While a bit late, here is the August round-up of some of the most recent journal publications that may be of interest to Somatosphere readers. This month’s post provides a bevy of reading opportunities for those last days of summer. Of note are the many special issues this time; while Somatosphere typically announces special issues separately, there were so many this time, it seemed best to review them here.
The recent issue of American Ethnologist has two particularly relevant offerings:
The judicialization of biopolitics: Claiming the right to pharmaceuticals in Brazilian courts
João Biehl
In Brazil, low- and middle-income patients are not waiting for new medical technologies to trickle down. They are using free legal assistance and a responsive judiciary to access health care, now understood as access to pharmaceuticals. The pharmaceuticalization and judicialization of health reveal an experiential-political-economic field beyond the biopolitics of populations. At stake in this field are the ways in which government (qua drug regulator, purchaser, and distributor) facilitates a more direct relationship, in the form of technology access, between atomized and ambiguous political subjects of rights and the biomedical market. Not fully governed by either state or market, these subjects negotiate the constraints and possibilities of a technological society using jurisprudence. They work through available legal mechanisms and instantiate new social fields to engage and adjudicate their demands, concretizing abstract human rights. In the process, the judiciary is consolidated as a critical site of politics—and of political economy.
How to do things to children with words: Language, ritual, and apocalypse in pediatric HIV treatment in Botswana
Betsey Behr Brada
Concerned that children understood the word AIDS to portend their imminent deaths, U.S. pediatricians in Botswana used ritual speech to reveal HIV-positive children’s diagnoses to them in an effort to ensure these children took their medications. They relied on euphemisms such as soldier and bad guy, gradually and methodically replacing them with biomedically derived terms. While the ritual was predicated on transparency and accuracy, pediatricians’ conviction that the word AIDS impaired children’s ability to manage their infections led them to silence representations of the epidemic as anything other than a manageable condition in order to create a stable object of biomedical intervention.
In addition, the journal offers reviews of new books by P. Sean Brotherton (Revolutionary Medicine: Health and the Body in Post-Soviet Cuba), Susan J. Shaw (Governing How We Care: Contesting Community and Defining Difference in U.S. Public Health Programs), and Julie Livingston (Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic).
The journal Anthropology & Aging Quarterly just released a special issue focused on the aging body. As Jason Danely writes in the editor’s introduction to the issue, the question at hand is: “How does old age and aging contribute to anthropological conversations on embodiment, bodily aesthetics, health, biopolitics, and longevity?” A theoretical discussion by Ender Ricart opens the issue, entitled “From Being to Ontogenetic Becoming: Commentary on Analytics of the Aging Body“, with a subsequent (forthcoming) discussion by Katrina L. Moore, Athena C. McLean, and Mark L. Luborsky. Following that are five articles:
Postmenopausal Health and Disease from the Perspective of Evolutionary Medicine
Andrew W. Froehle
Menopause normally occurs between 45-55 years of age, marks the end of a woman’s reproductive lifespan, and is accompanied by a reduction in estrogen that has substantial physiological effects. The standard medical view is that these changes underlie high postmenopausal disease rates, defining menopause as an estrogen deficiency condition needing treatment. This view stems from the idea that extended postmenopausal longevity is a consequence of recent technological developments, such that women now outlive their evolutionarily-programmed physiological functional lifespan.Increasingly, however, researchers employing an evolutionary medicine framework have used data from comparative demography, comparative biology, and human behavioral ecology to challenge the mainstream medical view. Instead, these data suggest that a two-decade human postmenopausal lifespan is an evolved, species-typical trait that distinguishes humans from other primates, and has deep roots in our evolutionary past. This view rejects the inevitability of high rates of postmenopausal disease and the concept of menopause as pathology. Rather, high postmenopausal disease risk likely stems from specific lifestyle differences between industrialized societies and foraging societies of the type that dominated human evolutionary history. Women in industrialized societies tend to have higher estrogen levels during premenopausal life, and experience a greater reduction in estrogen across menopause than do women living in foraging societies, with potentially important physiological consequences. The anthropological approach to understanding postmenopausal disease risk reframes the postmenopausal lifespan as an integral period in the human life cycle, and offers alternative avenues for disease prevention by highlighting the importance of lifestyle effects on health.
Active Aging: Hiking, Health, and and Healing
Rodney Steadman, Candace I.J. Nykiforuk, and Helen Vallianatos
This article examines the illness and recovery experiences and perceptions of physically active middle aged and older adults participating in hiking groups. These perceptions are examined within the local milieu of their group and the larger social context of biomedical norms of healthy older bodies. Discourse on the body was viewed through the lens of medical anthropology and data were analyzed using embodied ethnography. There were 15 participants (53 percent female) and all were of European descent. The hiking group provided participants with meaningful spaces and places where they could explore all aspects of their health with the support of others who had undergone similar life experiences. The physical activities they engaged in as a group were therapeutic and transformational for several members. Their group activities created a deep sense of community and aided in their healing processes. Holistic health programs such as hiking groups could provide an alternative or ancillary treatment options. However, cost, location, opportunities for socialization, and the physical abilities of potential participants should be seriously considered before adopting a hiking program for this demographic.
Population Aging as the Social Body in Representation and Real Life
Alexandra Crampton
This article uses three levels of body analysis as presented by Nancy Scheper-Hughes and Margaret Lock to compare old age as a construct in population aging discourse with research on lived experience of people aging in the United States and Ghana. I first describe how demographers construct social bodies as becoming “gray” through population statistics and how policy makers then use dependency ratios to rationalize intervention on behalf of older adults in the body-politic. The construction of old age within this discourse is then compared with ethnographic research that suggests this construct leaves out much of the lived experience familiar to anthropologists of aging. Rather than debunk the old age construct, however, the purpose of this article is to argue for study of population aging discourse as constituting a social body reflecting cultural constructions of nature and society. Moreover, this representation is made real through policy and social intervention work, and with very real effect on people’s lives. As such, an anthropology of aging bodies can include the social life of old age as a social construct.
The Uncertain Bodies and Spaces of Aging in Place
Lauren Penney
In the United States, “aging in place” has been established as the preferred method of aging. This article examines the work, processes, and tensions involved in aging in place in the southwest US, focusing on the experiences of chronically ill older adults receiving Medicare-reimbursed home health care. Based on an in depth ethnography, it examines the resources and work that go into aging in place amid uncertainty, and highlights how processes related to the integration of person and place are negotiated and contested between older adults, family members, and home health nurses. Drawing on definitions of place from geography, I argue that aging in place should be understood using a processual lens to highlight the ways that health regimes aimed at facilitating aging in place can, at times, reinforce and introduce sense of bodily risk, shift embodiment and daily practice, and require negotiations among household members. I also point to the difficulties people face in maintaining aging in place when supports are lacking and futures uncertain.
As the population in the US ages, there is increasing need to study aging In this article I describe a familial dyad between the Filipina caregiver and the Israeli aged patient. I argue that a familial dyad emerges based on bodily forms of care. This familial dyad becomes a mechanism for adaptation to and enduring of the daily and intimate encounter of a foreign caregiver and an aged dying patient. The familial dyad provides insight into the phenomenology of the care experience as a function for re-conceptualizing social relations and intra-family dynamics. This will broaden our understanding of the possible varieties of bodily-based practices and their relational repercussions as interpersonal care engagements. The form of a familial dyad underscores the dynamism and complexity of care practices as intersubjective and corporeal modes through which one body engages the other. These care practices which are based on repetitive physical actions allow immediate first-person access to the other participants’ subjective state. Thus, in an era of globalized care, the familial dyad takes form and shape at the most intimate juncture between the subjects, their corporeal and interpersonal being.
Anthropology & Medicine has a special issue currently, entitled “Therapeutic crises, diversification and mainstreaming”. As the editors David Parkin, Kristine Krause and Gabi Alex write in their introductory comments, “Peak or prolonged: the paradox of health crisis as subjective chronicity“:
“The authors of this special issue spell out different perspectives on how crises are evoked and used to control or justify standardisation, diversification and mainstreaming. Based on ethnographic fieldwork on biomedical knowledge, spiritual healing, and social support networks, they address the following questions: When and how is a discourse on crises employed in order to mobilise resources or implement new regulations? How are differences and processes of diversification constructed, represented and encountered through medical knowledge in situations of crises? How is a crisis managed through therapeutic practices and by controlling difference? What kind of socialities are brought to the fore in order to anticipate and prevent crises and provide security in a situation of sickness? To what extent are crises a turning point in encouraging mainstreaming via diversification?”
The issue’s articles include:
Medical crises and therapeutic talk
David Parkin
Coexisting medical traditions operate at different levels of scale. In rural eastern Africa there are diviners and herbalists whose clients are drawn from the immediate neighbourhood. Some develop healing reputations more widely over a region or nation, sometimes with prophetic and witch-finding powers. Biomedical clinics and hospitals are also interlinked regionally, nationally and internationally. Patients or carers may seek healthcare by moving through these different levels, sometimes beginning with a neighbourhood healer and sometimes trying out different therapies simultaneously. Sicknesses and misfortunes are often first discussed within a family or homestead, with concern for the victim extending to all its members. The talk is based on assumed trust among its members. However, if unresolved, the affliction may trigger a crisis that breaks the trust, so that healers beyond the neighbourhood are sought, whether prophetic/witch-finding or biomedical. Taken out of the context of family and homestead intimacy, the talk blames the ailment on the malevolence or negligence of individuals in the community. Talk about sickness among sufferers and between them and healers, is thus transformed from that which seeks resolution in amity to that which seeks culpability and, sometimes, retribution. A similar process of sickness talk changing through its appropriation by wider scale and more powerful medical authority also occurs in western biomedical hospitals and clinics.
Diversity as valued and troubled: social identities and demographic categories in understandings of rapid urban growth in Vanuatu
Alexandra Widmer
This paper deals with the simultaneous mainstreaming and diversification of ni-Vanuatu social categories associated with the ways in which population growth is understood as a possible crisis in both demographic knowledge and everyday ni-Vanuatu knowledge. The author is interested in understanding the downplaying but primarily the amplification of difference with respect to place, generation and gender identities. The relationship between reproduction, social reproduction and the multiple meanings of modernity is at issue. In the expert knowledge of demography that proffers advice for the ni-Vanuatu state, it is the lack of modern development – in the form of adequate biomedical birth control, western education, and the equality of women – that is the implicit cause of population growth. Yet, many ni-Vanuatu see population growth as tied to the troubles that arise from the dilution of traditional social forms: there is too much modernity. In both demographic and ni-Vanuatu everyday narrations of the potential population crisis, diversification and mainstreaming take place and vulnerabilities are produced.
Responding to medical crises: AIDS treatment, responsibilisation and the logic of choice
Nadine Beckmann
The framing of HIV/AIDS as a crisis has facilitated the rollout of large-scale intervention programmes that represent an enormous effort at mainstreaming biomedical rationalities and neoliberal notions of responsibilisation and self-care. Based on a ‘logic of choice’ (Mol 2008) and ‘responsibilised citizenship’ (Robins 2005a), although veiled in a language of rights and partnership, the heavy focus on individual behaviour and a pharmaceutical ‘solution’ to AIDS shifts the burden of responsibility for the success of the heavily funded programmes onto the shoulders of the patients and conceals alternative forms of responsibility. Analysing how HIV-positive people in Tanzania navigate life with HIV and the complex treatment regimens, this paper looks beyond biomedical rationality, which places the preservation of individual biological life at the centre of its logic, and analyses people’s constant struggle to negotiate the meaning of ‘responsible behaviour’ in the context of their lived realities. This repositions the notion of responsibility in the realm of the social and reveals the rationality behind apparently irrational practices.
Old diseases and contemporary crisis. Inherited blood disorders in the Sultanate of Oman
Claire Beaudevin
This contribution draws on ethnographic research conducted in Oman on inherited blood disorders (IBD). By interpreting results from population genomics studies that trace mutation processes over centuries of human activities, lay-representations of IBD often consider them historical evidence. The perceived spread of IBD in Oman may thus provide unusual historical depth in a country where past conflicts have been erased from historiography and representations of time are politically prescribed. Through the notions of crisis and diversification, this contribution shows how IBD’s chronicity challenges the healthcare system and became a national issue, politically labelled as urgent. The paper casts light on several aspects of contemporary Omani society: it first addresses the dynamics of disease taxonomies – although biomedically described in the early twentieth century, IBD were not individualized within local nosologies until the 1970s. Secondly, it shows how biomedical knowledge about IBD led to diversification within the healthcare system, through the introduction of clinical genetics, genomics, and community genetics. Thirdly, it attempts to broach modalities of the biopower exerted by the Omani regime over its citizens: IBD are targeted by various public health measures that jeopardize patients’ autonomy by aiming to control their bodies through their matrimonial behaviour. In addition, two aspects of the intersections between Omani social hierarchy and IBD are noteworthy: the creation of a patients’ association that constitutes a potential disturbance of the social order; and the way IBD mutations traced by genomics are considered direct historical documents that challenge representations of the recently crafted ‘Omanity’ in a context of regional concern regarding national identities’ durability.
Crisis as deferred closure – clairvoyant counselling in contemporary Danish society
Vibeke Steffen
Clairvoyance, spiritualism and healing are popular ways of seeking guidance and personal development in contemporary Danish society. Although few Danes are self-declared spiritualists, many believe in the existence of ghosts and the ability of clairvoyants to communicate with the departed, and the market of alternative therapies offers a number of mediumistic activities. In anthropological writings, such activities are often associated with crisis and the re-establishment of order. The concept of crisis refers to a time of great difficulty or danger or when an important decision must be made. Looking at the people who seek guidance from the spiritual world, however, both the implication of a limited time span, the idea of great difficulty, and the indication of decision-making may be challenged. In some cases, spirit consultations initiate processes of new definitions and classifications of problems, but in others they just seem to confirm old problems in an ongoing effort to cope with the difficulties of everyday situations. The aim of this paper is to explore the diversity of outcomes from clairvoyance and spiritualist consultations. Focusing on the particularity of specific cases, the author wants to demonstrate the analytical implications of seeing these activities through the lens of crisis. Instead of pushing the framework of crisis, meaning and order, the author suggests a rethinking of spiritual healing as an integrated rather than extraordinary way of dealing with the challenges of everyday life, and of crisis as a context for the deferred closure of insecurity.
In addition, A&M continues their exploration of canonical works in a discussion of Illness and shamanistic curing in Zinacantan: an ethnomedical analysis, by Horacio Fabrega, Jr., and Daniel B. Silver.
In a special section of Cultural Anthropology entitled, “Race Theory/Anthropology Today”, John Hartigan offers an article, “Mexican Genomics and the Roots of Racial Thinking“:
This article confronts the cultural limitation of critical race work in the United States by examining genomic practices at two national institutes in Mexico—one focused on people and aimed at sampling “the Mexican genome,” the other focused on plant biodiversity and “razas de maíz” or races of corn. The human genome project emphasizes admixture in ways that seem to confound claims about the racialization of genomics research in the United States; the biodiversity project highlights the broad extent to which “race” is also about nonhumans. Taken together, these projects suggest a greater breadth and depth to racial thinking than is typically considered in U.S.-based accounts. Grasping this wider scope to race involves, first, foregoing a strict delineation of the social and the biological and, secondly, recognizing that uses of race on nonhumans indicate that racial thinking entails profound questions concerning the nature of species. “Razas de maíz” suggest that racial thinking is both older and more deeply engrained than the modern forms with which we have been most concerned; it may well derive from processes of domestication that are quite ancient and encompass a range of contradictory, complex ideas and practices concerning the relations of humans and nonhumans.
Social History of Medicine also has a special section this time, entitled, “Mobilising Medicine: Trade & Healing in the Early Modern Atlantic World,” and including several articles that may be of interest to Somatosphere readers. In addition, the following articles can be found in the journal’s ‘regular’ pages:
Leprosy and Slavery in Suriname: Godfried Schilling and the Framing of a Racial Pathology in the Eighteenth Century
Stephen Snelders
The skin disease boasie became a major health problem in the Dutch colony of Suriname from the 1740s–1750s onwards. European doctors attempted to come to a closer understanding of the disease, and established that it was identical to the leprosy of Antiquity and the Middle Ages. The Prussian surgeon and medical doctor Godfried Wilhelm Schilling (c. 1735–after 1795) played a key role in this process. Schilling tried to give solutions to the medical and public health problems related to the disease. In particular, he had to mediate between the public interests of the colonial authorities, wishing to curb the spread of the disease, and the private interests of the local planter and slave-owning elite, concerned about financial losses. Schilling framed boasie as a disease of African origin, with strong racial and sexual overtones. This racial framing contributed to policies of isolation of boasie sufferers. The disease was tainted with moral and cultural value judgments, as a health danger brought over by African slaves, threatening the new Caribbean slave societies of the eighteenth centuries and ultimately the Dutch colonial empire itself. This framing of leprosy in racial terms was not a product of nineteenth-century imperialism, Social Darwinism and bacteriology, but of the plantation economy and of a pre-modern medicine.
Roy Porter Student Prize Essay The Bounds of Domestic Healing: Medical Recipes, Storytelling and Surgery in Early Modern England
Seth Stein LeJacq
This paper investigates ways in which early modern English recipe collections constructed domestic medicine as broader and more powerful than is often appreciated. It shows that their compilers frequently selected recipes that promised to allow them to address a wide range of surgical ailments, to heal serious surgical conditions medicinally, and to avoid invasive interventions. Claims of remedies’ virtues and stories of their successes imagined domestic medicine not only as a ‘first port of call’, but also as a potent counterpart to the work of practitioners; a last resort when practitioners had failed; and as an alternative to the knife. Using the writings of the surgeon John Woodall, it argues that surgeons were sensitive to the attitudes and preferences that motivated this collection. In seeking to discipline surgery, Woodall invoked the stereotypical gentleness of women’s and domestic medicine in an effort to inculcate greater discernment in the use of violence.
The Regional Dynamics of Hospital Systems: A Case Study of Haukeland University Hospital, Norway
Svein Ivar Angell
The article examines the political processes associated with the funding and organisation of Norway’s Haukeland University Hospital in Bergen, Norway, from the 1950s to the 1970s. Attempts to transform and develop Haukeland Hospital were complex and ‘the Haukeland issue’, as it became known in Norway, involved multiple agencies and a wide range of often conflicting interests. Participants included the City of Bergen, the University of Bergen, Hordaland County Council, central state health authorities, politicians, medical professionals and the media. This paper analyses these events in terms of the broader political struggles related to the development of hospital systems in the post-war period, focusing particularly on the ‘centre–periphery’ relationships within Norway’s health care system.
Arctic Neurasthenia—The Case of Greenlandic Kayak Fear 1864–1940
Ivan Lind Christensen and Søren Rud
This article investigates the somewhat under-studied Greenlandic kayak fear; a diagnosis that appeared in 1864 and declined as a subject of urgency after about 1940. It follows the aetiology of the diagnosis as it changes from a lifestyle-related phenomenon to a localised colonial version of neurasthenia: arctic neurasthenia. Previous studies have focused on the diagnosis tropical neurasthenia, a condition known to have affected white colonisers exposed to tropical environments. However, there have been almost no reports of cases in which the diagnosis of neurasthenia was used to describe conditions among a colonised population. The analysis in this article testifies to the remarkable flexibility of the diagnosis and adds yet another layer to the history of neurasthenia. Following recent trends in the history of medicine we highlight the socio-historical, medical and cultural framing of the process from the unstudied condition to diagnosis.
Red Cottages and Swedish Virtues: Swedish Institutional Drug Treatment as an Ideological Project 1968–1981
Johan Edman
This article investigates Swedish drug treatment as an ideological project, from the establishment of the first treatment centres in the late 1960s up until the change in legislation and management in the early 1980s. The empirical basis for the analysis consists mainly of archival materials produced in the application process of aspiring treatment homes. The article compares treatment programmes that were supported by the state in 1968–81 to those which were opposed during the same years. The choice of caregivers tells us a great deal about the underlying ideological positions. The analysis suggests that the endorsed treatment programmes embraced the virtues of a rural romantic setting, democracy and socialism, whereas the opposed treatment programmes were branded as un-Swedish in several ways: shallow, individualistic and profit-seeking.
Making Knowledge for International Policy: WHO Europe and Mental Health Policy, 1970–2008
Steve Sturdy, Richard Freeman and Jennifer Smith-Merry
It is widely agreed that the effectiveness of the World Health Organization (WHO) as a policy body derives chiefly from its reputation as a source of authoritative knowledge. However, little has been done to show just how WHO mobilises knowledge for policy purposes. Rather, commentators tend simply to assume that the WHO is a technocratic organisation, which uses technical expertise to define normative, universally-applicable standards on which to base policy. This paper tells a rather more complex story. Looking in detail at the efforts of the WHO European Regional Office, since the 1970s, to reform mental health policy across the region, it shows that the organisation’s main policy successes in this field were achieved, not by circulating standardised data or policies, but by creating opportunities to share holistic, experience-based and context-sensitive knowledge of instances of best practice. We go on to analyse our findings in light of ideas about ‘epistemic communities’, and show how an appreciation of the nature and constitution of epistemic communities can illuminate the different ways that knowledge may inform international policy.
Sensitive Matters: The World Health Organisation and Antibiotic Resistance Testing, 1945–1975
Christoph Gradmann
The paper assesses the development of antibiotic resistance diagnostics after 1945. In the 1950s, demand for such testing led to the adaptation of procedures from experimental pharmacology and bacterial genetics to the needs of clinical microbiology. Further developments were influenced by stakeholders in clinical medicine, public health and industry. These changes are viewed through the lens of a 1960s World Health Organisation (WHO)-initiated research project, and the ways in which it developed over time. Driven forward by the Swedish medical microbiologist Hans Ericsson, this project attempted to frame resistance diagnostics in relation to the needs of public health, a standardisation of diagnostic tools and with regard to therapeutic rationalism. These objectives were swiftly combined with that of raising the professional status of clinical microbiology. Such aspirations, however, ran counter to industrial interest. Early in the 1970s standardisation instead remained confined to a single element in the diagnostic process: a small paper disc containing antibiotics. Ironically, Ericsson, who had pushed for a broader standardisation of diagnostic processes, ultimately found himself embarking on a career as a commercial producer of those discs.
In a recent issue of Social Science & Medicine, Daniel C. Hallin, Marisa Brandt, and Charles L. Briggs explore media coverage of health in their article, “Biomedicalization and the public sphere: Newspaper coverage of health and medicine, 1960s–2000s“:
This article examines historical trends in the reporting of health and medicine in The New York Times and Chicago Tribune from the 1960s to the 2000s. It focuses on the extent to which health reporting can be said to have become increasingly politicized, or to have shifted from treating the production of medical knowledge as something belonging to a restricted, specialized sphere, to treating it as a part of the general arena of public debate. We coded a sample of 400 stories from the two newspapers for four different Implied Audiences which health stories can address: Scientific/Professional, Patient/Consumer, Investor and Citizen/Policymaker. Stories were also coded for the origin of the story, the sources cited, the presence of controversy, and the positive or negative representation of biomedical institutions and actors. The data show that through all five decades, news reporting on health and medicine addressed readers as Citizen/Policymakers most often, though Patient/Consumer and Investor-oriented stories increased over time. Biomedical researchers eclipsed individual physicians and public health officials as sources of news, and the sources diversified to include more business sources, civil society organizations and patients and other lay people. The reporting of controversy increased, and portrayals of biomedicine shifted from lopsidedly positive to more mixed. We use these data in pinpointing how media play a constitutive role in the process of “biomedicalization,” through which biomedicine has both extended its reach into and become entangled with other spheres of society and of knowledge production.
The journal Social Studies of Science has a special issue this month, entitled “Indigenous Body Parts and Postcolonial Technoscience”. Edited by Emma Kowal, Amy Hinterberger and Joanna Radin, the issue brings together several articles that together explore the implications of biospecimens in a postcolonial age.
Indigenous body parts, mutating temporalities, and the half-lives of postcolonial technoscience
Emma Kowal, Joanna Radin, and Jenny Reardon
Biological samples collected from indigenous communities from the mid-20th century for scientific study and preserved in freezers of the Global North have been at the center of a number of controversies. This essay explores why the problem of indigenous biospecimens has returned to critical attention frequently over the past two decades, and why and how Science and Technology Studies should attend to this problem. We propose that mutation – the variously advantageous, deleterious, or neutral mechanism of biological change – can provide a conceptual and analogical resource for reckoning with unexpected problems created by the persistence of frozen indigenous biospecimens. Mutations transcend dichotomies of premodern/modern, pro-science/anti-science, and north/south, inviting us to focus on entanglements and interdependencies. Freezing biospecimens induces mutations in indigenous populations, in the scientists who collected and stored such specimens, and in the specimens themselves. The jumbling of timescales introduced by practices of freezing generates new ethical problems: problems that become ever more acute as the supposed immortality of frozen samples meets the mortality of the scientists who maintain them. More broadly, we propose that an ‘abductive’ approach to Science and Technology Studies theories of co-production can direct attention to the work of temporality in the ongoing alignment of social and technical orders. Attending to the unfolding and mutating vital legacies of indigenous body parts, collected in one time and place and reused in others, reveals the enduring colonial dimensions of scientific practice in our global age and demonstrates new openings for ethical action. Finally, we outline the articles in this special issue and their respective ‘mutations’ to postcolonial Science and Technology Studies, a field that, like genome science, is racked with ethical and temporal dilemmas of reckoning for the past in the present.
Latent life: Concepts and practices of human tissue preservation in the International Biological Program
Joanna Radin
Before the rise of DNA sequence analysis or the controversies over the Human Genome Diversity Project, there was the International Biological Program, which ran from 1964 to 1974. The Human Adaptability arm of the International Biological Program featured a complex encounter between human geneticists and biological anthropologists. These scientists were especially interested in what could be learned from the bodies of people they referred to as both primitive and in danger of going extinct. In this article, I address how new access to technologies of cold storage, which would allow blood to be transported from the field to the lab and be stored for subsequent reanalysis, gave shape to this episode in Cold War human biology and has ramified into our genomic age. This case study highlights the importance of cryopreservation to projects of genetic salvage as well as to the life sciences, more generally. I argue that ‘latency’, a technical term initially used by cryobiologists to describe life in a state of suspended animation, can be extended as a concept for science studies scholars interested in technoscientific efforts to manage the future.
Genomic articulations of indigeneity
Kim Tallbear
Indigenous peoples’ and genome scientists’ respective definitions and practices of making ‘indigeneity’ illustrate their competing notions of identity, origins, and futures. This article explores these genomic and indigenous ‘articulations’ of indigeneity, both their similarities and profound differences. Scientists who study ancient global human migrations and human genome diversity draw on an understanding of ‘indigeneity’ that appears to overlap with, but fundamentally contradicts, the use of this concept by the global indigenous movement. Genomic articulations privilege genetic ancestry as defining indigenous ‘populations’. In contrast, indigenous articulations of indigeneity emphasize political status and biological and cultural kinship constituted in dynamic, long-standing relations with each other and with living landscapes. To demonstrate how differences in definitions matter, I draw examples from several scientific and indigenous projects that entangle DNA knowledge with judgments about indigenous identities, and I note resulting policy implications. I first examine two key narratives of indigeneity and race that underlie the genomic articulation of indigeneity: ‘indigenous peoples are vanishing’ and ‘we are all related/all African’. I then explore two cases where genomic and indigenous articulations clash and overlap – the ‘Kennewick Man’ case and the use of DNA testing for tribal enrollment. Yet genomic articulations, with their greater truth-governing power, may inadvertently reconfigure indigeneity in ways that can undermine tribal and First Nations’ self-determination and the global indigenous anticolonial movement. Indeed, some indigenous peoples have recently adopted genomic articulations of identity, perhaps to their own detriment.
The importance of being Uros: Indigenous identity politics in the genomic age
Michael Kent
The objective of this article is to explore the interrelations between human population genomic research, the political strategies of indigenous movements and processes of identity formation. It will do so by analysing the collaboration between the Uros, an indigenous group living on artificial floating islands on Lake Titicaca (Peru), and researchers of the Genographic Project. Claiming descent from the ancient Urus, the islands’ inhabitants used their differentiated ethnic identity as a central resource in a territorial conflict with the Peruvian state. Their engagement with genetics was aimed at obtaining scientific support for their highly contested claims. In fact, the results of genomic research became a central element in the debate waged around the identity of the Uros. This article aims to contribute new insights into the incorporation of genetic research within the political debates waged over the identities of indigenous populations, as well as to the interaction of genetic knowledge with pre-existing discourses for defining ethnic identities. It also analyses the ways in which genetic research is turned into a political resource with the ability to generate significant social effects in the daily lives of studied populations.
Objectivity and its discontents
Warwick Anderson
In my 2008 book, The Collectors of Lost Souls, I told the story of the medical investigation of kuru, a fatal brain disease afflicting the Fore people of New Guinea during the middle of the 20th century. The story involved sorcery accusations, cannibalism, first contact, colonial incursions, scientific rivalry, alleged sexual molestation, and two Nobel Prizes in Physiology or Medicine. There can be little doubt that kuru, because of its peculiarities, has proven exceptionally ‘good to think with’—in infectious diseases research, medical anthropology and the history of science. Here, I attempt a cultural history of valuation in kuru research, hoping thus to make a tentative contribution to a theory of value in modern science. It is important to distinguish this project from functionalist and normative analyses predicated on conceptions of social structure and solidarity. Instead, I want to look at the inter-subjective mobilization and modulation of desire in scientific work, thus focusing on multiple agency, more than structure, in the making or perception of value. Like John Dewey, and his teacher Georg Simmel, I am most interested in how experiences of self-formation generate or reveal value commitments; that is, I am interested in how interaction, or opening ourselves to others, can form and make visible our values and valuables. In this spirit, I want to attend to the commitments to subjects and objects that emerge through cultural contact and exchange in scientific research.
Orphan DNA: Indigenous samples, ethical biovalue and postcolonial science
Emma Kowal
Thousands of blood samples taken from Australia’s indigenous people lie in institutional freezers of the global North, the legacy of a half-century of scientific research. Since those collections were assembled, standards of ethical research practice have changed dramatically, leaving some samples in a state of dormancy. While some European and American collections are still actively used for genetic research, this practice is viewed as unethical by most Australian genetic researchers, who have closer relationships with indigenous Australians and postcolonial politics. For collections to be used ethically, they require a ‘guardian’ who has an ongoing and documented relationship with the donors, so that consent to further studies on samples can be negotiated. This affective and bureaucratic network generates ‘ethical biovalue’ such that a research project can satisfy Australian ethical review. I propose in this article that without ethical biovalue, collections become ‘orphan’ DNA, divorced from a guardian and often difficult to trace to their sources. Such samples are both orphaned and functionally sterile, unable to produce data, scientific articles, knowledge or prestige. This article draws on an ethnographic study of genetic researchers who are working in indigenous communities across Australia. I present tales of researchers’ efforts to generate ethical biovalue and their fears for succession; fears that extend to threats to destroy samples rather than see them orphaned, or worse, fall into the wrong hands. Within these material and affective networks, indigenous DNA morphs from biological sample to sacred object to political time bomb.
Transgressive ethics: Professional work ethics as a perspective on ‘aggressive organ harvesting’
Klaus L Hoeyer and Anja MB Jensen
Occasionally brain-dead organ donors go into cardiac arrest before reaching the operating theater. In such cases, the needed resuscitation of the potential donor stimulates a range of concerns among the responsible staff. If the intensive care unit staff are going to carry out the organ retrieval, they must rush in with demanding treatment measures such as defibrillation shock and cardiac massage that may break breast bones and make the donor vomit. Such treatment measures conflict with widespread ideals of tranquility in donor care and yet they are currently under consideration in Danish intensive care units. Why is this type of ‘aggressive organ harvesting’, as it is sometimes called, considered a likely development, even to the extent that the interviewed health professionals request a policy prescribing procurement measures they morally deplore? We suggest that to understand this change of treatment norms, we must move close to everyday work practices and appreciate the importance of material–technical treatment options as well as the interplay of professional ethics and identity. The cardiac treatment of brain-dead donors may thereby illuminate how treatment norms develop on the ground and thus can theoretically develop our understanding of the mechanisms associated with increasingly ‘aggressive organ harvesting’.
In addition, there is a review essay by Amy Hinterberg, “Curating Postcolonial Critique“.
Social Theory & Health is celebrating its ten-year anniversary this month with a special issue that both takes stock of the current state of theory in medical sociology and presents several original articles.
Sociological theory in medical sociology in the early twenty-first century
William C. Cockerham
This article examines current trends in theory in medical sociology and finds that the use of theory is flourishing. The central thesis is that the field has reached a mature state and is in the early stage of a paradigm shift away from a past focus on methodological individualism (in which the individual is the primary unit of analysis) toward a growing utilization of theories with a structural orientation This outcome is materially aided by research methods (for example, hierarchal linear modeling, biomarkers) providing measures of structural effects on the health of the individual that were often absent or underdeveloped in the past. Both quantitative and qualitative methods can be utilized in such research and qualitative studies based on symbolic interaction or social constructionism are not disqualified because of their methodologies and focus. Structure needs to be accounted for in any social endeavor and contemporary medical sociology appears to be doing precisely that as part of the next stage of its evolution.
The digitally engaged patient: Self-monitoring and self-care in the digital health era
Deborah Lupton
The phenomenon of digital health has emerged as a key dimension of contemporary healthcare policy and delivery in many countries. This review article focuses on one aspect of digital health discourses: the concept of patient engagement that encourages patients to take up the new digital media technologies to engage in self-monitoring and self-care, or what I term ‘the digitally engaged patient’. A critical approach is adopted to examine the sociocultural dimensions of eliciting patients to become ‘digitally engaged’ in their own medical care and preventive health efforts. It is argued that the techno-utopian discourses articulated in the mainstream healthcare policy literature concerning the possibilities and potentialities afforded by digital health technologies do not acknowledge the complexities and ambivalences that are part of using self-monitoring and self-care technologies for monitoring health and illness states, both for patients and for healthcare providers. These include the surveillance and disciplinary dimensions of using these technologies, the emotions and resistances they provoke, their contribution to the burden of self-care and the invisible work on the part of healthcare workers that they require to operate.
This article starts from an observation that while ageing and old age seem to be all around us, this reality has not yet penetrated into most accounts, theoretical or otherwise of the changing nature of health and illness in the contemporary world. Social scientists (and particularly those of a theoretical bent) have only been partially aware of the issues surrounding ageing and the transformation of old age into a very different later life than that experienced by previous generations. This article seeks to question this omission by pointing out why a refreshed focus on ageing and later life would extend our understanding of the position of health in contemporary society and allow us to better conceptualise the wider processes that are redefining the social world.
Death and anorexia nervosa: A question from the sidelines
Ruth Graham
In this article, I reflect on the social science contribution to understandings of anorexia nervosa. The context is set with a brief overview of my own interest in the topic, of how the phenomenon has been conceptualised as a topic of legitimate social science interest and of how the social sciences have broadened conceptualisations of anorexia nervosa. I then consider the absent presence of death in social science accounts of anorexia nervosa. In the social science literature, claims to high mortality rates feature routinely in how social scientists frame the phenomenon for study, but these data are rarely a focus of investigation in their own right. The apparent acceptance of the mortality data in social science accounts is problematic, because mortality data can be potentially misleading. With the attempts of some social scientists to give voice to those affected by anorexia nervosa, it seems particularly important to ensure that our framing of the phenomenon is as accurate as possible, and that the statistics used to describe the phenomenon are used with critical evaluation rather than straightforward acceptance. As a collective enterprise, the social sciences have provided a significant and dynamic challenge to the ways in which anorexia nervosa has been conceptualised in medical discourses, emphasising the impact of social structures on individual experiences. However, there remain areas where further interrogation may be beneficial in attempting to evaluate dominant conceptualisations of anorexia nervosa as always already serious and extreme.
Archer and ‘vulnerable fractured reflexivity’: A neglected social determinant of health?
Graham Scambler
This article is the last in a trio of attempts to learn from and apply Margaret Archer’s (critical) realist work on ‘internal conversations’ to the sociology of health inequalities. In the earlier contributions ideal types of two key ‘players’ were discerned: the ‘focused autonomous reflexives’ were held to be crucially implicated in the generation and maintenance of health inequalities, and the ‘dedicated meta-reflexives’ were identified as most likely resisters. In this anniversary issue it is suggested that a further ideal type – that of the ‘vulnerable fractured reflexive’ – is indicated. But the vulnerable fractured reflexives are ‘non-players’: they have a mind-set that leaves them susceptible to health threats and to reduced life-expectancy. The concept of ‘disconnected fatalism’ is introduced as a possible successor to those of alienation and anomie in post-1970s financial capitalism. A new viable research programme is hinted at.
This issue of Sociology of Health & Illness presents several original articles:
Ageing with telecare: Care or coercion in austerity?
Maggie Mort, Celia Roberts, Blanca Callén
In recent years images of independence, active ageing and staying at home have come to characterise a successful old age in western societies. ‘Telecare’ technologies are heavily promoted to assist ageing-in-place and a nexus of demographic ageing, shrinking healthcare and social care budgets and technological ambition has come to promote the ‘telehome’ as the solution to the problem of the ‘age dependency ratio’. Through the adoption of a range of monitoring and telecare devices, it seems that the normative vision of independence will also be achieved. But with falling incomes and pressure for economies of scale, what kind of independence is experienced in the telehome? In this article we engage with the concepts of ‘technogenarians’ and ‘shared work’ to illuminate our analysis of telecare in use. Drawing on European-funded research we argue that home-monitoring based telecare has the potential to coerce older people unless we are able to recognise and respect a range of responses including non-use and ‘misuse’ in daily practice. We propose that re-imagining the aims of telecare and redesigning systems to allow for creative engagement with technologies and the co-production of care relations would help to avoid the application of coercive forms of care technology in times of austerity.
Brain talk: Power and negotiation in children’s discourse about self, brain and behaviour
Ilina Singh
This article examines children’s discourse about self, brain and behaviour, focusing on the dynamics of power, knowledge and responsibility articulated by children. The empirical data discussed in this article are drawn from the study of Voices on Identity, Childhood, Ethics and Stimulants, which included interviews with 151 US and UK children, a subset of whom had a diagnosis of attention deficit/hyperactivity disorder. Despite their contact with psychiatric explanations and psychotropic drugs for their behaviour, children’s discursive engagements with the brain show significant evidence of agency and negotiated responsibility. These engagements suggest the limitations of current concepts that describe a collapse of the self into the brain in an age of neurocentrism. Empirical investigation is needed in order to develop agent-centred conceptual and theoretical frameworks that describe and evaluate the harms and benefits of treating children with psychotropic drugs and other brain-based technologies.
Splitting bodies/selves: Women’s concepts of embodiment at the moment of birth
Deborah Lupton and Virginia Schmied
Little sociological research has focused specifically on the moment of birth. In this article we draw upon interview data with women who had very recently given birth for the first time to explore the ways in which they described both their own embodiment and that of their infants at this time. We use the term ‘the body-being-born’ to describe the liminality and fragmentation of the foetal/infant body as women experience it when giving birth. The study found that mode of birth was integral to the process of coming to terms with this body during and following birth. The women who gave birth vaginally without anaesthesia experienced an intense physicality as they felt their bodies painfully opening as the ‘body-being-born’ forced its way out. In contrast the women who had had a Caesarean section tended to experience both their own bodies and those of their infants as absent and alienated. Most of the women took some time to come to terms with the infant once it was born, conceptualising it as strange and unknown, but those who delivered by Caesarean section had to work even harder in coming to terms with the experience.
Functional foods and the biomedicalisation of everyday life: A case of germinated brown rice
Hyomin Kim
Germinated brown rice (GBR) is a functional food, whose benefits for chronic diseases have been demonstrated by scientific research on a single constituent of GBR, gamma aminobutyric acid. This article examines the processes through which the emphasis on biomedical rationality made during the production and consumption of functional foods is embedded in the complicated social contexts of the post-1990s. In the case of GBR, the Korean government, food scientists, mass media and consumers have added cultural accounts to the biomedical understanding of foods. In particular, consumers have transformed their households and online communities into a place for surveillance medicine. Functional foods are embedded in multiple actors’ perspectives on what healthy foods mean and how and where the risks of chronic diseases should be managed.
Security and subjective wellbeing: The experiences of unaccompanied young people seeking asylum in the UK
Elaine Chase
This article considers the relevance of the notion of ontological security – a sense of order, stability, routine and predictability to life – to contemporary conceptualisations of wellbeing. Drawing on in-depth interviews with unaccompanied young people seeking asylum in the UK, it demonstrates how a positive sense of self and being able to visualise a place and role in the world into the future were integral to their notion of wellbeing, offering an important counter to the pervasive sense of living in limbo. The article argues that this fundamental need for a projected self is largely neglected in contemporary discussions on wellbeing. To date the idea of security as a determinant of wellbeing has been primarily constructed around the notion of protection from harm and the provision of the requirements for physical, emotional, economic and social wellbeing in the here and now. Findings from this research suggest that those providing services and support to young people who have experienced trauma need to consider how they might best nurture in them a sense of place, belonging and security into the future. Equally, they have implications for how we conceptualise and operationalise wellbeing more generally.
Initiating decision-making in neurology consultations: ‘Recommending’ versus ‘option-listing’ and the implications for medical authority
Merran Toerien, Rebecca Shaw and Markus Reuber
This article compares two practices for initiating treatment decision-making, evident in audio-recorded consultations between a neurologist and 13 patients in two hospital clinics in the UK. We call these ‘recommending’ and ‘option-listing’. The former entails making a proposal to do something; the latter entails the construction of a list of options. Using conversation analysis (CA), we illustrate each, showing that the distinction between these two practices matters to participants. Our analysis centres on two distinctions between the practices: epistemic differences and differences in the slots each creates for the patient’s response. Considering the implications of our findings for understanding medical authority, we argue that option-listing – relative to recommending – is a practice whereby clinicians work to relinquish a little of their authority. This article contributes, then, to a growing body of CA work that offers a more nuanced, tempered account of medical authority than is typically portrayed in the sociological literature. We argue that future CA studies should map out the range of ways – in addition to recommending – in which treatment decision-making is initiated by clinicians. This will allow for further evidence-based contributions to debates on the related concepts of patient participation, choice, shared decision-making and medical authority.
Biographical value: Towards a conceptualisation of the commodification of illness narratives in contemporary healthcare
Fadhila Mazanderani, Louise Locock and John Powell
Illness narratives play a central role in social studies of health and illness, serving as both a key theoretical focus and a popular research method. Despite this, relatively little work has gone into conceptualising how and why illness narratives – be they in books, websites, television or other media – are commodified in contemporary healthcare and its social environment; namely, how distinctive forms of value are generated in the production, circulation, use and exchange of illness narratives. In this article we propose the notion of biographical value as a first step towards conceptualising the values attributed to illness narratives in this context. Based on a secondary analysis of 37 interviews with people affected by 15 different health conditions in the UK (all of whom have shared their illness experiences across various media) and drawing on understandings of value in research on the bioeconomy and the concept of biovalue in particular, we sketch out how epistemic, ethical and economic forms of value converge and co-constitute each other in the notion of biographical value and in broader economies of illness experiences.
The general consensus in the research to date is that family meals are linked to healthier eating habits in children, compared to not eating with the family. Yet, few studies explore what it is about commensality which leads to better food choices among children. Using a representative Scottish sample of five-year-old children, this research explores the extent to which family meal occurrence, meal patterns regarding where, when and with whom children eat and perceived meal enjoyment predict the quality of children’s diets after controlling for indicators of maternal capital that influence both meal rituals and taste preferences. Eating the same food as parents is the aspect of family meals most strongly linked to better diets in children, highlighting the detrimental effect in the rise of ‘children’s food’. Although theoretical and empirical work pointed to the important health advantage in children eating together with parents, the results suggested that eating together was a far less important aspect of family meals. In evaluating the importance of the family meal, this article redirects attention away from issues of form and function towards issues of food choice. Policy implications and the importance for public health to recognise the way eating habits are defined by and reproduce social and cultural capital are discussed.
Breast milk and labour support: Lactation consultants’ and doulas’ strategies for navigating the medical context of maternity care
Jennifer M.C. Torres
This article provides a comparison of two occupational groups working in maternity care: International Board Certified Lactation Consultants, who assist women with breastfeeding, and DONA International certified birth doulas, who provide physical, emotional and informational support to birthing women. Using interviews with 18 lactation consultants and 16 doulas working in the USA, I compare these two groups’ strategies for gaining entrance to the maternity care team and their abilities to create change in maternity care practices. Due to the organisation of occupational boundaries in maternity care and differences between the influence of the medicalisation of breastfeeding versus that of childbirth on those boundaries, lactation consultants are able to utilise a front-door entrance to the medical maternity system, entering as lactation specialists and advocates, while doulas use a back-door entrance, emphasising their care work and downplaying their advocacy. These different strategies result in different methods being available to each for effecting change. Lactation consultants create formal change, such as changing hospital policies and practices to be more pro-breastfeeding. Doulas create change informally, ‘one birth at a time’, by creating space for natural birth to occur in the hospital, as well as exposing medical providers to non-medical ways of giving birth.
Risk, governance and the experience of care
Alexandra Hillman, Win Tadd, Sian Calnan, Michael Calnan, Antony Bayer and Simon Read
Drawing on perspectives from the governmentality literature and the sociology of risk, this article explores the strategies, tools and mechanisms for managing risk in acute hospital trusts in the United Kingdom. The article uses qualitative material from an ethnographic study of four acute hospital trusts undertaken between 2008 and 2010 focusing on the provision of dignified care for older people. Extracts from ethnographic material show how the organisational mechanisms that seek to manage risk shape the ways in which staff interact with and care for patients. The article bridges the gap between the sociological analysis of policy priorities, management strategy and the organisational cultures of the NHS, and the everyday interactions of care provision. In bringing together this ethnographic material with sociological debates on the regulation of healthcare, the article highlights the specific ways in which forms of governance shape how staff care for their patients challenging the possibility of providing dignified care for older people.
Suicide rates and socioeconomic factors in Eastern European countries after the collapse of the Soviet Union: Trends between 1990 and 2008
Kairi Kõlves, Allison Milner and Peeter Värnik
After the collapse of the Soviet Union the various Eastern European (EE) countries adapted in different ways to the social, political and economic changes. The present study aims to analyse whether the factors related to social integration and regulation are able to explain the changes in the suicide rate in EE. A separate analysis of suicide rates, together with the undetermined intent mortality (UD), was performed. A cross-sectional time-series design and applied a panel data fixed-effects regression technique was used in analyses. The sample included 13 countries from the former Soviet bloc between 1990 and 2008. Dependent variables were gender-specific age-adjusted suicide rates and suicide plus UD rates. Independent variables included unemployment, GDP, divorce rate, birth rate, the Gini index, female labour force participation, alcohol consumption and general practitioners per 100,000 people. Male suicide and suicide or UD rates had similar predictors, which suggest that changes in suicide were related to socioeconomic disruptions experienced during the transition period. However, male suicide rates in EE were not associated with alcohol consumption during the study period. Even so, there might be underestimation of alcohol consumption due to illegal alcohol and differences between methodologies of calculating alcohol consumption. However, predictors of female suicide were related to economic integration and suicide or UD rates with domestic integration.
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