. This is a great metaphor, I think, for scholarly books can be like trains: they travel through your schedules, minds, and life like trains. The question is whether they leave you with anything more than merely a house shaken and a vase that broke, falling off a shelf after drifting and drifting closer to the edge with every train passing. Passing through my station on schedule are these new friends (and I hope you do not mind, that I call books my friends):

A book that I am extremely excited about is Lisa Lowe’s The Intimacies of Four Continents (2015, Duke UP). The wonderfully brilliant title is, I think, taken from a chapter she published in an edited book a few years prior. It’s an interesting book, because she attempts to accomplish so much with it, it seems, and she is certainly one of only a few authors who have a realistic chance to succeed with bringing in so much that is at stake. She is troubling our concepts of “freedom” and “the human” by uncovering the capillaries and forms that liberalism has embedded in the relations between continents—capillaries, forms, and embeddings that have become “vanished mediators” for which Lowe has become the most brilliant archivist. I have found in her writings a resonance with many of my own concerns about our Western/Global Northern theoretical tools and tool-boxes, a culture of intellectual tools and their deployment that I am certainly part of and am implicated by, but which is also partially inescapable. I think what Lisa Lowe manages is to neatly alert us to the impossibility of completely leaving one’s epistemic culture, while making it possible to understand that one doesn’t have to take this culture for granted ontologically. I think that Northern scholarship often acts and convinces itself that this relation can only be the other way round. Lowe troubles that intensely, and I like that word here, because she truly allows us to intensify our “feeling uncanny” about ourselves in a very useful direction. For example by having illustrated for us in a short piece a few years back, which I can foresee to echo through Intimacies, how much of our methods are infused with Weber’s comparative approach and how these methods set up what we could call—in implicating the deep roots (however disavowed officially) of the discourse of social theory from Lester Ward through Weber to Parsons—our assumed telic Northerness.

A few years ago, Brian Massumi gave us this great concept of ontopower to “think with.” Now he has written the book to show us the many lives and adventures of Ontopower (2015, Duke UP). Massumi’s work is certainly dense and challenging, but it’s definitely not jargon. [i] I think it’s sort of an invitation to dance, and here I think that we should take the idea of vita in the word invitation seriously. To invite is, for me, an effort to “bring life in.” In this context, dance is a wonderful metaphor, because one can dance with others in a community harmoniously in step with them but also for oneself in a crowd; one can dance all alone, but also with a significant other in a kind of conversation. Good books that deploy theory and concepts should be like this idea of dance itself, and I think Brian Massumi manages to show us that quite nicely. As for ontopower, its deployment invokes notions of security and subjectivity, notions of the kinds of ontologies to live with and to inhabit that are produced by security powers, but also and more importantly notions of what kinds of life these ontologies permit. What our “making the effort” of learning the concept with Massumi does is—if I am permitted to play with words a little—is that ontopower can be seen as an inployment to devoke the technologies of subjectivation through security, risk, and possibility of risk. That is what I hope to learn in thinking with Massumi.

Georgiann Davis’s Contesting Intersex: The Dubious Diagnosis (2015, NYU Press) comes out of the “Biopolitics Series” which Monica Casper and Lisa Jean Moore edit, and wherein I found every book they have in this series to be well-crafted and very useful—my favorite is probably Janet Shim’s Heart-sick: The Politics of Risk, Inequality, and Heart Disease (2014), which is not only an extremely insightful study of how intersectionality of perceptions and the difference of perceiving intersectionality work (and often don’t work well) between health care professionals and (at-risk) patients, but it is also the exemplary execution of a study that explicates its methodology towards what can be done with operationalizing concepts and methodologies; it’s great to use as a teaching tool. That sets the bar high for Davis’s book, but given the series’s editors care (and that’s why I even mention all this, because editing is a form of care work and obtains its own care ethics, as I am learning myself as I am shepherding a book series as co- and managing editor), I have no concerns that I will learn much from it. And what I hope to gain is to be put to use in a certain context, namely in my interest in the power of medical images and imaging technologies.

Something that concerns and worries me greatly, looking ahead for what’s in store with medical imaging technologies such as fMRI and newer devices, is their deployment in the moral grey zones and contested areas of medical decision-making, such as in terms of the question of children whose biological sex cannot be immediately determined after birth, but where there is a lot of pressure to do so. The discussion of whether there are male and female brains or whether there is much greater variety, which denies such a simple (and imputed binary) sorting of brains, is something that is still ongoing. In popular perceptions of science, this idea that there are these two kinds of brain is quite prevalent, and research into this question is often not well-designed, imputing the binary form. Here, now the future concern is that parents and doctors, perceiving themselves under social pressure to make children “pass” in increasingly diversity-averse societies, will deploy “brain-scans” to determine surgical procedures to follow and take away their child’s agency in the matter. Here, medical imaging becomes what I have called an implification, a technological contact zone that simultaneously and interdependently implicates and occurs also as an intensification. Subsequently, I am really curious about anything recent in terms of intersex lives as they are lived, contested, negotiated, and so on. Thus, Davis’s book seems like a great contribution to our understanding, and to help me better articulate my research concerns.

Two forthcoming books for early 2016 have me really excited. The first is Alondra Nelson’s The Social Life of DNA: Race, Reparations, and Reconciliation after the Genome (2016, Beacon Press). I have heard her speak about related issues a few times now, and I always walk away knowing much more than I did before, and not only in terms of having gained “just information.” Along with Ruha Benjamin, Aaron Panofsky, and Joan Fujimura, Alondra Nelson manages to enter this scientifically and morally mine-fielded “land of molecular biotech research” and comes out with some amazing ideas on how to navigate in this territory as well as meaningful knowledge about the people inhabiting the land and those affected by it. While the world of ancestry tests seems to be more of a footnote in terms of the science itself, it is clearly touching upon some of the core issues where science affects human beings both in their understanding of themselves as well as many highly political questions. Since I am really invested in this Jaspers-/Arendt-ian idea of our political imagination having pretty much a central role conflated in individual life-courses, science as a profession, and individual as well as collective moral and political agency, Alondra Nelson’s book will carry a lot of weight in shaping my own future endeavors where scholarship transits into the political.

As the second forthcoming book that I am looking forward to, there is, of course, Victoria Pitts-Taylor’s eagerly awaited The Brain’s Body: Neuroscience and Corporeal Politics (2016, Duke UP). She certainly is one of the authors that I cite the most when I write about all that “brain-and-embodiment stuff,” and it’s pretty much an ongoing quip at home that, if we can’t be Donna Haraway when we grow up, then we at least want to be Victoria Pitts-Taylor.

A book that Sabrina M. Weiss has brought to my attention is Ghost Stories for Darwin: The Science of Variation and the Politics of Diversity (2014, Illinois UP) by Banu Subramaniam. Just getting to know a bit about Banu’s work before even reading the book has made me invite her as a panelist (presided over by Sabrina Weiss nonetheless) in a multi-panel mini-conference on decoloniality that I am currently organizing to happen around the Eastern Sociological Society Meeting in 2016. I am very excited that she agreed to come and speak to and with us, and I am pretty anxious that I will really manage to finish reading her book in time—I am sure you know how screwed up schedules during the semester can become, no?

What excites me about Banu’s book, just from skimming through it, is this appreciation for diversity and variability that she has, while reflecting on her standpoint when bringing these two tropes to the table. It’s really great to see someone from the social sciences who is very knowledgeable in biological knowledges carry out the very ideas that for example Bourdieu proposed about using reflection to further objectivate the relationality between the subject and object of research, while keeping it real, i.e. heeding the very warnings that feminist theorists have gifted us with. I have this bit of a thing for what you could call the uncoverage of the way interdisciplianrity is done, namely either in a merely associative way or an integrative way, wherein associative interdisciplinarity is not really accomplishing anything interesting and a lot of interdisciplinary research that is conducted in the associative frame of mind is actually covering for the fact that genuine interdisciplinarity remains or is undone. Banu Subramaniam does the uncoverage of that, I think.

Marc Schuilenburg’s Securitzation of Society: Crime, Risk, and Social Order (2015, NYU Press) is a book that I picked up at the ASA meeting this year, largely because I was looking for something that I could give my students to read in a course I had designed on “Borders, Violence, and Human Security”—something that would give a good introduction to the contact zone between security and surveillance discourses. Schuilenburg, who studied and teaches in the Netherlands, has received a lot of praise and attention for his work—it’s a good opportunity to see what the fuzz is about. Beyond that, his scholarship appeared interesting to me precisely because he seems to bring together a good empirical understanding of research with a theoretically sophisticated background. There is this silly idea, of course, that continental scholarship means “(purely) abstract and theoretical,” but the actual point is that continental scholarship more often means precisely an attitude that tries not to sacrifice one for the other. Thus, my expectation is that this book is good for doing some “thinking with” that my students will also be able to deploy empirically for their own interests.

It may be a bit strange to name a book here to which I contributed a chapter myself, but it’s not really an act of malignant narcissism, but about the book’s editor’s ideas as well as how my contribution came to be included. Hans (J.I.) Bakker’s forthcoming volume The Methodology of Political Economy: Studying the Global Rural–Urban Matrix (2015, Lexington/Rowman & Littlefield) collects a number of papers that engage this problem of urban normativity that Hans made into “the” problem for his tenure as Stanley Knowles Distinguished Professor in 2014/15, and he came up with a provocation or intervention with the notion of a global rural-urban matrix as the key figure in doing the New Political Economy. Some really great researchers contributed to this volume, which was pretty much finished when Hans presented in a panel-series I had helped organize with Nicholas Rowland and Sabrina Weiss at the Eastern Sociological Society Meeting in 2015.

Based on my comments to his paper, Hans became convinced that I definitely must write a chapter for him and thus he sent me his little foreword and a draft for a promotional flyer for the book to give me at least a fledgling idea of what all of the excitement is going to be about. I haven’t read any of the other contributions, which means I am very excited for when I get my contributor copy, so I get to find out what it is I contributed to (I am laughing as I write this, because this kind of not knowing and just going out there adventuring has always been strangely appealing to me and it’s set against this “planned career moves, no risks” technocratic paradigm that is so prevalent in most corners of academia today). I haven’t even seen a final content table, so I only know the names of the people involved (some of which I recognize and am pretty pumped to be in a volume with). So, this is really Hans’ baby, I think, but what he proposes is pretty smart and pretty forward-thinking.

What we really struck up our conversation on, I think, is this notion of urban normativity that Hans and an increasing number of people are currently more than a bit cross with. It fell right in with my own increasing frustration about certain Western ideas about rural-urban relations that have been co-producers of the Global North-South division, even within the Global North itself where we find patches and pockets of a Global South and treated by Global Northerners as such. Even just looking into the past, one can see how cities that indigenous and native people built are being retold under urban normativity; and new city designs and lives—including forms of political participation in the city—are constrained by urban normativity. I am very curious, therefore, to maybe even create a few—or at least be part of—projects in the future with different groups of people and of expertise, to think through what the “city without urbanity” would look like. And yes, this is an equivocation. One of the greatest obstacles for social scientists of all fields and fashions is this inherent fear of equivocation among social and sociological theorists of the North, which some current anthropologists doing ethnographic theory, such as Eduardo Viveiros de Castro, thankfully do not share in. I think that there is an emerging scholarship, even among more open-minded Global Northerners, in an increasing number of scholarly pockets that wants to delink from urban normativity and who are not afraid of equivocation. I think this group of people that Hans collected might be such an initial effort in one small but growing corner of social science to do away with that fear.

A book that’s been on my list for the past two years that I just haven’t gotten around to, in part because I really want to dedicate the time it deserves without interrupting my reading of it, is Claire Laurier Decoteau’s Ancestors and Antiretrovirals: The Biopolitics of HIV/AIDS in Post-Apartheid South Africa (2013, Chicago UP). She is incredibly courageous and one of our smartest voices in sociology; everyone will tell you this who has ever read (about) her research. What I personally find extremely interesting, however, is how she creates a conversation between postcolonial sociology, empirical Bourdieuean methodology and ideas (sustainably beyond the recent cusp of the Bourdieu fashion, because she makes Bourdieu’s engagement with coloniality and with transformation work), and critical realism. What I find courageous is her clear-headed approach to the politics of HIV in South Africa and the various sex and gender norms in play. So this book I will read for many reasons, but to inspire me to be more courageous is probably one of the main incentives.

Perhaps I should also include an edited book here from the top of my heap, since there are a few sitting on my desk, and Federico Luisetti, John Pickles, and Wilson Kaiser’s The Anomie of the Earth: Philosophy, Politics, and Autonomy in Europe and the Americas (2015, Duke UP) is a book that has among its contributors a nice number of decolonial authors. Anomie is, of course, one of the sociological concepts that I—like many students of sociology before and after me—learned pretty much in one of the first lectures. Anomie is one of the building blocks of the Global Northern sociological imagination. I think, from what I have seen so far, that this reader interrogates and troubles sociological imaginations, and thereby holds social theorists to account, while uncovering and giving voice to the silenced concepts and the agents affected by this silencing. “Returning voice,” I think, is not so much the point as this would also just be a paternalistic and imperial gesture. The point is to stop imaginative acts that silence, and to move to acts of listening to Other imaginations; I expect that these are the exercises presented by the contributors to this book.

While these are the books on the top of my heap, I have learned that one should also keep some “pallet cleansers” around. Strangely enough, I have found Adorno’s lectures—with whom I agree on very little in substance—to be a good pallet cleanser, currently reading a chapter or two every once in a while from Zur Lehre von der Geschichte und von der Freiheit – Vorlesungen 1964/1965 (2006, Suhrkamp [engl. History and Freedom, 2006, Polity]). It goes without saying that Adorno was a most sophisticated thinker, writer, and speaker; even though I disagree with him a lot, I always learn from reading him—and reading him, specifically his lectures, is always an intellectual challenge and exercise. At the same time, since I do find his concepts intellectually engaging but not very, let’s say, “deployable,” reading Adorno nowadays doesn’t really “change my stride.” It’s really just a fun exercise to read him and cleanse my mind a bit from the STS-y mindsets I often deal with, without changing into a Frankfurter.

What is important for me, with regard to the books that I have chosen to present here from the top of my heap, is something that, if memory serves, the artist and Zen practitioner Jon J Muth has said about stories, namely that they should leave you with more than when they found you. Along those lines, and looking at a lot of academic texts that I read over the years, I found there are unfortunately too many books out there, usually very readerly texts in Barthes’s sense, that actually try and succeed to diminish their readers. Instead, a good academic text, a good scholarly book, should leave you with more than when it found you.

 

Note

[i] I will admit that I find all this increasingly prevalent talk about being “clear and concise” and the accusation of “using jargon” or “obscuration” boring at best and stupid at worst. It’s a bit like saying that you should be able to plan a nuclear power plant by using only arithmetic. It’s also about a kind of complacency that is detrimental to actually enabling people to strategically use what tactics empowerment have gained them. While there are the occasional cases where some people have really developed a jargon that is not helpful outside of itself, the majority of theory enterprises present something deployable and eventually useful “to think with.” Whether it is always useful for every individual student is another matter, but one should get to know several tools and then decide which ones are useful for oneself. But that doesn’t mean one should deny others the opportunity to use other tools to “think with.” That extends to this discussion, I think, of theory as a cultural technique (Kulturtechnik) and as technology of domination/hegemony (Herrschaftstechnik). While I agree with the complaint being made that theory can be used to that effect of establishing and maintaining hegemony and privilege, the demand to just “make it simpler” and thereby more accessible itself is an equally sinister adaptation to the culture of complacency that hegemonies deploy—access is not the same as being enabled to use the forms of empowerment we have gained, and in pretending access alone solves problems of inequality and injustice we fall into yet another dangerous trap. The key lies, I think, very pragmatically in creating new zones and ways of “learning together (with Others),” instead, where theories do play important roles. While some interlocutors in sociology today want to “Fuck nuance!” —pace Kieran Healy, for whom I have a lot of respect, and his paper against nuance was certainly more “nuanced”—I would say that we should let nuances and niches speak (back), and I wouldn’t be surprised if the reply would be “Yeah, you too!”

I think the main problem is, as is often the case, a question of effort or rather lack of it.

 

Alexander I. Stingl (PhD) is a a research consultant for Medical Humanities and Social Sciences with the Institute for General Medicine (IAM) of the University Clinic of the Friedrich-Alexander University Erlangen-Nürnberg, Germany. Since 2011, he has taught in the Leuphana Semester, a program of the College of Leuphana University Lüneburg, Germany. His interests in research are diverse, but mostly gestate around the idea of what it means to be a biodigital citizen. His most current research questions focus on the production of inequality through digital cultural health care capital, alternative cultures of ADHD and the need for a shift from an attention economy to attention ecologies, embodied and enactive cognitive cultures of food and sex, semantic agency theory, the power of medical images, the question of the “technological object,” the media archeology of the “legitimacy of the digital age,” bioeconomies beyond urban normativity, the transatlantic history of the production of “the body,” and a decolonial theory of (the production of values of) justice.

Comics and the Medical Encounter by Ryan Montoya

21 Janvier 2016 - 6:02pm

Editor’s Note: In March of 2013 the Annals of Internal Medicine added the Graphic Medicine series as part of their medical humanities features. As they describe, “Annals Graphic Medicine brings together original graphic narratives, comics, animation/feature, and other creative forms by those who provide or receive health care.” Most often the stories are from a physician’s own experiences and drawn by the health professional themselves or sometimes by a collaborator. The November 2015 issue of the Annals published “Sign Out” by Ryan Montoya, M.D. I asked Ryan to talk about what motivated him to create his comic “Sign Out” and some of the comics conventions that he uses to convey complex social interactions.

I want to explain my biggest fears, anxieties, and neuroses, and put them under a spotlight.

At least, that is currently my goal with my comic work. I spend a great deal of time writing in my journal and refining a narrative in my head that explains what are likely completely disparate life events into a cohesive story. That narrative changes all the time, and I would like my comics to capture a version of this story at that moment.

I have loved and read and drawn comics since the first grade. I knew it would always be a part of my life, and as I made my way through my medical studies it became rapidly obvious that I would be telling graphic narratives culled from my personal experiences in medicine and other fields. My artwork is heavily influenced (i.e. I’ve spent a great deal of time ripping off) superhero and independent art, whether it was the razor sharp linework and striking compositions of Brian Bolland, the real-world sensitivity and humor of Paul Chadwick, the quiet rage and clarity of Howard Cruse, the timeless grace of Will Eisner, the irreverence of Jean Girard, the scope and breadth of Otomo Katsuhiro, the observational humanity of Joe Sacco, the exciting and nervous impertinence of the Image Founding Fathers, or the hauntingly simple and profound lines of Yoshihiro Tatsumi.

I’ve longed for my work to be an amalgamation of all of them. My motivation with my comic “Sign Out” was to use these various styles to depict all my fears, anxieties, and neurosis under a spotlight. This informs the style I used in the story, and which I have adopted for a lot of my recent work. Every single panel is dark, with heavy use of shadows to give weight to the characters and situations, and suggest a strong overhead light source; each character in the story becomes a performer on stage.

In technical terms, I wanted the story to be as immersive as possible. Comic boards are usually drawn at a larger 11 by 17 inch scale, to appear more detailed when shrunk to standard comic book size. I prefer to draw in 1:1 full scale, so that the reader can get lost in the details with me. Most of the pages feature full-bleed art extending to the edge, with very narrow gutters, to create an immersive experience and not lose the reader’s attention. Texture is very important to me, so that almost every surface in every panel is cluttered with strakes, cross-hatching, and point stippling, so that the audience can feel each surface indelibly.

It is standard for graphic memoirs to have the author narrate the story in first person, but I decided on page 2 that I wanted to break the fourth wall, in order to establish a direct empathic bond with the reader and engender trust in what I was explaining. I also thought this would be a good device to show that I am far from an omniscient narrator, but rather someone who is trying to explain what is going on in a medical interaction from this side of the exam table. My goal was not to presuppose what patients may think about interactions with a healthcare provider. It was to explain what is going on in our heads. This extended to my choice of words and what I wrote in each panel. I tend to over-explain everything, and I wanted to choose my text and writing as carefully as possible, and to economize my sentences to say exactly what I want, and leave the rest of the interpretation to the reader.

At the bottom of page 2, a sequence of 4 narrow adjacent panels assumes a comic strip format. In a comic strip, this usually indicates short, immediately consecutive chronological moments, but for this story I wanted to use this device to show a rapid montage of monotonous, arduous moments of the day, where the setting is the exact same but my clothes, questions, and posture were the only variations.

I am a physically small person, and with my youngish facial appearance, I am often mistaken in the clinic or the hospital as an inexperienced child. This is over-emphasized in the story, from my largish head and tiny frame, to me looking up in the first panel of page 3—partly from still not feeling as experienced a physician as I should be, and partially in reverence to the census sheet that appears in the next panel. This feeling of being naive and unschooled extends further onto page 4 panel 2, where I am physically hunching underneath the heavy tutelage of my colleague’s advice, despite us having the exact same level of experience.

Perhaps the most important idea of the story is that, as much as doctors want to present a paternalistic air of authority to a patient, it is, more often than not, a performance. I really wanted to accentuate this idea and, using strong shadows and high contrast, spot-lit areas to reiterate this. At the bottom of page 3, I discuss pharmaceutical recommendations for a patient that will soon be discharged, and the divider drape in the background becomes a metaphorical stage curtain. As I dole out my treatment plan, I strike a confident pose—I am an actor nailing my monologue. But when I realize that I have made a mistake, I deferentially crouch in embarrassment. The audience (and my patient) are witness to this mortifying pratfall on stage, the curtain still draped in the background.

I wanted the idea of the doctor as a performer to most strongly be illustrated on the last page. In panel 3, I am an actor again, taking deep breaths and struggling to memorize my lines while the stage spotlight peers through a shuttered patient window. In panel 4, I get one last review of the text, and timidly walk on stage. In the last panel, another performance begins, and the silent audience is staring right at me.

 

Ryan Montoya is a Family Medicine doctor and a comic book artist. He completed his undergraduate studies at Harvard University and his medical school and residency training in Family Medicine at University of Massachusetts Medical School. He has art training from the Massachusetts College of Art, Art Institute of Boston, Joe Kubert School of Comic Art, and the School of the Museum of Fine Arts.

 

Image + Text is a series that engages the landscape of graphic illness narratives. What can the production of comics and other graphic forms tell us about issues of embodiment, biopolitics, or biomedicalizaton? How do our relations of collaboration and translation as interlocutor, ethnographer/artist, or ethnographer and artist work to express subjective and intersubjective moments in complex social worlds that are fraught with illness and power relations embedded in a search for well-being? Image + Text is edited by Juliet McMullin and Stacy Leigh Pigg.

The Case of the Cake: Dilemmas of Giving and Taking by Rima Praspaliauskiene

18 Janvier 2016 - 9:36pm

In my fieldwork at the Cardiology Unit at Vilnius public hospital I encountered what I call “the cake case.” In 2009-2010 I was in Lithuania to study how medical care was transforming as the state embarked on health care reform that aimed to rationalize and privatize public services. In particular, the neoliberal reform projects targeted informal payments, or “bribes,” that were prevalent in public health care. The state sought to transform these transactions into a system of transparent co-payments, one of many efficiency-producing transitions underway, including the introduction of private health care insurance and increasing the number of private clinics. Meanwhile, I was observing how doctors, patients, and their relatives engaged in ambiguous practices of giving that policy makers and some scholars would define as non-transparent, informal, and corrupt. The cake case helped me understand how multiple forms of care coexist in any exchange, such that what counts as efficient and acceptable care is not stable or solid.

“Did you see that?” nurse Violeta asked another nurse and a resident at the nursing station when a tall and sizable woman in high heels, carrying an oversized black bag, marched into the four-bed male patient room.  They nodded. “What do we do now?” asked Violeta. Her colleagues rolled their eyes. The medical staff was clearly uncomfortable, unsure of how to react to the situation. Shortly afterwards, the woman emerged from the room proudly carrying a large chocolate cake with a red rose on the top and entered the nurse assistants’ office. I recognized the woman, Galina, as the wife of a man in his late fifties who had been hospitalized twice in the previous two months.  He was a former alcoholic with a liver condition that further complicated his heart problems. After both of his previous discharges, Galina brought three cakes as a gesture of gratitude. After the first time, nurse Violeta thanked Galina and told her that it was “really unnecessary.” Later she explained to me that the patient’s family was barely making ends meet: the warehouse where Galina worked was cutting hours, her husband’s disability payment was very modest, and their heating bills were increasingly high.

When Galina rolled out her husband in a wheelchair and the sound of her high heels faded away, a doctor named Regina commented, “I don’t know what to do with her; they will be back soon. I told her not to bring the cakes or anything else even though they are so tasty but you know their situation. I feel so sorry for the wife.”

Violeta nodded in affirmation. “I told her:  your life is hard, don’t do that, but she just doesn’t listen.”

“She is a good baker, I gave her extra diapers,” the nursing assistant Irena added.

“I packed an extra supply of medications for the poor woman, she has to suffer because of that alcoholic,” concluded Regina.

In the cardiology unit, patients from across the economic spectrum waited for pacemakers, medications, and tests, or were recovering from heart surgeries. All day long, family members, friends, and acquaintances came and left. Many of these visitors brought their favorite foods – not only for the patients, but for the medical staff as well. Boxes and bars of chocolate, coffee, cakes, home-made cottage cheese, jars of honey, apples, and smoked meats and fish were objects that patients and caregivers offered to the doctors and nurses. I saw bottles of wine and brandy visibly sticking out of paper and plastic bags. A few times I smelled smoked eel, ham, and sausages. Their smell sharply contrasted with the blandness of sterility and of hospital food.

I also saw quite a few boxes of chocolates that were gifted to the doctors and nurses. The less expensive chocolates were often shared immediately, while the ones from gourmet chocolate stores in Vilnius would be quietly taken home. Sometimes, these boxes were paired with envelopes that contained money destined for doctors’ pockets. At the end of the week, when many patients were discharged, boxes would pile up on desks and shelves. Residents and interns, constantly on the run between the ER and the hospital’s multiple units, consumed most of these chocolates. They saved leftovers for night shifts and gave chocolates to their fellow residents. At other times, boxes were left unopened: the medical staff had been saturated with too many, were too busy, or were (possibly, I thought) inhibited by my presence.

Stories about giving, anxiety, humiliation and gratitude in medical encounters are a shared memory and a present practice in Lithuania.  I am not innocent of these practices. My mother worked at a hospital during Soviet times in Lithuania and occasionally brought home sweets that she had received from discharged patients. When my father was sick, she took gift bags and envelopes with money to the medical staff. At the cardiology unit, giving and taking – however ambiguous – constitutes a form of life and caring of Lithuanian public health.[1]

Things, money, and people are enmeshed within these circuits and constitute a specific form of enveloped care.[2] “Little envelope” – vokelis – is the most common form of handing money to doctors in public health care. The envelope with money, along with boxes of chocolates, cakes, and other food items, carries more than just money or sweets. It encapsulates the linkages between notions of health, relation to medical power, belief, hope, vernacular history, and political economy.  It is not only an economic transaction, but also an aesthetics of communications and a form of care embedded in social relations and driven by webs of obligation that both exceed and are included in notions of the gift, the commodity, or the bribe. We might understand Galina’s cake to be a sign of gratitude, a gift given after hospital care was received. Yet, chronic patients, like Galina’s husband, will be returning to the hospital. The temporal markers  – before and after – that are often applied (by doctors, patients, and anthropologists) to distinguish gifts from bribes cannot be applied in illness encounters. “After” is also “before” for the sick and their caretakers.

While observing the work of doctors and nurses and their interactions with patients and their social networks, I realized that accepting these “thank yous” was as complex as giving them. The cake case is an example of such tensions. Cakes or envelopes with money can be both signs of attention and expressions of sincere gratitude for the nurses and doctors. They might also be neither, but rather an expression or display of care towards the patient. Both and neither.

The encounter I described might be read as an economic transaction where the cake is exchanged for a bag of diapers and compassion. Indeed, medical practitioners’ act of giving diapers and medications to Galina resembles a way “to settle accounts,” to acknowledge and make exchange and reciprocity visible, to prevent Galina from bringing another cake in the future, and thus continuing the pattern of her relationships with the doctor, nurse and the aid. However, Galina’s encounters do not fit within these rational logics of exchange. Galina, like other caretakers, was concerned about being a caring wife, daughter, or friend. Giving the cake was a way of caring for her kin as well as for the doctors. Both and neither: breaking the logic of equivalence and staying within it could each, at once, be true.

Galina’s cake was indeed very tasty: not too sweet and not too rich. It was a special cake, different from other cakes shared by medical staff at the unit. The story of Galina and her husband was embedded in it. On that day, the cake was shared with other medical practitioners who came into the unit. At the end of the day the nurses and doctors took the leftovers of Galina’s cake home to their own children, along with bits of an ongoing story.

 

Notes

[1] Things and money have been an important part of clinical relationships in other post-socialist contexts as well. See, for example, E. Andaya, 2009, “The Gift of Health. Socialist Medical Practice and Shifting Material and Moral Economies in Post-Soviet Cuba,” Medical Anthropology Quarterly, Vol. 23, Issue 4, pp.357-374; M. Bazylevych, 2010, “Prestige Concept Reconsidered. Hybridity of Prestige in Post-Socialist Biomedical Profession,” International Journal of Social Inquiry, Vol.3., Number 2, pp.75-99; J. Patico, 2002, “Chocolate and Cognac: Gifts and the Recognition of Social Worlds in Post-Soviet Russia,” Ethnos 67 (3), 345-368; M. Rivkin-Fish, 2005, Women’s Health in Post-Soviet Russia. The Politics of Intervention, Bloomington and Indianapolis: Indiana University Press; A.M. Salmi, 2003, “Health in Exchange. Teachers, Doctors, and the Strength of Informal Practices in Russia,” Culture, Medicine, and Psychiatry, 27: 109-130; S. Sabina, 2012, “Neither Commodities Nor Gifts: Post-Socialist Informal Exchanges in the Romanian Healthcare system,” Journal of the Royal Anthropological Institute (N.S.) 18, 65-82.

[2] R.Praspaliauskiene, 2015, Enveloped Lives: Giving, Caring and Relating in Lithuanian Health Care, PhD Dissertation, UC Davis.

 

Rima Praspaliauskiene received her PhD in the UC Davis Anthropology Department. Her dissertation, Enveloped Lives: Caring, Giving, and Relating in Lithuanian Health Care, is an ethnography of health care practices in post-socialist Lithuania in the times of neoliberal reforms. Her research investigates relationship between health, care, and money. Currently she teaches anthropology at Mills College. She can be reached at rpraspal@gmail.com.

Why Does Everyone Hate Martin Shkreli? by Danya Glabau

14 Janvier 2016 - 10:12pm

The investor-boy-wunderkind-turned-pharmaceutical-CEO Martin Shkreli was the end of the year’s emblem of schadenfreude. Shkreli has been in the news regularly since September 2015 when his company, Turing Pharmaceuticals, announced plans to raise the price of decades-old toxoplasmosis drug Daraprim from $13.50 to $750 per pill. Public discussion about Turing’s pricing strategy prompted a congressional hearing on drug pricing and brought him firmly into the public eye: he appeared on numerous cable news networks, and a Gawker piece about his YouTube channel pushed one of his videos to over 122,000 views. His misfortune has continued since his December 17 arrest: on December 18, he resigned as CEO of Turing, on December 21, he was terminated from his other CEO position at KaloBios, and on December 24, KaloBios’ stock was delisted from the Nasdaq. The Securities and Exchange Commission (SEC) complaint against him catalogs his crimes in animated legalese, clearly meant for wide public readership. The charges document a series of failed investments in the pharmaceutical space that he “lied” (in the language of the complaint) about to his investors to cover up. Yet Shkreli managed to spin his losses into promises of greater future gains, enabling him to raise yet more financing that he claimed was for his current and future projects, but that was actually used to hide what had gone wrong.

This episode is a prime ethnographic moment in a much larger, more complex story about how the production of biomedical knowledge is now being shaped by the financial services industry. In this essay—the first of what I hope to be many that I write on this topic—I am less interested in Shkreli’s mendacious psychology than I am in starting to pry open the logics of the milieu in which he committed his crimes: the intersection of biomedicine, biotechnology, and venture investing. What makes him so delightfully hateable aren’t the particular lies he told to investors and regulators, but how he so gleefully espoused the benefits of corporate profit-seeking in the pharmaceutical industry prior to his downfall. Yet his views are not extraordinary; rather, they are emblematic of how this peculiar corner of industry does business.

Turing Pharmaceutical’s pricing scheme was troubling because it contradicts the common sense assumption about what biomedicine is: a set of technologies and techniques designed to make sick people well. I call this the “care thesis of biomedicine.” As anthropologists of medicine and the body tell us, this understanding of medicine is deeply social and moral—and often troubling and contradictory. We expect that by taking care of the weak and vulnerable, we can make bodies better (if not “whole”), restore social personhood, and open up new opportunities for participation in political life (Scheper-Hughes and Lock 1987, Das and Addlakha 2001). Further, the efflorescence of life-preserving technologies in the 20th and early 21st centuries provide examples aplenty of how biomedical tools and techniques are generative of moral obligations between members of society and between individuals and a variety of biomedical institutions (Sharp 2001, Lock 2002, Kaufman and Fjord 2011). The moral register of the care thesis is evident within biomedicine, too. The Hippocratic Oath lays out the first rule of this ideal: first, do no harm. But this “care thesis” of biomedicine is, and has always been, at least partially mythical—the origin myth of modern, Western biomedicine that is embedded in key rituals of medical practice (Dingwall 2016). As a myth, it sets forth an ideal, but falls short in describing the real state of things in the world, or how to fix them.

Today, biomedicine is a booming industry as well as a set of caring practices, and an industry from which investors know they can make extraordinary returns. Biotechnology companies in particular—originally those companies whose technologies involve making or delivering biologically-derived compounds, but now often used to mean any small, newer company making a product for use in biomedicine—have proven to be cash cows for investors frequently enough to drive a biotech investing frenzy. The enthusiasm surrounding the financial promise of biotech (particularly biopharma, biotech companies who strictly work on pharmaceuticals) is so strong that some industry insiders warn that biotech is the next financial bubble. I am not the first anthropologist to be drawn to biotech. Kaushik Sunder Rajan (2006) and Michael Fortun (2001) have provided lively commentary about the promissory allure of biotechnology. Sunder Rajan and Fortun were both drawn to the linguistic nature of the promise, inspired by Jacques Derrida’s engagement with the time and politics of the futur anterieur. By contrast, what fascinates me about the promise of biotechnology at this moment is the dense net of social relations, the markers of distinction and accomplishment, and the emergent standards for scientific knowledge that animate networks of actors to make promises about future value to each other and to the public. In other words, I see value not only in understanding the rhetoric of biotech, but also, like Cori Hayden (2003), the make up of the actor-network (Callon 1986, Latour 1983, 1987, Law 1986) and the flow of power, capital, and materials between its nodes.

Venture investment groups are important nodes in the biopharma network. Venture capital (VC) firms lead the way in venture investing, though hedge funds, mutual funds (Shkreli’s own institutional background), institutional investors, and other investors are also becoming major players in the field. Venture capital firms are small organizations typically led by one to three managing partners with anywhere from zero to dozens of more junior or part time partners, associates, principals, and others. In healthcare- or life science-focused firms or divisions of large firms, much of the staff has training in the life sciences or medicine, often holding PhDs or MDs, with a few MBAs as well. VCs, as individual employees are metonymically referred to, are everywhere all the time, gathering information, coordinating new investments and deals with companies previously invested in, and always looking to maximize returns.

Venture capital is “expensive” in financial terms. In exchange for funding in the hundreds of thousands to tens of millions of dollars, VC firms (and firms that make venture-style investments) take a percentage ownership of the company, earning them rights to a portion of the company’s stocks if it goes public and to a proportionate amount of proceeds if it is sold. They typically expect 500% to 1000% returns in five to seven years—rather unlikely returns in most of the financial system, unless fraud is involved. VC investors may still exercise significant control over the company even after it goes public because of its ownership of company stocks, especially in the first months and years after an initial public offering (IPO). VCs structure their deals so that they are first in line to get paid when the company is sold or liquidated, leaving founders and employees, many of whom get paid in stock rather than cash, responsible for picking up the pieces without compensation. Further, major investors often earn board seats, which gives them the power to hire or fire company executives and thereby exert soft control over company strategy. Employees of investment firms are not infrequently hired by the company that the investors control to run key business operations or to take over an executive position.

An influx of venture capital takes a large enough slice of the company pie that it changes how company executives see the science and products their company produces. Plus, they can now lose their job if investors decide they are not pursuing future profits aggressively enough. Doing clinical studies isn’t discussed in terms of doing research or even creating knowledge once investors get involved; it is about derisking the investment for investors. An idea for a drug is risky because the drug can always fail to show a significant difference from a placebo in a Phase II or Phase III clinical trial. Running these trials and ironing out the supply chain for the drug can cost in the tens to hundreds of millions of dollars. Even with evidence from clinical trials, the FDA can fail to be convinced by the trials or by the company’s ability to reliably and safely produce large quantities of their product. The product can fail to attract users because insurers may hesitate to pay for the cost or the route of administration may not fit into the already-established business models of the physicians who are expected to prescribe it. Seemingly outrageous pricing is one of many ways that executives demonstrate their serious interest in achieving the desired returns of venture investors.

Given this state of affairs, some of Shkreli’s bombastic claims begin to make an uncomfortable degree of sense. For example, on December 4 at the Forbes Healthcare Summit (an industry networking event where he was featured on the event website’s front page), he told an audience, “I probably would have raised prices higher, is probably what I should have done. I could have raised it higher and made more profits for our shareholders. Which is my primary duty.” By contrast, Maine Senator Susan Collins’ comments about the “egregious” pricing strategies of investor-dependent biotech companies at a December 9th hearing on drug pricing in the Senate Committee on Aging sound rather naïve. Her view, reported by NPR, expressed surprise and outrage: “Some of these companies seem to act more like hedge funds than traditional pharmaceutical companies.” She also compared the behavior of pharmaceutical companies to that of unsavory banking practices, saying, “These companies are to ethical pharmaceutical companies as a loan shark is to a bank.”

Senator Collins’ critique of drug pricing, prompted by Turing’s pricing announcements, is motivated by a belief in the care thesis of biomedicine; it falls flat for me because it is manifestly true without offering any particular insight, critique, or solution. Biopharma and biotech companies behave like financial vehicles in search of maximized revenue and profits because that is what they are. They are value-maximizing machines whose only moral obligation is to fulfill their agreements, implicit and explicit, to maximize value for investors. This bothers us because we believe that the care thesis ought to shape the culture and practice of biomedicine, and moreover, that it applies equally to pharmaceutical companies as it does to individual physicians who take the Hippocratic Oath. The truth is that it does not fully account for the activities of either group, and it accounts for much less of the activities of the manufacturers of biomedicine than the practitioners of it.

The question of whether the care myth ought to structure the business and practice of biomedicine is a different one from whether it does—two things which often get conflated in public discussion of drug pricing, health care costs, and health insurance reform. The recent turn to studying ethics and morality in anthropology (Zigon 2008, Csordas 2014, Laidlaw 2014), particularly with regards to biomedicine and public health (Lambek 2010, Fassin 2014, Mattingly 2014, Zigon and Throop 2014), provides some traction for decoupling descriptive research into the moral reasoning of social and cultural actors from the normative prescriptions for safeguarding personal liberty traditionally offered by bioethicists. Understanding the logic of the biopharma industry goes a long way toward understanding why someone like Shkreli could operate with apparent success for years. It also provides breathing space to follow the network to pinpoint which actors and relationships are really behind this state of affairs.

I hope my short analysis of some aspects of the Shkreli case illustrates what an ethnographically-informed investigation can teach us much about the rising costs of medical intervention. Since cost so frequently inhibits access to medical care in the United States, this episode also raises questions about what would need to be done to make care more central to biomedicine. Although he lied about the particulars of his deals to an unusual extent, the general framework of Shkreli’s actions—moving back and forth between investor and pharma executive roles, approaching drug pricing with the intent of maximizing returns—constituted business as usual. Private financing of drug development is contingent upon continuously demonstrating the ability to live up to highly challenging financial expectations—contractual promises upon which the personal and professional fortunes of the executives in charge can rise or fall.

With Turing Pharmaceuticals and other venture-backed biotechnology, medical device, and pharmaceutical projects, we are many layers removed from the fetishized commodity object. It is not (merely) consumer demand for biomedical objects that drives pursuit of higher prices in the pharmaceutical industry—already a fetishization of their value, in Marxist terms—but demand for a maximization of already immaterial investment capital. But in the absence of publicly-funded translational (“bench-to-bedside”) research on the scale necessary to reach FDA approval of new drugs and devices, this is what drives pharmaceutical innovation in the United States today. The moral outrage of Shkreli’s time at Turing Pharmaceuticals ought not to be that pharmaceutical companies can raise prices with impunity, or that dishonest people can amass fame and fortune, but that there is no alternative to this way of doing research and development in contemporary biomedicine.

 

References

Callon, Michael. 1986. “Some Elements of a Sociology of Translation: Domestication of the Scallops and the Fishermen of St. Brieuc Bay.” In Power, Action and Belief: A New Sociology of Knowledge?, edited by John Law, 196–233. London: Routledge.

Csordas, Thomas J. 2014. “Afterword: Moral Experience in Anthropology.” Ethos 42 (1) (March 12): 139–152. doi:10.1111/etho.12043.

Das, Veena, and Renu Addlakha. 2001. “Disability and Domestic Citizenship: Voice, Gender, and the Making of the Subject.” Public Culture 13 (3) (October 1): 511–532. doi:10.1215/08992363-13-3-511.

Dingwall, Robert. 2016. “Why Are Doctors Dissatisfied ? The Role of Origin Myths.” Journal of Health Services Research & Policy 21 (1): 67–70. doi:10.1177/1355819615589425.

Fassin, Didier. 2014. “The Ethical Turn in Anthropology.” Hau: Journal of Ethnographic Theory 4 (1): 429–435.

Fortun, Michael. 2001. “Mediated Speculations in the Genomics Futures Markets.” New Genetics & Society 20 (2) (August 1): 139–156. doi:10.1080/14636770120070240.

Hayden, Cori. 2003. When Nature Goes Public: The Making and Unmaking of Bioprospecting in Mexico. Princeton: Princeton University Press.

Kaufman, Sharon, and Laksmi Fjord. 2011. “Medicare, Ethics, and Reflexive Longevity: Governing Time and Treatment in an Aging Society.” Medical Anthropology Quarterly 25 (2): 209–231.

Laidlaw, James. 2014. The Subject of Virtue: An Anthropology of Ethics and Freedom. New York: Cambridge University Press.

Lambek, Michael. 2010. “Introduction.” In Ordinary Ethics: Anthropology, Language, and Action, edited by Michael Lambek, 1–36. New York: Fordham Unviersity Press.

Latour, Bruno. 1983. “Give Me a Laboratory and I Will Raise the World.” In Science Observed: Perspectives on the Social Study of Science, edited by K. Knorr and M. Mulkay, 141–170. London: Sage.

Latour, Bruno. 1987. Science in Action. Harvard University Press: Cambridge, MA.

Law, John. 1986. “On the Methods of Long-Distance Control: Vessel, Navigation and the Portuguese Route to India.” In Power, Action and Belief: A New Sociology of Knowledge?, edited by John Law, 234–263. London: Routledge & Kegan Paul.

Lock, Margaret. 2002. Twice Dead: Organ Transplants and the Reinvention of Death. Berkeley, CA: University of California Press.

Mattingly, Cheryl. 2014. Moral Laboratories: Family Peril and the Struggle for a Good Life. Oakland, CA: University of California Press.

Petryna, Adriana. 2009. When Experiments Travel: Clinical Trials and the Global Search for Human Subjects. Princeton: Princeton University Press.

Scheper-Hughes, Nancy, and Margaret Lock. 1987. “The Mindful Body: A Prolegomenon to Future Work in Medical Anthropology.” Medical Anthropology Quarterly 1 (1) (March): 6–41. doi:10.1525/maq.1987.1.1.02a00020.

Sharp, Lesley A. 2001. “Commodified Kin: Death, Mourning, and Competing Claims on the Bodies of Organ Donors in the United States.” American Anthropologist 103 (1): 112–133.

Sunder Rajan, Kaushik. 2006. Biocapital: The Constitution of Postgenomic Life. Durham: Duke University Press.

Zigon, Jarrett. 2008. Morality: An Anthropological Perspective. New York: Berg.

Zigon, Jarrett, and C. Jason Throop. 2014. “Moral Experience: Introduction.” Ethos 42 (1) (March 12): 1–15. doi:10.1111/etho.12035.

 

Danya Glabau is a PhD candidate in Science and Technology Studies (STS) at Cornell University, Faculty at The Brooklyn Institute for Social Research, and Director of Medical Affairs at Allovate Therapeutics, a biopharmaceutical company developing new treatments for allergies. You can check out her (currently hibernating) blog, Allergy and the City, to learn more about her dissertation research on the culture surrounding food allergies in the United States, check out her upcoming class at the Brooklyn Institute, Imagining Immunity, and follow her on Twitter at @allergyPhD.

Cassandra Crawford’s Phantom Limb: Amputation, Embodiment, and Prosthetic Technology by Seth Messinger

11 Janvier 2016 - 7:33pm

Phantom Limb: Amputation, Embodiment, and Prosthetic Technology

by Cassandra S. Crawford

NYU Press, 2014, 314 pages

The title of this important book gives only the slightest hint of the extraordinarily complex account that Crawford has produced about the biopolitics of limb absence and other forms of acquired limb loss, the meaning of phantom sensation and phantom pain, and the work of scientific knowledge-making in constructing experience and persons. Crawford organizes her book both as a history of biomedicine’s overall construction of limb loss and as a series of disciplinary encounters between different medical specialties struggling over how to delimit and explain the experience of limb loss.

In the United States, amputation and phantom sensation became a concern to biomedicine as a result of the mass injuries and limb loss sustained by soldiers during the Civil War. This period produced one of the first large-scale attempts to offer prosthetic limbs to people with limb loss, and as the manufacture and utilization of prosthetics increased, an interest in the biomedical needs and challenges experienced by prosthetic users also grew rapidly. This was also a period of increased attention to neuroscience and the linkages between nerves and the self (Phineas Gage’s accident with a railroad spike happened in 1848).

Silas Weir Mitchell, an American physician and neuroscientist, treated Civil War casualties and was the first to seriously study the phenomena of phantom limb sensation. He prepared detailed reports about sensations experienced by persons with limb loss and the potential clinical effects those sensations might have on prosthetic utilization. From this initial clinical attention Crawford explores how different clinical specialties have constructed limb loss and sensations associated with it. Throughout the book Crawford describes with precision, the process of how scientists and clinicians create meaning and experiences for patients and the public. As scientific regimes of knowledge change, both through innovation and discovery, and because human experience leaks through the various taxonomic containers that are developed to discipline it, researchers and clinicians propose new systems to encompass these transitions and transformations.

Crawford is particularly insightful in describing how phantom sensation, often reported as pleasurable and helpful, became understood as phantom pain and emerged as one of the most significant post-amputation experiences reported by clinicians. When phantom sensations—the experience of ghostly digits and limbs—were first reported by people with limb loss, scientists and clinicians (I’m using these terms loosely) busied themselves with classifying and theorizing the origins, meanings, morbidity, and potential of phantoms as a way of building a set of knowledges and practices about bodies, minds and brains. By the middle decades of the twentieth century, phantom sensation began to give way to phantom pain: apparitions of missing limbs were no longer simply enlivened, but were contorted and painful. In initial formulations the pain was attributed to the posture or position of the absent limb at the time of the amputation. As the nineteenth century gave way to the twentieth, this approach, which suggested an association between the absent limb and the body’s peripheral memory of its amputation, shifted towards a more psychodynamic approach in which the pain of the missing limb could be interpreted symbolically as the mind’s inability to accept its loss.

But beyond this psychoanalytic approach phantom pain became emergent in relation to the development of pain as a medical specialty with all of the developments in measurement, classification and treatments that the growth of a new specialty entails. Crawford associates the emergence of pain within phantoms as a result of more sophisticated understandings of pain generally by physicians. She describes the way in which this new phenomena (phantom pain) was classified in terms of intensity through her discussion of the development of the McGill Pain Questionnaire (MPQ). The MPQ was designed to link specific symptoms (in this case kinds of pain) to specific disease processes. Because phantom “pain” could not correlate with a specific process—in part because of the very absence of the part that suffered—its presence added dimensions to understanding the ways that pain operated and could be experienced, and led to novel interventions pushing the treatment of symptoms associated with limb phantoms out of psychodynamic specialities and into pain management and neurology. For instance at Walter Reed, where I do my research, phantom pain is treated with anti-seizure medication such as gabapentin (Neurontin).

For a time this approach seemed stable, but new research into the brain, from mid-century and accelerating through the 1990s—the Decade of the Brain—revised scientific understandings of phantom pain and decentered understandings of the mind. This work proposed that the brain contained a geography of the body, that amputation involved rewriting of the map onto different parts of the body’s landscape, and that pain was a potential consequence of this rewriting. At the same time new therapeutic modalities were developed in part through innovations in understanding the role that mirror neurons played in the body’s ability to perceive the outside world.

In the discussion on developments in neuroscience Crawford introduces Caspar’s notion of a “work object” (which shares some features with a ‘boundary object’), an object around which people organize their work practices and create meaning. Phantom pain, as well as prosthetics, can be investigated as ideas or objects in this context, but also are revealed as dense networks of social relations between individuals with amputations, amputated limbs, pain, prosthetic technology and the scientific activities of discovery and innovation. Connected closely to this is Crawford’s linkage, through Latour’s work, between phantom sensations or pains as actants. An actant is any agent that can associate or disassociate with other agents. This is particularly useful because of the way that Crawford sees phantoms as leaking around the edges of the taxonomic containers that are constructed to contain them. Despite their late introduction into the text these ideas permeate Crawford’s work and provide a helpful way to think through the development, flourishing and recession of ideas about phantoms that she details in her account.

As an example of how biopolitics produces its object this book is a tour de force. Crawford moves deftly through historical periods and across disciplines, demonstrating how limb loss is rendered both visible and meaningful by scientists and clinicians. She makes and supports the argument that the experience of missing a limb is rendered legible by clinicians and then widely adopted, both by people with limb loss and broader publics.

There are limitations to Crawford’s approach. With the brief exception of the introduction, we are rarely exposed to the voices of people with limb loss without the mediation of research scientists and clinicians. Of course in ethnographic work voices of research interlocutors are rarely available unedited, but the absence of this community is nonetheless regrettable, in part because it would have been interesting to see the way that the meanings and classifying strategies applied by clinicians and scientists were experienced and lived by individuals with limb loss. This would be particularly useful in light of Crawford’s focus on the way that the category of the phantom leaks around the edges of the various containers developed since the nineteenth century.

Despite this concern Crawford’s book is a very important contribution to discussions about the construction of a technoscape made murky by the churning of constant discovery and innovation. Her conclusion, which focuses on both rare forms of phantoms (including penile amputations), and the potential presences or absences of phantoms in situations of elective amputation (among “apotemnophiles”), allows Crawford to consider how knowledge is produced and generates meaning for both researchers and for those it describes.

 

Seth Messinger is an anthropologist and Research Director at the Center for Rehabilitation Sciences Research of the Department of Rehabilitation at the Uniformed Services University of the Health Sciences.

Top of the Heap: Elly Teman by Hannah Gibson

7 Janvier 2016 - 7:18pm

For this installment of the Top of the Heap series, I spoke with Elly Teman, a medical anthropologist specializing in the anthropology of reproduction and a senior lecturer in the Department of Behavioural Science at Ruppin Academic Center in Israel.

Elly Teman

The top of my heap this past summer has been stacked with a list of documentary films on topics related to the anthropology of reproduction while preparing syllabi for the coming year. I find that students engage much closer through film than through reading only, and that incorporating films in my courses makes for lively discussion. Thus, I am constantly on the lookout for new films to add to my collection. Most of the films I use are available on YouTube, Vimeo, or the director’s website, so I ask the students to watch the film on their own the week before a specific class. They submit a paragraph the night before class about their reaction to the film and its connection to class readings, or in response to a question I pose regarding the film. In class we discuss the film together with the lecture and readings for that day; this gives them a lot of vivid examples to illustrate theoretical concepts and to make cross-cultural comparisons.

Some of the films below are ones I have not yet seen or have not yet been able to obtain a copy of. Others are “musts” on my list for any course on the anthropology of reproduction or for a section on reproduction for a medical anthropology course. I am listing them according to some of the topics I like to cover in my class.

The Politics of Reproduction – Romania and China

I like to get students thinking about this topic through films that illuminate very obviously the way that the body politic exerts control over individual women’s bodies and populations. I like to use the examples of Ceauşescu’s Romania and of China’s one-child policy and then give readings about Israel so that we can compare and look at the way social institutions play different roles as arms of the state. Some films at the top of my list about Romania are Children of the Decree (2005) about Ceauşescu’s Decree 770 in 1966 forbidding contraception and most abortions in Romania, 4 Months, 3 Weeks and 2 Days (2007) about a woman who helps her friend get an illegal abortion in Ceausescu’s Romania, and Edet Belzberg’s 2001 Children Underground about the abandoned, homeless street children that resulted from the decree. These films would work well with readings from Gail Kligman’s work.

For China, my list includes Small Happiness: Women of a Chinese Village (1984) and some of the documentaries about the abandoned girls resulting from China’s one-child policy, including The Dying Rooms (1995) about orphanages where baby girls are left to die, China’s Stolen Children (2007) about the situation ten years after the aforementioned film, China’s Lost Girls (2005), and Evan Grae Davis’s documentary It’s a Girl (2012) about female infanticide in India and China. The director also has a TED talk that I have bookmarked.

It is often worthwhile when discussing these films to bring these issues closer to home and to get students thinking comparatively about the limits on women’s reproductive freedom in one’s own country. For Israel, there are so many televised Hebrew-language documentary films that are very well done, but I won’t write about them here because they have not been translated. It is a pity, because these are very powerful films about the emotional costs of IVF, parents procuring sperm of their dead son to create grandchildren, Israeli surrogacy and surrogacy-related travel, prenatal testing and the quest for the “perfect baby”, and more. One popular film that has translation is Amos Gitai’s Kadosh about infertility among Israel’s ultra-Orthodox religious sector.

For U.S. courses, I would recommend the Demi Moore segment of the original If These Walls Could Talk about a woman seeking an illegal abortion in the US in the 1950s (1996). Other films on my “body politic” heap are documentaries including Gabriela Quiros’s (2014) film Beautiful Sin about infertile couples struggling against the ban on IVF in Costa Rica (this could be paired with readings from the work of Elizabeth Roberts on IVF in Ecuador), Barbara Attie and Janet Goldwater’s 2006 documentary Rosita about the struggle against the Nicaraguan and Costa Rican governments to obtain an abortion for a 9-year-old girl who became pregnant as the result of a rape, and the 2005 documentary by Gillian Aldrich and Jennifer Baumgardner I Had an Abortion.

Forced Sterilization

I have also been following this opening on the politics of reproduction with the subject of forced sterilization using the 1993 film The Lynchburg Story about forced eugenic sterilization of the so-called “feeble minded” in the United States between 1927-72, but there is a long list of films on my heap on this subject. These include La Operación (1982) about the mass sterilization of Puerto Rican women during the 1950s and 1960s and No More Babies For Life (2012) about the sterilization of Mexican-origin women at the Los Angeles County-USC Medical Center during the 1960s and 1970s. My list is also heavy with documentary films about forced sterilization of indigenous women in Peru, including A Woman’s Womb: The politics of Reproduction (2011), Scars of Deception (2014), and the older 1970s Bolivian film Blood of the Condor.

Menstruation and Menopause

Another topic on which I have been collecting a heap of films to see is menstruation. My favorite part of teaching the anthropology of reproduction is teaching Emily Martin’s book The Woman in the Body especially the chapter “Metaphors of Menstruation and Menopause”. It helps to have films to get the students thinking about menstruation through an anthropological lens. Usually I use the Tampax Pearl commercials, in which a middle-aged “mother nature” chases young and carefree ladies with her “annoying gift”, and we analyze these commercials through Martin’s framework of the body as a metaphor of failed capitalist production. However, there are several films I am looking forward to checking out in order to use them for this topic: Diana Fabianova’s 2009 film, The Moon Inside You looking at why the topic of menstruation is taboo (as well as the director’s TED talk), Giovanna Chesler’s 2006 Period: The End of Menstruation? about menstrual suppression and its cultural and medical side effects, and Jay Rosenblatts’ 1996 Period Piece. I also want to see Amit Virmani’s 2013 Menstrual Man about one man’s campaign against the cultural taboos surrounding menstruation and women’s limited access to sanitary pads in India, Vanessa Meyer’s 2010 short film Cup U about the menstrual cup, and the soon to be released Period Stories (2016).

And what is menstruation without menopause? This heap also includes the documentary Hot Flash Havoc (2012), The M Word (2014), The Menopause and Me (2015), Face it! (Ingeborg Beugel, The Netherlands, 2014), and Menopause: the Musical (there are some versions on youtube).

Medicalization of Childbirth

One film that I use in every medical anthropology course is Abby Epstein and Riki Lake’s 2008 The Business of Being Born. I haven’t yet found any film comparable in its impact on students. I have tried using the shorter classroom edition, but it doesn’t do the trick because it does not have the full portrayal of the home births that they capture in the full-length film. This film is perfect for teaching together with readings on the medicalization of childbirth, especially the work of Robbie Davis-Floyd. Still, there are a lot of films on my “to-see” list that might supplement this film or could be used to discuss hospital birth and homebirth, particularly the film Birth Story: Ina May Gaskin and the Farm Midwives (2012) about the legendary midwife, Ina May Gaskin’s TED Talk, and the documentary Freedom for Birth about the imprisoned Hugarian obstetrician-midwife Agnes Gereb (2012). Also Orgasmic Birth (2009), Pregnant in America: A Nation’s Miscarriage (2008), Born in the USA (2000), Birth As We Know It (2006), and the sequel to The Business of Being Born.

I know that my students all watch the Israeli version of the reality show A Baby Story so I am also hoping for the time to check out some of the reality TV shows about pregnancy and birth such as Pregnant in Heels, I’m Pregnant And…, Secretly Pregnant, MTV’s 16 and Pregnant, I Didn’t Know I Was Pregnant, etc., which could be great for an assignment in an anthropology of reproduction class.

New Reproductive Technologies

Since my own research is on surrogacy, I like to show Zippi Brand Frank’s 2009 HBO documentary Google Baby about gestational surrogacy in India as it clearly maps out the movement across national borders, social classes, and bodies involved in transnational surrogacy arrangements. My “to-see” heap includes Rebecca Haimowitz and Vaishali Sinha’s 2011 documentary Made in India, about an American couple and their Indian surrogate, and Surabhi Sharma’s 2012 documentary, commissioned by the Sama Resource Group for Women and Health in New Delhi, Can We See the Baby Bump Please? about the Indian surrogacy industry. There are also several films on surrogacy in the United States that I am hoping to get a chance to see, including The Center for Bioethics and Culture’s Breeders: A Subclass of Women (2014) and Gillian Goslinga’s ethnographic film The Child the Stork Brought Home (1997). Any of these could work well with the new ethnographic work coming out on surrogacy in India.

There are also some interesting films about egg donation and donor children. I especially want to see the recent films on egg freezing including Marieke Schellart’s Eggs for Later (Netherlands 2011) and Amanda Burell’s Motherhood on Ice (2014), as well as Jennifer Lahl’s Eggsploitation (2010, 2013) about the egg donation industry. Jerry Rothwell’s film Donor Unknown (PBS Independent Lens 2011) about teenagers who meet one another through the Donor Sibling Registry and search for their sperm donor is thought-provoking, haunting, and makes for heated debate in class. My heap of “to-see” docs on this subject also includes Deirdre Fishels’ Sperm Donor X: A Different Conception (2010) about women who used donor sperm to conceive, the documentary Sperm Donor (Style Network 2011) about a donor coming to terms with telling his fiancé about his many offspring, Jennifer Lahl’s 2011 Anonymous Father’s Day, and the MTV six-part 2013 documentary Generation Cryo about a teenager meeting her 15 half-siblings through the DSR. Any of these might go well with readings from any of the sociological and anthropological work on eggs and sperm, commodification, and globalization there is out there now, such as work by Rene Almeling, Marcia Inhorn, Charis Thompson, and Lisa Jean Moore.

Finally, I like to finish my course with a lecture on reproductive justice in order to tie the anthropological insights in with a reproductive justice framework. I highly recommend Linda Layne’s “Combating the Criminalization of Stillbirth and Miscarriage: A Conversation with Lynn Paltrow, J.D., Executive Director of National Advocates for Pregnant Women” which is part of Layne’s invaluable educational television series Motherhood Lost: Conversations.

 

Elly Teman is a medical anthropologist specializing in the anthropology of reproduction. She is a senior lecturer in the Department of Behavioral Science at Ruppin Academic Center in Israel. She has been a postdoctoral research fellow at the University of California, Berkeley and at the University of Pennsylvania. Her primary research is on surrogate motherhood in Israel, ultra-Orthodox Jewish women’s experiences of pregnancy and prenatal testing, religious conversion in prison, life stories, and Jewish folklore. Her ethnography of gestational surrogacy arrangements, Birthing a Mother: the Surrogate Body and the Pregnant Self, was published by the University of California Press in 2010.  Birthing a Mother received the Eileen Basker Memorial Prize (Society for Medical Anthropology), the Stirling Book Prize (Society for Psychological Anthropology), the Diana Forsythe Prize (Awarded by the Society for the Anthropology of Work and the Committee on the Anthropology of Science, Technology, and Computing), and was a finalist for the Foundation of the Sociology of Health and Illness Book Prize (British Sociological Association). Elly is a member of CAR, the Council on Anthropology of Reproduction, and she thanks members of the CAR listserv and of the ReproNetwork Listserv for sharing such great documentary film suggestions over the years.

 

Image: The Cinema Museum, London

In the Journals December 2015 – Part II by Melanie Boeckmann

7 Janvier 2016 - 11:43am

Find the first half of December’s post here.

New Genetics and Society

Beyond and within public engagement: a broadened approach to engagement in biobanking

Jose A. Cañada, Aaro Tupasela, Karoliina Snell

Social studies on biobanking have traditionally focused on public engagement, that is, engagement with donors, patients and the general public as an important factor of sustainability. In this article, we claim that, in order to fully understand the way biobanks work, it is necessary to pay attention to a number of other actors, which have an equal, if not greater, impact on their practices and strategies. This means taking a broadened approach to biobank engagement. By using data collected from interviews with different biobank experts based in five different countries (UK, Canada, Finland, Spain and Iceland), we identify seven communities, including the public, that emerge as relevant. Such relationships condition the way biobanks develop, act and plan. The discussion illustrates how the relationships with those seven communities are articulated. We conclude that there is a need for a broadened approach to biobank engagement in order to understand biobank sustainability.

Adoptable packages and the cost of their adoption: the craftwork of making the right cells for regenerative medicine in Japan

Koichi Mikami

The goal of regenerative medicine is to utilize biological properties of cells for therapeutic purposes. Although substantial international investment has been made in this biomedical technology, the issue of which type of cells best serves for these purposes still remains unsettled. Adopting a conceptual framework from Clarke and Fujimura that the rightness of “tools” needs to be socially constructed, this paper examines the interactions of various actors in Japan and demonstrates two kinds of craftwork as examples of attempts to construct the rightness of the cells for the technology. In such attempts, the actors not only produced adoptable packages but also assumed responsibility for their dissemination. However, because the packages are tied to their original practices as well as to their working environment, others would have to bear considerable cost of articulation to adopt them for their job and hence the rightness of the cells has not been firmly upheld.

Parent’s expectations and experiences of resemblance through donor conception

Astrid Indekeu

In the field of donor conception, matching is a practice that involves choosing gametes or embryos in such a way as to minimize physical differences between the donor and the recipients. This practice serves to create resemblance between child and social parent/s, to meet the societal norm of biological relationship and legitimize the family form.

This study focused on parents’ experiences and expectations of the clinical practice of matching and (non)resemblance with their donor-offspring. Results are based on accounts of 18 heterosexual donor-conceiving parents (11 couples) with a donor-offspring between 8 and 32 years old.

Findings suggest that resemblance is more than just a strategy to achieve social legitimization of the donor-conceived family. Resemblance also plays a role in the creation of family bonds and kinship. This suggests that the social reasoning behind matching should at least be complemented by a psychological understanding of relatedness and connectedness.

Closure of a human tissue biobank: individual, institutional, and field expectations during cycles of promise and disappointment

Neil Stephens, Rebecca Dimond

Biobanks are increasingly being established to act as mediators between patient-donors and researchers. In practice, some of these will close. This paper details the experiences of one such bank. We report interviews with the bank’s staff and oversight group during the period when the bank ceased biobanking activity, reconfigured as a disseminator of best practice, before then closing altogether. The paper makes three distinct contributions: (i) to provide a detailed account of the establishment, operational challenges, and eventual closure of the bank, which makes clear the rapid turnover in a cycle of promise and disappointment; (ii) to explore this in terms of a novel analytical focus upon field, institutional, and individual expectations; and (iii) to use this typology to demonstrate how, even after the bank’s closure, aspects of its work were reconfigured and reused in new contexts. This provides a unique empirical analysis of the under-reported issue of biobank closure.

 

Philosophy, Ethics, and Humanities in Medicine

Doctor can I buy a new kidney? I’ve heard it isn’t forbidden: what is the role of the nephrologist when dealing with a patient who wants to buy a kidney?

Giorgina Barbara Piccoli, Laura Sacchetti, Laura Verzè, Franco Cavallo

Organ trafficking is officially banned in several countries and by the main Nephrology Societies. However, this practice is widespread and is allowed or tolerated in many countries, hence, in the absence of a universal law, the caregiver may be asked for advice, placing him/her in a difficult balance between legal aspects, moral principles and ethical judgments.

In spite of the Istanbul declaration, which is a widely shared position statement against organ trafficking, the controversy on mercenary organ donation is still open and some experts argue against taking a negative stance. In the absence of clear evidence showing the clinical disadvantages of mercenary transplantation compared to chronic dialysis, self-determination of the patient (and, with several caveats, of the donor) may conflict with other ethical principles, first of all non-maleficence. The present paper was drawn up with the participation of the students, as part of the ethics course at our medical school. It discusses the situation in which the physician acts as a counselor for the patient in the way of a sort of “reverse” informed consent, in which the patient asks advice regarding a complex personal decision, and includes a peculiar application of the four principles (beneficence, non-maleficence, justice and autonomy) to the donor and recipient parties.

A charter for biomedical research ethics in a progressive, caring society

Sylvie Vandoolaeghe, Alessandra Blaizot, Danie Boudiguet, Valérie Bougault, Eduardo Dei Cas, Benoît Foligne, Anne Goffard, Hélène Lefranc, Bénédicte Oxombre, Thomas Trentesaux, Bernard Vandenbunder, Isabelle Wolowczuk, Laurence Delhaes

Background

Given that advances in research continuously raise new ethical issues, a multidisciplinary working group of investigators involved in biomedical research has gathered to discuss and compare ethical viewpoints in their daily practice.

Methods

The working group has drafted a Charter for Ethics in Biomedical Research that encompasses all the steps in the research process, i.e. from the initial idea to analysis and publication of the results.

Results

Based on key principles for ethically responsible research, the Charter may serve as a tool for performing research, discussing research issues and training researchers.

Conclusions

The Charter should stimulate researchers to think about their responsibility for research in a progressive, caring society.

Medical professionalism: what the study of literature can contribute to the conversation

Johanna Shapiro, Lois L. Nixon, Stephen E. Wear, David J. Doukas

Medical school curricula, although traditionally and historically dominated by science, have generally accepted, appreciated, and welcomed the inclusion of literature over the past several decades. Recent concerns about medical professional formation have led to discussions about the specific role and contribution of literature and stories. In this article, we demonstrate how professionalism and the study of literature can be brought into relationship through critical and interrogative interactions based in the literary skill of close reading. Literature in medicine can question the meaning of “professionalism” itself (as well as its virtues), thereby resisting standardization in favor of diversity method and of outcome. Literature can also actively engage learners with questions about the human condition, providing a larger context within which to consider professional identity formation. Our fundamental contention is that, within a medical education framework, literature is highly suited to assist learners in questioning conventional thinking and assumptions about various dimensions of professionalism.

‘Trust my doctor, trust my pancreas’: trust as an emergent quality of social practice

Simon Cohn

Background

Growing attention is being paid to the importance of trust, and its corollaries such as mistrust and distrust, in health service and the central place they have in assessments of quality of care. Although initially focussing on doctor-patient relationships, more recent literature has broadened its remit to include trust held in more abstract entities, such as organisations and institutions. There has consequently been growing interest to develop rigorous and universal measures of trust.

Methods

Drawing on illustrative ethnographic material from observational research in a UK diabetes clinic, this paper supports an approach that foregrounds social practice and resists conceiving trust as solely a psychological state that can be divorced from its context. Beyond exploring the less-than-conscious nature of trust, the interpretations attend to the extent to which trust practices are distributed across a range of actors.

Results

Data from clinical encounters reveal the extent to which matters of trust can emerge from the relationships between people, and sometimes people and things, as a result of a wide range of pragmatic concerns, and hence can usefully be conceived of as an extended property of a situation rather than a person. Trust is rarely explicitly articulated, but remains a subtle feature of experience that is frequently ineffable.

Conclusions

A practice approach highlights some of the problems with adopting a general psychological or intellectualist conception of trust. In particular, assuming it is a sufficiently stable internal state that can be stored or measured not only transforms a diffuse and often ephemeral quality into a durable thing, but ultimately presents it as a generic state that has meaning independent of the specific relationships and context that achieve it. Emphasising the context-specific nature of trust practices does not dismiss the potential of matters of trust, when they emerge, to be transposed to other contexts. But it does highlight how, on each occasion, trust as a relational quality is ways ‘done’ or ‘achieved’ anew.

“Arm in arm with righteousness”

Iona Heath

My title comes from Joseph Conrad who, in his 1913 novel Chance, wrote:

You know the power of words. We pass through periods dominated by this or that word – it may be development, or it may be competition, or education, or purity or efficiency or even sanctity. It is the word of the time. Well just then it was the word Thrift which was out in the streets walking arm in arm with righteousness, the inseparable companion and backer up of all such national catch-words, looking everybody in the eye as it were [1].

Today, the word is quality, out in the streets walking arm in arm with righteousness, with all the self-satisfaction that implies. The fundamental problem with all such national catch-words is that they all too seldom have real substance and all too often become slogans used in the exercise of power.

An explanation and analysis of how world religions formulate their ethical decisions on withdrawing treatment and determining death

Susan M Setta, Sam D Shemie

Introduction

This paper explores definitions of death from the perspectives of several world and indigenous religions, with practical application for health care providers in relation to end of life decisions and organ and tissue donation after death. It provides background material on several traditions and explains how different religions derive their conclusions for end of life decisions from the ethical guidelines they proffer.

Methods

Research took several forms beginning with a review of books and articles written by ethicists and observers of Bön, Buddhism, Christianity, Hinduism, Indigenous Traditions, Islam, Judaism, Shinto and Taoism. It then examined sources to which these authors referred in footnotes and bibliographies. In addition, material was gathered through searches of data bases in religious studies, general humanities, social sciences and medicine along with web-based key word searches for current policies in various traditions.

Results

Religious traditions provide their adherents with explanations for the meaning and purpose of life and include ethical analysis for the situations in which their followers find themselves. This paper aims to increase cultural competency in practitioners by demonstrating the reasoning process religions use to determine what they believe to be the correct decision in the face of death.

Conclusion

Patterns emerge in the comparative study of religious perspectives on death. Western traditions show their rootedness in Judaism in their understanding of the human individual as a finite, singular creation. Although the many branches of Western religions do not agree on precisely how to determine death, they are all able to locate a moment of death in the body. In Eastern traditions personhood is not defined in physical terms. From prescribing the location of death, to resisting medical intervention and definitions of death, Eastern religions, in their many forms, incorporate the beliefs and practices that preceded them. Adding to the complexity for these traditions is the idea that death is a process that continues after the body has met most empirical criteria for determining death. For Hinduism and Buddhism, the cessation of heart, brain and lung function is the beginning of the process of dying—not the end.

Explaining and responding to the Ebola epidemic

Solomon Benatar

The Ebola epidemic in West Africa is not merely a biomedical problem that can be seen in isolation and dealt with only through emergency medical rescue processes. The ethical dilemmas surfaced by this epidemic are also not confined to the usual micro-ethical problems associated with medical care and medical research. The pandemic, as one of many manifestations of failed human and social development that has brought the world to dangerous ‘tipping points’, requires deep introspection and action to address upstream causal processes.

Luria revisited: cognitive research in schizophrenia, past implications and future challenges

Yuliya Zaytseva, Raymond CK Chan, Ernst Pöppel, 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.

The right to health, health systems development and public health policy challenges in Chad

Jacquineau Azétsop, Michael Ochieng

Background

There is increasing consensus that the right to health can provide ethical, policy and practical groundings for health systems development. The goals of the right to health are congruent with those of health systems development, which are about strengthening health promotion organizations and actions so as to improve public health. The poor shape and performance of health systems in Chad question the extent of realization of the right to health. Due to its comprehensiveness and inclusiveness, the right to health has the potential of being an organizational and a normative backbone for public health policy and practice. It can then be understood and studied as an integral component of health systems development.

Method

This paper uses a secondary data analysis of existing documents by the Ministry of Public Health, Institut National de la Statistique, des Etudes Economiques et Démographiques (INSEED), the Ministry of Economy and Agence Française de Cooperation to analyze critically the shape and performance of health systems in Chad based on key concepts and components of the right to health contained in article 12 of the International Covenant on Economic, Social and Cultural Rights, and on General Comment 14.

Results

The non-realization of the right to health, even in a consistently progressive manner, raises concerns about the political commitment of state officials to public health, about the justice of social institutions in ensuring social well-being and about individual and public values that shape decision-making processes. Social justice, democratic rule, transparency, accountability and subsidiarity are important groundings for ensuring community participation in public affairs and for monitoring the performance of public institutions.

Conclusion

The normative ideals of health systems development are essentially democratic in nature and are rooted in human rights and in ethical principles of human dignity, equality, non-discrimination and social justice. These ideals are grounded in an integrated vision of society as a place for multi-level interactions, where government plays its role by equitably providing institutions and services that ensure people’s welfare. Inter-sectoral collaboration, which calls for a conceptual shift in health and public policy, can be instrumental in improving health systems through concerted efforts of various governmental institutions and civil society.

The ethics of animal research: a survey of pediatric health care workers

Ari R Joffe, Meredith Bara, Natalie Anton, Nathan Nobis

Introduction

Pediatric health care workers (HCW) often perform, promote, and advocate use of public funds for animal research (AR). We aim to determine whether HCW consider common arguments (and counterarguments) in support (or not) of AR convincing.

Design

After development and validation, an e-mail survey was sent to all pediatricians and pediatric intensive care unit nurses and respiratory therapists (RTs) affiliated with a Canadian University. We presented questions about demographics, support for AR, and common arguments (with their counterarguments) to justify the moral permissibility (or not) of AR. Responses are reported using standard tabulations. Responses of pediatricians and nurses/RTs were compared using Chi-square, with P < .05 considered significant.

Results

Response rate was 53/115(46%) (pediatricians), and 73/120(61%) (nurses/RTs). Pediatricians and nurses/RTs are supportive of AR. Most considered ‘benefits arguments’ sufficient to justify AR; however, most acknowledged that counterarguments suggesting alternative research methods may be available, or that it is unclear why the same ‘benefits arguments’ do not apply to using humans in research, significantly weakened ‘benefits arguments’. Almost all were not convinced of the moral permissibility of AR by ‘characteristics of non-human-animals arguments’, including that non-human-animals may not be sentient, or are simply property. Most were not convinced of the moral permissibility of AR by ‘human exceptionalism’ arguments, including that humans have more advanced mental abilities, are of a special ‘kind’, can enter into social contracts, or face a ‘lifeboat situation’. Counterarguments explained much of this, including that not all humans have these more advanced abilities [the argument from species overlap], and that the notion of ‘kind’ is arbitrary [e.g., why are we not of the kind ‘sentient animal’ or ‘subject-of-a-life’]. Pediatrician and nurse/RT responses were similar.

Conclusions

Most respondents were not convinced of the moral permissibility of AR when given common arguments and counterarguments from the literature. HCW should seriously consider arguments on both sides of the AR debate.

 

Science as Culture

Intentions, Expectations and Institutions: Engineering the Future of Synthetic Biology in the USA and the UK

Pablo Schyfter, Jane Calvert

Synthetic biology is a field in-the-making: a loosely defined amalgamation of diverse disciplines, institutions and practices. Where some practitioners identify as scientists, others consider themselves engineers; while some extol the simplicity of standardised biology, others dismiss it as counterproductive. Three different communities in synthetic biology (epistemics, sceptical constructors and committed engineers) can be distinguished by way of their intentions, practices and promises. Synthetic biologists’ promises shape policy-makers’ expectations, which in turn shape institutional arrangements. These institutional arrangements then influence practitioners’ promises in an iterative fashion. In both the USA and the UK, ‘committed engineers’ have succeeded in gaining support for an engineering-based and industry-centred vision of synthetic biology, which promises applications and economic growth. This group’s intentions and promises have influenced policy-makers’ expectations, which, in turn, have driven the major institutional developments in synthetic biology in the two countries. However, while the promises of the economic potential of this vision of the field have been embraced at policy levels, other aspects of this vision, such as the importance of enabling infrastructure, are often overlooked. In a sense, committed engineers’ promises and rhetoric have been too successful, because they have overshadowed the institutional and infrastructural developments needed to make them a reality.

Accountability from Somewhere and for Someone: Relating with Care

Sonja Jerak-Zuiderent

In contemporary care institutions, accountability procedures and devices are increasingly pervasive and considered crucial for monitoring quality. Such accountability practices are based on the idea that accountability and care belong in two separate domains. The distinction between accountability ‘from nowhere and for everyone’ and accountability ‘from somewhere and for someone’ problematises this implicit split. Taking seriously the observations of everyday caring and accounting by care professionals, who resist splitting care and accountability from the outset, demands a reconceptualisation of the relation between care and accountability as reciprocal and co-emerging. Both accountability and care are highly circumstantial, emerging, relational notions and it is not clear-cut who or what cares or accounts for what, whom, where and how. Paying due attention to the generative interweaving of accounting and caring, that is, to the narrative work of care professionals, affords the potential to turn universal abstract norms of what good care should be into meaningful care. Creatively reconnecting care experiences, observations, records and relations generates accountability with care. Care professionals do this by daring to prioritise speculatively what matters most in a specific situation without falling back on the reassurance of clear-cut norms of good care and by daring to admit that even while prioritising a certain course of action, they might not know its consequences. Such a speculative commitment and the inclusion of the researcher’s experiences in trying to be accountable are crucial for studying accountability as a matter of care and as relatedness in the making.

Data Karaoke: Sensory and Bodily Skills in Conference Presentations

Alexandra Supper

At the International Conference on Auditory Display (ICAD), an interdisciplinary conference dedicated to sonification and the use of non-speech sound to represent information, presenters make use of a variety of bodily skills and representations that appeal to the senses of their audience. In many established disciplines, the conventions that guide the use of these skills and representations are taken for granted; but within ICAD, they are often explicitly negotiated. The practice of ‘data karaoke’, in which researchers mimic the sound of a sonification with their own voice, is particularly instructive for understanding these negotiations, and the ICAD community more generally. Data karaoke fulfils five functions: embodiment, highlighting, illustration, authorisation and integration. To make sense of data karaoke, we have to understand the institutional and intellectual environment in which this peculiar practice has emerged; but conversely, an understanding of data karaoke can help us throw new light on epistemological debates about the hierarchy of the senses: data karaoke is a multisensory skill engaging the whole body of the sonification researcher, and thus calls into question the dominant epistemological discourse within the ICAD community, in which the different sensory modalities are framed as competitors. The ICAD case shows that studying conferences as sites where bodies interact, and presentations as performances involving the bodies and senses of scientists, helps us to understand not only the conference cultures, but also the ideals about scientific scholarship and academic authority held by scientific communities.

Cyborgs in the Everyday: Masculinity and Biosensing Prostate Cancer

Gill Haddow, Emma King, Ian Kunkler, Duncan McLaren

An in vivo biosensor is a technology in development that will assess the biological activity of cancers to individualise external beam radiotherapy. Inserting such technology into the human body creates cybernetic organisms; a cyborg that is a human–machine hybrid. There is a gap in knowledge relating to patient willingness to allow automated technology to be embedded and to become cyborg. There is little agreement around what makes a cyborg and less understanding of the variation in the cyborgisation process. Understanding the viewpoint of possible beneficiaries addresses such gaps. There are currently three versions of ‘cyborg’ in the literature (i) a critical feminist STS concept to destabilise power inherent in dualisms, (ii) an extreme version of the human/machine in science-fiction that emphasises the ‘man’ in human and (iii) a prediction of internal physiological adaptation required for future space exploration. Interview study findings with 12 men in remission from prostate cancer show a fourth version can be used to describe current and future sub-groups of the population; ‘everyday cyborgs’. For the everyday cyborg the masculine cyborg status found in the fictionalised human–machine related to issues of control of the cancer. This was preferred to the felt stigmatisation of being a ‘leaker and bleeder’. The willingness to become cyborg was matched with a having to get used to the everyday cyborg’s technological adaptations and risks. It is crucial to explore the everyday cyborg’s sometimes ambivalent viewpoint. The everyday cyborg thus adds the dimension of participant voice currently missing in existing cyborg literatures and imaginations.

Conceptualising Decadent Technology: A Case Study of Path Dependence in Radiotherapy

Lisa Wood

Large-scale investments in health technologies often have limited evidence for effectiveness when first introduced. Nevertheless, professional and public discourses often present the advantages of such investments, with unknown risks, as necessary and entailing significant improvement. Such discourses are evident with the introduction of the Linac Adapted Conebeam Imager (LACI), introduced to improve the accuracy of radiotherapy treatments. From one perspective, the introduction of such technologies can be considered to be decadent since there is limited, if any, evidence of improvement of current standards and procedures, yet they are promoted as the latest and best technologies for solving societal problems. Connecting the concepts of decadence to those of path dependence, through the case of the LACI, enables the exploration of the ‘technical interrelatedness’ of technological changes. Building on the concept of path dependence, it is possible to demonstrate how introducing a closely related technology does not only become a low-risk course of action. Rather change is demanded (but not determined) as well as potential alternative systems being obscured. With decadent technologies, any future changes are not only dependent upon past introductions; but also they create a need for future changes. Such a view demonstrates how these technologies may not necessarily offer any improvements, but rather contribute to the creation of ongoing demand for unproven technologies. As a result they may encourage the introduction of increasingly complex technologies.

 

Social History of Medicine

Women Searchers of the Dead in Eighteenth- and Nineteenth-century London

Wanda S. Henry

From plague epidemics in Elizabethan England to cholera outbreaks in the early Victorian era, women determined causes of death for London parishes. Despite criticism about lack of medical training, parishes continued to rely upon women searchers and expanded their responsibilities during the eighteenth century while looking not to midwives and nurses but female relatives of parish workers to fill open positions. Sextonesses and pew keepers became searchers of the dead and served lengthy terms in office. Historians have assumed that Parliament established the General Register Office to supplant searchers with medical men, acting as registrars. However, the transition away from the bills depended more upon the parish’s loss of monopoly on the death business than the medical failings of women searchers. By the mid-nineteenth century, the undertaking industry managed London’s dead, and undertakers, rather than medical men, replaced women searchers as reporters of cause of death.

Harnessing the Power of Difference: Colonialism and British Chronic Disease Research, 1940–1975

Martin D. Moore

Recent studies of post-war chronic disease epidemiology have generally focused on the histories of research in the USA and UK. Using the archival records of a major British funding body, the Colonial Medical Research Committee and its successor the Tropical Medical Research Board, this article demonstrates the advantages of bringing a post-colonial analytic to this historiography. It highlights how the administrative and medical interests in population difference at the centre of the new epidemiology came to map onto political apparatus initially created to know, reform and govern colonial subjects. Although detached from imperial aims, British medical scientists nonetheless attached value to colonial populations on the basis of British benefit and turned various sites into laboratories to extract it. This relationship did not die with the end of imperial rule. British scientists continued to pursue chronic disease epidemiology in former colonies well into the post-war period, informing debates about Britain’s own public health concerns.

 

Social Science & Medicine 

“Thinking too much”: A systematic review of a common idiom of distress

Bonnie N. Kaiser, Emily E. Haroz, Brandon A. Kohrt, Paul A. Bolton, Judith K. Bass, Devon E. Hinton

Idioms of distress communicate suffering via reference to shared ethnopsychologies, and better understanding of idioms of distress can contribute to effective clinical and public health communication. This systematic review is a qualitative synthesis of “thinking too much” idioms globally, to determine their applicability and variability across cultures. We searched eight databases and retained publications if they included empirical quantitative, qualitative, or mixed-methods research regarding a “thinking too much” idiom and were in English. In total, 138 publications from 1979 to 2014 met inclusion criteria. We examined the descriptive epidemiology, phenomenology, etiology, and course of “thinking too much” idioms and compared them to psychiatric constructs. “Thinking too much” idioms typically reference ruminative, intrusive, and anxious thoughts and result in a range of perceived complications, physical and mental illnesses, or even death. These idioms appear to have variable overlap with common psychiatric constructs, including depression, anxiety, and PTSD. However, “thinking too much” idioms reflect aspects of experience, distress, and social positioning not captured by psychiatric diagnoses and often show wide within-cultural variation, in addition to between-cultural differences. Taken together, these findings suggest that “thinking too much” should not be interpreted as a gloss for psychiatric disorder nor assumed to be a unitary symptom or syndrome within a culture. We suggest five key ways in which engagement with “thinking too much” idioms can improve global mental health research and interventions: it (1) incorporates a key idiom of distress into measurement and screening to improve validity of efforts at identifying those in need of services and tracking treatment outcomes; (2) facilitates exploration of ethnopsychology in order to bolster cultural appropriateness of interventions; (3) strengthens public health communication to encourage engagement in treatment; (4) reduces stigma by enhancing understanding, promoting treatment-seeking, and avoiding unintentionally contributing to stigmatization; and (5) identifies a key locally salient treatment target.

Transgender stigma and health: A critical review of stigma determinants, mechanisms, and interventions

Jaclyn M. White Hughto, Sari L. Reisner, John E. Pachankis

Rationale

Transgender people in the United States experience widespread prejudice, discrimination, violence, and other forms of stigma.

Objective

This critical review aims to integrate the literature on stigma towards transgender people in the US.

Results

This review demonstrates that transgender stigma limits opportunities and access to resources in a number of critical domains (e.g., employment, healthcare), persistently affecting the physical and mental health of transgender people. The applied social ecological model employed here elucidates that transgender stigma operates at multiple levels (i.e., individual, interpersonal, structural) to impact health. Stigma prevention and coping interventions hold promise for reducing stigma and its adverse health-related effects in transgender populations.

Conclusion

Additional research is needed to document the causal relationship between stigma and adverse health as well as the mediators and moderators of stigma in US transgender populations. Multi-level interventions to prevent stigma towards transgender people are warranted.

New norms new policies: Did the Adelaide Thinkers in Residence scheme encourage new thinking about promoting well-being and Health in All Policies?

Fran Baum, Angela Lawless, Colin MacDougall, Toni Delany, Dennis McDermott, Elizabeth Harris, Carmel Williams

Health systems have long been criticised for focussing on curing rather than preventing disease. This paper examines to what extent the Adelaide Thinkers in Residence (ATiR) scheme contributed to the change in norms whereby promoting well-being and a strategy to achieve this – Health in All Policies (HiAP) – was adopted by the South Australian (SA) State Government from 2007. The data presented in this paper are drawn from a five year (2012–2016) detailed mixed methods case study of the SA HiAP initiative which involved document analysis, interviews and workshops with public servants and political actors. We adapt the framework used by Finnemore and Sikkink (1998) which explains how norm changes can lead to political changes in international affairs. We also use Kingdon’s concept of policy entrepreneurs to determine whether these ideas moved to an implementable initiative with the help of both a specific ATiR program on HiAP and the broader TiR scheme which promoted a series of innovations relevant to health. The process involved the ATiR reinforcing the work of local norm entrepreneurs with that of powerful external policy entrepreneurs, adapting the discourse about the value of prevention and promoting well-being so that it fitted with the dominant economic one. The powerful organisational platform of the ATiR, which was under the Department of the Premier and Cabinet and linked to the South Australian Strategic Plan (SASP) was used to advance these ideas. The case study offers important lessons for other jurisdictions on how to shift policy to encourage intersectoral approaches to health.

Gendering gametes: The unequal contributions of sperm and egg donors

Rosanna Hertz, Margaret K. Nelson, Wendy Kramer

This paper compares three groups of gestational mothers who relied on gametes from donors they did not know. The three groups are women who have conceived with donor sperm and their own eggs, women who have conceived with donor eggs and a partner’s sperm, and women who have conceived with embryos composed of both donor eggs and donor sperm. The paper explores three issues. First, it considers whether intending parents select sperm and egg donors for different attributes both when they are chosen as the only donor and when they are chosen as donors contributing to an entire embryo. Second, it examines how women imagine the donor. Finally, it looks at how women conceptualize the donor as an individual who contributes to their child’s characteristics. Two significant findings emerged in this analysis of survey data. First, the data show that gametes are gendered with different attributes both when those gametes are separate and even more so when seen as complementary parts of a whole. Second, the data show that women minimize the impact of the egg donor (both when a sole contribution and especially when part of the complementary whole) and thus ignore the influence or impact of the egg donor relative to how they make sense of the influence or impact of the sperm donor. The data for this study comes from an online survey developed by the authors.

Is socioeconomic incorporation associated with a healthier diet? Dietary patterns among Mexican-origin children in the United States

Molly A. Martin, Jennifer L. Van Hook, Susana Quiros

With each successive generation in the United States, Mexican-origin families lose their initial dietary advantages. Focusing on children’s diets, we ask whether greater socioeconomic status (SES) can help buffer Mexican-origin children in immigrant families from negative dietary acculturation or whether it exacerbates these dietary risks. Pooling data from the 1999 to 2009 waves of the continuous National Health and Nutrition Examination Survey, we test whether the association between generational status and Mexican-origin children’s nutrition varies by the family’s SES. When predicting children’s overall dietary quality using the Healthy Eating Index (2010) and predicting unhealthy dietary patterns, we find stronger evidence of segmented assimilation, whereby greater family average SES is associated with better diets across generations of Mexican-origin children. High-status Mexican-origin parents appear able to buffer their children against generational dietary declines documented in the acculturation literature.

Therapeutic landscapes of home: Exploring Indigenous peoples’ experiences of a Housing First intervention in Winnipeg

Dominic A. Alaazi, Jeffrey R. Masuda, Joshua Evans, Jino Distasio

In this paper, we explore Indigenous perspectives of culture, place, and health among participants in a landmark Canadian Housing First initiative: At Home/Chez Soi (AHCS) project. Implemented from 2009 to 2013 in Winnipeg and four other Canadian cities, AHCS was a multi-city randomized control trial that sought to test the effectiveness of Housing First as a model for addressing chronic homelessness among people living with mental illnesses. As Winnipeg’s homeless population is over 70% Indigenous, significant efforts were made to accommodate the culturally specific health, spiritual, and lifestyle preferences of the project’s Indigenous participants. While a daunting challenge from an intervention perspective, Winnipeg’s experience also provides a unique opportunity to examine how Indigenous participants’ experiences can inform improved housing and mental health policy in Canada. In our study, conducted independently from, but with endorsement of the AHCS project, we utilized a case study approach to explore the experiences of the project’s Indigenous participants. Data were collected by means of in-depth qualitative interviews with Indigenous participants (N = 14) and key informant project staff and investigators (N = 6). Our exploratory work demonstrates that despite relative satisfaction with the AHCS intervention, Indigenous peoples’ sense of place in the city remains largely disconnected from their housing experiences. We found that structural factors, particularly the shortage of affordable housing and systemic erasure of Indigeneity from the urban sociocultural and political landscape, have adversely impacted Indigenous peoples’ sense of place and home.

Relationship dynamics around depression in gay and lesbian couples

Mieke Beth Thomeer, Corinne Reczek, Debra Umberson

Research on intimate relationship dynamics around depression has primarily focused on heterosexual couples. This body of work shows that wives are more likely than husbands to offer support to a depressed spouse. Moreover, when wives are depressed, they are more likely than husbands to try and shield their spouse from the stress of their own depression. Yet, previous research has not examined depression and relationship dynamics in gay and lesbian couples. We analyze in-depth interviews with 26 gay and lesbian couples (N = 52 individuals) in which one or both partners reported depression. We find evidence that dominant gender scripts are both upheld and challenged within gay and lesbian couples, providing important insight into how gender operates in relation to depression within same-sex contexts. Our results indicate that most gay and lesbian partners offer support to a depressed partner, yet lesbian couples tend to follow a unique pattern in that they provide support both as the non-depressed and depressed partner. Support around depression is sometimes viewed as improving the relationship, but if the support is intensive or rejected, it is often viewed as contributing to relationship strain. Support is also sometimes withdrawn by the non-depressed partner because of caregiver exhaustion or the perception that the support is unhelpful. This study points to the importance of considering depression within gay and lesbian relational contexts, revealing new ways support sustains and strains intimate partnerships. We emphasize the usefulness of deploying couple-level approaches to better understand depression in sexual minority populations.

School-level contextual predictors of bullying and harassment experiences among adolescents

Amy L. Gower, Barbara J. McMorris, Marla E. Eisenberg

Background

Bullying and prejudice-based harassment frequently occur in school settings and have significant consequences for the health and wellbeing of young people. Yet far fewer studies have examined the role of the school environment in peer harassment than individual factors. This multilevel study examined associations between a variety of school-level risk and protective factors and student-level reports of bullying and prejudice-based harassment during adolescence.

Methods

Data come from 8th, 9th, and 11th graders who completed the 2013 Minnesota Student Survey (N = 122,180 students nested in 505 schools). School-level variables were created by aggregating student report data in five areas: academic orientation to school, internal assets, teacher–student relationship quality, feelings of safety at school, and receipt of disciplinary action.

Results

Results indicated that youth attending schools with a higher proportion of students with strong internal assets had lower odds of nearly every type of bullying and prejudice-based harassment assessed when compared to youth attending schools with a lower proportion of students with strong internal assets. Additionally, the proportion of students feeling unsafe at school was a fairly consistent risk factor for most types of peer harassment.

Conclusion

Findings support the idea that prevention programs aimed at improving school-wide internal assets and feelings of safety at school may be key prevention points.

Hymen reconstruction as pragmatic empowerment? Results of a qualitative study from Tunisia

Verina Wild, Hinda Poulin, Christopher W. McDougall, Andrea Stöckl, Nikola Biller-Andorno

Hymen reconstruction surgery (HR), while ethically controversial, is now available in many countries. Little clinical evidence and hardly any surgical standards support the intervention. Nearly as scarce is social science research exploring women’s motivations for the intervention, and health care professionals’ justifications for its provision.

In order to better understand decision-making processes, we conducted semi-structured interviews in metropolitan Tunis, in 2009, with six women seeking the procedure, four friends who supported such women, four physicians who perform the operation, and one midwife.

Health care professionals and patient companions expressed moral ambivalence about HR: although they could comprehend the individual situation of the women, they expressed concern that availability of the procedure might further entrench the patriarchal norms that compel the motivation for seeking HR in the first place. Some women seeking HR shared this concern, but felt it was not outweighed by their personal aims, which were to marry and become mothers, or to overcome past violent sexual experiences. The women felt HR to be uniquely helpful in achieving these aims; all made pragmatic decisions about their bodies in a social environment dominated by patriarchal norms. The link between HR and pervasive gender injustice, including the credible threat of serious social and physical harm to women perceived to have failed to uphold the norm of virginity before marriage, raises questions about health care professionals’ responsibility while facing requests for HR. Meaningful regulatory guidance must acknowledge that these genuine harms are at stake; it must do so, however, without resorting to moral double standards. We recommend a reframing of HR as a temporary resource for some women making pragmatic choices in a context of structural gender injustice. We reconfirm the importance of factual sexual and reproductive education, most importantly to counter distorted beliefs that conflate an “intact hymen” with virginity.

Illness related wage and productivity losses: Valuing ‘presenteeism’

Wei Zhang, Huiying Sun, Simon Woodcock, Aslam Anis

One source of productivity loss due to illness is the reduced “quantity” or “quality” of labor input while working, often referred to as presenteeism. Illness-related presenteeism has been found to be potentially more costly than absenteeism. To value presenteeism, existing methods use wages as a proxy for marginal productivity at the firm level. However, wage may not equal marginal productivity in some scenarios. One instance is when a job involves team production and perfect substitutes for workers are not readily available. Using a Canadian linked employer-employee survey (2001–2005), we test whether relative wage equals relative marginal productivity among team workers and non-team workers with different frequencies of presenteeism (reduction at work due to illness). For the pooled cross-sectional estimates (2001, 2003, 2005) we obtain 13,755 observations with 6842 unique workplaces. There are 6490 observations for the first differences estimates from the odd years and 5263 observations for the first differences estimates from 2001 to 2002 and 2003 to 2004. We find that in both small and large firms, team workers with frequent reductions at work are less productive but earn similarly compared with non-team workers without reductions. We also find that in small firms, workers with occasional work reductions are more productive than workers without reductions, but the reverse is true in large firms. The study findings partially support the literature stating that productivity loss resulting from employee presenteeism could exceed wages if team work is involved.

Effectiveness of group discussions and commitment in improving cleaning behaviour of shared sanitation users in Kampala, Uganda slums

Innocent K. Tumwebaze, Hans-Joachim Mosler

Rationale and objective

Access to and use of hygienic shared sanitation facilities is fundamental in reducing the high risk of diseases such as diarrhoea and respiratory infections. We evaluated the effectiveness of group discussions and commitment in improving the cleaning behaviour of shared sanitation users in three urban slums in Kampala, Uganda. The study follows the risk, attitudes, norms, abilities and self-regulation (RANAS) model of behaviour change and some factors of the social dilemma theory.

Methods

A pre-versus post-intervention survey was conducted in three slums of Kampala, Uganda, between December 2012 and September 2013. From the pre-intervention findings, users of dirty sanitation facilities were randomly assigned to discussions, discussions + commitment and control interventions. The interventions were implemented for 3 months with the aim of improving cleaning behaviour. This paper provides an analysis of 119 respondents who belonged to the intervention discussion-only (n = 38), discussions + commitment (n = 41) and the control (no intervention, n = 40) groups.

Results

Compared to the control, discussions and discussions + commitment significantly improved shared toilet users’ cleaning behaviour. The rate of improvement was observed through behavioural determinants such as cleaning obligation, cleaning ease, cleaning approval and affective beliefs.

Conclusion

Our study findings show that group discussions and commitment interventions derived from RANAS model of behaviour change are effective in improving the shared sanitation users’ cleaning behaviour.

Nationwide expansion of a financial incentive program on fruit and vegetable purchases among Supplemental Nutrition Assistance Program participants: A cost-effectiveness analysis

Ruopeng An

High prices remain a formidable barrier for many people, especially those of low socioeconomic status, to adopt a healthier diet. The Food, Conservation, and Energy Act of 2008 mandated the U.S. Department of Agriculture (USDA) to conduct a pilot study to assess the impact of making fruits and vegetables more affordable for households in the Supplemental Nutrition Assistance Program (SNAP). Based on the USDA final report of the Healthy Incentives Pilot (HIP), a large-scale randomized trial in 2011–2012 that provided 30% rebate on targeted fruits and vegetables to 7500 study participants enrolled in the SNAP, we constructed a decision model to evaluate the cost-effectiveness of an expansion of the HIP to all SNAP households nationwide. The estimated life-time per capita costs of the HIP to the Federal government is $1323 in 2012 U.S. dollars, and the average gains in quality-adjusted life expectancy to a SNAP participant is 0.082 quality-adjusted life year (QALY), resulting in an incremental cost-effectiveness ratio (ICER) of $16,172 per QALY gained. Sensitivity analysis using Monte Carlo simulations indicates a 94.4% and 99.6% probability that the estimated ICER would be lower than the cost-effective threshold of $50,000 and $100,000 per QALY gained, respectively. Moreover, the estimated ICER of the HIP expansion tends to be competitive in comparison to other interventions that aimed at promoting fruit/vegetable intake among adult population. Findings from this study suggest that a nationwide expansion of the HIP is likely to nudge SNAP households towards purchasing and consuming more targeted fruits and vegetables. However, diet behavior modification is proportional to price change. When people’s actual eating behaviors and what dietary guidelines recommend differ by several folds, even a 30% rebate closes just a small fraction of that gap and has limited beneficial impact on participants’ weight management, disease prevention, and health-related quality of life.

Migration as a social determinant of health for irregular migrants: Israel as case study

Yonina Fleischman, Sarah S. Willen, Nadav Davidovitch, Zohar Mor

More than 150,000 irregular migrants reside in Israel, yet data regarding their utilization of and perceived barriers to health care services are limited. Drawing on semi-structured interviews conducted with 35 irregular migrant adults between January and September 2012, this article analyzes the role of migration as a social determinant of health for irregular migrants, and especially asylum seekers. We analyze two kinds of barriers faced by migrants when they attempt to access health care services: barriers resulting directly from their migration status, and barriers that are common among low-income communities but exacerbated by this status. Migration-related barriers included a lack of clear or consistent legislation; the threat of deportation; the inability to obtain work permits and resulting poverty and harsh living and working conditions; and discrimination. Barriers exacerbated by migrant status included prohibitive cost; poor and confusing organization of services; language barriers; perceived low quality of care; and social isolation. These findings support recent arguments that migrant status itself constitutes a social determinant of health that can intersect with other determinants to adversely affect health care access and health outcomes. Findings suggest that any meaningful effort to improve migrants’ health will depend on the willingness of clinicians, public health officials, and policymakers to address the complex array of upstream political and socio-economic factors that affect migrants’ health rather than focusing on narrower questions of access to health care.

Maternal healthcare in context: A qualitative study of women’s tactics to improve their experience of public healthcare in rural Burkina Faso

Lise Rosendal Østergaard

Improving the use of public maternal health facilities to prevent maternal death is a priority in developing countries. Accumulating evidence suggests that a key factor in choosing a facility-based delivery is the collaboration and the communication between healthcare providers and women. This article attempts to provide a fine-grained understanding of health system deficiencies, healthcare provider practices and women’s experiences with maternal public healthcare.

This article presents findings from ethnographic research conducted in the Central-East Region of Burkina Faso over a period of eight months (January–August 2013). It is based on monthly interviews with 14 women from village (10) and town (4) and on structured observations of clinical encounters in three primary healthcare facilities (two rural and one urban) (23 days). In addition, 13 health workers were interviewed and 11 focus groups with women from village (6) and town (5) were conducted (48 participants).

Guided by an analytic focus on strategies and tactics and drawing on recent discussions on the notion of ‘biomedical security’, the article explores what tactics women employ in their efforts to maximize their chances of having a positive experience with public maternal healthcare. The synthesis of the cases shows that, in a context of poverty and social insecurity, women employ five tactics: establishing good relations with health workers, being mindful of their ‘health booklet’, attending prenatal care consultations, minimizing the waiting time at the maternity unit and using traditional medicines. In this way, women strive to achieve biomedical security for themselves and their child and to preserve their social reputation. The study reveals difficulty in the collaboration and communication between health workers and women and suggests that greater attention should be paid to social relations between healthcare providers and users.

Complex and dynamic times of being chronically ill: Beyond disease trajectories of patients with ulcerative colitis

Sergei Shubin, Frances Rapport, Anne Seagrove

This article contributes to health research literature by problematizing the linear, sequential and intelligible understanding of time in the studies of illness. Drawing on the work of Martin Heidegger, it attempts to overcome the problem of considering the time of illness as either a framework controlling patients’ experiences or a mind-dependent feature of their lives. The paper offers a conceptual analysis of the stories of ulcerative colitis patients from a recent clinical trial to present temporalities of illness as both objective and subjective, relational and dynamic. We attend to a combination of temporalities related to the ambiguous unfolding of illness and patients’ relationships with such an unpredictable world of changing bodies, medical practices and temporal norms. Furthermore, our analysis reveals openness of times and considers ulcerative colitis patients as constantly evolving beings, with multiple possibilities brought about by illness. The paper highlights co-existence of times and considers patients’ lives as incorporating a multiplicity of futures, presents and pasts. It concludes with conceptual observations about the consequences of developing complex approaches to illness in health research, which can better highlight the situatedness of patients and their multi-dimensional temporal foundations.

Avoiding cancer risk information

Amber S. Emanuel, Marc T. Kiviniemi, Jennifer L. Howell, Jennifer L. Hay, Erika A. Waters, Heather Orom, James A. Shepperd

Rationale

Perceived risk for health problems such as cancer is a central construct in many models of health decision making and a target for behavior change interventions. However, some portion of the population actively avoids cancer risk information. The prevalence of, explanations for, and consequences of such avoidance are not well understood.

Objective

We examined the prevalence and demographic and psychosocial correlates of cancer risk information avoidance preference in a nationally representative sample. We also examined whether avoidance of cancer risk information corresponds with avoidance of cancer screening.

Results

Based on our representative sample, 39% of the population indicated that they agreed or strongly agreed that they would “rather not know [their] chance of getting cancer.” This preference was stronger among older participants, female participants, and participants with lower levels of education. Preferring to avoid cancer risk information was stronger among participants who agreed with the beliefs that everything causes cancer, that there’s not much one can do to prevent cancer, and that there are too many recommendations to follow. Finally, the preference to avoid cancer risk information was associated with lower levels of screening for colon cancer.

Conclusion

These findings suggest that cancer risk information avoidance is a multi-determined phenomenon that is associated with demographic characteristics and psychosocial individual differences and also relates to engagement in cancer screening.

Reaching out to Ebola victims: Coercion, persuasion or an appeal for self-sacrifice?

Philippe Calain, Marc Poncin

The 2014–2015 Ebola crisis in West Africa has highlighted the practical limits of upholding human rights and common ethical principles when applying emergency public-health measures. The role of medical teams in the implementation of quarantine and isolation has been equivocal, particularly when such measures are opposed by communities who are coerced by the temporary suspension of civil liberties. In their encounters with Ebola victims, outreach teams face moral dilemmas, where the boundaries are unclear between coercion, persuasion and appeals for self-sacrifice. For those teams, we propose a set of practical recommendations aimed at respecting the autonomy of epidemic victims and easing tensions within communities. We recognize that some of these recommendations are progressively achievable, depending on the specific stage or setting of an outbreak. Yet with the increasing availability of experimental treatments and research interventions, weighing patients’ autonomy against the common good will become an even more pressing ethical obligation.

Social network typologies and mortality risk among older people in China, India, and Latin America: A 10/66 Dementia Research Group population-based cohort study

Ziggi Ivan Santini, Ai Koyanagi, Stefanos Tyrovolas, Josep M. Haro, Katherine L. Fiori, Richard Uwakwa, Jotheeswaran A. Thiyagarajan, Martin Webber, Martin Prince, A. Matthew Prina

Background

Restricted social networks have been associated with higher mortality in several developed countries but there are no studies on this topic from developing countries. This gap exists despite potentially greater dependence on social networks for support and survival due to various barriers to health care and social protection schemes in this setting. Thus, this study aims to examine how social network type at baseline predicts all-cause mortality among older adults in six Latin American countries, China, and India.

Methods

Population-based surveys were conducted of all individuals aged 65+ years in eight countries (Cuba, Dominican Republic, Peru, Venezuela, Mexico, Puerto Rico, China, and India). Data on mortality were obtained at follow-up (mean 3.8 years after cohort inception). Follow-up data for 13,891 individuals were analysed. Social network types were assessed using Wenger’s Practitioner Assessment of Network Type (PANT). Cox proportional hazard models were constructed to estimate the impact of social network type on mortality risk in each country, adjusting for socio-demographics, receipt of pension, disability, medical conditions, and depression. Meta-analysis was performed to obtain pooled estimates.

Results

The prevalence of private network type was 64.4% in urban China and 1.6% in rural China, while the prevalence of locally integrated type was 6.6% in urban China and 86.8% in rural China. The adjusted pooled estimates across (a) all countries and (b) Latin America showed that, compared to the locally integrated social network type, the locally self-contained [(b) HR = 1.24, 95%CI 1.01–1.51], family dependent [(a) HR = 1.13, 95%CI 1.01–1.26; (b) HR = 1.13, 95%CI 1.001–1.28], and private [(a) HR = 1.36, 95%CI 1.06–1.73; (b) HR = 1.45, 95%CI 1.20–1.75] social network types were significantly associated with higher mortality risk.

Conclusion

Survival time is significantly reduced in individuals embedded in restricted social networks (i.e. locally self-contained, family dependent, and private network types). Social care interventions may be enhanced by addressing the needs of those most at risk of neglect and deteriorating health. Health policy makers in developing countries may use this information to plan efficient use of limited resources by targeting those embedded in restricted social networks.

The Poly Implant Prothèse breast prostheses scandal: Embodied risk and social suffering

Cinzia Greco

This article examines the 2010 scandal surrounding the use and subsequent recall of adulterated Poly Implant Prothèse (PIP) silicone breast prostheses in France. It uses a mixed method approach that includes 12 interviews with French PIP prosthesis recipients, analyses of medical literature, policy documents of French and EU regulatory agencies, and an online forum for PIP recipients. These data are used to explain how the definition of “acceptable risk” in the silicone implants controversy of the 1990s in the US influenced the PIP scandal later on in France. Additionally, PIP recipients had an embodied experience of risk that clashed with the definition of risk used by authorities and some surgeons. The coverage of re-implantation was also defined at different policy levels, leading to variation in patients’ suffering. The combination of fraud and lack of recognition from part of the medical system constitutes an example of social suffering for the patients involved. The PIP scandal is a useful case for analyzing the interconnection of embodied experience and professional and public policy definitions of medical risk through the concepts of moral economy and biological citizenship.

Bearing the right to healthcare, autonomy and hope

Nkululeko Nkomo

In this article, I discuss the significance of understanding within the context of the campaign for affordable and accessible HIV/AIDS treatments in South Africa, the transformational effects of the interplay between political rationality and affect for HIV-positive subjectivities. The article focuses on the policy tactics, in 2001, of the lobbying for a policy to prevent mother-to-child-transmission of HIV. A close reading of the lobby groups’ rationalization of healthcare as a fundamental human right reveals a strategic attempt to recast a sense of helplessness into self-responsibilization, which concurrently involved nourishing hope in the preferred future for women with HIV to be afforded the right to individual choice associated with self-determination. Therefore, the struggle for a policy to prevent mother-to-child-transmission of HIV – an exemplary initiative to reconstitute HIV-positive subjectivity – maneuvered within both rationalizing and emotive spaces. Ongoing engagement of the broader campaign’s contribution to redefining being HIV-positive thus also necessitates accounting for the effects of the convergence of political rationality and emotion in its tactically emancipatory project.

An internet forum analysis of stigma power perceptions among women seeking fertility treatment in the United States

Natalie Anne Jansen, Jarron M. Saint Onge

Infertility is a condition that affects nearly 30 percent of women aged 25–44 in the United States. Though past research has addressed the stigmatization of infertility, few have done so in the context of stigma management between fertile and infertile women. In order to assess evidence of felt and enacted stigma, we employed a thematic content analysis of felt and enacted stigma in an online infertility forum, Fertile Thoughts, to analyze 432 initial threads by women in various stages of the treatment-seeking process. We showed that infertile women are frequently stigmatized for their infertility or childlessness and coped through a variety of mechanisms including backstage joshing and social withdrawal. We also found that infertile women appeared to challenge and stigmatize pregnant women for perceived immoral behaviors or lower social status. We argue that while the effects of stigma power are frequently perceived and felt in relationships between infertile women and their fertile peers, the direction of the enacted stigma is related to social standing and feelings of fairness and reinforces perceived expressions of deserved motherhood in the United States.

Internalized gay ageism, mattering, and depressive symptoms among midlife and older gay-identified men

Richard G. Wight, Allen J. LeBlanc, Ilan H. Meyer, Frederick A. Harig

Objective

In this paper we introduce the construct of “internalized gay ageism,” or the sense that one feels denigrated or depreciated because of aging in the context of a gay male identity, which we identify as an unexplored aspect of sexual minority stress specific to midlife and older gay-identified men.

Methods

Using a social stress process framework, we examine the association between internalized gay ageism and depressive symptoms, and whether one’s sense of mattering mediates or moderates this association, controlling for three decades of depressive symptom histories. The sample is 312 gay-identified men (average age = 60.7 years, range = 48–78, 61% HIV-negative) participating in the Multicenter AIDS Cohort Study (MACS) since 1984/85, one of the largest and longest running studies of the natural history of HIV/AIDS in the U.S., who provided contemporary (2012/13) reports of stress experiences.

Results

We find that internalized gay ageism can reliably be measured among these men, is positively associated with depressive symptoms net of an array of other factors that may also influence symptomatology (including depressive symptom histories), and mattering partially mediates but does not moderate its effect on depressive symptoms.

Conclusion

Midlife and older gay men have traversed unparalleled historical changes across their adult lives and have paved the way for younger generations of sexual minorities to live in a time of less institutionalized discrimination. Still, they are at distinct risk for feeling socially invisible and devalued in their later years.

Mortality among immigrants in England and Wales by major causes of death, 1971–2012: A longitudinal analysis of register-based data

Matthew Wallace, Hill Kulu

Recent research has found a migrant mortality advantage among immigrants relative to the UK-born population living in England and Wales. However, while all-cause mortality is useful to show differences in mortality between immigrants and the host population, it can mask variation in mortality patterns from specific causes of death. This study analyses differences in the causes of death among immigrants living in England and Wales. We extend previous research by applying competing-risks survival analysis to study a large-scale longitudinal dataset from 1971 to 2012 to directly compare causes of death. We confirm low all-cause mortality among nearly all immigrants, except immigrants from Scotland, Northern Ireland and the Republic of Ireland (who have high mortality). In most cases, low all-cause mortality among immigrants is driven by lower mortality from chronic diseases (in nearly all cases by lower cancer mortality and in some cases by lower mortality from cardiovascular diseases (CVD)). This low all-cause mortality often coexists with low respiratory disease mortality and among non-western immigrants, coexists with high mortality from infectious diseases; however, these two causes of death contribute little to mortality among immigrants. For men, CVD is the leading cause of death (particularly among South Asians). For women, cancer is the leading cause of death (except among South Asians, for whom CVD is also the leading cause). Differences in CVD mortality over time remain constant between immigrants relative to UK-born, but immigrant cancer patterns shows signs of some convergence to the cancer mortality among the UK-born (though cancer mortality is still low among immigrants by age 80). The study provides the most up-to-date, reliable UK-based analysis of immigrant mortality.

The development and implementation of a theory-informed, integrated mother-child intervention in rural Uganda

Daisy R. Singla, Elias Kumbakumba

Rationale

A randomised cluster effectiveness trial of a parenting intervention in rural Uganda found benefits to child development among children 12–36 months, relevant parenting practices related to stimulation, hygiene and diet, and prevented the worsening of mothers’ depressive symptoms. An examination of underlying implementation processes allows researchers and program developers to determine whether the program was implemented as intended and highlight barriers and facilitators that may influence replication and scale-up.

Objectives

The objectives of this study were to describe and critically examine a) perceived barriers and facilitators related to implementation processes of intervention content, training and supervision and delivery from the perspectives of delivery agents and supervisors; b) perceived barriers and facilitators related to enactment of practices from the perspective of intervention mothers participating in the parenting program; and c) whether the program was implemented as intended.

Methods

Semi-structured interviews were conducted at midline with peer delivery agents (n = 12) and intervention mothers (n = 31) and at endline with supervisors (n = 4). Content analysis was used to analyze qualitative data in terms of barriers and facilitators of intervention content, training and supervision, delivery and enactment. Additionally, mothers’ recall and enactment of practices were coded and analyzed statistically. Monitoring of group sessions and home visits were examined to reveal whether the program was implemented as intended.

Results

Among the program’s five key messages, ‘love and respect’ targeting maternal psychological well-being was the most practiced by mothers, easiest to implement by delivery agents, and mothers reported the most internal facilitators for this message. A detailed manual and structured monitoring forms were perceived to facilitate training, intervention delivery, and supervision. Interactive and active strategies based on social-cognitive learning theory were reported as facilitators to intervention delivery. Only program attendance, but not barriers, facilitators or message recall, was significantly positively related to message enactment. Monitoring of group sessions and home visits showed that the program was largely implemented as intended.

Conclusions

This implementation assessment revealed a number of important barriers and facilitators from the perspectives of delivery agents, supervisors and program participants. The methods and results are useful to examining and informing the content, delivery, and scaling up of the current program as well as future mother-child interventions in LMIC settings.

Modeling the community-level effects of male incarceration on the sexual partnerships of men and women

Andrea K. Knittel, Rachel C. Snow, Rick L. Riolo, Derek M. Griffith, Jeffrey Morenoff

Men who have been incarcerated experience substantial changes in their sexual behavior after release from jail and prison, and high rates of incarceration may change sexual relationship patterns at a community level. Few studies, however, address how rates of incarceration affect community patterns of sexual behavior, and the implications of those patterns for HIV and STD risk. We describe a “proof of principle” computational model that tests whether rates of male incarceration could, in part, explain observed population-level differences in patterns of sexual behavior between communities with high rates of incarceration and those without. This validated agent-based model of sexual partnership among 20–25 year old heterosexual urban residents in the United States uses an algorithm that incarcerates male agents and then releases them back into the agent community. The results from these model experiments suggest that at rates of incarceration similar to those observed for urban African American men, incarceration can cause an increase in the number of partners at the community level. The results suggest that reducing incarceration and creating a more open criminal justice system that supports the maintenance of inmates’ relationships to reduce instability of partnerships for men who are incarcerated may have important sexual health and public health implications. Incarceration is one of many social forces that affect sexual decision-making, and incarceration rates may have substantial effects on community-level HIV and STD risks.

How clinical rationing works in practice: A case study of morbid obesity surgery

Amanda Owen-Smith, Jenny Donovan, Joanna Coast

Difficulties in setting healthcare priorities are encountered throughout the world. There is no agreement on the most appropriate principles or methods for healthcare rationing although there is some consensus that it should be undertaken as systematically and accountably as possible. Although some steps towards achieving accountability have been made at the macro and meso level, at the consultation level rationing remains implicit and poorly understood. Using morbid obesity surgery as a case study, we observed a series of UK National Health Service consultations where rationing was ongoing and conducted in-depth interviews with doctors and patients (2011–2014). A longitudinal approach was taken to research and in total 22 consultations were observed and 78 interviews were undertaken. Sampling was undertaken purposively and theoretically and analyses were undertaken thematically. Clinicians needed to prioritise 55 patients from 450 eligible referrals, but disagreed over the extent to which clinical and financial factors were the driving force behind decision-making. The most prominent rationing technique observed in consultations was rationing by selection, but examples of rationing by delay, by deterrence, and by deflection were also commonplace. Although all clinicians sought to avoid rationing by denial, only six of the 22 patients recruited to the research were known to have been treated at the end of the three-year period. Most clinicians sought to manage rationing implicitly, and only one explained the link between decision-making criteria and financial constraints on care availability. Although existing frameworks for categorising NHS rationing techniques were useful in identifying implicit strategies, in practice these techniques over-lapped substantially and we have proposed a simpler framework for analysing NHS rationing decisions at the consultation level, which includes just three categories – rationing by exclusion, rationing by deterrence, and rationing by delay.

An individual-based rurality measure and its health application: A case study of Latino immigrants in North Florida, USA

Liang Mao, Jeanne-Marie R. Stacciarini, Rebekah Smith, Brenda Wiens

Rurality has been frequently noted by researchers as pathways to understand human health in rural and remote areas. Current measures of rurality are mostly oriented to places, not individuals, and have not accounted for individual mobility, thus inappropriate for studying health and well-being at an individual level. This research proposed a new concept of individual-based rurality by integrating personal activity spaces. A feasible method was developed to quantify individuals’ rural experience using household travel surveys and geographic information systems (GIS). For illustration, the proposed method was applied to understand the well-being and social isolation among rural Latino immigrants, who had participated in a community-based participatory research (CBPR) study in North Florida, USA. The resulting individuals’ rurality indices were paired with their scores of well-being and social isolation to identify potential associations. The correlation analysis showed that the proposed rurality can be related to the social isolation, mental and physical well-being of individuals in different gender groups, and hence could be a suitable tool to investigate rural health issues.

“Wan Kanyakla” (We are together): Community transformations in Kenya following a social network intervention for HIV care

Charles R. Salmen, Matthew D. Hickey, Kathryn J. Fiorella, Dan Omollo, Gor Ouma, Daniel Zoughbie, Marcus R. Salmen, Richard Magerenge, Robert Tessler, Harold Campbell, Elvin Geng, Monica Gandhi, Elizabeth A. Bukusi, Craig R. Cohen

Background

In sub-Saharan Africa, failure to initiate and sustain HIV treatment contributes to significant health, psychosocial, and economic impacts that burden not only infected individuals but diverse members of their social networks. Yet, due to intense stigma, the responsibility for managing lifelong HIV treatment rests solely, and often secretly, with infected individuals. We introduce the concept of “HIV risk induction” to suggest that social networks of infected individuals share a vested interest in improving long-term engagement with HIV care, and may represent an underutilized resource for improving HIV/AIDS outcomes within high prevalence populations.

Methods

In 2012, we implemented a ‘microclinic’ intervention to promote social network engagement in HIV/AIDS care and treatment. A microclinic is a therapy management collective comprised of a small group of neighbors, relatives, and friends who are trained as a team to provide psychosocial and adherence support for HIV-infected members. Our study population included 369 patients on ART and members of their social networks on Mfangano Island, Kenya, where HIV prevalence approaches 30%. Here we report qualitative data from 18 focus group discussions conducted with microclinic participants (n = 82), community health workers (n = 40), and local program staff (n = 39).

Results

Participants reported widespread acceptability and enthusiasm for the microclinic intervention. Responses highlight four overlapping community transformations regarding HIV care and treatment, namely 1) enhanced HIV treatment literacy 2) reduction in HIV stigma, 3) improved atmosphere for HIV status disclosure and 4) improved material and psychosocial support for HIV-infected patients. Despite challenges, participants describe an emerging sense of “collective responsibility” for treatment among HIV-infected and HIV-uninfected members of social networks.

Discussion

The lived experiences and community transformations highlighted by participants enrolled in this social network intervention in Western Kenya suggest opportunities to reframe the continuum of HIV care from a secretive individual journey into a network-oriented cycle of engagement.

 

Social Studies of Science

Genomic research, publics and experts in Latin America: Nation, race and body

Peter Wade, Carlos López-Beltrán, Eduardo Restrepo, Ricardo Ventura Santos

The articles in this issue highlight contributions that studies of Latin America can make to wider debates about the effects of genomic science on public ideas about race and nation. We argue that current ideas about the power of genomics to transfigure and transform existing ways of thinking about human diversity are often overstated. If a range of social contexts are examined, the effects are uneven. Our data show that genomic knowledge can unsettle and reinforce ideas of nation and race; it can be both banal and highly politicized. In this introduction, we outline concepts of genetic knowledge in society; theories of genetics, nation and race; approaches to public understandings of science; and the Latin American contexts of transnational ideas of nation and race.

País de gordos/país de muertos: Obesity, death and nation in biomedical and forensic genetics in Mexico

Vivette García-Deister, Carlos López-Beltrán

This article provides a comparison between genomic medicine and forensic genetics in Mexico, in light of recent depictions of the nation as a ‘país de gordos’ (country of the fat) and a ‘país de muertos’ (country of the dead). We examine the continuities and ruptures in the public image of genetics in these two areas of attention, health and security, focusing especially on how the relevant publics of genetic science are assembled in each case. Publics of biomedical and forensic genetics are assembled through processes of recruitment and interpellation, in ways that modulate current theorizations of co-production. The comparison also provides a vista onto discussions regarding the involvement of genetics in regimes of governance and citizenship and about the relationship between the state and biopower in a context of perceived health crisis and war-like violence.

Genetics against race: Science, politics and affirmative action in Brazil

Michael Kent, Peter Wade

This article analyses interrelations between genetic ancestry research, political conflict and social identity. It focuses on the debate on race-based affirmative action policies, which have been implemented in Brazil since the turn of the century. Genetic evidence of high levels of admixture in the Brazilian population has become a key element of arguments that question the validity of the category of race for the development of public policies. In response, members of Brazil’s black movement have dismissed the relevance of genetics by arguing, first, that in Brazil race functions as a social – rather than a biological – category, and, second, that racial classification and discrimination in this country are based on appearance, rather than on genotype. This article highlights the importance of power relations and political interests in shaping public engagements with genetic research and their social consequences.

Building the genomic nation: ‘Homo Brasilis’ and the ‘Genoma Mexicano’ in comparative cultural perspective

Michael Kent, Vivette García-Deister, Carlos López-Beltrán, Ricardo Ventura Santos,Ernesto Schwartz-Marín, Peter Wade

This article explores the relationship between genetic research, nationalism and the construction of collective social identities in Latin America. It makes a comparative analysis of two research projects – the ‘Genoma Mexicano’ and the ‘Homo Brasilis’ – both of which sought to establish national and genetic profiles. Both have reproduced and strengthened the idea of their respective nations of focus, incorporating biological elements into debates on social identities. Also, both have placed the unifying figure of the mestizo/mestiço at the heart of national identity constructions, and in so doing have displaced alternative identity categories, such as those based on race. However, having been developed in different national contexts, these projects have had distinct scientific and social trajectories: in Mexico, the genomic mestizo is mobilized mainly in relation to health, while in Brazil the key arena is that of race. We show the importance of the nation as a frame for mobilizing genetic data in public policy debates, and demonstrate how race comes in and out of focus in different Latin American national contexts of genomic research, while never completely disappearing.

Colombian forensic genetics as a form of public science: The role of race, nation and common sense in the stabilization of DNA populations

Ernesto Schwartz-Marín, Peter Wade, Arely Cruz-Santiago, Roosbelinda Cárdenas

This article examines the role that vernacular notions of racialized-regional difference play in the constitution and stabilization of DNA populations in Colombian forensic science, in what we frame as a process of public science. In public science, the imaginations of the scientific world and common-sense public knowledge are integral to the production and circulation of science itself. We explore the origins and circulation of a scientific object – ‘La Tabla’, published in Paredes et al. and used in genetic forensic identification procedures – among genetic research institutes, forensic genetics laboratories and courtrooms in Bogotá. We unveil the double life of this central object of forensic genetics. On the one hand, La Tabla enjoys an indisputable public place in the processing of forensic genetic evidence in Colombia (paternity cases, identification of bodies, etc.). On the other hand, the relations it establishes between ‘race’, geography and genetics are questioned among population geneticists in Colombia. Although forensic technicians are aware of the disputes among population geneticists, they use and endorse the relations established between genetics, ‘race’ and geography because these fit with common-sense notions of visible bodily difference and the regionalization of race in the Colombian nation.

Explaining the visible and the invisible: Public knowledge of genetics, ancestry, physical appearance and race in Colombia

Ernesto Schwartz-Marín, Peter Wade

Using data from focus groups conducted in Colombia, we explore how educated lay audiences faced with scenarios about ancestry and genetics draw on widespread and dominant notions of nation, race and belonging in Colombia to ascribe ancestry to collectivities and to themselves as individuals. People from a life sciences background tend to deploy idioms of race and genetics more readily than people from a humanities and race-critical background. When they considered individuals, people tempered or domesticated the more mechanistic explanations about racialized physical appearance, ancestry and genetics that were apparent at the collective level. Ideas of the latency and manifestation of invisible traits were an aspect of this domestication. People ceded ultimate authority to genetic science, but deployed it to work alongside what they already knew. Notions of genetic essentialism co-exist with the strategic use of genetic ancestry in ways that both fix and unfix race. Our data indicate the importance of attending to the different epistemological stances through which people define authoritative knowledge and to the importance of distinguishing the scale of resolution at which the question of diversity is being posed.

 

Subjectivity

Affect, memory and the transmission of trauma

Nathan M To, Elena Trivell

As it so happens with many promising projects, this special issue began long before we expected it to. Some serendipitous meetings in the early years of our graduate research sparked the mutual intrigue in our respective projects.

Affective geographies: Intergenerational hauntings, bodily affectivity and multiracial subjectivities

Ana Dragojlovic

The ‘incorporated, body memory’ of Indisch people in the diaspora grapples with memories of places left by their ancestors in the colonial Dutch East Indies in the aftermath of two wars, imprisonment and torture. I explore how Indisch travellers who do not purposely invest themselves in memory and genealogy work in their travels nevertheless become overwhelmed by the atmosphere of certain foreign places, and thus become ‘connected’ to the sense of loss that permeates their family’s history. I argue that affectivity needs to be discussed in the context of specific historical contingencies and that more attention needs to be paid to how affectivity is qualified and given meaning. I suggest we need to consider how affectivity operates through and across the binary oppositions of cognitive and affective, and intentional and non-intentional.

Haunting memories of war in Chinese cinema and diaspora: Visions of national trauma, power and autoethnographic collage

Nathan M To

The transgenerational ghosts of trauma from war, death and injustice within Chinese twentieth century history are carried through the remembrances and silences of mediated, diasporic visions of memory. These ghosts are visible through Chinese cinema at the intersection of modern China’s national interests, issues of power and the transnational distribution/production of official memory. These relations also suggest an insistence to produce particular national, unified identifications within the collective imaginations of spectators across generations in the Chinese diaspora. While some national wounds are ‘chosen’ and remembered (for example, Western colonialism, Imperial Japanese invasion), other collective traumas continue to be disavowed through cinematic memory productions. In response to these issues of historical rewriting and memory production, I propose alternate ways of seeing cinema through a critical autoethnography that juxtaposes other mediations of memory. I explore how this approach to cinema spectatorship enables diasporic subjects to interrogate how affective trauma transmits unconsciously across generations.

Affect, memory and the blue jumper: Queer languages of loss in Argentina’s aftermath of violence

Cecilia Sosa

From 1976 to 1983, a devastating military regime orchestrated the vanishing of 30 000 lives in Argentina, the infamous ‘disappeared’. For more than three decades, the families of the victims commanded the process of national mourning. In this essay, I suggest that the experience of loss has circulated from direct victims to ever-expanding audiences. To articulate this transition, I draw upon recent cultural productions and personal biographies touched by trauma. The story of a particular blue jumper touches upon the theatrical piece Mi vida después (2009), the film Los rubios (2003) and the TV show 23 Pares (2012). This body of work speaks about unconventional forms of care, which have emerged out of grief. It also traces the emergence of a new language to deal with loss. Ultimately, I suggest that disparate forms of ‘affective reparation’ have made room for a queer system of kinship beyond bloodline ties.

Producing memory: Narratives of suffering in the asylum experience

Virginia Signorini

When someone applies for asylum in Italy, he or she is supposed to compose a personal story – referred to literally as his or her ‘memory’ [memoria] – and to present it in front of a commission. There is a coralwork on the assembly of someone’s memory: memories are recounted orally, translated, reported, reconstructed and evaluated. This article focuses on the duality of memory production within the asylum procedure, analyzing the work of legal operators in relation to the act of remembering traumatic events. The former is based on the legal procedures for the recognition of international protection, while the latter is deeply related to the asylum seeker who is required to remember, demonstrate and perform memories, especially traumatic ones. On the one hand, memory represents the key to accessing social rights and thereby promotes the practice of citizenship. On the other hand, memory can be part of a victimisation process that reinforces the refugee label.

Psychosomatic feelings as memory practices

Elena Trivelli

I here explore the manifestation of problematic memories on a psychosomatic level, with a focus on the work of psychiatrist Franco Basaglia (1924–1980) in the Italian city of Gorizia. As Basaglia transformed the local asylum into a Therapeutic Community during the 1960s, the city became a nationally acclaimed pilot for alternative psychiatry. After he left in 1968, Gorizia’s characterisation in the media shifted from being a radical experiment to a failed revolution, and the city has since held an ambiguous relationship with this heritage. Using the data gathered through an ethnography conducted between 2011 and 2012, I suggest that the controversial vicissitudes of ‘the Basaglia experience’ and the attempts to erase their emotional weight in Gorizia have left traces that I frame as embodied remembering practices. In discussing psychosomatic expressions of social discomfort, I formulate a body that is both somatic and psychological, contributing to a field at the intersection between psychoanalysis, trauma and affect studies.

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.

In the Journals December 2015 – Catching up by Melanie Boeckmann

7 Janvier 2016 - 11:43am

Happy New Year to all Somatosphere readers! Hopefully you were able to take a break and came back refreshed and ready to tackle your reading list. Not sure where to start? Start here with the In the Journals December recap. Owing to its length, the round-up is divided into two separate posts. Find the second half here.

American Anthropologist

Sick Healers: Chronic Affliction and the Authority of Experience at an Ethiopian Hospital

Anita Hannig

At fistula hospitals in Ethiopia, patients who are not cured of their incontinence are hired as “nurse aides” to perform essential nursing duties in the ward and operating theater. An array of tensions surrounds the work of these women, tensions that are emblematic of their chronic—but secret—patient status. If accidentally disclosed, the women’s ongoing illness episodes sabotage their ability to administer treatment, such as injections. In contrast to classic anthropological accounts of wounded healers and therapeutic narratives about the virtues of experience-based care, I argue in this article that illness experience can also have a profoundly delegitimizing effect. Rather than attributing these dynamics to the alleged stigma that surrounds obstetric fistula sufferers, I delineate the various challenges to clinical authority that are epitomized by the figure of the sick healer. Nurse aides’ experiences with obstetric fistula proved to be a liability precisely because these experiences had not been resolved. Their chronic injuries raised questions both about their medical training and the efficacy of surgery. Attending to these Ethiopian health practitioners can hone our grasp of the professional dilemmas posed by chronic afflictions and contribute to our understanding of available ideologies at play in the global practice of biomedicine.

Medical Research Participation as Citizenship: Modeling Modern Masculinity and Marriage in a Mexican Sexual Health Study

Emily Wentzell

In this article, I discuss people’s use of medical research participation to perform and model modernity amid societal insecurity. I analyze data from interviews with heterosexual Mexican couples undertaken throughout men’s multiyear participation in a human papillomavirus (HPV) study. I argue that through activities like willingly undergoing genital examination and involving wives in husbands’ clinical visits, spouses used the study as a forum for performing ideals of modern gender and health, specifically companionate marriage and non-macho masculinities emphasizing male self-care. They also hoped to serve as role models for their children and for society at large. I discuss how specific elements of the Mexican context made fomenting social change through individual research participation seem possible: cultural narratives of the Mexican populace as a bioculturally homogenous whole; longstanding state efforts to modernize the population away from “traditional” gender and health practices; and ongoing failures of the “slippery State” to reliably provide the resources those practices required. In this context, participants framed themselves as a middle-class vanguard and experienced sexual health research as an act of citizenship through which they hoped to spur national progress despite state failures and the persistence of antimodern gender and health attitudes. 

Real People, Real Dogs, and Pigs for the Ancestors: The Moral Universe of “Domestication” in Indigenous Taiwan

Scott Simon

Humans and other animals often engage in multispecies relations that go beyond classical definitions of “domestication,” not least because there are political dimensions to those relations. External interference with human–animal relationships has notably been part of indigenous experiences of colonialism and postcolonialism. I examine here changes in the triangular relationship between humans, dogs, and pigs among the indigenous Seejiq Truku of Taiwan. Dogs, as hunting companions, are traditionally associated with men’s work; pigs, used in ancestral sacrifices, are aligned with women’s work. Pigs are mediators with the spirit world, as ancestor spirits respond to regular pig sacrifices by providing prey to hunters. Dogs are important as hunting companions that make it possible to catch boars and other animals. These human–animal relations have undergone change because of the integration of the Seejiq into new markets, the state, and legal regulations about both hunting and the keeping of animals. Human–animal relations also articulate with dynamics of gender and class in a changing political economy. The Seejiq frame their intrahuman and interspecies relations in terms of Gaya, their sacred ancestral law. By affirming the value of their particular type of multispecies community, the Seejiq demonstrate resilience and a strong defense of sovereignty.

Anthropology Meets Epigenetics: Current and Future Directions

Zaneta M. Thayer, Amy L. Non

Anthropologists are interested in understanding patterns of human variation, whether assessed along cultural, biological, linguistic, or material metrics. Epigenetics, the study of heritable chemical modifications to DNA, is an emerging approach that could enrich modern anthropological research. Epigenetic marks can change in response to many of the processes anthropologists study—for example, migration, nutritional stress, psychosocial stress, and social inequalities, to name a few. Thus, epigenetic processes could provide a biological explanation for the embodiment of such environmental experiences. Further, given the potential for epigenetic marks to be inherited across generations, it is possible that these marks facilitate intergenerational transmission of environmental information and therefore help to shape the direction of evolutionary change. In this article, we review some of the ways in which epigenetic methods have been successfully incorporated into anthropological and related studies as well as emphasize promising future directions and challenges for the use of epigenetic data across subfields of anthropology. While epigenetic data have great potential for informing anthropological research, we emphasize that a healthy skepticism is necessary given our still-nascent understanding of these processes.

Biology and Culture Beyond the Genome: Race, Racism, and Health

Amy L. Non, Clarence C. Gravlee

To what extent are health and disease shaped by genetic inheritance or by lived experience? Although it may sound like a medical question, it is fundamentally an anthropological one: it evokes old debates about nature and nurture and reminds us why cultural and biological anthropology sprang from the same discipline. As opposed to rehashing ideas from earlier centuries, current debate around genetic and environmental influences on health builds on recent discoveries about the complexity of disease and more nuanced understandings of the relations among genes, biology, and culture. However, these debates are also riddled with traps of reductionism and racial-genetic determinism. An integrative, anthropological approach that simultaneously leverages genetics and sociocultural data avoids these traps by recognizing (a) how culture shapes scientific interpretations of biological difference and (b) how systemic racism produces biological inequalities.

Anthropological Genetics

Andrew Kitchen, Amy L. Non, Clarence C. Gravlee, Connie J. Mulligan, Christina Warinner, Cecil M. Lewis Jr., Richard J. Bankoff, Heritiana D. D. Randrianatoandro, George H. Perry, Ripan S. Malhi, Alyssa C. Bader, Jennifer Raff

Over the past few decades, anthropologists have increasingly used genetic approaches in their efforts to understand humans and their primate relatives. Technological and theoretical developments in recent years have enabled anthropological geneticists to expand their field of inquiry far beyond what was thought possible even a few years ago (Crawford 2000). Most importantly, the cost of collecting large genetic data sets has dropped dramatically, aiding researchers to better investigate complex questions such as the organization of our genome and the diversity of microbes living in our guts. Spectacular recent genetic discoveries, moreover, have altered understandings of our relationships to other hominin lineages. For example, genetic data have shown that both Neandertals (Green et al. 2010) and a newly discovered Denisovan population (Krause et al. 2010; Meyer et al. 2012) interbred with modern humans.

Social and Behavioral Epigenetics

Connie J. Mulligan

Epigenetic changes are chemical modifications in the genome that influence how DNA is used to make proteins that affect phenotypes but epigenetic changes do not alter DNA sequences. Most epigenetic alterations include the attachment of a simple chemical to DNA at certain sites (methylation) throughout the genome and modifications to the proteins that help package and organize DNA in chromosomes (Handel et al. 2009). These epigenetic alterations may play a role in transforming social, psychological, behavioral, or biological stressors into changes in the production of proteins (gene expression). From an evolutionary perspective, this would make sense. Epigenetic modification of protein production may have evolved in higher-order organisms to provide short-term responses to changes in the environment without changing the underlying DNA sequence. In contrast, changes in DNA sequences occur infrequently over many generations and would provide long-term adaptations.

Microbiome and Health in Past and Present Human Populations

Christina Warinner, Cecil M. Lewis Jr.

The human body contains approximately 100 trillion cells, of which more than 90 percent are microbial. These underexplored and mostly nameless microorganisms, collectively known as the human microbiome, weigh about as much as the human brain and harbor an immense diversity of genes that far exceed the functional capacity of our own genome, playing critical roles in digestion, vitamin production, drug metabolism, and immunity. This intimate relationship between humans and their microbes is being increasingly described by evolutionary biologists as that of a holobiont, a large interdependent and symbiotic community that evolves as a unit and cannot be understood by examining independent members alone (Zilber-Rosenberg and Rosenberg 2008). In part to address this reconceptualization of what it means to be human, the National Institutes of Health Common Fund launched the Human Microbiome Project (HMP) in 2007, an initiative whose goal was to better understand the human holobiont by sequencing all symbiotic microorganisms in and on the human body (Peterson et al. 2009).

Engaging Native Americans in Genomics Research

Ripan S. Malhi, Alyssa C. Bader

Native North American groups have rarely been included in population-based genetic studies (Need and Goldstein 2009; Reich et al. 2012).3 The tumultuous history of interactions between scientists and the indigenous peoples of the Americas has likely contributed to the dearth of genomic data on Native North American peoples. For instance, researchers who have taken blood samples in indigenous communities have often not returned to report and explain research results (Wiwchar 2004). This exploitation of indigenous community members has created a mistrust of scientists (Schroeder et al. 2006) that leads many Native Americans to refuse to participate in genetic studies. Genomic scientists have reacted to indigenous mistrust by using methods that favor statistical workarounds (Wall et al. 2011) or convenience sampling rather than making the necessary effort to develop strong collaborative relationships with indigenous communities. As a result, the little genetic data that have been collected from Native American communities have not been very informative. Overall, Native Americans have opted out or have been left out of major genomic efforts to understand human genetic diversity from populations worldwide such as the International HapMap Project and the 1000 Genomes Project.

 

BioSocieties

Neuroscience beyond the laboratory: Neuro knowledges, technologies and markets

Tanja Schneider, Steve Woolgar

Neuroscientific research studies the brain as a novel means for accessing knowledge about human health, behaviour and social interaction. In recent years a broad range of academic disciplines, professional fields but also artists and lay groups (such as patient groups) have engaged with findings and technologies developed in neuroscience (for example, Frazzetto and Anker, 2009; Ortega, 2009).

Neuromarketing in the making: Enactment and reflexive entanglement in an emerging field

Tanja Schneider, Steve Woolgar

As the neurosciences make their way beyond the laboratory, they become influential in a wide range of domains. How to understand this process? What are the prospects for, and dynamics of, influence, uptake and rejection? This article reports our attempts to track the emergence of neurosciences with particular reference to the emergence of the field of neuromarketing. Our key initial tasks included the identification and definition of the field, the negotiation of access, and establishing relations with participants and informants. These tasks gave rise to what are often construed as familiar ‘methodological difficulties’, such as how to define the field and what to make of the reactions and responses of those involved in neuromarketing. In this article we present some of our experiences of researching the empirical materials of neuromarketing to assess different responses to ‘methodological difficulties’ in studying science and technologies in the making. We draw on analytic resources provided by Science and Technology Studies to address the challenge of studying emerging fields of science, practices and technologies. In particular, we draw on the concepts of multiplicity, performativity and practical ontology to argue that a particular approach to ‘methodological difficulties’ can actually enrich our research objectives. We suggest that reflexivity be understood, not predominantly as a methodological corrective to the problems of detecting an antecedent object of research; but as revealing some of the ways in which neuromarketing is enacted.

Commercialising neurofutures: Promissory economies, value creation and the making of a new industry

Paul Martin

The contemporary era is characterised by the development of knowledge economies in which scientific research and technical innovation are seen as the motor for growth and competitive advantage. Nowhere is this more apparent than in the biosciences, where the emerging bioeconomy is surrounded by high hopes, but remains an area with few working technologies entering routine use. These developments have focused scholarly attention on the performative role that sociotechnical expectations play in constituting new scientific and technological domains. However, relatively little is known about the role of expectations in the commercial development of new technologies, the commodification of knowledge and the creation of economic value. This article therefore seeks to address these questions by exploring the role of expectations in the creation of a new industrial sector based on the commercial development of neurotechnology in the United States. In particular, it will focus on the role of two types of ‘promissory organisation’ in the making of the neuroindustry, how different regimes of hope and promise have been constructed around distinct groups of companies, and the complex relationship between these regimes. In conclusion, some reflections will be made about the way in which high-technology industries, sociotechnical futures and new forms of promissory value are co-produced.

Sex, cash and neuromodels of desire

Isabelle Dussauge

In the twenty-first century’s biological culture, pleasure and desire seem to be widely reconceptualized as processes of the brain. The neurosciences of sex and money are two fields of crucial interest in this cerebralization of desire. On the basis of a cross-reading of neuroimaging studies of sexuality and of neuroeconomics, I analyze the specific notions of desire/pleasure at work in the neuroimaging experiments. What is lost, and what is claimed to be found, in the neurosciences of desire for sex and cash? With particular attention to notions of rewards, I argue that transfers of metaphors from neuroeconomics naturalize economized notions of sexual desire. Moreover, I argue that neuroeconomics and the neuroscience of sex essentialize desire as the drive of our behavior, and that this, in turn, relates to the neurosciences’ re-invention of the social in the terms of a late capitalist society.

Measurement devices and the psychophysiology of consumer behaviour: A posthuman genealogy of neuromarketing

Stefan Schwarzkopf

From the 1890s, psychophysiological measurement devices have played an important, but as yet under-theorized role in marketing and consumer research. Because of the recent advances made in neuromarketing, it is often assumed that these measurement devices ushered in a radically new understanding of the type of subjectivity that underlies consumer behaviour. I argue instead that a posthuman view of the relationship between brain, mind and behaviour underpinned neurophysiological research into consumers from its very beginning in the late nineteenth century. By tracing the biopolitical potentialities of neuromarketing back to the Fin-de-Siècle neurophysiological laboratory, I show that consumers’ bodies and later on their brains became reconfigured as part of a dispositif made up of laboratory-based artefacts (measurement devices) and new ways of seeing the human brain and human behaviour. This dispositif, the latest expression of which is neuromarketing, promised to empower marketing researchers and practitioners alike by fulfilling their dream of being able to bypass consumers’ verbalized cognition and instead draw upon the ‘truth’ of their physiological reactions.

Chinese biotech versus international ethics? Accounting for the China–America CRISPR ethical divide

Lijing Jiang, Hallam Stevens

In March 2015, molecular biologists concerned about the use of the new gene-editing technology called Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR) met in Napa, California to consider ethical issues raised by the new technique. Because the CRISPR-Cas9 system targets DNA at very specific sites with high efficiency, the technique offers a powerful way to cut and paste genes.

 

Body & Society

From Disfigurement to Facial Transplant – Identity Insights

David Le Breton

The face embodies for the individual the sense of identity, that is to say, precisely the place where someone recognizes himself and where others recognize him. From the outset the face is meaning, translating in a living and enigmatic form the absoluteness yet minuteness of individual difference. Any alteration to the face puts at stake the sense of identity. Disfigurement destroys the sense of identity of an individual who can no longer recognize himself or be recognized by others. Disfigurement places a mask on the face. The goal of a facial transplant consists of restoring an individual’s place in the world and reviving his taste for life, returning to him his ‘human shape’. Facial transplants raise essential anthropological questions such as ‘Who am I?’ and ‘To whom belongs this face that henceforth is mine?’

Rapid Home HIV Testing – Risk and the Moral Imperatives of Biological Citizenship

Jonathan Banda

This article examines the home rapid HIV test as a new practice of US biocitizenship. Via an analysis of discourse surrounding self-diagnostics, I conclude that while home HIV tests appear to expand consumer rights, they are in fact the vanguard of a new form of self-testing that carries a moral urgency to protect one’s own body and to manage societal risk. In addition, these tests extend biomedical authority into the private domain, while appearing to do the exact opposite. Furthermore, access to these tests may be stratified, contradicting the intent expressed by the manufacturer to reach populations in need of it most and reinforcing stigma against them. Lastly, diagnostics such as the rapid home HIV test represent new obligations for surveillance of one’s own health and that of others. The new public health effort to test the population at large has given rise to a new ‘risky’ population: the untested bodies.

Material Feminism, Obesity Science and the Limits of Discursive Critique

Megan Warin

This article explores a theoretical legacy that underpins the ways in which many social scientists come to know and understand obesity. In attempting to distance itself from essentialist discourses, it is not surprising that this literature focuses on the discursive construction of fat bodies rather than the materiality or agency of bodily matter. Ironically, in developing arguments that only critique representations of obesity or fat bodies, social science scholars have maintained and reproduced a central dichotomy of Cartesian thinking – that between social construction and biology. In this article I examine the limitations of social constructionist arguments in obesity/critical fat studies and the implications for ignoring materiality. Through bringing together the theoretical insights of material feminism and obesity science’s attention to maternal nutrition and the fetal origins hypothesis, this article moves beyond the current philosophical impasse, and repositions biological and social constructionist approaches to obesity not as mutually exclusive, but as one of constant interplay and connectedness.

Selfies, Image and the Re-making of the Body

Katrin Tiidenberg, Edgar Gómez Cruz

This article explores the relationality between women’s bodies and selfies on NSFW (Not Safe For Work) tumblr blogs. We consider the way selfie practices engage with normative, ageist and sexist assumptions of the wider culture in order to understand how specific ways of looking become possible. Women’s experiences of their bodies change through interactions, sense of community and taking and sharing selfies. This article provides an empirical elaboration on what sexy selfies are and do by analysing interviews, selfies and blog content of nine women in the NSFW self-shooters community on tumblr. For our participants, self-shooting is an engaged, self-affirmative and awareness raising pursuit, where their body, through critically self-aware self-care, emerges as agentic, sexual and distinctly female. Thus, this is a reading of selfies as a practice of freedom.

Listening-touch, Affect and the Crafting of Medical Bodies through Percussion

Anna Harris

The growing abundance of medical technologies has led to laments over doctors’ sensory de-skilling, technologies viewed as replacing diagnosis based on sensory acumen. The technique of percussion has become emblematic of the kinds of skills considered lost. While disappearing from wards, percussion is still taught in medical schools. By ethnographically following how percussion is taught to and learned by students, this article considers the kinds of bodies configured through this multisensory practice. I suggest that three kinds of bodies arise: skilled bodies; affected bodies; and resonating bodies. As these bodies are crafted, I argue that boundaries between bodies of novices and bodies they learn from blur. Attending to an overlooked dimension of bodily configurations in medicine, self-perception, I show that learning percussion functions not only to perpetuate diagnostic craft skills but also as a way of knowing of, and through, the resource always at hand; one’s own living breathing body.

 

Configurations

Deleuze, Haraway, and the Radical Democracy of Desire

Robert Leston

In response to suggestions that Deleuze and Guattari are the “enemy” of companion species, this essay explores the tension between Donna Haraway’s attacks against Deleuze and Guattari and their philosophy of becoming animal. The essay goes on to contextualize Deleuze and Guattari’s statements against pet owners through a discussion of the psychoanalytical refiguration of desire and shows how their ostensible attack against pet owners fits into their larger critique against capitalism. The essay illustrates why Deleuze and Guattari and Haraway are more in agreement than first meets the eye, finding commensurability through Haraway’s early work on embryology. Becoming animal does not begin and end with either humans or animals, and the essay explores the high stakes of focusing on intensities rather than actual animal bodies.

Fear and Panic in Iowa City: Narratives, Affects, and Amygdalae

Timothy Yaczo

Overturning assumptions about the neural location of fear in humans, University of Iowa neuroscientists successfully frightened the previously “fearless” Patient S.M. in 2013. Examining this Iowa study on fear as a productive problem for both neuroscience reporting and studies of affect in the humanities, this article asks how narratives of fear travel to implicate our understanding of contemporary scholarship in the humanities and sciences. It questions the ways in which scientific case studies themselves, alongside popular scientific and philosophical appropriations of scientific material, are determined by affective responses formed in relation to narrative.

 

Culture, Medicine and Psychiatry

Bangkit: The Processes of Recovery from First Episode Psychosis in Java

A. Subandi

There is a growing literature on recovery from schizophrenia. Most studies, however, focused on outcome, with insufficient attention paid to the process of recovery. The aim of this study was to explore the process of recovery from first episode psychotic illness in a Javanese cultural setting. An ethnographic method was applied where researcher conducted a field work and followed seven participants in their natural setting. This study identified three phases of recovery process in the context of Javanese culture: Bangkit, gaining insight; Usaha, struggling to achieve recovery; andRukun, harmonious integration with family and community integration. Recovery entails regaining insight, followed by simultaneous inward and outward efforts that reconstitute one’s inner and outer world, respectively. Participants also expressed their recovery in terms of a movement through physical space, from confinement in their own home to the wider spaces shared with family and community. Movements in physical space parallel movements in social space, where participants accomplish a social recovery. The Javanese phase of recovery found in this study is comparable to the phase of recovery identified by previous literatures in the Western context.

“Doctor, Why Didn’t You Adopt My Baby?” Observant Participation, Care, and the Simultaneous Practice of Medicine and Anthropology

Carolyn Sufrin

Medical anthropology has long appreciated the clinical encounter as a rich source of data and a key site for critical inquiry. It is no surprise, then, that a number of physician–anthropologists have used their clinical insights to make important contributions to the field. How does this duality challenge and enhance the moral practice and ethics of care inherent both to ethnography and to medicine? How do bureaucratic and professional obligations of HIPAA and the IRB intersect with aspirations of anthropology to understand human experience and of medicine to heal with compassion? In this paper, I describe my simultaneous fieldwork and clinical practice at an urban women’s jail in the United States. In this setting, being a physician facilitates privileged access to people and spaces within, garners easy trust, and enables an insider perspective more akin to observant participation than participant observation. Through experiences of delivering the infants of incarcerated pregnant women and of being with the mothers as they navigate drug addiction, child custody battles, and re-incarceration, the roles of doctor and anthropologist become mutually constitutive and transformative. Moreover, the dual practice reveals congruities and cracks in each discipline’s ethics of care. Being an anthropologist among informants who may have been patients reworks expectations of care and necessitates ethical practice informed by the dual roles.

Posthumous Reproduction (PHR) in Israel: Policy Rationales Versus Lay People’s Concerns, a Preliminary Study

Yael Hashiloni-Dolev

Israeli policy concerning PHR has been decided upon in an expertocratic manner, leaving the voice of the public unheard. Based on 26 semi-structured in-depth interviews with 13 Jewish-Israeli young couples, this preliminary study provides the first empirical data regarding lay attitudes toward PHR in Israel. Findings suggest major dissimilarities between the policy and lay people’s wishes and rationales. While policy is built on the “presumed wish” assumption, supposing all men living in a loving relationship wish to have their partner carry their child post-mortem, this was empirically unsupported. However, the findings suggest that many interviewees were willing to defer to their surviving spouse’s wishes to have their post-mortem child, sometimes even against their own wish, indicating a support for presumed consent. Respecting the wishes of the dead, a dominant argument in the bioethical discussion in Israel and beyond, was mainly irrelevant to informants, whereas interviewees considered the future child’s welfare, a concern overlooked by Israeli policy. Likewise, while posthumous grandparenthood is on the rise in Israel, it clearly contradicts the wishes of the majority of this study’s informants. Nonetheless, existing policy is not expected to raise any opposition, due to the extreme liberalism of the participants and their support of reproductive autonomy.

Cultural Explanations of Sleep Paralysis in Italy: The Pandafeche Attack and Associated Supernatural Beliefs

Baland Jalal, Andrea Romanelli, Devon E. Hinton

The current study examines cultural explanations regarding sleep paralysis (SP) in Italy. The study explores (1) whether the phenomenology of SP generates culturally specific interpretations and causal explanations and (2) what are the beliefs and local traditions associated with such cultural explanations. The participants were Italian nationals from the general population (n = 68) recruited in the region of Abruzzo, Italy. All participants had experienced at least one lifetime episode of SP. The sleep paralysis experiences and phenomenology questionnaire were orally administered to participants. We found a multilayered cultural interpretation of SP, namely the Pandafeche attack, associated with various supernatural beliefs. Thirty-eight percent of participants believed that this supernatural being, the Pandafeche—often referred to as an evil witch, sometimes as a ghost-like spirit or a terrifying humanoid cat—might have caused their SP. Twenty-four percent of all participants sensed the Pandafeche was present during their SP. Strategies to prevent Pandafecheattack included sleeping in supine position, placing a broom by the bedroom door, or putting a pile of sand by the bed. Case studies are presented to illustrate the study findings. The Pandafeche attack thus constitutes a culturally specific, supernatural interpretation of the phenomenology of SP in the Abruzzo region of Italy.

Pursuing Pleasures of Productivity: University Students’ Use of Prescription Stimulants for Enhancement and the Moral Uncertainty of Making Work Fun

Margit Anne Petersen, Lotte Stig Nørgaard, Janine M. Traulsen

This article presents ethnographic data on the use of prescription stimulants for enhancement purposes by university students in New York City. The study shows that students find stimulants a helpful tool in preventing procrastination, particularly in relation to feeling disinterested, overloaded, or insecure. Using stimulants, students seek pleasure in the study situation, for example, to get rid of unpleasant states of mind or intensify an already existing excitement. The article illustrates the notion that enhancement strategies do not only concern productivity in the quantitative sense of bettering results, performances, and opportunities. Students also measure their own success in terms of the qualitative experience of working hard. The article further argues that taking an ethnographic approach facilitates the study of norms in the making, as students experience moral uncertainty—not because they improve study skills and results—but because they enhance the study experience, making work fun. The article thereby seeks to nuance simplistic neoliberal ideas of personhood.

A Tale of Two Cities: The Exploration of the Trieste Public Psychiatry Model in San Francisco

Elena Portacolone, Steven P. Segal, Roberto Mezzina, Nancy Scheper-Hughes, Robert L. Okin

According to the World Health Organization (WHO), the “Trieste model” of public psychiatry is one of the most progressive in the world. It was in Trieste, Italy, in the 1970s that the radical psychiatrist, Franco Basaglia, implemented his vision of anti-institutional, democratic psychiatry. The Trieste model put the suffering person—not his or her disorders—at the center of the health care system. The model, revolutionary in its time, began with the “negation” and “destruction” of the traditional mental asylum (‘manicomio’). A novel community mental health system replaced the mental institution. To achieve this, the Trieste model promoted the social inclusion and full citizenship of users of mental health services. Trieste has been a collaborating center of the WHO for four decades with a goal of disseminating its practices across the world. This paper illustrates a recent attempt to determine whether the Trieste model could be translated to the city of San Francisco, California. This process revealed a number of obstacles to such a translation. Our hope is that a review of Basaglia’s ideas, along with a discussion of the obstacles to their implementation, will facilitate efforts to foster the social integration of persons with mental disorders across the world.

Fighting with Spirits: Migration Trauma, Acculturative Stress, and New Sibling Transition—A Clinical Case Study of an 8-Year-Old Girl with Absence Epilepsy

Dimitrios Chartonas, Ruma Bose

In this article, we discuss the impact of migration and acculturation processes on the cultural, personal identity, and mental health of children who immigrate to a Western, multicultural environment, and the challenges clinicians in such environments face, when confronted with non-Western idioms of distress and healing practices. We do that by presenting a challenging clinical case of an 8-year-old girl who presented with very disorganized behavior, which matches a culturally accepted construct of spirit possession, in the context of migration trauma, acculturative stress, and new sibling transition. We identify cultural conflict in school and bullying as major mediators between acculturative stress and mental distress. We also aim at identifying vulnerability, risk and protective factors, and the importance of cultural coping resources. We explore in depth the patient’s cultural background and the family’s belief system and culturally shaped narratives, in order to arrive at a cultural formulation, which focuses on the significance of idioms of distress in shaping psychopathology and influencing the personal and interpersonal course of trauma- and stress-related disorders. We also call attention to the finding that in children, idioms of distress may manifest themselves in a somatic manner. We argue, together with other researchers, that spirit possession deserves more interest as an idiom of distress and a culture-specific response to traumatizing events. We finally emphasize the importance of an anti-reductionist clinical stance, that is able to use different levels of understanding processes of distress and healing, and seeks to reconciliate cultural divides and integrate different explanatory frameworks and help-seeking practices.

 

East Asian Science, Technology, & Society

We Have Never Been Latecomers: A Critical Review of High-Tech Industry and Social Studies of Technology in Taiwan

Dung-sheng Chen

This article illustrates the development of the latecomer concept, starting initially from studies of Taiwan’s high-tech industry and then proposing a latecomer thesis based on the theoretical arguments in that literature. That thesis has also influenced Taiwanese STS studies of technology, including transferred and local technologies and Chinese medicine, and this article shows how this approach has framed the scope of the literature’s interpretation of empirical findings in different ways. Although the latecomer thesis has to some extent become dominant in academic approaches to technology in Taiwan, there exist alternative approaches derived from reflexive studies of Chinese medicine and of local reassembled-car technology, as well as of local trail-construction technology, all of which have broken out of the theoretical constraints of the latecomer thesis. On the one hand, some studies of Chinese medicine construct an insightful model integrating a practical ontology, a correlative thinking method, and displacement agency theory, sharing basic theoretical assumptions with Bruno Latour’s actor-network theory. On the other hand, the studies of reassembled cars, plant grafting, bridge construction, and local trail construction highlight the undesirability of classifying diverse technologies into a simple binary and prescribing a convergent destiny for both technological and societal development. These arguments challenge the basic assumptions of the latecomer thesis and also demonstrate the strength of the model established by studies of recent Chinese medicine. Finally, this tripartite model is employed to reinvestigate Taiwan’s semiconductor industry as an example of high-tech industries, and to show the networked reality of an industry in which a continuous mix of varied technologies occurs, new trajectories emerge, and technological objects as industrial actors continue to make linkages with other societal elements. The reinterpretation of this industry exemplifies the fact that no given element in a society is isolated from other parts, and that social reality essentially keeps reassembling.

Governance of Stem Cell Research and Its Clinical Translation in China: An Example of Profit-Oriented Bionetworking

Suli Sui, Margaret Sleeboom-Faulkner

As in other areas of science, the conditions under which stem cell research develops are crucial to the development of its knowledge products. Material and intellectual resources, governance, and culture are factors that underlie the realization of science. The concept of bionetworking aims to capture these factors, and we use it to describe the evolution of the network activities of for-profit providers of stem cell therapy in the context of the three-stage evolution of scientific governance in China.

On the basis of empirical and archival research, we argue that international trends in stem cell regulation both hamper and stimulate the development of stem cell research in China. On the one hand, the Chinese government is put under pressure to set high, alien standards for its most advanced stem cell research laboratories and clinics; thus, only a few institutions are able to follow internationally dominant trends. On the other hand, unrealistic implementation has allowed widespread transgression of regulation, enabling researchers to gain clinical experience.

We illustrate how the networking activities of collaborative for-profit networks and translational research are fundamentally affected by the regulatory reforms in China, showing how governance, scientific development, and social conditions are closely intertwined. We argue that good governance in China does not necessarily mean following international regulatory trends to the letter.

Asians—A Doping-Friendly Race?: Antidoping Research and Popular Discourse on Race in the Postgenomic Era

Jaehwan Hyun

There has been a growing concern about a new way of thinking about race in genomics. STS scholars have tried to make sense of the ways race came to be a part of the scientific, medical, and legal fields in the name of genomics. This article adds to this STS literature on race and genomics with an analysis of antidoping science, a circuit of knowledge making that reifies race in terms of genomics but that thus far has been ignored by STS scholars. By engaging with the STS perspective on genomics and race, in this article I examine how antidoping regulatory knowledge on doping markers travels and how its operations are carried out both inside and outside this regulatory science. This study traces knowledge making about steroid doping regulations and its journey through the media and cyberspace, thus showing that regulatory efforts against doping were incidentally linked to the shaping of the idea of race in relation to genomics and personalized medicine, and especially that of Asian race. While the regulations, recommendations, and debates on the use of race in terms of genomics focused on biomedical research and practice, antidoping scientists are regulatory scientists on the periphery of biomedicine. Antidoping scientists did not, then, engage with debates on the use of racial categories when applying concepts of personalized medicine and pharmacogenomic studies in biomedicine. They used racial categories in their studies of the UGT2B17 gene without concern, and their research reinforced the shaping of racialist discourses on the idea of Asians as a doping-friendly race in the media and cyberspace. This case study suggests that, to improve academic and political intervention on race and genomics, STS scholars should expand their studies into peripheral disciplines of biomedicine such as antidoping science and other human regulatory sciences.

Mental Illness in Singapore: A History of a Colony, Port City, and Coolie Town

Kah Seng Loh

The case of Singapore explores the history of mental illness in a British colony, port city, and Chinese coolie town. As a colony, Singapore not only received Western psychiatric expertise from the metropole but also suffered from the inner contradictions and failings of colonial rule. The mental asylum thus had both a modernizing and marginal role. As an international port city, Singapore was a major center for internationally crisscrossing flows, yet the transnationalism in mental health policy remained connected to colonial power in two ways: the British simplified the culturally diverse patients into distinct, subordinate races and transferred them between Singapore and other countries. Singapore was also an unruly “coolie town” where, utilizing the weapons of the weak, Chinese sufferers contested the psychiatric regime in the asylum and continued to seek treatment and care beyond it. Their ability to do so depended, however, on the specific circumstances that prevailed in the individual, asylum, and coolie town, and their agency was expressed in relation to the colonial system rather than independent of it.

 

Ethos

Pride, Shame, and the Trouble with Trying to Be Normal

Theodore K. Gideonse

I performed 14 person-centered ethnographies with methamphetamine-using HIV-positive men who have sex with men in San Diego, California, who were all subjects of the “anti-meth apparatus,” a collection of government and nongovernment organizations focused on meth use and its sequelae. The apparatus attempts to coerce addicts to develop and perform certain identities and emotions, though addicts are capable of both passive acceptance and active disruption. In my research, those who failed to become the apparatus’s ideal subject felt shame, while those who succeeded expressed pride. Those hovering in the middle experienced a perpetual struggle to become normal and rarely, if ever, succeeded.

Variation in Causal Models of Diabetes: A Comparison of Nurses and Lay Community Members in the United States and Guatemala

Jonathan N. Maupin

Causal models are a key element for examining cross-cultural as well as expertise variation in explanatory models of illness. Yet, anthropological studies comparing causal models often focus on the content of these models and fail to examine variation in the structure and role of individual causal features in causal models of disease. In this article, I analyze variation in causal models of diabetes among a sample of registered nurses and lay community members in the United States and Guatemala. Utilizing a cause-by-cause questionnaire, I measure patterns of variation and agreement in direct causal interactions between features. Constructing causal networks, I examine similarities and differences in the structure as well as the role of specific causal features within these networks. These results demonstrate that biomedical expertise and sociocultural context are associated with different aspects of the structure and content of explanatory models of diabetes.

Apprehending Volition in Early Socialization: Raising “Little Persons” among Rural Mapuche Families

Marjorie Murray, Sofia Bowen, Nicole Segura, Marisol Verdugo

On the basis of ethnographic fieldwork with rural Mapuche families in the Araucanía region of Chile, this article analyzes ways in which Mapuche parenting practices and the process of socialization during early childhood involve and transmit a sense of volition that is intrinsic to Mapuche notions of personhood and autonomy. Recounting concrete daily events, we describe how children make use of their own initiative and intentionality when exploring, acting, learning, and creating social relationships. At the same time, Mapuche parents avoid constant visual supervision and direct intervention, rarely oppressing children’s volition while respecting and valuing children’s personal and direct experiences of the world. By considering volition as an important cultural feature of parenting and socialization, and by reflecting upon how different ideologies of childhood and parenting relate to children’s volition, we aim to contribute to current developments on early socialization and parenting cultures.

Hōkō onchi: Wayfinding and the Emergence of “Directional Tone-Deafness” in Japan

Joshua Hotaka Roth

Take a wrong turn and show up late to an appointment in Japan and it is quite likely that someone will label you “hōkō onchi” (directionally tone-deaf). The term was coined in the late 1960s, and now hundreds of thousands of Japanese identify themselves as “hōkō onchi.” The term is much more widely used than any equivalent in English, and there is reason to believe that some people who have embraced the label do not necessarily have more difficulty in wayfinding than those who reject it. What, then, does the label mean? What explains its initial emergence and its current transformations? While directional orientation concerns cognitive ability, the way it has been used as a label and later adopted as an identity suggests it may also be a symptom of shifts in the wider social context.

 

Health and Place

Socio–economic status and family structure differences in early trajectories of child adjustment: Individual and neighbourhood effects

Eirini Flouri, Emily Midouhas, Alexandra Ruddy

We examined the effects of single-parent family status and high parental socio-economic status (SES) on the trajectories of children’s emotional/behavioural adjustment in early-to-middle childhood (ages 3–7 years). We also assessed whether these family characteristics interact with the equivalent neighbourhood characteristics of shares of single-parent families and high-SES adults in predicting these trajectories. Using data on 9850 children in England participating in the Millennium Cohort Study, we found that family status and parental SES predicted children’s trajectories of adjustment. Even after controlling for these family factors and key child and parent characteristics, the neighbourhood shares of high-SES adults and single-parent families were related (negatively and positively, respectively) to child problem behaviour. Importantly, children of low-SES parents in neighbourhoods with a high concentration of high-SES adults had fewer emotional symptoms than their counterparts in areas with fewer high-SES adults. Surprisingly, the adverse effect of single-parent family status on child hyperactivity was attenuated in areas with a higher share of single-parent families.

Neighborhood walkability and health outcomes among older adults: The mediating role of physical activity

Jelle Van Cauwenberg, Veerle Van Holle, Ilse De Bourdeaudhuij, Delfien Van Dyck, Benedicte Deforche

We examined the mediating role of physical activity on the relationships of walkability with Flemish older adults’ health outcomes. In low income neighborhoods, residents of high walkable neighborhoods had a 1.5 kg/m2 lower BMI than low walkable residents. Of this difference 0.3 kg/m2 (19%) and 0.2 kg/m2 (12%) were explained through walking for transport and MVPA, respectively. Similar findings were observed for waist circumference. Walkability did not relate to functional performance or quality of life. Walkable neighborhoods may benefit older adults’ health, especially in low income neighborhoods. More research in other contexts is warranted to confirm current findings.

Home-making after stroke. A qualitative study among Dutch stroke survivors

Louise Meijering, Christa S. Nanninga, Ant T. Lettinga

Stroke survivors may suffer from physical limitations as well as cognitive and behavioural difficulties. Many survivors work on their recovery in a rehabilitation clinic with the aim to return to their own home again. Since full recovery is often not feasible, they face the challenge of coming to terms with lasting effects of the stroke and of giving meaning to their home place again.

Based on in-depth interviews with stroke survivors, we discuss the meaning of the home with respect to changed post-stroke identities. Our findings show how, for many participants, a formerly comfortable home becomes a space of struggle. Formerly stable bodily routines become time-consuming and demanding, reciprocal relationships with significant others change, often becoming unbalanced dependence. In conclusion, each stroke survivor faces a different struggle to accommodate a changed self in a house that does not feel like home anymore. These findings imply that stroke rehabilitation services need to address the individual and everyday challenges that stroke survivors and their families face at home, to improve their sense of home and well-being.

The density of alcohol outlets and adolescent alcohol consumption: An Australian longitudinal analysis

Rowland, Tracy Evans-Whipp, Sheryl Hemphill, Rachel Leung, M. Livingston, J.W. Toumbourou

Higher density of alcohol outlets has been linked to increased levels of adolescent alcohol-related behaviour. Research to date has been cross-sectional. A longitudinal design using two waves of annual survey data from the Australian arm of the International Youth Development Study was used. The sample comprised 2835 individuals with average age at wave 2 of 14 years (SD=1.67; range=11–17 years). GSEM was used to examine how absolute levels of alcohol outlet density was associated with student-reported alcohol use one year later, while controlling for prior alcohol use, risk factors at wave one and changes in density over the 2 years. Adolescents’ perception of alcohol availability and friends’ alcohol use were tested as potential mediators of the association between alcohol outlet density and adolescent alcohol use. Elasticity modelling identified a 10% increase in overall density at wave one was associated with an approximately 17% increase in odds of adolescent alcohol consumption at wave two. Living in areas with a higher density of outlets was associated with a statistically significant increase in the likelihood of adolescents developing early age alcohol consumption.

 

Health, Risk & Society

‘I think it’s self-preservation’: risk perception and secrecy in early pregnancy

Emily Jane Ross

Withholding news of a pregnancy from wider family and friends for the first 12 weeks of gestation is a familiar aspect of the contemporary experience of pregnancy in Britain. In this article, I explore this convention, drawing on interviews conducted in Scotland between 2012 and 2013, with 15 women experiencing a full-term pregnancy for the first time. For the participants in this research, the maintenance of secrecy was a response to their understanding that the risk of a pregnancy loss was at its highest during this stage of gestation. Respondents often articulated their interpretation of this risk in terms of statistics, derived from medical sources. These were substantiated by knowledge of pregnancy losses amongst family and friends, but also by their own ambiguous embodied experiences at this time. Accounts of early gestation resonated with Rothman’s notion of the ‘tentative pregnancy’, a concept rarely invoked outside discussions of prenatal testing. In line with efforts not to get ‘too excited’, demonstrating emotion work, women delayed the announcement of their pregnancy until they perceived the risk of a pregnancy loss to have decreased. During the first 12 weeks of gestation, participants’ accounts demonstrated multiple influences on their understanding of their pregnancy as at risk. Further, their experiences more often resonated with the management of uncertainty than risk per se, and thus offer new perspectives to the study of pregnancy within the social sciences.

Pluralist risk cultures: the sociology of childbirth in Vanuatu

Karen Lane

Western medical approaches to childbirth typically locate risk in women’s bodies, making it axiomatic that ‘good’ maternity care is associated with medically trained attendants. This logic has been extrapolated to developing societies, like Vanuatu, an Island state in the Pacific, struggling to provide good maternity care in line with the World Health Organization’s Millennium Development Goals. These goals include the reduction of maternal mortality by two-thirds by 2015, but Vanuatu must overcome challenging hurdles – medical, social and environmental – to achieve this goal. Vanuatu is a hybridised society: one where the pre-modern and modern coincide in parallel institutions, processes and practices. In 2010, I undertook an inductive study of 30 respondents from four main subcultures – women living in outer rural communities with limited access to Western-trained health workers; women from inner urban communities with ease of access to medical clinics; traditional birth attendants who are formally untrained but highly specialised and practised mainly in remote communities; and Western-trained medical clinicians (obstetricians and midwives). I invited all the participants to comment on what constituted a ‘good birth’. In this article, I show that participants interpreted this variously according to how they believed the uncertainties of childbirth could be managed. Objectivist approaches that define risk as an objective reality amenable to quantifiable measurement are thus rendered inadequate. Interpretivist approaches better explain the reality that social actors not only find risk in different sites but gravitate towards different practices, discourses and individuals they can trust especially those with whom they feel a strong sense of community. Strategies are, therefore, formed less through scientific rationality but according to feelings and emotions and the lived experience. The concept of risk cultures conveys this complexity; they are formed aroundvalues rather than calculable rationalities. Risk cultures form self-reflexively to manage contingent circumstances.

The influence of risk perception on South Korean mothers’ use of infant formula

Minjung Sung, Hyehyun Hong

Given that the choice of breastfeeding is not available to every mother, in spite of its advantages, in this article we examine the factors influencing the use of infant formula in South Korea. We draw on data from a national survey of South Korean mothers conducted in 2009, to show that while maternal use of infant formula feeding was affected by socio-economic factors such as education, income and employment status, it was also influenced by mothers’ perception of risks of infant formula. We found that the way mothers perceived the safety of formula milk’s raw materials was a key factor influencing their decisions about formula feeding, while their perceptions of the safety of the manufacturing facilities and the distribution system was less influential. The mothers in the survey perceived that product safety was more important than considerations such as convenience and economic value of infant formula. We argue that the priority which Korean mothers give to considerations of the risk/safety of infant formula reflects the impacts from a series of food-related incidents, including the 2008 scandal in China where the production of infant milk was contaminated with melamine. Given the socio-economic and perceptual differences between mothers who formula feed and those who breastfeed, we provide guidelines about the ways in which professionals and government agencies can enhance the management and communication of issues relating to the safety of infant formula product.

The safety dance: Men without [hard] hats

Martin T. Kosla

A central tenet in the sociology of risk is that risk-taking is inherently linked to masculinity. Recent research, however, demonstrates gender identity is only one of the many social contexts that influence professional risk-taking. The interaction between the various occupational social contexts – such as social class, occupational socialisation, institutions, and gender identity – contributes to the development of risk-taking occupational identities. These occupational identities are associated with unique understandings of risk which influence whether workers are likely to embrace or avoid risk. While there has been a plethora of research exploring how occupational identities encourage risk-taking, relatively little research has explored how occupational identities determine the types of risks embraced by workers. After all, there is substantial occupational variation in the types of risks workers take. In this paper I draw on data from a series of interviews conducted in 2010 and 2011 with US electrical construction workers to explore perceptions of job site safety procedures to understand how electrical workers view various job site hazards. I argue that the proximity of a hazard to the occupation’s core competencies determines the level of support the safety procedure receives from those within the occupation.

Between bushfire risk and love of environment: preparedness, precariousness and survival in the narratives of urban fringe dwellers in Australia

Davina Lohm, Mark Davis

Many Australians live in attractive urban-fringe and semi-rural environments which are said to be places that promote health and well-being. Yet, each summer, these residents are asked by authorities to prepare for episodic, intensely unpredictable bushfire emergency. In 2012/2013, we interviewed 17 people who lived on the rural fringe of Melbourne to gain insights into how people are able to feel secure whilst residing in bushfire risk environments. Our findings highlight the deep attachment that people have to place, the importance of learning from past experiences, recognition that any preparation has limitations, and the need to recognise one’s own limitations when confronted with fire. With reference to the bushfire preparedness narratives told in the interviews, we discuss the precariousness of living in a place that is seen as healthy and dangerous. The argument we develop furnishes insight into how individuals and families deal with the intensity and complexity of bushfire risk and more generally how they are taking on the emerging rationalities of disaster preparedness as a mode of risk management for survival. Such insights support policy makers to tailor advice that recognises the complexity of people’s understanding of fire risk.

How health risks prevention shapes collective identities: a micro-sociological approach

Don Weenink, Christian Bröer,  Jolanda Boersma

Sociological theories of health risks in late modernity emphasise the individualisation and increasing anxiety that results from prevention policies, while bio-sociality theories point to the creation of new, biologically or medically based social identities. In this article, we outline an alternative approach. We use micro-sociological interaction ritual theory to examine how health risk prevention technology shape interactions that generate collective identities. Drawing on fieldwork in two Dutch villages in 2008–2009 and again in 2014 that created interview, survey and observational data, we show that automatic external defibrillators turned into symbols of collective identity that elicited feelings of group membership, reflected moral values and filled community members with pride. We demonstrate that this collective identity formation process was shaped by the institutional and technological network of the automatic external defibrillators. In the concluding section of the article, we explore the conditions under which health-related collective identities might develop, particularly with regard to the institutions that create health policies and foster health risk awareness.

‘I’m managing myself’: how and why people use St John’s wort as a strategy to manage their mental health risk

Sophie Lewis, Karen Willis, Renata Kokanovic, Marie Pirotta

In this article, we examine the choice to use a complementary and alternative medicine product (St John’s wort) for the management of mental health risk. We draw on data from a study in which we conducted in-depth, semi-structured interviews with 41 adults who self-reported depression, stress or anxiety, in Melbourne, Australia, in 2011. We identified three groups of users – regular St John’s wort users, whose use was continuous; irregular users, whose use was occasional; and non-users, who had stopped or were contemplating use. In each group, St John’s wort use centred around managing risk, taking control and self-management. Participants described a process of weighing up risks and benefits of different treatment options. They viewed St John’s wort as a less risky and/or safer option than antidepressants because they perceived it to be more natural, with fewer side effects. They saw their use of St John’s wort as a means of exercising personal control over mental health risks, for example, to alleviate or self-manage symptoms of depression. Their use of St John’s wort was also linked to perceptions of broader social risks including the stigma and shame of needing to use antidepressants. The findings deepen our understanding of notions of mental health risk by pointing to the importance of localised knowledge of risk in decision-making, and the ways in which perceptions of, and hence responses to, risk differ between groups.

Fearing or fearsome Ebola communication? Keeping the public in the dark about possible post-21-day symptoms and infectiousness could backfire

Branden B. Johnson, Paul Slovic

US quarantine announcements do not include information that there is a moderate likelihood that Ebola-exposed people might exhibit symptoms, signalling infectiousness, beyond 21 days. As a result it is possible that if and when there is media coverage in the US of a delayed-symptom case, it might create citizen distrust in public health authorities and information and cause citizens to overestimate the risk of Ebola infection. In this article we report a research study which examined whether openness about post-21-day symptoms would attenuate negative reactions. We ran two experiments with online opportunity (Amazon mTurk) samples of Americans in late October-early November 2014, between the two deaths from Ebola in the US. In these experiments we assessed the reactions of respondents who saw quantitative estimates of post-21-day-symptom likelihood (n = 1413), or were informed about post-21-day symptoms with a rationale for the 21-day period after all saw a mock news story about a US case of 30th-day symptoms (n = 425). We found in both experiments that perceived risk increased and trust declined when people learned of post-21-day symptoms, and disbelief increased that 21 days without symptoms means no Ebola infection. In Study 2, informed persons and controls changed perceived risk and trust relative to baseline; test-group participants distrusted local medical personnel less and wanted shorter quarantines compared to controls who did not receive the information. Our findings suggest that informing Americans about the small likelihood of post-21-days Ebola symptoms would not increase perceived risk and distrust, and might diminish negative reactions to the media reporting a case who developed symptoms of Ebola after 21 days. Thus, public health officials wanting appropriate public responses to potential or actual epidemics may benefit from early communication of unpleasant infectious-disease facts before events reveal them, and signal officials’ lack of preparedness for public reactions.

 

Journal of the Royal Anthropological Institute

Vatted dreams: neurophilosophy and the politics of phenomenal internalism

Nicolas Langlitz

Despite much social-scientific work on the neurosciences, little ethnographic and historical attention has been paid to the field of neurophilosophy. Yet anthropologists studying brain research occasionally critique neurophilosophers for reducing the mind to the brain while affirmatively citing philosophers of mind who present the mind as emerging from interactions between brain, body, and environment. This article examines the ostracized camp of so-called ‘phenomenal internalists’ – neurophilosophers who believe that consciousness can supervene on the brain alone. This ontological commitment is driven by certain existential and political experiences from false awakenings to disenchantment with the counterculture of the 1970s. But it also draws from neuroscientific research on the dreaming brain. The inquiry concludes with a plea to anthropologists to attend to relations of detachment, both social and neural, and to reconsider their own ontological commitment to externalism in the light of dream research.

Species: a praxiographic study

Eben Kirksey

Taxonomists, who describe new species, are acutely aware of how political, economic, and ecological forces bring new forms of life into being. Conducting ethnographic research among taxonomic specialists – experts who bring order to categories of animals, plants, fungi, and microbes – I found that they pay careful attention to the ebb and flow of agency in multispecies worlds. Emergent findings from genomics and information technologies are transforming existing categories and bringing new ones into being. This article argues that the concept of species remains a valuable sense-making tool despite recent attacks from cultural critics.

To see that which cannot be seen: ontological differences and public health policies in Southern Chile

Cristóbal Bonelli

In this article, I explore different visual practices performed by Pehuenche Indigenous healers and state public health professionals in Southern Chile. While non-Indigenous health workers seek to make ‘traditional’ Pehuenche healing visible within or alongside their own ‘modern’ practices, Pehuenche people are concerned with making visible the evil spirits whose ‘eating’ of persons produces illness. Focusing in particular on different healing practices triggered by the existence of Pehuenche spiritual illnesses that are ‘seen’ by both Indigenous healers and state professionals, this article discusses how different ontologies ground differences between the Indigenous healers and what they ‘see’; as well as how a broader and substantive binary between Pehuenche and non-Pehuenche realities goes above and beyond these multiplicities. By exploring and discussing the endurance of Pehuenche cosmo-political relations in a world inhabited by visible and invisible eaters, I hope to create awareness about how a failure to recognize these different realities limits current multicultural policies in Southern Chile, and Indigenous health policies more broadly. At a more theoretical level, the following ethnographic account sheds light on unresolved tensions between the ways ontological difference has been conceptualized within the so-called ‘ontological turn’ in anthropology and within the field of Science and Technology Studies (STS).

The impasse of modernity: personal agency, divine destiny, and the unpredictability of intimate relationships in Morocco

Laura Menin

Following the romantic vicissitudes of Ghizlan, a professional woman in her thirties, this article explores the expectations and unexpected outcomes of love in a rapidly changing Moroccan town. Imagined as a pure and elective union between two individuals, love manifests itself in Ghizlan’s lived experience as a dangerous adventure along the thin line between human agency and divine destiny, personal desires and social constraints. In the wake of the Islamic revival, a purified idea of ‘Islamic modernity’ provides the religious imagination and vocabulary with which Ghizlan recomposes the unfulfilled promises of love and discusses recent developments in Morocco. Interweaving love and destiny, Ghizlan’s reflections reveal a perspective on agency and (inter)subjectivity that exceeds intentionality, desire, and rational understanding. Highlighting the fundamental roles of human passions and transcendental powers in people’s ethical and existential journeys, this article hopes to contribute to an emerging ‘anthropology of ethics and freedom’. It broadens current anthropological debates by interrogating the very meanings of choice, freedom, and responsibility in a world where personal agency meets human powers, divinely preordained futures, and material contingencies.

 

Medical Anthropology Quarterly

Obstetrics in a Time of Violence: Mexican Midwives Critique Routine Hospital Practices

Lydia Zacher Dixon

Mexican midwives have long taken part in a broader Latin American trend to promote “humanized birth” as an alternative to medicalized interventions in hospital obstetrics. As midwives begin to regain authority in reproductive health and work within hospital units, they come to see the issue not as one of mere medicalization but of violence and violation. Based on ethnographic fieldwork with midwives from across Mexico during a time of widespread social violence, my research examines an emergent critique of hospital birth as a site of what is being called violencia obstétrica (obstetric violence). In this critique, women are discussed as victims of explicit abuse by hospital staff and by the broader health care infrastructures. By reframing obstetric practices as violent—as opposed to medicalized—these midwives seek to situate their concerns about women’s health care in Mexico within broader regional discussions about violence, gender, and inequality.

Serenity: Violence, Inequality, and Recovery on the Edge of Mexico City

Angela Garcia

Over the last decade, there has been a sharp increase in drug addiction in Mexico, especially among the urban poor. During the same period, unregulated residential treatment centers for addiction, known as anexos, have proliferated throughout the country. These centers are utilized and run by marginalized populations and are widely known to engage in physical violence. Based on long-term ethnographic research in Mexico City, this article describes why anexos emerged, how they work, and what their prevalence and practices reveal about the nature of recovery in a context where poverty, drugs, and violence are existential realities. Drawing attention to the dynamic relationship between violence and recovery, pain, and healing, it complicates categories of violence and care that are presumed to have exclusive meaning, illuminating the divergent meanings of, and opportunities for, recovery, and how these are socially configured and sustained.

Modern Art as Public Care: Alzheimer’s and the Aesthetics of Universal Personhood

Scott Selberg

This article is based on ethnographic research of the New York Museum of Modern Art’s influential Alzheimer’s access program, Meet Me at MoMA. The program belongs to an increasingly popular model of psychosocial treatment that promotes art as potentially therapeutic or beneficial to people experiencing symptoms of dementia as well as to their caregivers. Participant observation of the sessions and a series of interviews with museum staff and educators reveal broader assumptions about the relationship between modern art, dementia, and personhood. These assumptions indicate a museological investment in the capacity and perceived interiority of all participants. Ultimately, the program authorizes a narrative of universal personhood that harmonizes with the museum’s longstanding focus on temporal and aesthetic modernism.

In/dependent Collaborations: Perceptions and Experiences of African Scientists in Transnational HIV Research

Ferdinand Moyi Okwaro, P. W. Geissler

This article examines collaboration in transnational medical research from the viewpoint of African scientists working in partnerships with northern counterparts. It draws on ethnographic fieldwork in an HIV laboratory of an East African state university, with additional data from interviews with scientists working in related research institutions. Collaboration is today the preferred framework for the mechanisms by which northern institutions support research in the south. The concept signals a shift away from the legacy of unequal (post-) colonial power relations, although, amid persisting inequalities, the rhetorical emphasis on equality might actually hinder critical engagement with conflicts of interest and injustice. To collaborate, African scientists engage various strategies: They establish a qualified but flexible, non-permanent workforce, diversify collaborators and research areas, source complementary funding to assemble infrastructures, and maintain prospective research populations to attract transnational clinical trials. Through this labor of collaboration, they sustain their institutions under prevailing conditions of scarcity.

To Be Free and Normal: Addiction, Governance, and the Therapeutics of Buprenorphine

Shana Harris

Methadone maintenance has dominated opiate addiction treatment in the United States for decades. Since 2002, opiate addiction has also been treated in general medical settings with a substance called buprenorphine. Based on interviews and participant observation conducted in northern California, this article analyzes how discourses of freedom and normalcy in patient and provider narratives reflect and affect experiences with this treatment modality. I discuss how buprenorphine treatment, in contrast to methadone maintenance, offers patients and providers a greater sense of autonomy and flexibility in how they receive and deliver treatment. It presents them with new obligations, responsibilities, and choices around care and conduct. It simultaneously perpetuates and shapes a desire to be “free” and “normal.” I argue that the therapeutics of buprenorphine govern patients and providers through this desire for freedom and normalcy. Buprenorphine is thus a technology of governmentality that extends neoliberal discourses and values and produces self-governing subjects.

“You Can Turn off the Light If You’d Like”: Pediatric Health Care Visits for Children with Autism Spectrum Disorder as an Interactional Achievement

Olga Solomon, Amber M. Angell, Larry Yin, Mary C. Lawlor

Substantial scholarship has been generated in medical anthropology and other social science fields on typically developing child–parent–doctor interactions during health care visits. This article contributes an ethnographic, longitudinal, discourse analytic account of a child with autism spectrum disorder (ASD)–parent–doctor interactions that occur during pediatric and neurology visits. The analysis shows that when a child with ASD walks into the doctor’s office, the tacit expectations about the visit may have to be renegotiated to facilitate the child’s, the parent’s, and the doctor’s participation in the interaction. A successful visit then becomes a hard-won achievement that requires the interactional and relational work of all three participants. We demonstrate that communicative and sensory limitations imposed by ASD present unique challenges to all the participants and consider how health care disparities may invade the pediatric encounter, making visible the structural and interactional processes that engender them.

 

Medical Humanities

Who speaks for whom? Health humanities and the ethics of representation

Rebecca Garden

The medical or health humanities are in essence a form of advocacy, a means of addressing a problem of underrepresentation. They focus on suffering, rather than pathology, and on sociocultural understandings of illness and disability, rather than a narrow biomedical perspective. The health humanities thus analyse and attempt to recalibrate the power imbalance in healthcare. This article reviews health humanities scholarship that addresses underrepresentation through the analysis of illness and disability narratives. It examines the ethics of representation by exploring how literary representation functions, its aesthetic as well as political dimensions, and how it operates as a relay mechanism for power. The mechanism of representation is further explored through a reading of Eli Clare’s narrative Exile and Pride. Donna Haraway’s notion of articulations is proposed as a tool for a more ethical approach to representation. The article suggests that transparency about the power health humanities scholars stand to gain through representation may contribute to a more ethical health humanities practice.

Carers’ responses to shifting identity in dementia in Iris and Away From Her: cultivating stability or embracing change?

David M R Orr,  Yugin Teo

An emphasis on supporting and maintaining self-identity in people who have dementia for as long as possible has gone hand in hand with the revitalisation of dementia interventions, services and empowerment. However, recognition of the need for change, adaptation and personal growth is as necessary when living with dementia as at any other time in people’s lives. Those who care for people with dementia must constantly navigate this tension between continuity and change within the context of memory loss, knowing when to respond by reinforcing the ‘self’ they have known over time, and when it may be better to respond by acknowledging the changes that have taken place in that ‘self’. The creative arts are avenues for the exploration of the caring relationship under these conditions, conveying the challenges and stimulating audiences to ask how they themselves might choose to respond in a similar situation. This article considers how the scenarios of two noted films, Iris (dir. Richard Eyre, 2001 UK)) and Away From Her (dir. Sarah Polley, 2006 Can), present the dilemmas of identity and caring. In both, a husband cares for a wife experiencing cognitive decline, but responds differently in each to her shifting needs and experience of identity. We argue that the two films reveal complementary and provocative perspectives on this situation. They offer no easy answers, but provide insights into the everyday decisions characteristic of caring for someone who has dementia.

Photographic art in exam rooms may reduce white coat hypertension

Michael B Harper, Stacy Kanayama-Trivedi, Gloria Caldito, David Montgomery, EJ Mayeaux, Jr, Lourdes M DelRosso

Introduction: Blood pressure (BP) elevation in medical office settings in patients who are normotensive in nonmedical settings is an effect known as ‘white coat hypertension’. This phenomenon is thought to be due to situational anxiety caused by the experience of visiting a doctor and the anxiety-inducing nature of the medical office. Our study was designed to determine if carefully selected photographic art could counter the anxiety that causes white coat hypertension and lead to lower BP recordings in some patients.

Methods: 117 adults, non-pregnant patients from the Louisiana State University Health Sciences Center Family Medicine Resident Clinic participated in this study. After the triage nurse measured the BP, the patients were randomly placed in either an exam room with standard medical posters (control room) or in an exam room with photographic art (photo room). The BP was measured in the exam room. After the medical visit, the patients switched rooms and the BP was measured a third time. The patients were asked to fill out a questionnaire to identify room preference.

Results: On average, the BP obtained in the control rooms was higher than that obtained in the photo rooms. There was a statistically significant difference between the mean arterial pressure, systolic BP and diastolic BP between the control room and the photo room.

Conclusions: Landscape photographic art may have the beneficial effect of reducing BP in medical office examination rooms.

Richard’s back: death, scoliosis and myth making

Mary Ann Lund

The body of a mediaeval monarch was always under scrutiny, and Richard III’s was no exception. In death, however, his body became subject to new forms of examination and interpretation: stripped naked after the battle of Bosworth, his corpse was carried to Leicester and exhibited before being buried. In 2012, it was rediscovered. The revelation that Richard suffered from scoliosis prompts this article to re-evaluate the historical sources about Richard’s physique and his posthumous reputation. This article argues that Richard’s death and his myth as ‘crookback’ are inextricably linked and traces attitudes to spinal curvature in the early modern period. It also considers how Shakespeare represented Richard as deformed, and aspects of performance history which suggest physical vulnerability. It then considers Richard’s scoliosis from the perspective of medical history, reviewing classical accounts of scoliosis and arguing that Richard was probably treated with a mixture of axial traction and pressure. It demonstrates from the evidence of Richard’s medical household that he was well placed to receive hands-on therapies and considers in particular the role of his physician and surgeon, William Hobbes. Finally, it shows how the case of Richard III demonstrates the close relationship between politics and medicine in the period and the contorted process of historical myth making.

Whistleblowing in medicine and in Homer’s Iliad

Victoria Rodulson, Robert Marshall, Alan Bleakley

‘Thinking with Homer’, or drawing creatively on themes and scenes from Homer’s Iliad andOdyssey, can help us to better understand medical culture and practice. One current, pressing, issue is the role of the whistleblower, who recognises and exposes perceived poor practice or ethical transgressions that compromise patient care and safety. Once, whistleblowers were ostracised where medical culture closed ranks. However, in a new era of public accountability, medicine looks to formally embrace whistleblowing to the point that not reporting transgressions can now constitute a transgression of professionalism. Where medical students identify with the history and traditions of medical culture, they inevitably find themselves in situations of conflicting loyalties if they encounter senior clinicians behaving unprofessionally. What are the implications of facing these dilemmas for students in terms of role modelling and shaping of character as a doctor, and how might a study of Homer help with such dilemmas? We suggest that a close reading of an opening scene in Homer’s the Iliad can help us to better appreciate such ethical dilemmas. We link this with the early Greek tradition of parrhesia or ‘truth telling’, where frankly speaking out against perceived injustice is encouraged as resistance to power and inappropriate use of authority. We encourage medical educators to openly discuss perceived ethical dilemmas with medical students, and medicine as a culture to examine its conscience in a transition from an authoritarian to an ‘open’ society, where whistleblowing becomes as acceptable and necessary as good hygiene on the wards.

The outlook of physician histories: J. Marion Sims and ‘The Discovery of Anaesthesia’

Julia M Rosenbloom, Robert B Schonberger

The fact that doctors have a long tradition of writing medical history to interpret and direct their profession is well established. But readers (particularly modern physician readers) can also understand physician-authored histories as offering commentary and analysis of the world beyond medicine. In this essay, we offer a reading (perhaps a modern one) of J. Marion Sims’s 1877 article, ‘The Discovery of Anaesthesia’ which exemplifies the stance of looking both inward and outward from the medical field. We begin by discussing Sims, including the complicated legacy he left as a physician. Next, we review late 19th-century history with a focus on Reconstruction. Finally, we show how the modern reader can use Sims’s article both to trace the first use of ether and nitrous oxide for surgical anaesthesia and to provide a window into the 19th-century medical profession and the post-Civil War period. Through this study, we hope to show how to read both medicine and the world around it in physician histories.

‘Rhyme or reason?’ Saying no to mass vaccination: subjective re-interpretation in the context of the A(H1N1) influenza pandemic in Sweden 2009–2010

Britta Lundgren

During the swine flu pandemic of 2009–2010, all Swedish citizens were recommended to be vaccinated with the influenza vaccine Pandemrix. However, a very serious and unexpected side effect emerged during the summer of 2010: more than 200 children and young adults were diagnosed with narcolepsy after vaccination. Besides the tragic outcome for these children and their families, this adverse side effect suggests future difficulties in obtaining trust in vaccination in cases of emerging pandemics, and thus there is a growing need to find ways to understand the complexities of vaccination decision processes. This article explores written responses to a questionnaire from a Swedish folk life archive as an unconventional source for analysing vaccine decisions. The aim is to investigate how laypersons responded to and re-interpreted the message about the recommended vaccination in their answers. The answers show the confusion and complex circumstances and influences in everyday life that people reflect on when making such important decisions. The issue of confusion is traced back to the initial communications about the vaccination intervention in which both autonomy and solidarity were expected from the population. Common narratives and stories about the media or ‘big pharma capitalism’ are entangled with private memories, accidental coincidences and serendipitous associations. It is obvious that vaccination interventions that require compliance from large groups of people need to take into account the kind of personal experience narratives that are produced by the complex interplay of the factors described by the informants.

Shared Reading: assessing the intrinsic value of a literature-based health intervention

Eleanor Longden, Philip Davis, Josie Billington, Sofia Lampropoulou, Grace Farrington,Fiona Magee, Erin Walsh, Rhiannon Corcoran

Public health strategies have placed increasing emphasis on psychosocial and arts-based strategies for promoting well-being. This study presents preliminary findings for a specific literary-based intervention, Shared Reading, which provides community-based spaces in which individuals can relate with both literature and one another. A 12-week crossover design was conducted with 16 participants to compare benefits associated with six sessions of Shared Reading versus a comparison social activity, Built Environment workshops. Data collected included quantitative self-report measures of psychological well-being, as well as transcript analysis of session recordings and individual video-assisted interviews. Qualitative findings indicated five intrinsic benefits associated with Shared Reading: liveness, creative inarticulacy, the emotional, the personal and the group (or collective identity construction). Quantitative data additionally showed that the intervention is associated with enhancement of a sense of ‘Purpose in Life’. Limitations of the study included the small sample size and ceiling effects created by generally high levels of psychological well-being at baseline. The therapeutic potential of reading groups is discussed, including the distinction between instrumental and intrinsic value within arts-and-health interventions.

Charting Phelan’s ‘To Suffer a Sea Change’

Megan Winkelman, Jacqueline Ng, Audrey Shafer

Physicians and healthcare workers usually perceive their medical record entries as documentation rather than construction. In the following article, we extract a medical record from a narrative, Peggy Phelan’s pathography of glaucoma, ‘To Suffer a Sea Change’. From information about encounters described by Phelan, an ophthalmologist reconstructs progress notes similar to those that would be key to a glaucoma patient’s medical record. Rather than condemning the arcane pointilism of the medical record as a poverty of language, or isolating the pathography as an academic text, we hope to instead appreciate what their collaborative dialogue offers the study of disease. While the points of divergence between these texts will demonstrate failures in communication, they will also unearth an enriched dialogue.

Mapping a surgeon’s becoming with Deleuze

Sayra Cristancho, Tara Fenwick

The process of ‘becoming’ shapes professionals’ capability, confidence and identity. In contrast to notions of rugged individuals who achieve definitive status as experts, ‘becoming’ is a continuous emergent condition. It is often a process of struggle, and is always interminably linked to its environs and relationships. ‘Becoming’ is a way of understanding the tensions of everyday practice and knowledge of professionals. In this paper, we explore the notion of ‘becoming’ from the perspective of surgeons. We suggest that ‘becoming’, as theorised by Deleuze, offers a more nuanced understanding than is often represented using conventional vocabularies of competence, error, quality and improvement. We develop this conception by drawing from our Deleuze-inspired study of mapping experience in surgery. We argue for Deleuzian mapping as a method to research health professionals’ practice and experience, and suggest the utility of this approach as a pedagogical tool for medical education.

Enhancement, ethics and society: towards an empirical research agenda for the medical humanities and social sciences

Martyn Pickersgill, Linda Hogle

For some time now, bioethicists have paid close attention to issues associated with ‘enhancement’; specifically, the appropriate use and regulation of substances and artefacts understood by some to improve the functioning of human bodies beyond that associated with ‘normal’ function. Medical humanities scholars (aside from philosophers and lawyers) and social scientists have not been frequent participants in debates around enhancement, but could shine a bright light on the range of dilemmas and opportunities techniques of enhancement are purported to introduce. In this paper, we argue that empirical research into the notion and practice of enhancement is necessary and timely. Such work could fruitfully engage with—and further develop—existing conceptual repertoires within the medical humanities and social sciences in ways that would afford benefit to scholars in those disciplines. We maintain that empirical engagements could also provide important resources to bioethicists seeking to regulate new enhancements in ways that are sensitive to societal context and cultural difference. To this end, we outline an empirical agenda for the medical humanities and social sciences around enhancement, emphasising especially how science and technology studies could bring benefits to—and be benefitted by—research in this area. We also use the example of (pharmaceutical) cognitive enhancement to show how empirical studies of actual and likely enhancement practices can nuance resonant bioethical debates.

Breaking down the wall: a narrative approach to addiction

Katie Grogan, Erin Zerbo

Addiction is a pervasive medical and sociological concern, and yet its presence is still met with stigma, even within the healthcare community. There is an extensive literature documenting the negative attitudes of medical trainees and professionals towards substance users, but there does appear to be hope: expert-led clinical experience and addiction-focused teaching seem to increase empathy and inspire confidence in treating substance users.1 However, there is still much work to be done. Although a number of educational interventions have demonstrated efficacy, none has been implemented on a widespread basis, likely due to time pressures in already-packed curricula.2

The two of us, a medical humanist and an addiction psychiatrist, decided to take an alternate approach and use literature as a means of teaching about addiction, while simultaneously attempting to humanise it. We created ‘Literature and Addiction’, an interdisciplinary seminar within the Master Scholars Program in Humanistic Medicine at New York University School of Medicine (NYUSoM). Enrolment is open to anyone affiliated with NYUSoM, but the majority of participants have been first-year and second-year medical students. The seminar is paracurricular, and has run for three semesters now.

Traveling within the Case by Atsuro Morita

4 Janvier 2016 - 6:38pm

On a boat sailing through the still waters of the Noi River, a tributary of the Chao Phraya River in Thailand, Miura-san, a senior male engineer from a Japanese engineering consulting company, grows increasingly excited about the legendary Dutch irrigation engineer Homan van der Heide, who designed the basic plan for the entire water infrastructure of the delta in the early 20th century (Ishii 1978). At the moment, we are traveling in the dense and complicated network of watercourses in the western part of the upper Chao Phraya Delta. Here a maze-like network of small channels connects the Noi with the Chao Phraya. Although this entire delta area has long been the object of human intervention, the dense vegetation on the banks and meandering watercourses seem far from an artificial landscape.

Figure 1. Source: from Ishii 1978, p 219, with permission from Center for Southeast Asian Studies, Kyoto University. http://www.cseas.kyoto-u.ac.jp/en/

Miura-san is comparing these seemingly chaotic channels with the map in front of us (figure 1). More precisely, he is comparing the canal network of the eastern bank of the Chao Phraya River, whose tributaries appear orderly and grid-like on the map, with the labyrinthine watercourses of the western bank, where we are traveling. The delta, which has been cultivated to become these two contrasting areas – the carefully ordered network of canals of the Chao Phraya’s eastern bank, and the more chaotic waterways of the western bank – is especially effective as flood management systems go. The maze-like network in the west functions as a huge retention zone to store excess water, protecting the canal grid on the opposite bank. Thus, Miura-san was doubly impressed, both by the skill of the Dutch engineer to design the modern canal network of the eastern bank, and by the ingenuity of this heterogeneous system that hinges on the distinct features of the eastern and western landscapes.

One way to think about a case is as an epistemic object that a practitioner manipulates, in the way that a medical provider records, classifies, and compares clinical cases. However, as I learned on this boat trip, environmental scientists, civil engineers and infrastructure designers engaged with the case in a different way. Because they deal with objects with extensive spatial and geographic ranges, the act of a fieldtrip lets them travel into the case. This post unpacks the question: How does traveling within a case differ from the treatment of cases as objects to be compared? And how does this traveling shape our understanding of what constitutes a whole object?

The fieldtrip to the Chao Phraya River was organized by a Japanese engineering consulting company, mainly for Japanese participants of a conference on flood mitigation held in Bangkok. The seminar was held by the Japanese International Cooperation Agency, with the goal of developing a new mitigation plan in the Chao Phraya Delta after the devastating 2011 floods. With the exception of myself, the participants of the boat trip were engineers, hydrologists, and computer scientists. More than half were based in Japan, visiting Thailand only occasionally for meetings and conferences such as this. The fieldtrip was planned by the consulting company, which acted both as a subcontractor of the infrastructure design and as a coordinator of the project, to facilitate a shared understanding of the “case” of flood management with which these various people were engaging.

But what does “case” actually mean in this context? The project aimed to develop a new delta flood management plan by focusing on three major aspects: an assessment of the river hydrology, the design of basin-wide infrastructures, and the development of a flood forecast system. These diverse components were brought together to improve responses to future flooding in the Chao Phraya Delta. In the report that came out as the final product of the project, an imagined future flood is called the “design flood.” The report takes the actual 2011 flood as a template for the design flood because it is the largest flood in the recorded past. So the case of flood management here is a composite of a geographical entity, the Chao Phraya Delta, and an imagined flood, which is at once a probabilistic entity in the future and an actual event in the past.

This is what the case looks like on paper. In practice the case is both an instance of intervention and the object upon which to intervene. Donald Schön indicated more than thirty years ago that “case” and similar words “denote units which make up a practice” (Schön 1983: 60). For him, a central feature of professional practice is the use of cases to frame a problem. Professionals draw analogies and make comparisons between the problem at hand and other cases they know from experience, in order to figure out how to deal with the current situation. Annemarie Mol also touches on this point in her entry to this series: “[a] case carries knowledge […] about an occurrence that, even though it may have happened just once, is still telling, indicative, suggestive” (2015). In short, the case is an opportunity to consider the very practice of intervention.

In one sense, past cases gain their meaning in relation to a problem. But through comparison with past cases, the problem situation becomes one of the cases. Thus, the case of the Chao Phraya floods takes different forms, depending on what other cases practitioners conjure up. For the hydrologists, the “case” is a drainage basin of the Chao Phraya River whose hydrological characteristics need to be explored; for the engineers, it is a set of infrastructural interventions to control the river flow.

The flood’s multiplicity (Mol 2002) is what made the fieldtrip less straightforward than I had initially imagined. It quickly became clear to me that hydrologists and engineers were not naïve enough to believe that going out to the field would allow them to reach a single, shared solution. In fact, rather than reaching a consensus among the diverse expert viewpoints, Miura-san encouraged the participants to explore their own questions on the boat trip. As the engineer’s lack of interest in the coherent whole suggests, what I found during the trip was rather complex relations between the situated and traveling viewpoints and the overviews of the delta water system, which itself is multiple. These complex relations resemble what Donna Haraway (1988) argues in her well-known essay on situated (and partial) visions.

It was actually hard to see commonality between what we would see around us while sailing and what the hydrologists and engineers discussed and treated as “the delta” in other sites of practice, such as in labs, project workshops, and formal conferences. Their discussions typically focused on combinations of maps and diagrams on paper and PowerPoint slides that represented various aspects of the delta’s hydrological patterns. These artifacts were connected with water flows, topography, and precipitation observed in the “field” by automatic measuring devices. These discussions were occasions where I could observe them behaving like Shön’s practitioners: they conjured up cases they knew from personal experience or from the literature, and they relied on comparisons to highlight characteristics of the Chao Phraya case, or to examine the possibility of applying existing infrastructure designs to problems in the delta.

However, in the boat trip the participants approached the case quite differently. In contrast to manipulating the case in the labs and conference rooms, on the river delta we found ourselves traveling within the case. During the fieldtrip, the delta became our entire environment. It was very difficult to imagine the delta and its water flows as the objects of practice, when we were literally encompassed by them. The conversation among hydrologists and engineers also reflected this fact and had a very different sensibility from those discussions held in other sites, where they were able to characterize the delta as an object of intervention by connecting it with other cases. In order to connect the present case with past ones, we needed to draw external relations between the two – a difficult task when you are located inside the case being examined. Instead, what we were doing on the boat was seeing the case from within.

This inside view has some distinct characteristics. In the trip the vision of the entire delta such as maps and diagrams, which was so visible and salient in the labs and conference rooms, receded into the margin. Instead our attention was constantly drawn to the smaller parts of the delta that we ran into and passed through, including the meandering canal network between the Noi and the Chao Phraya. But this does not mean that we were working on “smaller” cases or objects during the trip. The encompassing existence of the delta, taking the form of the watery landscape around us, as well as the project’s formal aim to formulate a plan for the entire delta, constantly drew our attention back to the overview of the delta gained in the labs and conference rooms. Thus, most of the participants never parted with maps, since they acted as essential artifacts to get back to the “delta as a whole”. Just like Miura-san did in his comparison between the meandering watercourses we traversed in the west and the canal grid in the east, we constantly moved between the scenes around us and what we imagined as the entire delta.

This constant shift between the immediate scenes and the maps lead to another distinguishing characteristic of the view from within the case. On the trip, we encountered many scenes that we had never imagined in the conference room: Trains of huge barges dragged by tugboats; numerous quarries on the banks, which seemed to be providing building materials to the barges; an old, mysterious riparian town where most of the houses were built almost on the water (figure 2); a huge number of water hyacinths covering the surface of the Noi River; and the jungle-like canal network between the Noi and the Chao Phraya.

Figure 2

These unexpected scenes provoked a lot of questions, some of which seemed only vaguely related to the issue of flood protection in the delta. But because we were surrounded by the undeniable material existence of the delta and its water, many of us were somehow forced to think more carefully about these seemingly marginal scenes. For example, my friend Omori-san, a hydrologist who had kindly invited me to the conference, was fascinated with the riparian commerce in the delta, which had a longer history than land transport. Using old hydrographs he found in a library, he started thinking about these networks of trade in relation to the broader changes of the river course over time, and ended up formulating a hypothesis about historical changes of water flow in which canal digging acted as a central factor that induced the change of the course of the river.

The constant shifts between those unexpected scenes and the topographic overviews urged the hydrologists and engineers to see the delta as a dynamic and ever-changing entity. How did those diverse human and non-human activities, ranging from pre-modern canal digging, to modern infrastructure building, to the proliferation of water hyacinths, constitute what we were calling the delta? This is a dual question, because the “delta as a whole” denotes both an object we could see on the map and the environment we were traveling through. Eventually this movement led both Miura-san and Omori-san to rethink the specific dynamic forces that formed the present delta. For Miura-san, the civil engineer, this took the form of Homan van der Hiede’s engagement with the delta through infrastructure building, while for Omori-san it was the historical change of the river course brought about by both human and natural forces. Apparently, their inclination toward historical explanations was at least partly the product of their conversations with me, the anthropologist who acted as a guide to the social and cultural background of the local area.

These engagements with the delta seem to explain why fieldtrips are often given a place of importance in civil engineering and water management projects. It is not because such trips allow practitioners to encounter the “true” or “real” delta, but because these encounters push the practitioners toward more experimental thinking, as they face the constant back and forth of unexpected scenes and the imagined whole of the case. Of course, at the same time, this whole is not a singular entity. Just as the professionals are always engaging with a multiple case when they meet in the conference room or laboratory, during a fieldtrip they conjure up different versions of the whole. For the hydrologists, it is a primarily river network and drainage basin; for the engineers, it is the total of infrastructures, and for me, when acting as their guide, it is a historical landscape.

What, then, can anthropologists and ethnographers learn from this version of a fieldtrip? There are certainly commonalities with our own fieldwork practices. An anthropologist also treats his/her case both as an object of analysis and a place to travel and live. As Marilyn Strathern notes, this distinction corresponds to “the desk” and “the field”: two central sites of ethnographic practice (Strathern 1999). Many anthropologists treat the field as more “real” than the desk. Engineers and hydrologists, however, usually do not take such a view. For them, the archetype of the real is based on data gathered in the field by measuring devices. Because the cases presented in labs, workshops, and conferences are tightly connected to these data sets, they are more real than the practitioners’ own travel experiences, which do not in themselves yield what they think of as data. However, partly because of this marginality in their practice, fieldtrips have significance for engineers and hydrologists as sites for experimental thinking.

Figure 3

At the end of the trip, we landed on the bank at a closed sluice gate in the upper delta. We found the final surprise there. Attached to the sluice gate, there was a huge machine to collect water hyacinths gathering on the water surface (figure 3). A Thai colleague explained how water hyacinths, which were introduced long ago as decorative plants, had now become an environmental threat and a hindrance to infrastructural operations. Such plants never appeared in the reports or in conference room discussions. But momentarily, at least, as we paused near the sluice gate at dusk, the hydrologists and engineers quietly reflected on how this multispecies presence might affect the delta and its floods. This scene and conversation with them also led to my own experimental thinking, as I envisioned a cyborgian infrastructure consisting of plants and sluice gates (Morita 2015). This wild image sheds light on the anthropological meaning of traveling within the case. While often overshadowed by the issue of the “real” nature of the field versus our representations of it, the field has also been an experimental space for anthropology. Journeying through these fields, anthropologists and their interlocutors have become fellow travelers, encountering surprises and engaging in partially connected experimentations.

References

Haraway, Donna. 1988. “Situated Knowledges – the Science Question in Feminism and the Privilege of Partial Perspective.” Feminist Studies no. 14 (3):575-599.

Ishii Yoneo. 1978. Thailand: A Rice-growing Society. Honolulu: University Press of Hawaii.

Japan International Cooperation Agency, CTI Engineering International, Oriental Consultants, Nippon Koei, and CTI Engineering. 2013. Project for comprehensive flood management plan for the Chao Phraya river basin : final report. Japanese International Cooperation Agency.

Mol, Annemarie. 2002. The body multiple: ontology in medical practice, Science and cultural theory. Durham: Duke University Press.

Mol, Annemarie. 2015. Exemplary: The case of the farmer and the turpentine. Somatosphere.

Morita, Atsuro. 2015. Multispecies Infrastructure: Infrastructural Inversion and Involutionary Entanglements in the Chao Phraya Delta, Thailand. Ethnos.

Schön, Donald A. 1983. The reflective practitioner: how professionals think in action. New York: Basic Books.

Strathern, Marilyn. 1999. Property, substance, and effect: anthropological essays on persons and things. London ; New Brunswick, NJ: Athlone Press.

Atsuro Morita teaches anthropology at Osaka University. He has done ethnographic research on technology development in Thailand focusing on how ideas, artifacts, and people travel in and out of the country. He is currently co-convening a Japan-Denmark collaborative project titled Environmental Infrastructures funded by Japan Society for Promotion of Science. His research has been recently published in Science, Technology and Human Values, HAU: Journal of Ethnographic Theory (here and here); and Ethnos (forthcoming).

Web Roundup: 2015 by Lily Shapiro

31 Décembre 2015 - 6:18pm

As the year winds up, many publications around the web are doing “highlights of 2015”-type lists, so I thought I’d compile some of these to give a bit of shape to the end of the year, and to draw attention to a few things you might have missed.

Science outlined the 2016 US budget that was just passed, focused specifically on which science agencies stand to win in the coming year. The takeaway? This budget is mostly good news for science and research!

The New Yorker has a list of “The 6 Most Interesting Psychology Papers of 2015”, as well as the “The Most Notable Medical Findings of 2015”. And their “Best Quotes from the Tech Industry in 2015” rounds up a few of 2015’s more interesting tech news stories, including the open letter from Stephen Hawking, Elon Musk, and others arguing against the development and escalation of autonomous weapons, and the NY Times’ investigation into the work culture at Amazon.

Popular Science has a compilation of the top plague stories of 2015, which includes articles on polio, drug resistant antibiotics, and Ebola. They also have a roundup of “the good viruses of 2015,” including a look into the role of viruses in the human microbiome as well as the cutting edge of viral therapeutics.

The New York Times has a compilation of “Medical and Health News that Stuck with us in 2015,” which highlights stories on Ebola, end of life care and decision making, anxiety, and mental health care in West Africa, among other things. And The Atlantic wrote an article about how 2015, although plagued by violence and unrest, was still “The Best Year in History for the Average Human Being.”

The BBC published their biggest tech stories of the year, as well as their best long reads in science and the environment.

NPR’s most popular “daily life” story was on back pain and why it doesn’t exist in all parts of the world, and Wired has the best of the year’s “Otherworldly Science Images.”

The Atlantic also published a list of the “50 Best Podcasts Episodes of 2015”, something to stock up on if you have upcoming travel.

And, Google published their annual report of the top searches for the year, broken down by category, which you can explore in various forms here.

These last are not compilation lists, but in “Programs Expand Schizophrenic Patients’ Role in Their Own Care,” the New York Times covers a spate of new mental health programs in the US that are seeking to shift the focus of mental health care, based in part on the results of a study published earlier this year which showed that schizophrenic patients treated with a combination of medication and talk therapy, as opposed to just medication, have better outcomes.

If you missed this article in The Atlantic about the relationship between antibiotics (particularly those given to feed animals) and obesity, it is worth the long read.

Lastly, if you don’t have any resolutions yet, don’t worry, Vox explains why our brains are bad at planning for the future.

Happy 2016 everyone!

A polygraphic casebook by Susan Reynolds Whyte

21 Décembre 2015 - 5:47pm

There was a small glitch when our book Second Chances was almost ready to go to press. It was a layout problem. The Table of Contents was congested with too many chapters, too many vignettes, and too many authors[1]. We had to drop the authors’ names and in the end, for technical reasons, the good people at Duke set the vignettes instead of the chapter titles in bold. The Table of Contents that went to press gives the impression that we have made a casebook—a set of descriptive instances of individual people who survived AIDS when antiretroviral medicines became widely accessible. The problem that remained was not a layout problem but an authorial problem: the cases were highlighted and we who had authored them were in shadow.

‘We’ is a definitely plural pronoun. We were eight people[2], four from Denmark and four from Uganda, who did a study and wrote a book about it. All eight of us were authors, but our book is neither a monograph nor an edited volume in the conventional sense. We call it a polygraph. It resembles a lie detector—not because it reports a singular truth or discerns untruths, but because it marks vital processes simultaneously at different points in a social body. And it is based on polygraphy in the old sense of copious writing—piles of handwritten fieldnotes transcribed to electronic text.

We had worked together for years before we decided to systematically document a dramatic turn in Ugandan history: the ‘rollout’ of free antiretroviral medicines. In one way or another, we had all been touched by the AIDS epidemic—by the feelings of helplessness and injustice as people we cared about suffered and died while medicine was saving lives in richer parts of the world. When the antiretrovirals (the ARVs) were finally provided for free around 2005, a whole generation of people who expected to die of AIDS got a second chance to live. We wanted to write about those people.

We never doubted that the way to do it was to start with life stories. It seemed obvious because HIV had already become a narrativized condition. Positive people were encouraged to open up, to testify about their experiences to their peers and their treatment providers. News media were eager for the existential dramas of sex, life and death. Organizations supplying the medicines needed the personal accounts to justify the enormous expenses being poured into the effort. Public health researchers, as well as social scientists, found that experience-near descriptions made their analyses credible.

Case stories also seemed evident as an anthropological method. We were Africanists for whom the extended case and the situational analysis of the Manchester School were exemplary. We had seen the power of carefully unfolding a situation, progressively contextualizing it so as to portray a political economy or a broader pattern. It was a way to do ethnography.

The narrative possibilities pulled us as well. We saw the chronological potential in retrospective life histories combined with prospective following along through visits over a period of time. Stories of individuals would allow us to make connections over time, to see how one thing led to another, and more importantly, to listen to how our interlocutors knitted threads together or dropped stitches. So it was with the woman we call Jackie, whom our colleague David visited over a year and a half. In a strikingly frank manner, she confided her experiences and the surprising turns that her life took.

Early in their acquaintance Jackie told David how unhappy she was that Joseph, the father of her younger children, kept their relationship a secret. He refused to introduce Jackie to his parents, thus declining her recognition as a wife and denying their children acknowledgment as grandchildren. Although he clandestinely paid for the treatment of their HIV positive child, he would not publicly admit that he was the father. She was torn, wanting to leave him, but reluctant to forego the support he was giving her. On one occasion, Jackie even asked David for advice about what to do.

Finally she decided to make a break; she got ‘saved’ in a Pentecostal church and began saying that Joseph had demons, and that they were committing the sin of adultery. Indeed, Joseph was formally married; his first wife had made a point of asking Jackie if she knew why all of the children of this first marriage had died, implying that Joseph was HIV positive. At one visit, David found that Jackie had moved out of the rooms she shared with Joseph. But the split did not last long; she remarked that perhaps it was God’s plan that she should stay with Joseph. Still they quarreled regularly; she insinuated to him that he was the one who had infected her, even though she had earlier told David about the HIV diagnosis of her first partner, father of her eldest child.

At the last visit, she gave David the startling news that Joseph had died. Hoping at last to gain recognition from his family, she gathered the children and took them to the funeral where they could be presented as his only living heirs. Surprisingly, however, three other women showed up with children who all claimed Joseph as their father. His family knew nothing of these women either, but said they were prepared to provide support for all of his children. Thus it was only upon his death that Joseph’s children gained paternal grandparents.

There were so many stories as fascinating as Jackie’s. We could have concentrated our efforts on fewer. But we wanted diversity, which we felt was often lacking in the studies we had read of AIDS patients. We wanted to talk to men and women, poor and better off, rural and urban, and clients of different treatment programs, including some who had tried to pay for their treatment in the days before it was available for free.

We contacted 48 people on antiretroviral therapy, through seven different treatment facilities, and asked them to tell us their life stories, not just their sickness stories. How did you grow up, what about your family, your work? From the beginning we tried to talk to people in their everyday settings, not at their places of treatment, a strategy that de-centered AIDS and brought out what people were making of their second chances. Among these 48, we identified 23 whom we visited seven more times. And here I should write ‘they’ instead of ‘we’, because the Ugandan members of our team did most of the talking and visiting. From Denmark we followed along, reading the notes as they ticked in on our computers. And whenever we were in Uganda, we went along on the visits. But by and large, it was David and Jenipher and Phoebe and Godfrey who got to know the individuals, homes, families and workplaces of the people who became our cases.

The visits and revisits developed differently. Some interlocutors became friends and the researchers got involved with their lives and problems as friends do. There were phone conversations and text messages between visits; the researchers got to know other members of the family and followed the tensions and détentes that are a normal part of family life. Other interlocutors remained acquaintances, who were welcoming on some occasions, and more reserved on others. There were dramatic moments, as when Jenipher arrived to find the man she was visiting in jail on allegations of stealing a sheep. And there were routine calls ‘just checking in’ when there was not much new to report.

When a year and a half had passed, the visits ended and we faced hundreds of pages of notes. Brainstorms and difficult choices and attempted divisions of responsibility followed, resolving into the plan that became Second Chances. The lives we had documented became cases as we began to treat them as source material—all 23 arranged neatly in ring binders ready to be mined for inspiration in writing the topical chapters that would compose the book. At this point they formed the stuff of classical extended cases, based on repeated conversations over more than a year and capturing multiple social positions and events. However our plan was not to work from case to case, but to abstract from this material in order to illuminate—but also to illustrate—our analytical points about generational consciousness, sociality and chanciness. Our extended cases provided both analytical insight and, when chopped into pieces, useful and hopefully ‘apt’ examples.

We also wanted to preserve some cases as longer texts that could convey to readers the individuality and diversity of the people whose lives were prolonged by ARVs. We hit on the idea of letting one case introduce each chapter—easy enough since the chapters themselves provided analytical discussions of everyday concerns like families, partners, food, work and so on. We selected cases for their evocation of the chapter topics, but they were always about all kinds of other themes as well. The longer texts provided singularities we sought to reason about, rather than mere material that could be assimilated to theories. Almost every case had a theme about children—children being the most important second chance for nearly everyone—but Jackie’s case showed with particular clarity how HIV played into the social recognition of children in this patrilineal society.

In many ways those cases are what capture readers, especially students, and allow them to see how we made the analyses that followed. One of the manuscript reviewers had cautioned us against presenting the material as ‘an array of cases laid out for the reader to inspect.’ In the end though, we did lay out an array and made a virtue of it. We found that the casebook format allowed us to discuss a corresponding assortment of analytical issues, while still ‘making a case’ in the sense of an overall argument about second chances. The polygraphic casebook also permitted us to capture what was essential about our enterprise: assembling evidence through multi-sighted investigation at several locations in the social body.

 

 

 

Notes

[1] 

[2] Phoebe Kajubi, David Kyaddondo, Lotte Meinert, Hanne O. Mogensen, Godfrey Etyang Siu, Jenipher Twebaze, Michael Whyte, and Susan Whyte

 

References

Whyte, Susan Reynolds (ed.) 2014. Surviving AIDS in Uganda. Durham: Duke University Press

 

Susan Reynolds Whyte, Professor of Anthropology, University of Copenhagen, carries out research in East Africa on social efforts to secure well-being in the face of poverty, disease, conflict, and rapid change. For two decades she has worked with African colleagues on Enhancement of Research Capacity projects. She is the author of Questioning Misfortune: The Pragmatics of Uncertainty in Eastern Uganda and co-author of Social Lives of Medicines.

Book Forum—Anand Pandian’s “Reel World: An Anthropology of Creation” by Todd Meyers

17 Décembre 2015 - 7:11am

 

Anand Pandian’s Reel World: An Anthropology of Creation is a fascinating and truly inspired inquiry into questions of experience and the media through which experience is rendered (word, image, and sound) in and about Tamil cinema and beyond.  Pandian walks a path where visions are realized between seen-ness and feltness, between openness and the limits of the frame.  Much in the way Gilles Deleuze appraised Merleau-Ponty’s phenomenology as a way to think through the problem of sensation in the paintings of Francis Bacon—whose figures (and their creator) struggled to “make” sensation within the dimensions of the canvas—Pandian offers a similar appraisal of the action and trace of creation, not of the body and its excesses, but of the cinematic scene and its making.  At its core, Reel World is a fine-grained ethnography of cinema and filmmaking—of creating images, taming images, blurring them and infusing them with other things—that extends the horizon of ethnographic telling.  Creation is not so much technique—not simply the shape of content, of character and storyline, of special effects—but a contest between minor voices, ambitions, the parallel technologies of writing and designing sound+image, dreams, stagings, recordings, and lost traces, and for Pandian, looping the reel of this real back through a set of his own anthropological concerns.

The following is an exceptional set of commentaries. We hope you enjoy.

 

Comments on Anand Pandian’s Reel World: And Anthropology of Creation (Duke University Press, 2015)

 

A Horizon of Possibility
Eduardo Kohn
McGill University

Questions of Scope: The Reel and the Réel
Stephen Chrisomalis
Wayne State University

Anand Pandian’s Anthropology of Creation
Stephanie Spray
Harvard University

Colors
Brian Larkin
Barnard College

Reel Waves
Stefan Helmreich
Massachusetts Institute of Technology

Break with the Program
Richard Baxstrom
University of Edinburgh

 

For a Creative Anthropology: A Reply
Anand Pandian
Johns Hopkins University

 

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