Here is the first installment of this month’s coverage of current journal articles.
Scientific Motherhood, Responsibility, and Hope: Umbilical Cord Blood Banking in South Korea
Yeonbo Jeong
This paper explores how concepts of hope, motherhood, responsibility, and science are mobilized and transformed in the marketing strategies of private cord blood banks in South Korea. Cord blood banking provides a useful case study of the “political economy of hope,” which emphasizes future expectations over current utility. In particular, appeals to hope are rendered natural as being applied in relation to various concepts of motherhood (e.g. “scientific motherhood” and “consumer motherhood”), thereby refiguring ideas of a mother’s responsibility to her child. In South Korea, cord blood banks rely heavily on the discourse of “scientific motherhood,” which is based on certain gender norms and ideas about science, modernity, and “advanced society.” By exploring the discourse of scientific motherhood, this study reexamines the “political economy of hope” through the lenses of gender and transnationalism.
Smoking at the Workplace: Effects of Genetic and Environmental Causal Accounts on Attitudes Toward Smoking Employees and Restrictive Policies
Ilan Dar-Nimrod, Mirod Zuckerman, and Paul Duberstein
People hold diverse beliefs regarding the etiologies of individual and group differences in behaviors which, in turn, might affect their attitudes and behaviors. It is important to establish how perceived etiologies of smoking might affect the effectiveness of policy initiatives and prevention efforts. The present study assessed whether exposure to genetic vs. environmental accounts for smoking affects attitudes toward (a) workplace-related smoking policies and (b) smokers at the workplace. Results indicate that exposure to a genetic explanation led to stronger objections to a smoking restrictive policy compared with a non-genetic explanation. Additionally, participants in the genetic condition were more accepting of a smoker in the workplace than those in the environmental condition. Evidently, beliefs about the etiology of smoking influence a range of attitudes related to smokers and smoking-related policies.
Governing Stem Cell Therapy in India: Regulatory Vacuum or Jurisdictional Ambiguity?
Shashank S. Tiwari and Sujatha Raman
Stem cell treatments are being offered in Indian clinics although preclinical evidence of their efficacy and safety is lacking. This is attributed to a governance vacuum created by the lack of legally binding research guidelines. By contrast, this paper highlights jurisdictional ambiguities arising from trying to regulate stem cell therapy under the auspices of research guidelines when treatments are offered in a private market disconnected from clinical trials. While statutory laws have been strengthened in 2014, prospects for their implementation remain weak, given embedded challenges of putting healthcare laws and professional codes into practice. Finally, attending to the capacities of consumer law and civil society activism to remedy the problem of unregulated treatments, the paper finds that the very definition of a governance vacuum needs to be reframed to clarify whose rights to health care are threatened by the proliferation of commercial treatments and individualized negligence-based remedies for grievances.
International Law, Public Health, and the Meanings of Pharmaceuticalization
Emily Cloatre and Martyn Pickersgill
Recent social science scholarship has employed the term “pharmaceuticalization” in analyses of the production, circulation and use of drugs. In this paper, we seek to open up further discussion of the scope, limits and potential of this as an analytical device through consideration of the role of law and legal processes in directing pharmaceutical flows. To do so, we synthesize a range of empirical and conceptual work concerned with the relationships between access to medicines and intellectual property law. This paper suggests that alongside documenting the expansion or reduction in demand for particular drugs, analysts of pharmaceuticalization attend to the ways in which socio-legal developments change (or not) the identities of drugs, and the means through which they circulate and come to be used by states and citizens. Such scholarship has the potential to more precisely locate the biopolitical processes that shape international agendas and targets, form markets, and produce health.
Philosophy, Ethics, and Humanities in Medicine
Discourse on Medicine: Meditative and Calculative Approaches to Ethics from an International Perspective
David Cruise Malloy, Ronald Martin, Thomas Hadjistavropoulos, Peilai Liu, Elizabeth Fahey McCarthy, Ilhyeok Park, N Shalani, Masaaki Murakami, and Suchat Paholpak
Heidegger’s two modes of thinking, calculative and meditative, were used as the thematic basis for this qualitative study of physicians from seven countries (Canada, China, India, Ireland, Japan, Korea, & Thailand). Focus groups were conducted in each country with 69 physicians who cared for the elderly. Results suggest that physicians perceived ethical issues primarily through the lens of calculative thinking (76%) with emphasis on economic concerns. Meditative responses represented 24% of the statements and were mostly generated by Canadian physicians whose patients typically were not faced with economic barriers to treatment due to Canada’s universal health care system.
Nonconsensual Withdrawal of Nutrition and Hydration in Prolonged Disorders of Consciousness: Authoritarianism and Trustworthiness in Medicine
Mohamed Rady and Joseph Verheijde
The Royal College of Physicians of London published the 2013 national clinical guidelines on prolonged disorders of consciousness (PDOC) in vegetative and minimally conscious states. The guidelines acknowledge the rapidly advancing neuroscientific research and evolving therapeutic modalities in PDOC. However, the guidelines state that end-of-life decisions should be made for patients who do not improve with neurorehabilitation within a finite period, and they recommend withdrawal of clinically assisted nutrition and hydration (CANH). This withdrawal is deemed necessary because patients in PDOC can survive for years with continuation of CANH, even when a ceiling on medical care has been imposed, i.e., withholding new treatment such as cardiopulmonary resuscitation for acute life-threatening illness. The end-of-life care pathway is centered on a staged escalation of medications, including sedatives, opioids, barbiturates, and general anesthesia, concurrent with withdrawal of CANH. Agitation and distress may last from several days to weeks because of the slow dying process from starvation and dehydration. The potential problems of this end-of-life care pathway are similar to those of the Liverpool Care Pathway. After an independent review in 2013, the Department of Health discontinued the Liverpool Care pathway in England. The guidelines assert that clinicians, supported by court decisions, have become the final authority in nonconsensual withdrawal of CANH on the basis of “best interests” rationale. We posit that these guidelines lack high-quality evidence supporting: 1) treatment futility of CANH, 2) reliability of distress assessment from starvation and dehydration, 3) efficacy of pharmacologic control of this distress, and 4) proximate causation of death. Finally, we express concerns about the utilitarian-based assessment of what constitutes a person’s best interests. We are disturbed by the level and the role of medical authoritarianism institutionalized by these national guidelines when deciding on the worthiness of life in PDOC. We conclude that these guidelines are not only harmful to patients and families, but they represent the means of nonconsensual euthanasia. The latter would constitute a gross violation of the public’s trust in the integrity of the medical profession.
Spanning Our Differences: Moral Psychology, Physician Beliefs, and the Practice of Medicine
Ryan Antiel, Katherine Humeniuk, and Jon Tilburt
Moral pluralism is the norm in contemporary society. Even the best philosophical arguments rarely persuade moral opponents who differ at a foundational level. This has been vividly illustrated in contemporary debates in bioethics surrounding contentious issues such as abortion and euthanasia. It is readily apparent that bioethics discourse lacks an empirical explanation for the broad differences about various topics in bioethics and health policy. In recent years, social and cognitive psychology has generated novel approaches for defining basic differences in moral intuitions generally. We propose that if empirical research using social intuitionist theory explains why people disagree with one another over moral issues, then the results of such research might help people debate their moral differences in a more constructive and civil manner. We illustrate the utility of social intuitionism with data from a national physician survey.
Ebola, Epidemics, and Ethics – What We Have Learned
G.K. Donovan
The current Ebola epidemic has presented challenges both medical and ethical. Although we have known epidemics of untreatable diseases in the past, this particular one may be unique in the intensity and rapidity of its spread, as well as ethical challenges that it has created, exacerbated by its geographic location. We will look at the infectious agent and the epidemic it is causing, in order to understand the ethical problems that have arisen.
The Specificity of Triad: Notions of Disease and Therapeutic Specificity in Biomedical Reasoning
Shai Mulinari
Biomedicine is typically defined as the branch of medicine that is based on the principles of biology and biochemistry. A central tenet for biomedicine is the notion of disease and therapeutic specificity, i.e. the idea of tailored treatments for discrete disorders underpinned by specific pathologies. The present paper is concerned with how notions of disease and therapeutic specificity guide biomedical reasoning. To that end, the author proposes a model – the specificity triad – that draws on late philosopher and physician Ludwik Fleck’s concept of “style of thought” to offer a frame for investigating the intricate process through which links between disorders, mechanisms, and therapeutics are established by biomedicine. Next by applying the specificity triad model to scrutinize research efforts in two discrete areas of medicine—psychiatry and regenerative medicine—this paper seeks to stimulate pertinent discussions in and about biomedicine. These include discussions on the ambiguous epistemic status of psychiatry within contemporary biomedicine, as well as the relationship between developmental biology — historically relatively disjointed from biomedical enterprise — and the burgeoning field of regenerative medicine.
Reassessing the Approach to Informed Consent: The Case of Unrelated Hematopoietic Stem Cell Transplantation in Adult Thalassemia Patients
Salvatore Pisu, Giovanni Caocci, Ernesto d’Aloja, Fabio Efficace, Adriana Vacca, Eugenia Piras, Maria Grazia Orofino, Carmen Addari, Michela Pintor, Roberto Demontis, Federica Demuru, Maria Rita Pittau, Gary S. Collins, and Giorgia La Nasa
The informed consent process is the legal embodiment of the fundamental right of the individual to make decisions affecting his or her health, and the patient’s permission is a crucial form of respect of freedom and dignity, it becomes extremely important to enhance the patient’s understanding and recall of the information given by the physician. This statement acquires additional weight when the medical treatment proposed can potentially be detrimental or even fatal. This is the case of thalassemia patients pertaining to class 3 of the Pesaro classification where Allogenic hematopoietic stem cell transplantation (HSCT) remains the only potentially curative treatment. Unfortunately, this kind of intervention is burdened by an elevated transplantation-related mortality risk (TRM: all deaths considered related to transplantation), equal to 30% according to published reports. In thalassemia, the role of the patient in the informed consent process leading up to HSCT has not been fully investigated. This study investigated the hypothesis that information provided by physicians in the medical scenario of HSCT is not fully understood by patients and that misunderstanding and communication biases may affect the clinical decision-making process.
Wombs, Worms and Wolves: Constructing Cancer in Early Modern England
Alanna Skuse
This essay examines medical and popular attitudes to cancer in the early modern period, c.1580–1720. Cancer, it is argued, was understood as a cruel and usually incurable disease, diagnosable by a well-defined set of symptoms understood to correspond to its etymological root, karkinos (the crab). It was primarily understood as produced by an imbalance of the humours, with women being particularly vulnerable. However, such explanations proved inadequate to make sense of the condition’s malignancy, and medical writers frequently constructed cancer as quasi-sentient, zoomorphising the disease as an eating worm or wolf. In turn, these constructions materially influenced medical practice, in which practitioners swung between anxiety over ‘aggravating’ the disease and an adversarial approach which fostered the use of radical and dangerous ‘cures’ including caustics and surgery.
Learning from the Common Folks. Academic Physicians and Medical Lay Culture in the Sixteenth Century
Michael Stolberg
Drawing on some 4000 pages of personal notes on medical practice written by the little known Bohemian physician Georg Handsch, this paper studies the oral transmission of medical knowledge from laypersons to academically trained physicians in the sixteenth century. In marked contrast to learned physicians’ attacks against ‘empirics’ and the ‘ignorance’ of the ‘vulgus’, numerous entries in Handsch’s notebooks reveal that he and his teachers and colleagues were prepared to learn from the common folks, from patients and friends, from family members and even from ‘wise women’ and unlicensed ‘empirics’. They valued their ideas, observations and skills as potentially useful for their own practice. This remarkable openness, the paper suggests, was due above all to the rise of empirical approaches in learned medicine, the need to improve outcomes in view of the competition from unlicensed healers and the physicians’ own upbringing in the medical lay culture of their time.
Erudite and Honoured Artisans? Performers of Body Care and Surgery in Early Modern German Towns
Annemarie Kinzelbach
This article investigates the interrelation between processes of professional transformation in an artisanal trade and the identity-building of barbers and surgeons in German-speaking parts of Europe. From the late fifteenth to the middle of the eighteenth century this interrelation included acting in various juridical and political functions, engaging in medical book-writing and, therefore, in knowledge transfer. Such findings are based on a combined analysis of administrative and corporative manuscript sources, and of printed books. Against this background the intention in pictorial representations and the meaning in biographic material become apparent. The individuals and the group defined themselves as medical artisans despite the fact that they assimilated academic standards in their training and lifestyle. Families played a leading part in this adaptation to political, economic, scientific and social change, they even overruled confessional boundaries. For the formation of trade identity during the seventeenth and the first half of eighteenth centuries families were indispensable.
‘Mortal in this Season’: Union Surgeons and the Narrative of Medical Modernisation in the American Civil War
Susan-Mary Grant
The impact of the American Civil War on medical modernisation is increasingly being recognised, yet the ways in which the Civil War challenged and changed doctors’ understanding of their professional role during the war remains underappreciated. By juxtaposing Union doctors’ personal and professional responses to the Civil War with the wider public reaction to Union medical care, this paper explores the tensions that arose between the public and the professional perceptions of medicine as these developed on the battlefields of the nation’s internecine conflict. It argues that the intersection between the positive and negative narratives of Union medical provision, specifically surgery, established an important discursive space within which Union doctors could negotiate their public and professional status. It finds that the negative narrative, far from a hindrance, was instrumental to the process of medical modernisation by enabling Union physicians to define, defend and develop a more modern medical role.
‘A Plentiful Crop of Cripples Made by All This Progress’: Disability, Artificial Limbs and Working-Class Mutualism in the South Wales Coalfield, 1890-1948
Ben Curtis and Steven Thompson
Historians of orthopaedics, artificial limbs and disability have devoted a great deal of attention to children and soldiers but have neglected to give sufficient space in their studies to industrial workers, the other patient group that has been identified as crucial to the development of these areas. Furthermore, this attention has led to an imbalanced focus on charitable and philanthropic activities as the main means of assistance and the neglect of a significant part of the voluntary sphere, the labour movement. This article, focusing on industrial south Wales, examines the efforts of working-class organisations to provide artificial limbs and a range of other surgical appliances to workers and their family members in the late nineteenth and early twentieth centuries. It finds that a distinctive, labourist conception of disability existed which envisaged disabled workers as an important priority and one to which significant time, effort and resources were devoted.
Drugs, Race and Tuberculosis Control in Baltimore, 1950-1978
Julia Ross Cummiskey
Two narratives dominate histories of post-WWII tuberculosis control. One emphasizes the successes of antibiotic therapy in the 1950s and 1960s, the subsequent decline in resources for tuberculosis management, and the resurgence of tuberculosis in the 1990s. The second centres on the development of the global DOTS strategy and privileges those aspects of earlier control efforts that appear to be precursors to DOTS. Both narratives underemphasize diverse efforts by public health authorities across the world to manage the possibilities and challenges of antibiotic therapy. These efforts were shaped by local social and political contexts. The history of Baltimore’s tuberculosis control programme between 1950 and 1978 illustrates the complex array of strategies public health officials employed as well as the way they adapted strategies from other jurisdictions. It highlights continuities between the pre-antibiotic and the post-antibiotic history of tuberculosis, and ways that persistent racial tropes influenced tuberculosis control programmes.
Mental Hygiene and Child Guidance in Post-war Greece: The Case of the Centre for Mental Health and Research, 1956-1970
Despo Kritsotaki
This paper focuses on the Centre for Mental Health and Research, an organisation launched in Athens in 1956 and that is still operational today. Its story up to 1970 is analysed as a case study of the development of mental hygiene and child guidance in Greece, where international movements became relevant within the context of the social transformations of the post-war period. Seizing the opportunities created by the ‘modernisation’ of Greece and the anxiety around it, the Centre managed to secure funding and develop a number of services and activities. It is concluded that, although it was not successful in its broader social projects, it had an impact at the micro-level of the family and played a part in opening up new possibilities for the ‘psy’ disciplines in post-war Greece beyond the pathological and the hospital, so addressing the ‘normal’ individual and society as a whole.
Obesity and the Emergence of Mutual Aid Groups for Weight Loss in the Post-War United States
Jessica Parr
By the 1950s, American medical authorities declared obesity to be the nation’s leading health care problem prompting a society, already familiar with the rigours of weight control, to extend the bounds of their diet consciousness. This manifested in a ‘self-help movement for fatties’ which witnessed the proliferation of weight loss groups with names such as, Take Off Pounds Sensibly and Fatties Anonymous, and introduced an eclectic blend of mutual aid inspired by Alcoholics Anonymous and psychoanalytic psychiatry. This paper explores the emergence of these mutual aid groups in response to the growing concern about obesity and argues that the rise of weight loss groups was the result of many separate but interacting variables in the context of the post-war United States. The history of the self-help weight loss movement can offer new perspectives on the politics of current obesity management policies, as well as insight into mid-twentieth-century popular culture.
What Binds Biosociality? The Collective Effervescence of the Parent-Led Conference
Rebecca Dimond, Andrew Bartlett, and Jamie Levine
Questions of community are central to many research settings in the social sciences. Rabinow argued that, in the wake of the Human Genome Project, an increasingly important form of collectivity would be biosociality. Biosociality recognises a central role for biomedical knowledge in constructing genetic identities and producing and reproducing social relationships. Accordingly, it is often imagined as a new form of social solidarity. We draw on observations of parent-led conferences to explore the way in which biosociality is expressed at events organised around a particular genetic syndrome – 22q11 deletion syndrome. The parent-led conferences took place within the United Kingdom between 2007 and 2010 and were observed as part of a multi-sited ethnographic study. By bringing together a geographically dispersed group of people together within the same physical location, conferences offer an ideal platform to empirically examine sociality. Durkheim used the term collective effervescence to describe the collective expression of heightened emotion. We suggest that in the case of the 22q11 deletion syndrome activities discussed in this paper, collective effervescence is a mechanism through which individuals become a collective. We argue that parent-led conferences gather individuals in one location on the basis of common biological factors, but it is the shared emotional experience of being together that consolidates and renews the connection between members.
Latent and Manifest Empiricism in Q’eqchi’ Maya Healing: A Case Study of HIV/AIDS
James Waldram and Andrew Hatala
This paper presents a case study of the traditional treatment of a Q’eqchi’ Maya man in southern Belize in 2011 who is suffering from AIDS-related sickness. The purpose is to detail the empirical nature of Q’eqchi’ Maya medicine, distinguishing between manifest and latent empiricism, as evidenced in the healers evolving attempts to treat the patient in the absence of knowledge of his biomedical diagnosis. The paper argues for a more complete understanding of the empirical nature of much Indigenous healing, which parallels aspects of scientific medicine, and for better collaboration among traditional healers and biomedical practitioners in strongly Indigenous areas.
Interdisciplinary Promises Versus Practices in Medicine: The Decoupled Experiences of Social Sciences and Humanities Scholars
Mathieu Albert, Elise Paradis, and Ayelet Kuper
This paper explores social scientists’ and humanities (SSH) scholars’ integration within the academic medical research environment. Three questions guided our investigation: Do SSH scholars adapt to the medical research environment? How do they navigate their career within a culture that may be inconsistent with their own? What strategies do they use to gain legitimacy? The study builds on three concepts: decoupling, doxa, and epistemic habitus. Twenty-nine semi-structured interviews were conducted with SSH scholars working in 11 faculties of medicine across Canada. Participants were selected through purposeful and snowball sampling. The data were analyzed by thematic content analysis. For most of our participants, moving into medicine has been a challenging experience, as their research practices and views of academic excellence collided with those of medicine. In order to achieve some level of legitimacy more than half of our participants altered their research practices. This resulted in a dissonance between their internalized appreciation of academic excellence and their new, altered, research practices. Only six participants experienced no form of challenge or dissonance after moving into medicine, while three decided to break with their social science and humanities past and make the medical research community their new home. We conclude that the work environment for SSH scholars in faculties of medicine does not deliver on the promise of inclusiveness made by calls for interdisciplinarity in Canadian health research.
Inequalities in Social Capital and Health Between People with and without Disabilities
Johanna Mithen, Zoe Aitken, Anne Ziersch, and Anne Kavanagh
The poor mental and physical health of people with disabilities has been well documented and there is evidence to suggest that inequalities in health between people with and without disabilities may be at least partly explained by the socioeconomic disadvantage (e.g. low education, unemployment) experienced by people with disabilities. Although there are fewer studies documenting inequalities in social capital, the evidence suggests that people with disabilities are also disadvantaged in this regard. We drew on Bourdieu’s conceptualisation of social capital as the resources that flow to individuals from their membership of social networks. Using data from the General Social Survey 2010 of 15,028 adults living in private dwellings across non-remote areas of Australia, we measured social capital across three domains: informal networks (contact with family and friends); formal networks (group membership and contacts in influential organisations) and social support (financial, practical and emotional). We compared levels of social capital and self-rated health for people with and without disabilities and for people with different types of impairments (sensory and speech, physical, psychological and intellectual). Further, we assessed whether differences in levels of social capital contributed to inequalities in health between people with and without disabilities. We found that people with disabilities were worse off than people without disabilities in regard to informal and formal networks, social support and self-rated health status, and that inequalities were greatest for people with intellectual and psychological impairments. Differences in social capital did not explain the association between disability and health. These findings underscore the importance of developing social policies which promote the inclusion of people with disabilities, according to the varying needs of people with different impairments types. Given the changing policy environment, ongoing monitoring of the living circumstances of people with disabilities, including disaggregation of data by impairment type, is critical.
The Impact of Using Computer Decision-Support Software in Primary Care Nurse-Led Telephone Triage: Interactional Dilemmas and Conversational Consequences
Jamie Murdoch, Rebecca Barnes, Jillian Pooler, Valerie Lattimer, Emily Fletcher, and John Campbell
Telephone triage represents one strategy to manage demand for face-to-face GP appointments in primary care. Although computer decision-support software (CDSS) is increasingly used by nurses to triage patients, little is understood about how interaction is organized in this setting. Specifically any interactional dilemmas this computer-mediated setting invokes; and how these may be consequential for communication with patients. Using conversation analytic methods we undertook a multi-modal analysis of 22 audio-recorded telephone triage nurse–caller interactions from one GP practice in England, including 10 video-recordings of nurses’ use of CDSS during triage. We draw on Goffman’s theoretical notion of participation frameworks to make sense of these interactions, presenting ‘telling cases’ of interactional dilemmas nurses faced in meeting patient’s needs and accurately documenting the patient’s condition within the CDSS. Our findings highlight troubles in the ‘interactional workability’ of telephone triage exposing difficulties faced in aligning the proximal and wider distal context that structures CDSS-mediated interactions. Patients present with diverse symptoms, understanding of triage consultations, and communication skills which nurses need to negotiate turn-by-turn with CDSS requirements. Nurses therefore need to have sophisticated communication, technological and clinical skills to ensure patients’ presenting problems are accurately captured within the CDSS to determine safe triage outcomes. Dilemmas around how nurses manage and record information, and the issues of professional accountability that may ensue, raise questions about the impact of CDSS and its use in supporting nurses to deliver safe and effective patient care.
A Correlative STS: Lessons from a Chinese Medical Practice
Wen-yuan Lin and John Law
How might Science and Technology Studies learn more from the intersection between ‘Western’ and ‘other’ forms of knowledge? In this article, we use Eduardo Viveiros de Castro’s writing on equivocal translation to explore a moment of encounter in a Chinese Medical consultation in Taiwan in which a practitioner hybridizes Chinese Medicine and biomedicine. Our description is symmetrical, but creates a descriptive equivocation in which ‘Western’ analytical terms are used to describe a ‘Chinese’ medical reality. Drawing on the history of Chinese Medicine, we argue that the latter is not analytical, but ‘correlative’ in a specifically ‘Chinese’ manner that explores patternings, flows, and propensities in local collections of things and symptoms. In particular, it both handles difference without seeking to unearth stable causal mechanisms and absorbs new elements including relevant features of biomedicine. We conclude by briefly considering the scope of a possible post-colonial and ‘correlative’ STS and show that a ‘correlative’ description of the same Chinese Medical consultation would differ markedly from one making use of ‘Western’ analytical assumptions.
Advancing Science Diplomacy: Indonesia and the US Naval Medical Research Unit
Frank Smith III
Science diplomacy supposedly builds international cooperation through scientific and technical exchange. In practice, however, there are important but often overlooked instances where it might create conflict instead – as with accusations of espionage surrounding the US Naval Medical Research Unit 2 (NAMRU-2) in Indonesia. Did American science diplomacy backfire in Indonesia and, if so, why? Most literature fails to anticipate this possibility, let alone explain it, since science diplomacy is rarely subject to critical analysis. Rather than shun politics or, similarly, simply blame the demise of NAMRU-2 on the military or avian influenza, I consider both the successes and failures of this research unit in the context of Indonesia’s transition to democracy and America’s legacy from the Cold War. Based on this history, I propose that the effects of science diplomacy depend on strategic communication and exchange, as well as elite influence and material incentives. Therefore, by challenging the conventional wisdom about science diplomacy, NAMRU-2 can help advance the theory and practice of this potentially useful tool of statecraft.
This article draws on ethnographic research at iThemba Pharmaceuticals, a small South African startup pharmaceutical company with an elite international scientific board. The word ‘iThemba’ is Zulu for ‘hope’, and so far drug discovery at the company has been essentially aspirational rather than actual. Yet this particular place provides an entry point for exploring how the location of the scientific knowledge component of pharmaceuticals – rather than their production, licensing, or distribution – matters. The article explores why it matters for those interested in global health and postcolonial science, and why it matters for the scientists themselves. Consideration of this case illuminates limitations of global health frameworks that implicitly posit rich countries as the unique site of knowledge production, and thus as the source of unidirectional knowledge flows. It also provides a concrete example for consideration of the contexts and practices of postcolonial science, its constraints, and its promise. Although the world is not easily bifurcated, it still matters who makes knowledge and where.
Zapatista Corn: A Case Study in Biocultural Innovation
Marisa Brandt
In November 2001, Nature published a letter in which University of California Berkeley’s biologists claimed to have found evidence of genetically modified (GM) DNA in regional varieties of maize in Oaxaca, even though the Mexican government had banned transgenic corn agriculture in 1998. While urban protesters marched against the genetic ‘contamination’ of Mexican corn by US-based agricultural biotech firms, rural indigenous communities needed a framework for understanding concepts such as GM before they could take action. This article analyzes how the indigenous organization, the Zapatistas, mobilized a program to address this novel entity. Their anti-GM project entailed educating local farmers about genetics, importing genetic testing kits, seed-banking landrace corn and sending seeds to ‘solidarity growers’ around the world. This article explores material-semiotic translations to explain one of the central aspects of this project, the definition and circulation of Zapatista corn – an entity defined not only through cultural geography, but also technological means. Through its circulation, Zapatista corn serves to perform a biocultural engagement with Zapatista’s political project of resistance to neoliberalism. While much has been written about both regulatory policy and consumer activism against GM in the Global North, Zapatista corn also provides a case study in indigenous, anti-GM activism founded on biocultural innovation and the creation of alternative networks for circulating corn.
Genetic Fallout in Bio-Cultural Landscapes: Molecular Imperialism and the Cultural Politics of (not) Seeing Transgenes in Mexico
Christophe Bonneuil, Jean Foyer, and Brian Wynne
This article explores the trajectory of the global controversy over the introgression (or not) of transgenes from genetically modified maize into Mexican indigenous maize landraces. While a plurality of knowledge-making processes were deployed to render transgenes visible or invisible, we analyze how a particular in vitro based DNA-centered knowledge came to marginalize other forms of knowledge, thus obscuring other bio-cultural dimensions key to the understanding of gene flow and maize diversity. We show that dominant molecular norms of proof and standards of detection, which co-developed with the world of industrial monocropping and gene patenting, discarded and externalized non-compliant actors (i.e. complex maize genomes, human dimensions of gene flow). Operating in the name of high science, they hence obscured the complex biological and cultural processes that maintain crop diversity and enacted a cultural–political domination over the world of Mexican landraces and indigenous communities.
Listening in the Pakal Controversy: A Matter of Care in Ancient Maya Studies
Matthew Watson
This article explores the fraught historical politics of a 20th-century controversy over a Classic Maya king. The controversy ostensibly concerned the age at death of a ruler discovered in 1952 in an elaborate sarcophagus at the Mexican site of Palenque. Combining osteological and epigraphic techniques, Mexican scholars estimated that the ruler died at about 40 or 50 years of age. Two decades later, an emerging collective of US hieroglyph experts claimed to have determined the grammatical structure of Maya glyphs for the first time and reevaluated the sarcophagus inscriptions. They concluded that the king, given the name ‘Pakal’, lived a remarkably long life of 80 years (603–683 ce). This reading sparked a controversy that would persist until 1999. At stake was not just how to tell the story of an ancient Maya lord, but who could tell it, with what evidence, and with what degree of certainty. The inclination of some Mexican archaeologists to adopt nationalist and Marxist orientations came into palpable tension with foreign scholars’ liberal, universalist knowledge practices. To address this problem, I rethink Pakal’s material mediation through bones and inscriptions as a ‘matter of concern’ (Bruno Latour) and ‘matter of care’ (Maria Puig de la Bellacasa). I show how these concepts facilitate the reconsideration of contradictory historical propositions as potential sites of coexistence among actors temporarily ill equipped to listen to each other’s claims. Ultimately, I present ‘listening’ as a technique of cosmopolitical care that complements the extensive emphasis on speech and spokespersonship in Latourian cosmopolitics.
Creeping Edgework: Carnivalesque Consumption and the Social Experience of Health Risk
James Cronin, Mary McCarthy, and Alan Collins
This article contributes to an understanding of voluntary health risk based on the regular, excessive intake of food and alcohol in the micro-cultural setting. By drawing on and extending edgework theory our aim is to conceptualise the riskiness of carnivalesque consumption as a medium for expression and performance in two separate community contexts. Using ethnographic research methods, we explore the consumption of calorie-dense, low nutrient food for gamers and the use of alcohol for hipsters. Our findings are reported over four key themes. The first and last consider how carnivalesque consumption provides sensations for multi-sensory loss of self and a shared emancipation from day-to-day moderation. The second and third explore how community members prepare and exercise control over their consumption to manage risks related to an ‘immediate edge’. We discuss how carnivalesque behaviour, when ritualised, establishes a trajectory that creeps towards a more ‘distant edge’ characterised by longer term health consequences. We argue that the transcendental experiences that are part and parcel of edgework can be enacted by products that are traditionally conceptualised as mundane and that the risks of consuming them are largely accumulative rather than instantaneous. Implications for health interventions are included.
The Pharmacy Gaze: Bodies in Pharmacy Practice
Kimberly Jamie
The body is a central feature of pharmacy practice. Despite this and the increased sociological focus on bodies in health and social care practice, the nature of the body and the work undertaken upon it in pharmacy have not been explored. Drawing on semi-structured interviews with hospital and community pharmacists, this article explores the ways in which bodies are constructed and managed in these two practice contexts. It is argued that pharmacists see patients’ bodies in particular ways given their expertise in medicines, which is conceptualised here as the pharmacy gaze. The notion of complexity, as a way of constructing the body, and the generation of algorithmic bodies, as a way of managing this complexity, are shown to be central to the pharmacy gaze in both hospital and community contexts. In hospitals, complexity was located in a singular body, that is, increasingly rationalised to reduce costs and toxicity. In community practice, complexity arose from the multiplicity of bodies with which pharmacists interact in their multifaceted role as retailers, dispensers and public health practitioners. The article concludes by reflecting on the ways in which current UK health policy may broaden the body work that English pharmacists undertake.
Missing in Action: Inclusion and Exclusion in the First Days of AIDS in The Netherlands
Huub Dijstelbloem
Approaches combining social and political theory with ontology have rarely been utilised in the evaluation of decision-making processes. Drawing on such an approach clarifies the questions that still need to be asked about the policy response to HIV/AIDS in The Netherlands in the early 1980s. The initial response in The Netherlands is internationally regarded as an example of successful cooperation between public authorities, health organisations, blood banks and the gay movement. In comparison with other countries, deeply dividing social conflicts as well as dramatic medical disasters were avoided. This image, however, is misleading. Although it was on a smaller scale than the disasters with contaminated blood products in other countries, The Netherlands had their blood scandal too. A reconstruction of this episode offers the opportunity to evaluate the role objects are granted in theories of institutionalisation and to critically examine the procedural notion of politics in actor network theory. The aim of the article is to show that analyses of decision-making processes under conditions of uncertainty ought to engage more carefully with processes of exclusion and the transformative role of objects.
‘This Wound has Spoilt Everything’: Emotional Capital and the Experience of Surgical Site Infections
Brian Brown, Judith Tanner, and Wendy Padley
In this article we explore the experience of suffering from a surgical site infection, a common complication of surgery affecting around 5 per cent of surgical patients, via an interview study of 17 patients in the Midlands in the UK. Despite their prevalence, the experience of surgical site infections has received little attention so far. In spite of the impairment resulting from these iatrogenic problems, participants expressed considerable stoicism and we interpret this via the notion of emotional capital. This idea derives from the work of Pierre Bourdieu, Helga Nowotny and Diane Reay and helps us conceptualise the emotional resources accumulated and expended in managing illness and in gaining the most from healthcare services. Participants were frequently at pains not to blame healthcare personnel or hospitals, often discounting the infection’s severity, and attributing it to chance, to ‘germs’ or to their own failure to buy and apply wound care products. The participants’ stoicism was thus partly afforded by their refusal to blame healthcare institutions or personnel. Where anger was described, this was either defused or expressed on behalf of another person. Emotional capital is associated with deflecting the possibility of complaint and sustaining a deferential and grateful position in relation to the healthcare system.
‘Active Play May be Lots of Fun, But it’s Certainly not Frivolous’: The Emergence of Active Play as a Health Practice in Canadian Public Health
Stephanie Alexander, Katherine Frohlich, and Caroline Fusco
In the context of what has been termed a childhood obesity epidemic, public health institutions have recently begun to promote active play as a means of addressing childhood obesity, thus advancing play for health. Drawing on Foucault, this article problematises the way that children’s play is being taken up as a health practice and further considers some of the effects this may have for children. Six Canadian public health websites were examined, from which 150 documents addressing children’s health, physical activity, obesity, leisure activities and play were selected and coded deductively (theoretical themes) and inductively (emerging themes). Bacchi’s (2009) question-posing approach to critical discourse analysis deepened our analysis of dominant narratives. Our findings suggest that several taken-for-granted assumptions and practices underlie this discourse: (i) play is viewed as a productive activity legitimises it as a health practice; (ii) tropes of ‘fun’ and ‘pleasure’ are drawn on to promote physical activity; (iii) children are encouraged to self-govern their leisure time to promote health. We underscore the need to recognise this discourse as contingent and as only one of many ways of conceptualising children’s leisure activities and their health and social lives more generally.
Pathways to Care: How Superdiversity Shapes the Need for Navigational Assistance
Gill Green, Charlie Davison, Hannah Bradby, Kristine Krause, Felipe Morente Meijías, and Gabriele Alex
The recently developed sociological concept of superdiversity provides a potentially interesting and useful way of developing an understanding of life in contemporary Europe. Here we report on research based on individual narratives about access to health care, as described by a range of people from very different sociocultural backgrounds in four European countries. This article notes the frequent appearance in first-person narratives of the need for navigational assistance in the form of knowledge, cultural competence and orientation that facilitate the identification and use of pathways to health care. Our dataset of 24 semi-structured interviews suggests that, in the context of needing health care, the feeling of being a ‘stranger in a strange land’ is common in people from a wide range of backgrounds. In social settings characterised by transnationalism and cultural heterogeneity, it is important to understand the need for navigational assistance, particularly at times of uncertainty, in the design and delivery of health services. The relationship between the inhabitants of contemporary Europe and the healthcare systems available in the places where they live is dominated by both complexity and contingency – and this is the cultural field in which navigation operates.
Keeping it in the Family: The Self-Rated Health of Lone Mothers in Different European Welfare Regimes
Sarah Van de Velde, Clare Bambra, Koen Van der Bracht, Terje Andreas Eikemo, and Piet Bracke
This study examines whether health inequalities exist between lone and cohabiting mothers across Europe, and how these may differ by welfare regime. Data from the European Social Survey were used to compare self-rated general health, limiting long-standing illness and depressive feelings by means of a multi-level logistic regression. The 27 countries included in the analyses are classified into six welfare regimes (Anglo-Saxon, Bismarckian, Southern, Nordic, Central East Europe (CEE) (new EU) and CEE (non-EU). Lone motherhood is defined as mothers not cohabiting with a partner, regardless of their legal marital status. The results indicate that lone mothers are more at risk of poor health than cohabiting mothers. This is most pronounced in the Anglo-Saxon regime for self-rated general health and limiting long-standing illness, while for depressive feelings it is most pronounced in the Bismarckian welfare regime. While the risk difference is smallest in the CEE regimes, both lone and cohabiting mothers also reported the highest levels of poor health compared with the other regimes. The results also show that a vulnerable socioeconomic position is associated with ill-health in lone mothers and that welfare regimes differ in the degree to which they moderate this association.
Trust in Health Care Encounters and Systems: A Case Study of British Pensioners Living in Spain
Helene Legido-Quigley, Martin McKee, and Judith Green
Research on trust in health care faces two enduring challenges. Firstly, there are conceptual ambiguities in distinguishing trust from related concepts, such as confidence or dependence. Second, the tacit understandings which underpin the ‘faith’ element of trust are difficult to explicate. A case study of British pensioners who have moved to Spain provides an opportunity to explore trust in a setting where they often have a choice of where to access health care (UK or Spain), and are therefore not in a state of dependence, and in which the ‘differences’ of a new field generates reflection on their tacit expectations of providers and systems. In accounting for decisions to use (or not to use) Spanish health care, British pensioners cited experiential knowledge of symbolic indicators of trustworthy institutions (they were hygienic, modern, efficient), which contributed to background confidence in the system, and interpersonal qualities of practitioners (respect for older people, embodied empathy and reciprocity) which evoked familiar relations, within which faith is implicit. In contrast, with limited recent access to the British system, their background confidence had been compromised by reports of poor performance, with few opportunities to rebuild the interrelational bases of trust.
Reconsidering Inequalities in Preventive Health Care: An Application of Cultural Health Capital Theory and the Life-Course Perspective to the Take-up of Mammography Screening
Sarah Missinne, Karel Neels, and Piet Bracke
While there are abundant descriptions of socioeconomic inequalities in preventive health care, knowledge about the true mechanisms is still lacking. Recently, the role of cultural health capital in preventive health-care inequalities has been discussed theoretically. Given substantial analogies, we explore how our understanding of cultural health capital and preventive health-care inequalities can be advanced by applying the theoretical principles and methodology of the life–course perspective. By means of event history analysis and retrospective data from the Survey of Health Ageing and Retirement, we examine the role of cultural capital and cultural health capital during childhood on the timely initiation of mammography screening in Belgium (N = 1348). In line with cumulative disadvantage theory, the results show that childhood cultural conditions are independently associated with mammography screening, even after childhood and adulthood socioeconomic position and health are controlled for. Lingering effects from childhood are suggested by the accumulation of cultural health capital that starts early in life. Inequalities in the take-up of screening are manifested as a lower probability of ever having a mammogram, rather than in the late initiation of screening.
Trust has long been regarded as a vitally important aspect of the relationship between health service providers and patients. Recently, consumer choice has been increasingly advocated as a means of improving the quality and effectiveness of health service provision. However, it is uncertain how the increase of information necessary to allow users of health services to exercise choice, and the simultaneous introduction of markets in public health systems, will affect various dimensions of trust, and how changing relations of trust will impact upon patients and services. This article employs a theory-driven approach to investigate conceptual and material links between choice, trust and markets in health care in the context of the National Health Service in England. It also examines the implications of patient choice on systemic, organisational and interpersonal trust. The article is divided into two parts. The first argues that the shift to marketisation in public health services might lead to an over-reliance on rational-calculative aspects of trust at the expense of embodied, relational and social attributes. The second develops an alternative psychosocial conception of trust: it focuses on the central role of affect and accounts for the material and symbolic links between choice, trust and markets in health care.
International epidemiological evidence demonstrates that more children than ever before now enter puberty before the age of 8. Early onset puberty can be an alarming experience for parents and is thought to entail short- and long-term physical and psychosocial risks, particularly for girls. ‘Puberty blocking’ hormonal medications are sometimes used to halt the progress of puberty in order to avoid these dangers. This article analyses medical and pharmaceutical discourses describing these medications, exploring how they articulate sex/gender, sexuality, age and health. Engaging with sociological literatures on pharmaceuticalisation and queer and feminist work on atypical sexual development and trans, I argue that prescribing puberty blockers should not be seen as a straightforward ‘solution’ to early sexual development. Learning from Elizabeth A. Wilson’s (2011) engagement with Karen Barad’s reconceptualising of bodies, I suggest how we might take account of the psychological and physical worldliness of early developing children when evaluating puberty blockers.
Posthuman Disability Studies
Dan Goodley, Rebecca Lawthom, and Katherine Runswick Cole
This article explores the human through critical disability studies and the theories of Rosi Braidotti. We ask: What does it mean to be human in the twenty-first century and in what ways does disability enhance these meanings? In addressing this question we seek to work through entangled connections of nature, society, technology, medicine, biopower and culture to consider the extent to which the human might be an outdated phenomenon, replaced by Braidotti’s posthuman condition. We then introduce disability as a political category, an identity and a moment of relational ethics. Critical disability studies, we argue, are perfectly at ease with the posthuman because disability has always contravened the traditional classical humanist conception of what it means to be human. Disability also invites a critical analysis of the posthuman. We examine the ways in which disability and posthuman work together, enhancing and complicating one another in ways that raise important questions about the kinds of life and death we value. We consider three of Braidotti’s themes in relation to disability: (i) Life beyond the self: Rethinking enhancement; (ii) Life beyond the species: Rethinking animal; (iii) Life beyond death: Rethinking death. We conclude by advocating a posthuman disability studies that responds directly to contemporary complexities around the human while celebrating moments of difference and disruption.
Governmentality, Subjectivity and AIDS
Nkululeko Nkomo and Carol Long
Our aim in this article is to examine the South African state’s discursive deployment of the African renaissance discourse to prompt a particular kind of HIV positive subjectivity, during the years 1996–2003. We interrogate this connection along two axes. First, the article offers an analysis of the state’s nudging of a new African subjectivity. Second, we examine the state’s representation of a new African HIV positive subjectivity. In this way, the representation of a new African subjectivity – and subsequently a new HIV positive subjectivity – and the realization of the African renaissance discourse of a reconstructed Africa were mutually supporting. A critical analysis of the state and the treatment lobby group’s representational practices implicates both in prompting the formation of an HIV positive subject who is rational, dignified and free.
Social Science and Neuroscience Beyond Interdisciplinarity: Experimental Entanglements
Des Fitzgerald and Felicity Callard
This article is an account of the dynamics of interaction across the social sciences and neurosciences. Against an arid rhetoric of ‘interdisciplinarity’, it calls for a more expansive imaginary of what experiment – as practice and ethos – might offer in this space. Arguing that opportunities for collaboration between social scientists and neuroscientists need to be taken seriously, the article situates itself against existing conceptualizations of these dynamics, grouping them under three rubrics: ‘critique’, ‘ebullience’ and ‘interaction’. Despite their differences, each insists on a distinction between sociocultural and neurobiological knowledge, or does not show how a more entangled field might be realized. The article links this absence to the ‘regime of the inter-’, an ethic of interdisciplinarity that guides interaction between disciplines on the understanding of their pre-existing separateness. The argument of the paper is thus twofold: (1) that, contra the ‘regime of the inter-’, it is no longer practicable to maintain a hygienic separation between sociocultural webs and neurobiological architecture; (2) that the cognitive neuroscientific experiment, as a space of epistemological and ontological excess, offers an opportunity to researchers, from all disciplines, to explore and register this realization.
Critical Neuroscience and Socially Extended Minds
Jean Slaby and Shaun Gallagher
The concept of a socially extended mind suggests that our cognitive processes are extended not simply by the various tools and technologies we use, but by other minds in our intersubjective interactions and, more systematically, by institutions that, like tools and technologies, enable and sometimes constitute our cognitive processes. In this article we explore the potential of this concept to facilitate the development of a critical neuroscience. We explicate the concept of cognitive institution and suggest that science itself is a good example. Science, through various practices and rules, shapes our cognitive activity so as to constitute a certain type of knowledge, packaged with relevant skills and techniques. To develop this example, we focus on neuroscience, its cultural impact, and the various institutional entanglements that complicate its influence on reframing conceptions of self and subjectivity, and on defining what questions count as important and what kind of answers will be valued.
Biomimicry: New Natures, New Enclosures
Jesse Goldstein and Elizabeth Johnson
Advocates of biomimicry encourage a new industrial paradigm that ostensibly leaves behind the crude violence of Francis Bacon, the domination of nature-as-machine, and a history of toxic production processes that have given rise to a present and coming climate crisis. As part of a broader trend towards the conceptualization and development of a ‘bioeconomy’, we argue here that biomimicry produces ‘nature’ in new ways. At face value, these new approaches to valuing nature may seem less violent and exploitative. Yet, new natures can and are tortured in new ways. We argue that biomimicry produces ‘nature’ through well-worn logics of resource enclosure and privatization, focusing upon two fundamental shifts in how nonhuman life is figured and put to work: (1) the production of nature as intellectual property (as opposed to raw materials); (2) the production of nature as an active subject (as opposed to a passive receptacle or vehicle).