Medical Anthropology Quarterly
This month’s edition of MAQ examines the Covid-19 pandemic and the role of medical anthropology in making sense of and responding to it.
Medical Anthropology in the Time of COVID‐19 (free access)
Vincanne Adams, Alex Nading
In lieu of an abstract, here is the first paragraph of the article opening the current issue:
In different ways and for different reasons, a sense that the COVID‐19 pandemic has changed everything has come to dominate public, personal, and intellectual life. The pandemic continues to precipitate simultaneous dread over what is to come and loss over what appears to be gone forever, including loved ones, ways of life, and conceptual and literal safety nets. Over a year has passed since the identification of the virus as a human scourge, but the Damoclesian shadow of the pandemic continues to haunt the world. The social entanglements it created have been both for better and for worse, but they have always exceeded the pathogen’s physical effects on bodies. Anthropologists recognize in these patterns not only a rupture but also the familiar, as if what can be seen now is not new but has simply been made clearer.
What Went Wrong: Corona and the World after the Full Stop (open access)
This article examines the global response to the Covid‐19 pandemic. It argues that we urgently need to look beyond the virus if we want to understand the real seriousness of what is happening today. How did we end up in a space of thinking, acting, and feeling that has normalized extremes and is based on the assumption that biological life is an absolute value separate from politics? The author suggests that today’s fear is fueled by mathematical disease modeling, neoliberal health policies, nervous media reporting, and authoritarian longings.
Multimorbidity, Polyiatrogenesis, and COVID‐19 (free access)
To date, the strongest predictor for dying with COVID‐19 is suffering from several chronic disorders prior to the viral infection. Pre‐existing multimorbidity is highly correlated with socioeconomic inequality. In turn, having several chronic conditions is closely linked to multiple medication intake, especially in richer countries with good access to biomedical care. Owing to its vertical structure, biomedicine often risks giving multiple treatments in an uncoordinated way. Such lack of integrated care can create complex forms of iatrogenic harm. Multimorbidity is often exacerbated by a pharmaceuticalization of social deprivation in place of integrated care. In this article, I explore the possibility that clusters of over‐medication are a contributing factor to higher death rates from COVID‐19, especially in poorer areas within richer countries. Anthropological perspectives on the social embeddedness of multimorbidity and multiple medication use can expand our understanding of who is most vulnerable to SARS‐CoV‐2.
The WetNet: What the Oral Polio Vaccine Hypothesis Exposes about Globalized Interspecies Fluid Bonds (open access)
S. Lochlann Jain
The author analyzes the aftermath of Edward Hooper’s suggestion that the trial of an oral polio vaccine (OPV) in the Belgian colonies of Africa engendered the pandemic form of the AIDS virus, HIV‐1. In response to Hooper’s book, The River (1999), the Royal Society in London held a conference to debate the origins of HIV. Examination of the quick dismissal of the OPV theory opens a space for legitimately challenging the widely held belief that the vaccine contamination question was convincingly resolved. This article interrogates the relationship between historiography and the making of scientific facts and history, suggesting that historians have been too credulous of scientists’ testimony. The further result of the lack of a thorough analysis of the evidence backing the OPV hypothesis has resulted in a missed opportunity to read The River as one of the few detailed accounts of the immense social, political, technological, and interspecies infrastructure constituted by Cold War vaccine production. This biomedical infrastructure dramatically changed the geographic and interspecies mobility of viruses in ways that may be impossible to reconstruct. Yet these potential transmission routes remain crucial to acknowledge. The COVID‐19 pandemic draws attention to the critical importance of studying The WetNet, a concept coined by the author to name the conceptual and material infrastructures of inter‐ and intraspecies fluid bonding.
Hydroxychloroquine Controversies: Clinical Trials, Epistemology, and the Democratization of Science (open access)
Luc Berlivet, Ilana Löwy
The claim that anti‐malaria drugs, chloroquine and hydroxychloroquine, can cure COVID‐19 became a focus of fierce political battles that pitted promoters of these pharmaceuticals, Presidents Bolsonaro and Trump among them, against “medical elites.” At the center of these battles are different meanings of effectiveness in medicine, the complex role of randomized clinical trials (RCTs) in proving such effectiveness, the task of medical experts and the state in regulating pharmaceuticals, patients’ activism, and the collective production of medical knowledge. This article follows the trajectory of chloroquine and hydroxychloroquine as anti‐COVID‐19 drugs, focusing on the reception of views of their main scientific promoter, the French infectious disease specialist, Didier Raoult. The surprising career of these drugs, our text proposes, is fundamentally a political event, not in the narrow sense of engaging specific political fractions, but in the much broader sense of the politics of public participation in science.
The Culling: Pandemic, Gerocide, Generational Affect (free access)
Old age has been central to public health rationalities and contestations of the 2019–2020 coronavirus pandemic. This article thinks through what age is and does in pandemic times by juxtaposing four domains of ethical publicity in which age comes to matter: (1) mass fatality of old persons under conditions of variable unpreparedness; (2) circulation of social‐Darwinist argument for herd immunity through culling of the weak; (3) everyday challenges of late life care as these are amplified under quarantine; and (4) long‐term conditions of economic and political impasse and environmental collapse, experienced as failure of older generations and abandonment of younger ones, a situation here termed generational affect. It asks to what extent the figure of the cullable old renders racialized disparities natural and makes sense through a generational affect in which the world feels as if the survival of the young is in question.
Qatar, the Coronavirus, and Cordons Sanitaires: Migrant Workers and the Use of Public Health Measures to Define the Nation (free access)
This article looks at the use of public health strategies to define political membership in the nation. I examine the use of the cordon sanitaire to mitigate the novel coronavirus in Qatar. I argue that it acts primarily as a boundary to map out zones of political exclusion, splitting those who are entitled to protection from disease from those who are not. Through an analysis of the logic, application, and history of the cordon sanitaire in Qatar and elsewhere, I argue that it is only a more explicit example of the ways that governments have applied public health measures such that they apportion exposure to COVID‐19, protecting some while mandating exposure for others. Exposure, or protection from it, has become a means to spatialize power and territorialize the national imaginary, separating full members from those who are excluded and reduced to their economic function.
Plantation Politics, Paranoia, and Public Health on the Frontlines of America’s COVID‐19 Response (free access)
“Plantation politics” pervade multiple institutions in the United States, including public health. Drawing from my experience working as a volunteer at drive‐thru COVID testing sites in the United States, I critically examine the relationship between public health, the military, and capitalism when racial slavery serves as the sociopolitical backdrop of everyday life. I ponder what it means for Black people to toil for a country, in the midst of an emergent communicable disease outbreak, that would weeks later launch into protests for and debates about their entitlements to freedom, safety, and security. Starting from experiences of Black women on the frontlines, I reveal complexities that underlie and undermine notions of care as altruistic, natural, or ethical “in the wake” of chattel slavery and in the midst of racial capitalism.
This issue of Medical Humanities features a special section on “The heart in medicine, history and culture” as well as a diverse array of original research articles unrelated to that theme.
The heart in medicine, history and culture
Therese Feiler, Joshua Hordem
In lieu of an abstract, here is the first paragraph of the introduction to the special section:
The heart is of perennial interest and needs (almost) no introduction. In moments of anticipation, fear, stress or joy, the beating heart draws us back deep into our physical existence. A central organ of the animal body, it has of course also been of great medical interest. Yet, despite or perhaps because of its felt immediacy, the heart points beyond the limitations of the body. The heart is a metaphor, a symbol and a trope across time and cultures. Layers of history—theological, philosophical, cultural, even political—shape the way we understand, treat and speak by means of the heart.
Sacred hearts and pumps: cardiology and the conflicted body politic (1500–1900)
This article examines how conflicting notions of the body politic between the natural and the spiritual have contextualised the evolution of cardiology. After a brief look at the place of the heart in biblical, patristic and medieval notions of the church, the article turns to the Reformation period. While Martin Luther moved theological gravity to the individual’s heart and conscience, his contemporary Michael Servetus described the pulmonary cycle in the context of an antitrinitarian theology condemned as theological and political heresy. In the early modern period, nature conceived as creation grounded sovereign political authority, which science could then align with. Whereas William Harvey still adhered to an Aristotelian teleology, René Descartes and subsequent mechanistic contributions to cardiology were flanked by an intense ‘cardiolatry’. Both, it is argued, are two sides of the same, almost non-corporeal coin. The emerging Enlightened epistemology allowed for a position distinct from both sovereign and ecclesial powers. The French Revolution was a paradigm shift: the ancien régime falls, and its Sacred Heart devotion is mocked; the new ‘Erastian’ state-university emerges as the context of cardiology. These developments are reflected in the life of René Laënnec and in cultural interpretations of the heart later in the 19th century. It is shown that the heart as a doubly inscribed, both biological and spiritual organ, played a central role in theological, and therefore political and scientific notions of the body politic. These continue to haunt the present, allowing us to interpret normative appeals to the heart particularly in political contexts.
The haunted heart and the Holy Ghost: on retrieval, donation and death
This enquiry examines problems which haunt the ‘heart’ and its donation. It begins by examining the heart’s enduring significance for culturally mediated self-understanding, its vulnerability to misunderstanding and abuse and its relevance to challenging the determination of death by neurological criteria. Despite turns to brain-centred self-conceptions, the heart remains haunted by the hybrid experiences of identity accompanying organ transplant, the relational significance attached to dead hearts witnessed in the Alder Hey scandal and claims that heart transplants commonly constitute the legitimate killing of a person. To explore these phenomena, traditions are retrieved in which the heart-as-organ was construed in terms of a person’s core identity. Influential Abrahamic beliefs about ‘the heart’ are considered in order to explore explanations for why the heart remains culturally pre-eminent, to make intelligible our haunted hearts and to examine possible violations of solidarity in organ donation practice. Jewish and Christian Scriptures are exegeted to illumine the sources of our haunting and address the desire for holistic bodily life. In these sources, the heart is the seat of affections, intelligence and agency but requires healing, conceived via the surgical metaphors of heart transplant and circumcision, if people are to join the insightful, solidary path of pilgrimage. Absent healing, the heart experiences a judgement of the whole person—organ-and-core—at the moment of death. Through such exegesis, the doctrine of the Holy Ghost emerges as a way to make intelligible, though not dispel, the heart’s haunting. The doctrine’s practical significance concerns the possibility of social unity among hearts, ‘intercordiality’, which construes people within a covenantal life of pilgrimage which encourages heart donation in certain circumstances, makes intelligible the Alder Hey parents’ experience of social misunderstanding and rejects ascribing any legitimacy in medical culture to the consensual killing of patients for the sake of retrieving their organs.
Heart surgery and transplantation: innovations impacting on concepts of life and death
David K.C. Cooper
The development of heart surgery is briefly reviewed, and the impact it has made on our concepts of life and death are considered. For centuries, death was defined by the cessation of heart beat. In the early days of heart surgery in the 1940s and 1950s, the heart sometimes temporarily stopped beating, but could be resuscitated, and some concluded that the patient had been ‘dead’ for a period of time. Subsequently, when the patient’s brain and other vital organs were protected either by the induction of a state of total body hypothermia or by the support of a heart-lung machine, the heart was purposely stopped from beating for periods of a few minutes to even several hours, but the patient remained alive. When heart transplantation was introduced in 1967, for a period of time the patient not only had no heartbeat, but had no heart, yet was not dead. When total artificial hearts were introduced, the patient permanently had no heart, but remained alive. In the near future, it is likely that the native heart will be permanently replaced by a genetically-engineered pig heart. Organ transplantation, particularly of the heart, contributed further to our changing concepts of life and death. In 1963, surgeons began to remove organs from donors whose brain had been irreversibly damaged, and had been diagnosed as being ‘brain-dead’, but in whom the heart was still beating. By 1968, the beating heart was routinely removed from brain-dead donors and transplanted into recipients, but this was no longer considered to be illegal as brain death had become the definitive definition of death, not lack of a heart beat or even lack of a heart.
Pump, person and Parfit: why the constitutive heart matters
Hugh Farrell McIntyre
The historical view of the heart as a source and repository of characteristics of individual persons remains prevalent in speech and literature. A more recent scientific view regards the heart as just a replaceable mechanical device, supporting a hydraulic system (the pump-view). To accept the pump-view is to reduce the historical view of the heart, and reference to it, to metaphor. To address whether this conclusion is justified, this paper investigates what constitutes an individual person over time and whether the heart has any role in that constitution. While some physical continuity may be necessary, most philosophers agree that our ‘personal identity’ is conferred through the persistence of ‘psychological’ characteristics predominantly through memory. Memory is constituted through the interplay of external and internal sensory experience—to which the heart is a major contributor. On scientific grounds alone this sensory role for the heart makes the pump-view incomplete. If our persistence as a person reflects the totality of experience codified through memory, and the heart is a central source of the internal component of that experience, then the pump-view is also misleading since the heart plays some constitutive role. More widely, if what fundamentally matters for our survival as persons is just psychological continuity, then the pump-view is irrelevant. While a ‘supportive heart’ may be necessary for continued embodiment, it is on the constitutive role of the heart, as part of a unique internal experience, that our individuation as persons depends.
Reflections on the heart: medicine, emotion and history
Fay Bound Alberti
In lieu of an abstract, here is the first paragraph of this commentary article:
In Matters of the Heart: History, Medicine, Emotion (Bound Alberti, 2010), I posited that the heart of culture and the heart of science became disconnected in the nineteenth century; that the heart which had for centuries been the centre of life, emotions and personhood lost out to the brain as the organ par excellence of selfhood. This process was not clear-cut or definitive. There had been interest in craniocentric versions of the self in the ancient world, and there is continued emphasis in the emotional heart in the present day, as Josh Hordern’s article explores through such examples as the organ scandal at Alder Hey Children’s Hospital in Liverpool. So, what is it about the heart, that peculiar, emotive and sensorially charged organ, that continues to be associated with some essence of the self? After all, in medical terms, it is a mere pump.
‘Knowing everything and yet nothing about her’: medical students’ reflections on their experience of the dissection room
Christopher Kassam, Robbie Duschinsky, Cecilia Brassett, Stephen Barclay
Anatomy education by cadaveric dissection teaches medical students not only the formal curriculum in human anatomy, but also a ‘hidden curriculum’ whereby they learn the attitudes, identities and behaviours expected of doctors. While dissection has been investigated as a challenge to and training in emotional regulation, little attention has been paid hitherto to the forms of medical knowledge and identity which students encounter and develop in the dissection room. This study analyses a corpus of 119 tributes written by three consecutive cohorts of first-year medical students at a university to their cadaveric donors. We employ a Foucauldian discourse analysis methodology, seeking to elucidate the features of the subject position, the narrative ‘I’ or ‘we’ of the tributes, and the modes of knowledge which operate between that subject position and its object, the donor. We observe that students find themselves in a transitional state between personal and scientific modes of knowledge of the human, which correspond to different models of the subject position occupied by the student. While in many tributes these modes exist in an uneasy disjunction, others employ creative reflection to suggest new modes of knowledge and identity which may inform ethical practice.
Psychosocial curating: a theory and practice of exhibition-making at the intersection between health and aesthetics
A recent Manifesto for a Visual Medical Humanities suggested that more in-depth analysis of the contribution of visual art to medical humanities is urgently required. This need perhaps arises because artists and curators experience conflict between the experimental approaches and tacit knowledge that drive their practice and existing audience research methods used in visitor studies or arts marketing. In this paper, I adopt an innovative psychosocial method—uniquely suited to evidencing aesthetic experiences—to examine how an exhibition of my own curation facilitated audiences to undertake psychological processing of complex ideas about mental distress. I consider the curator working in a health context as a creator of care-driven environments where complex affects prompted by aesthetic approaches to illness can be digested and processed. My definition of care is informed by psychosocial studies and object relations psychoanalysis, which allows me to approach my exhibitions as supportive structures that enable a spectrum of affects and emotions to be encountered. The key argument of the paper is that concepts from object relations psychoanalysis can help to rethink the point of entanglement between curating and health as a process of preparing the ground for audiences to do generative psychological work with images and affects. The case study is Group Therapy: Mental Distress in a Digital Age, an exhibition that was iterated at FACT (Foundation for Art and Creative Technology), UK and University of New South Wales Galleries Sydney, with an emphasis on audience response to key artworks such as Madlove—A Designer Asylum (2015) by the vacuum cleaner and Hannah Hull. It is hoped that this paper will help to reaffirm the significance of curating as a cultural platform that supports communities to live with the anxieties prompted by society’s most complex medical and social issues.
State, religion and the marginalisation of traditional healing in Gwadar, Pakistan
Shakir Ullah, He Guoqiang, Usman Khan, Komal Niazi
This ethnographic encounter explores suppression and domination faced by traditional health seekers in Gwadar, Pakistan. The study aimed to provide an insight into the ways in which practicing traditional healthcare becomes a challenge when it conflicts with the assimilationist project of the state. Qualitative research methods, including in-depth interviews and participant observation, were used to collect data on the encounters of traditional health seekers with the state and dominant religion. The findings show that traditional health seeking behaviour was stereotyped as non-civilised and archaic by medical staff, and labelled as non-religious, and thus, suppressed by radical Islamist groups and other state apparatuses. This situation has further negative effects on the health of traditional health seekers as the national healthcare system does not efficiently provide the services required by this population. State laws, a general environment of fear, and threats have led this population to legal consciousness and contextual awareness; they have further adopted multiple resistance strategies to navigate and circumvent oppressive laws and domination in order to follow their traditional healthcare practices. This study suggests that national cosmopolitan healthcare services provided to the fishing community should be tailored to and not suppress the culturally specific health needs of that population. Members of the fishing community should not be compelled to abstain from their traditional healthcare and health-seeking behaviours; traditional healthcare practices should be merged with cosmopolitan ones in order to address the sociocultural issues and meet the health needs of this marginalised population.
From hermeneutics to heteroglossia: ‘The Patient’s View’ revisited
Benjamin Chin-Yee, Pablo Diaz, Pier Bryden, Sophie Soklaridis, Ayelet Kuper
This article explores conceptual and methodological challenges surrounding the recovery of patients’ voices in the history of medicine. We examine the debate that followed Roy Porter’s seminal article, ‘The Patient’s View: Doing Medical History from Below’ (1985). Porter argued that patients should be given a central role in medical history, aiming to restore to patients a voice and agency that is often lost in ‘physician-centered’ historical narratives. His work carried significant influence but also sparked an ongoing debate about the possibility of conducting ‘patient-centered’ history of medicine. The growth of the medical humanities has afforded renewed attention to patient narratives, supporting the need to recognise patients’ voices in contemporary healthcare and medical education. However, several barriers complicate and problematise the expansion of a patient-centred epistemology across historical periods. Postmodern critics have expressed scepticism that ‘the patient’s view’ can be recovered from history, with some claiming that ‘the patient’ is a construct of the ‘medical gaze’ whose subjectivity cannot be reconstituted outside of sociohistorical discourses of knowledge and power. Psychiatry in the mid-20th century presents a particular challenge for patient-centred history. We discuss the influence of postmodern theorists, especially Michel Foucault, whose work is seen as undermining the possibility of a patient-centred epistemology. We argue against Foucault’s erasure of the patient, and instead explore alternate constructivist epistemologies, focusing on the hermeneutics of Hans-Georg Gadamer and dialogism of Mikhail Bakhtin, to help address historiographical challenges in recovering ‘the patient’s view’. To illustrate the value of Gadamerian and Bakhtinian approaches, we apply them to a case study from the Verdun Protestant Hospital (Québec, Canada) from 1941 to 1956, which sheds light on the introduction of the first antipsychotic, chlorpromazine, into clinical practice. We highlight how Gadamer’s hermeneutics and Bakhtin’s dialogism together offer insights into patient perspectives during this liminal period in the history of psychiatry.
Modern tragedies in self-help literature, blogs and online universes: conceptions of resilience as a literary phenomenon
Louise Folker Christensen, Peter Simonsen, Anna Paldam Folker
Focusing on the configuration of the relationship between fate and freedom of action, this article analyses recent self-help literature and online communities, particularly the genre that centres on the concept of resilience. The selected works and websites all address readers who suffer from depression, anxiety and stress. The article focuses on how the relationship between fate and freedom is represented in three literary figures: the reader, who is promised recovery; the narrator, who promises to save the reader from the mental illnesses; and the plot that the reader forms by his or her personal thoughts, feelings and experiences. Furthermore, fate and freedom will be analysed in a series of allegories and metaphors. We argue that each literary figure reflects a radical understanding of individual autonomy, that is, freedom of action. However, we also argue that each literary figure has a shadowy disadvantage, which activates a tragic reversal of fate. The article analyses how this self-help genre reflects a notion of tragedy in relation to mental suffering.
Public attention for private concerns: intellectual disability parents’ organisations in the Republic of Ireland, 1955–1970 (free access)
This article examines the influence of intellectual disability ‘parents and friends’ organisations in the Republic of Ireland between 1955 and 1970, a period that coincided with the emergence of parental disability activism internationally. Drawing on their publications and activities, it argues that Irish groups adopted a significant, if circumscribed, response to ‘learning disabilities’ that was reflective of a broader political and social policy approach during the midcentury, with local organisations supporting parents of ‘deficient’ children and establishing key services across the country. It highlights the way in which these pioneering actions align with existing norms in the state and explores the effect of this voluntary-driven response for the intellectually disabled. Approached in this way, the actions of these learning disability organisations complicate international research on postwar disability activism while furthering an emergent body of research into the complex realities that precluded transformative change in Irish society during the mid-20th century.
Public hygiene and funeral rituals during the Risorgimento: mummies and ashes
Silvia Marinozzi, Daniela Messineo, Valentina Gazzaniga, Silvia Iorio
Starting in 1865, regulations pursuant to public hygiene issued by the Unitary Government provided for administrative and political control of the funerary practice. Specifically, they regulated the management of cemeteries and the burials, increasingly drawing the funeral rituals from the control of the Church and of Catholicism, therefore secularising death for the construction of a new political religion. Hygiene became fundamental in order to promulgate cremation as a system of preserving the integrity of the bodies, preserving the ashes as a tangible and indestructible product of body matter and as a measure to protect public health by eliminating the risk of miasmatic pollution of the air caused by the cadaveric fumes. In the early 1870s, the practice of cremation began to spread, especially in the territories of Lombardy-Veneto and Savoy, as an expression of the progressive policies of the new Italian state, antagonistic to the old Catholic religious traditions. This paper intends to highlight the key aspects of the political significance that the cremation took on during the Risorgimento period, while also illustrating the methods adopted by important authors from that time period regarding incineration techniques and cremation methods.
Animal research nexus: a new approach to the connections between science, health and animal welfare (open access)
Gail Davies, Richard Gorman, Beth Greenhough, Pru Hobson-West, Robert G.W. Kirk, Reuben Message, Dmitriy Myelnikov, Alexandra Palmer, Emma Roe, Vanessa Ashall, Bentley Crudgington, Renelle McGlacken, Sara Peres, Tess Skidmore
Animals used in biological research and testing have become integrated into the trajectories of modern biomedicine, generating increased expectations for and connections between human and animal health. Animal research also remains controversial and its acceptability is contingent on a complex network of relations and assurances across science and society, which are both formally constituted through law and informal or assumed. In this paper, we propose these entanglements can be studied through an approach that understands animal research as a nexus spanning the domains of science, health and animal welfare. We introduce this argument through, first, outlining some key challenges in UK debates around animal research, and second, reviewing the way nexus concepts have been used to connect issues in environmental research. Third, we explore how existing social sciences and humanities scholarship on animal research tends to focus on different aspects of the connections between scientific research, human health and animal welfare, which we suggest can be combined in a nexus approach. In the fourth section, we introduce our collaborative research on the animal research nexus, indicating how this approach can be used to study the history, governance and changing sensibilities around UK laboratory animal research. We suggest the attention to complex connections in nexus approaches can be enriched through conversations with the social sciences and medical humanities in ways that deepen appreciation of the importance of path-dependency and contingency, inclusion and exclusion in governance and the affective dimension to research. In conclusion, we reflect on the value of nexus thinking for developing research that is interdisciplinary, interactive and reflexive in understanding how accounts of the histories and current relations of animal research have significant implications for how scientific practices, policy debates and broad social contracts around animal research are being remade today.
Exploring the conceptualisation and study of freebirthing as a historical and social phenomenon: a meta-narrative review of diverse research traditions (open access)
Gemma McKenzie, Glenn Robert, Elsa Montgomery
Freebirthing is a clandestine practice whereby women intentionally give birth without healthcare professionals (HCPs) present in countries where there are medical facilities available to assist them. Women who make this decision are frequently subjected to stigma and condemnation, yet research on the phenomenon suggests that women’s motivations are often complex. The aim of this review was to explore how freebirth has been conceptualised over time in the English-language academic and grey literature. The meta-narrative methodology employed enables a phenomenon to be understood within and between differing research traditions, as well as against its social and historical context. Our research uncovered nine research traditions (nursing, autobiographical text with birthing philosophy, midwifery, activism, medicine, sociology, law and ethics, pregnancy and birth advice, and anthropology) originating from eight countries and spanning the years 1957–2018. Most of the texts were written by women, with the majority being non-empirical. Empirical studies on freebirth were usually qualitative, although there were a small number of quantitative medical and midwifery studies; these texts often focused on women’s motivations and highlighted a range of reasons as to why a woman would decide to give birth without HCPs present. Motivations frequently related to women’s previous negative maternity experiences and the type of maternity care available, for example medicalised and hospital-based. The use of the meta-narrative methodology allowed the origins of freebirth in 1950s America to be traced to present-day empirical studies of the phenomenon. This highlighted how the subject and the publication of literature relating to freebirth are embedded within their social and historical contexts. From its very inception, freebirth aligns with the medicalisation of childbirth, the position of women in society, the provision of maternity care and the way in which women experience maternity services.
Cultivating the dispositions to connect: an exploration of therapeutic empathy
Doug Hardman, Phil Hutchinson
Empathy is a broad concept that involves the various ways in which we come to know and make connections with one another. As medical practice becomes progressively orientated towards a model of engaged partnership, empathy is increasingly important in healthcare. This is often conceived more specifically through the concept of therapeutic empathy, which has two aspects: interpersonal understanding and caring action. The question of how we make connections with one another was also central to the work of the novelist E.M. Forster. In this article we analyse Forster’s interpretation of connection—particularly in the novel Howards End—in order to explore and advance current debates on therapeutic empathy. We argue that Forster conceived of connection as a socially embedded act, reminding us that we need to consider how social structures, cultural norms and institutional constraints serve to affect interpersonal connections. From this, we develop a dispositional account of therapeutic empathy in which connection is conceived as neither an instinctive occurrence nor a process of representational inference, but a dynamic process of embodied, embedded and actively engaged enquiry. Our account also suggests that therapeutic empathy is not merely an untrainable reflex but something that can be cultivated. We thus promote two key ideas. First, that empathy should be considered as much a social as an individual phenomenon, and second that empathy training can and should be given to clinicians.
A feeling for the (micro)organism? Yeastiness, organism agnosticism and whole genome synthesis
Jane Calvert, Erika Szymanski
Synthetic biologists attempt to apply engineering principles to biological systems. This involves treating organisms as “chassis” – neutral frames into which synthetic constructs can be inserted, rather than living entities with distinctive features. Here we focus on a particularly charismatic organism – Saccharomyces cerevisiae (brewer’s yeast) – and the attempt to make a synthetic version of its genome. We argue that the “personality” of the yeast and the affective relationship scientists (and others) have to it, challenges the “organism agnosticism” of synthetic biology. This leads us to ask whether synthetic biologists have straightforwardly exploitative relationships to the organisms they work on. We connect this “feeling for the (micro)organism” to the activity of engineering whole genomes, rather than discrete genetic parts. We argue that this connection is significant because we are likely to see an escalation in attempts to synthesize complete genomes in the future, including the human genome.
The welfare state driving “me” and “we” medicine – a critical discourse analysis
Morten Deleuran Terkildsen,Viola Burau, Ulla Væggemose, Nina Konstantin Nissen
This study explored the relationship between visions of personalized medicine, for-profit companies, and state governance in the context of an ongoing discussion of “me” vs. “we” medicine. It took its empirical departure in a Scandinavian welfare state, Denmark, and a discourse analysis was conducted based on interviews, documents, webpages, and media sources from vital public and private stakeholders. The analysis demonstrated how the development of a program for personalized medicine in Denmark emerges as largely driven by the state. Although for-profit companies are involved, the Danish state governs the development of the personalized medicine program single-handedly. This results in a form of personalized medicine framed in both “me” and “we” discursive terms. The analysis revealed that the welfare state plays a dominating role and controls these discourses articulating certain ideas of “me” and “we.” When compared to other studies, these results showed how the role of welfare states may still remain potent in the development of personalized medicine, and in the case of a Scandinavian welfare state, this challenges established views of a “me” vs. “we” dichotomy.
Opening up forensic DNA phenotyping: the logics of accuracy, commonality and valuing (open access)
Forensic DNA Phenotyping (FDP) encompasses an emerging set of technologies aimed at predicting physical characteristics of unknown suspects from crime scene DNA traces. In its application FDP involves a variety of settings: research laboratories where FDP tests are developed, forensic laboratories where FDP technologies are used to analyze crime scene DNA traces, and finally the criminal investigation, where results of tests are applied towards finding suspects. In this paper I show that the practices in each of these settings work by a different set of concerns, which I articulate by adopting the notion of “logics” as developed by Annemarie Mol. I ethnographically trace FDP from research lab to investigation, identifying three different logics along the way: those of accuracy, commonality, and valuing respectively. Taken together, I show that these practices do not linearly accumulate but form a heterogeneous assemblage, adding nuance to discussions surrounding FDP.
Embodied material encounters and the ambiguous promise of biomedical futures: The case of biologically derived medicines (open access)
Mianna Meskus, Venla Oikkonen
Therapies and prophylactics using biologically derived materials such as cells, microbes or tissues are often portrayed as key to increased future health. This article investigates the material preconditions of such visions. Building on feminist new materialist approaches, it explores the embodied material encounters between biologicals administered into living bodies and the vibrant materiality of the body. We investigate embodied material encounters through two biologicals, pandemic vaccines and stem cell therapies, focusing on vaccine-associated narcolepsy during the 2009 pandemic, and adverse reactions in an experimental stem cell therapy targeting an eye disease called AMD. We propose that the concept of embodied material encounter provides an important tool for STS by making visible the constitutive situatedness of risk and promise and the multiplicity of futures in therapeutically harnessed biological processes. We argue that ethically accountable visions of biomedical futures need to be anchored in a nuanced understanding of these embodied processes.
Metrics of Inequality: The Concentration of Resources in the U.S. Biomedical Elite
Yarden Katz, Ulrich Matter
Academic scientists and research institutes are increasingly being evaluated using digital metrics, from bibliometrics to patent counts. These metrics are often framed, by science policy analysts, economists of science as well as funding agencies, as objective and universal proxies for scientific worth, potential, and productivity. In biomedical science, where there is stiff competition for grants from the National Institutes of Health (NIH), metrics are sold as a less arbitrary way to allocate funds, yet the funding context in which metrics are applied is not critically examined. Success by the metrics is in fact inextricably linked to the distribution of NIH funds, and from the 1980s to the 2000s, NIH funding has been marked by high inequality (elite investigators and institutes get the lion’s share of resources) and decreased mobility (those who start at the bottom are less likely to rise to the upper ranks). Elite investigators and institutes currently produce the bulk of prestigious publications, citations, and patents that commonly used metrics valorise. Metrics-based evaluation therefore reproduces, and potentially amplifies, existing inequalities in academic science and rich-get-richer effects.
Constituting ‘Visual Attention’: On the Mediating Role of Brain Stimulation and Brain Imaging Technologies in Neuroscientific Practice (open access)
Bas de Boer, Hedwig te Molder, Peter-Paul Verbeek
An important development within cognitive neuroscience is the use of Non-Invasive Brain Stimulation (NIBS), a technique which holds the promise of establishing causal relationships between brain processes and cognitive processes. However, NIBS does not allow researchers to observe neurophysiological processes, and must be coupled with imaging technologies such as Electroencephalography (EEG) for the visualization of neurophysiological change. Technologies such as NIBS and EEG are not neutral intermediaries between scientists and the world, but actively mediate the reality that scientists investigate. How these technologies shape the objects of neuroscientific study becomes clear when analyzing real-life conversations between neuroscientists researching visual attention. During the constitution of visual attention, neuroscientists need to manage a tension between the epistemic norms of ‘causality’ and ‘reality’, and how this tension is managed differs when different technologies are used. In the case of NIBS, the tension between reality and causality is managed in terms of the relation between experimental results obtained within the laboratory and the ‘real’ world outside of the laboratory. When NIBS and EEG are combined, neuroscientist orient to the norms of causality and reality in a different way: now, the reality of the causality obtained within scientific experiments needs to managed. This indicates that neuroscientists cannot straightforwardly assume the causal efficacy of the brain on human behavior. Instead, the coming into being of neuroscientific objects such as visual attention is both dependent on technological mediations and on how the tension between the norms of ‘causality’ and ‘reality’ is managed.
‘Bridging the Sexes’: Feelings, Professional Communities and Emotional Practices in the Spanish Intersex Clinic
Sam Fernández-Garrido, Rosa M. Medina-Domenech
Health professionals’ emotions in the Spanish Intersex Clinic (SIC) act as structures of feeling, not easily available for analysis. Then, what is their role in configuring clinical judgments and decisions regarding non-binary bodies? Non-crystallized structures of feeling emerge as shared practices by the professional community. These practices allow them to square their expectations of a de-emotionalized clinical objectivity and to relieve a distress allegedly caused by a corporeal difference, and not by a sex/gender system that has a hard time processing embodied diversities. In their emotional practices of (un)bridging the (dichotomy of) sexes in the SIC, clinicians emotionally activate (handling fear and uncertainty, showing empathy, using emotionally evocative images), and also emotionally deactivate narratives of sexual difference (using insipid terminology, overusing technical jargon, managing information mechanically, or through acts of debarring to avoid emotions). Emotional practices play a decisive role in interconnecting and shaping ways of doing (strategies, techniques, values) with entities (body, artifacts), to put into practice the knowledge systems that place the human body inside a sexual binary. To envision a language for these practices can bring awareness of the role played by emotions. More importantly, it can facilitate taking into consideration the agency of patients, including possible non binary decisions about their bodies.
The Problematic Use of Race in Facial Reconstruction
Abigail Nieves Delgado
Facial reconstructions have gained importance in museum exhibitions and in forensic sciences in recent years. These objects aim to represent faces from the past and present to elicit recognition in the public. Even though the face is a highly individual object, its reconstruction depends on the application of a number of general categories. One of the most central is race. When reconstructing a face, experts carry out a particular way of seeing – a skilled vision – that interprets visible differences in bodies as racial differences. This makes race a crucial component in the process of reconstructing a face, even though experts try to downplay its importance and rarely consider race to be biologically real. In addition, experts introduce alternative naming strategies, which nevertheless do not overcome the logic of understanding skull shapes and facial traits as markers of racial difference. These practices involve a paradox: a tension between practicing race and disavowing it. In other words, experts attempt to ‘make race absent,’ but with little success. As a consequence, the reconstruction of faces reiterates a racial perspective on human differences, as museums and forensic investigations present these race-based images to the public. Therefore, looking closer at facial reconstruction helps to understanding the complex ways that race arises in contemporary anthropology and the biosciences, as well as in public and social spheres.
Promising Potency: Bio-evangelical Networking in a Korean Stem Cell Enterprise
The notion of potency has been central in the shaping of the field of stem cell sciences. It not only offers a unique promissory quality to stem cells, but also an interpretive flexibility that can be exploited outside of the scientific research community. One Korea-based stem cell company actively exploits this aspect to amplify its promise of experimental stem cell therapy through an evangelical Christian network. The notion of stem cells’ potency is at the crux of their discursive maneuvers that portray stem cells as a ‘gift that God has prepared in our body.’ In their entrepreneurial endeavor to exploit business opportunities in evangelical Christian communities, the company strategically exploits the differences between two social worlds (that of the stem cell research community and of evangelical Christians), reflecting a process of ‘bio-evangelical networking’. The presumed religion/science divide, the grammar of miracles, the convention of religious witnessing, as well as faith in this-worldly blessings are actively sought and mobilized as a backdrop for the proliferation of stem cell promises in this religious niche. The notion of potency, once constructed, reformulated, and even fetishized in the scientific community’s effort to consolidate public support, thereby becomes a problem for the stem cell enterprise itself.
‘From Bench to Stage’: How Life Scientists’ Leisure Groups Build Collective Self-Care
Sarah Maria Schönbauer
In today’s research environments, scientists have to meet competitive demands in order to pursue a career successfully. Such demands are tangible including the need to move abroad, publish, or win third-party grants. Simultaneously, researchers experience an increasingly individualized and competitive work environment and a lack of collective working relationships. Many scientists in academia have difficulty coping with these demands. There is a need for spaces that allow scientists to cope with today’s work life challenges. Two leisure groups on an Austrian science campus – a theatre and an orchestra group – are examples of spaces enabling practices to cope with the demands of academia. By acting and playing music, scientists can relate work and leisure. Through their participation, the scientists not only make room for leisure time in their work life but also construct a professional ideal of a creative and communally oriented scientist and establish a feeling of belonging to a place and its shared history. By aligning work and leisure outside of the laboratory, the leisure group members cope with their individualized and competitive work environment. Thereby, the scientists compensate for the lack of social and creative interaction and build a communally oriented, non-hierarchical, and a creative space in academia.
This issue of Science in Context features two articles that engage with the legacy of Emil du Bois-Reymond, a German physician physiologist considered to be the founder of modern electrophysiology.
Reconsidering the ignorabimus: du Bois-Reymond and the hard problem of consciousness
In this paper I present an interpretation of du Bois-Reymond’s thesis on the impossibility of a scientific explanation of consciousness and of its present importance. I reconsider du Bois-Reymond’s speech “On the limits of natural science” (1872) in the context of nineteenth-century German philosophy and neurophysiology, pointing out connections and analogies with contemporary arguments on the “hard problem of consciousness.” Du Bois-Reymond’s position turns out to be grounded on an epistemological argument and characterized by a metaphysical skepticism, motivated by the unfruitful speculative tendency of contemporary German philosophy and natural science. In the final sections, I show how contemporary research can benefit from a reconsideration of this position and its context of emergence, which is a good vantage point to trace open problems in consciousness studies back to their historical development.
Physiology and philhellenism in the late nineteenth century: The self-fashioning of Emil du Bois-Reymond (open access)
Lea Beiermann, Elisabeth Wesseling
Nineteenth-century Prussia was deeply entrenched in philhellenism, which affected the ideological framework of its public institutions. At Berlin’s Friedrich Wilhelm University, philhellenism provided the rationale for a persistent elevation of the humanities over the burgeoning experimental life sciences. Despite this outspoken hierarchy, professor of physiology Emil du Bois-Reymond eventually managed to increase the prestige of his discipline considerably. We argue that du Bois-Reymond’s use of philhellenic repertoires in his expositions on physiology for the educated German public contributed to the rise of physiology as a renowned scientific discipline. Du Bois-Reymond’s rhetorical strategies helped to disassociate experimental physiology from clinical medicine, legitimize experimental practices, and associate the emerging discipline with the more esteemed humanities and theoretical sciences. His appropriation of philhellenic rhetoric thus spurred the late nineteenth-century change in disciplinary hierarchies and helped to pave the way for the current hegemonic position of the life sciences.
From ‘Vilest Beverage’ to ‘Universal Medicine’: Drinking Water in Printed Regimens and Health Guides, 1450–1750
Historians tend to assume that in pre-modern Europe people avoided the water, as too unsafe, risky and generally unhealthy to drink. This assumption is clearly flawed: early modern Europeans knew, through experience, which waters were ‘best’ and to take certain precautions when it came to the consumption of water. Town councils enacted legislation to ensure water quality as well as more pro-active measures to keep water sources clean. Extensive and expensive water works in many larger towns and the presence of water-carriers suggests a demand for drinking water. And yet the history of both water control measures and drinking practices before the onslaught of Asian cholera and the bacteriological revolution in the nineteenth century have yet to be written.
As a contribution towards filling this gap, this study seeks to understand the radically changing nature of medical advice on water consumption between 1450 and 1750, and what it can tell us about the place of water in early modern society. To do this, we consider printed dietary regimens and guides to good health and long life, a successful, varied and changing genre. They offer privileged access to the circulation of knowledge regarding water, in the context of the everyday regulation of food and drink in the maintenance of health. We explain why water went from being considered ‘the vilest of beverages’ in the mid-fifteenth century, the consumption of which, though necessary, had to be carefully regulated, to a ‘universal medicine’ three hundred years later, able to prevent and cure disease. In the process, wine gave way to water as the preferred healthy drink—at least, for medical authors. We relate the medical advice to the different local conditions (such as river water quality), practices (use of cisterns, boiling or filtering) and fashions (cold-drinking) discussed in the medical literature. If water’s very banality means that it is often invisible in the written evidence, the regimens provide ample evidence of the importance of drinking water and of changing attitudes and practices over the course of the early modern period.
Medical Marvels and Professional Medicine: Establishing Scientific Authority in Enlightenment France
Angela C. Haas
This article examines the investigation of medical marvels—principally reported cases of human bodies that could spontaneously produce rocks, needles, animals or other objects—in Enlightenment France. It argues that published accounts of these investigations served both a pedagogical and propagandistic purpose as they highlighted the benevolence, extensive knowledge, and sceptical approach of the ideal medical practitioner. At a time when medical knowledge was often challenged and the medical community remained insecure about its ability to cure diseases, these accounts provided crucial evidence that medicine was a useful and reliable science. This article examines a critical moment in the professionalisation of medicine when elite physicians in Paris were able to exploit a growing antipathy for the marvellous in order to prove the utility and reliability of medical knowledge, while inextricably linking medical practice with rationalism, scientific reasoning and the Enlightenment campaign against superstition.
The Colic of Madrid (1788–1814): Experts, Poisons, Politics, and War at the End of the Ancien Régime in Spain
José Ramón Bertomeu-Sánchez
This paper explores the management of health hazards caused by the use of lead compounds in food vessels. My focus is on the regulations promulgated in 1801 in Spain. The main protagonists of the paper are late eighteenth-century members of the Madrid Academy of Medicine interested in public health issues, chemists with contrasting views on the regulation of toxic hazards, enlightened artisans with particular ways of knowing and doing, and French military surgeons involved in the long-term controversy concerning the causes and remedies of what was known as the ‘colic of Madrid’. Many general issues regarding the regulation of toxic risks are discussed: the disputed fields of expertise, the changing social anxieties, the diverse agency of the stakeholders and decision makers, the technologies for identifying poisons and for assessing their effects, and the persistent tensions and conflicts inside the various professional and academic groups.
Bonds of Kinship and Care: RAMC Photographic Albums and the Making of ‘Other’ Domestic Lives
This article critically interrogates the nature of facial wounds themselves, their visceral, dehumanising quality, visibility, and social meaning. Little attention has been paid to the cultural ramifications and difficult questions concerning the futures of facially injured soldiers that Britain had to address in the post-war era. Focusing on photograph albums as socially salient objects, this article challenges medical photographic archives. Building on unexplored family archives, it revises understandings of the difficulties of veterans’ homecoming, and how they achieved a level of emotional recovery as they tried to find a place in the post-war social fabric. The article argues that family photographic collections show the less obvious way that the war lived on for veterans and families, its damage and how it was passed on. These private collections offer new revelations on the success or failure of the surgical interventions in their aesthetic aims.
‘These Curly-Bearded, Olive-Skinned Warriors’: Medicine, Prosthetics, Rehabilitation and the Disabled Sepoy in the First World War, 1914–1920
The sepoy had always been a central figure in colonial governance and policing and had played important roles in both world wars. Focusing on World War I, this article explores the sepoys’ corporeal experience of the war through their own letters. The article explores how the war had a catalytic impact on colonial perceptions of and responses to disability in the colony and how medicine, prosthetics and rehabilitation came to be seen as the ‘promise’ made by the Crown to Indian soldiers for their service. The article also examines the introduction of cultures and institutions of rehabilitation into the colony in the form of the Queen Mary Technical Institute and explores the intersections of race, empire and disability at these sites of rehabilitation.
Local Actions, National Policies and International Knowledge: Family Planning and Statistical Practices in Taiwan (1949–1980s)
Using an approach based on the sociology of quantification, this article illustrates how actors utilised statistics when importing family planning to Taiwan and exporting their experience to international policy makers. The functions of statistics—producing knowledge and making policies—assisted the implementation of international programmes in Taiwan, where any actions leading to a population decrease were prohibited in the 1950s. The Population Council and Taiwanese officials first secured the provincial government’s tacit consent by claiming the programme to be an experiment in general population policy rather than one focused on the insertion of intra-uterine devices (IUDs). They went on to win the central government’s endorsement in 1964 by presenting IUD insertions as tools for achieving the ideal population size for economic development. Finally, experts packaged and repackaged the Taiwan programme as a success by wielding locally-collected statistics, reframing the programme to fit the conclusions of international research at the time.
Standardising Defence Lines: William Perrin Norris, Eugenics and Australian Border Control
Jennifer S. Kain
This article investigates the policy and practice of Australia’s so-called ‘eugenic phase’ of border control embedded within the 1912 Immigration Act. It highlights the efforts of the first London-based Commonwealth Medical Officer – Dr William Perrin Norris – who designed a medical bureaucratic system intended to keep ‘defectives’ out of Australia. Norris’ vision is revealed to be befitting of his character, experience, and a passion for uniformity which went beyond his legal jurisdiction. In examining the associated political debates, procedural instructions and the practicalities of the legislation, this article advances a more nuanced historical understanding of this period of Australian border control, and traces the evolution of the idiot and insane prohibited immigrant clause in the first quarter of the twentieth century.
Curare: The Poisoned Arrow that Entered the Laboratory and Sparked a Moral Debate
Curare, a paralysing poison derived from South American plants, fascinated European explorers with its deadly powers. Generations of travellers were perplexed by how animals affected by curare showed no signs of suffering. British experimenters relabelled curare as an anaesthetic and used it to restrain animals during experiments. But during the 19th century, doubts started to appear: can a paralysed animal feel pain but be unable to express it? A scientific dispute emerged as not all British physiologists accepted Claude Bernard’s claim that curare affected only the motor nerves. The scientific controversy over curare reached the British parliament, and the Cruelty to Animals Act (1876) stated that curare would not be considered an anaesthetic. Nevertheless, antivivisection advocates continued to contest its use for decades. The article reveals new aspects of colonial import of bioactive plants in a case that reshaped the production of medical knowledge and presented epistemological and moral challenges.
‘These Are the Medicines That “Make” Monsters’: Thalidomide in Southern Africa, 1958–1962
Julie Parle, Ludger Wimmelbücker
Thalidomide is amongst the most notorious drugs of all time. The majority of accounts of its distribution to the early 1960s focus on those countries where thalidomide caused the most extensive damage, most notably in economically developed countries. This article raises, however, questions about intended, explored, initiated or sometimes thwarted markets for thalidomide-containing preparations outside ‘the West’. It does so by focusing on Southern African markets for thalidomide, particularly those in Angola, Mozambique, (now) Zimbabwe, Namibia and South Africa. We place differences in the drug’s distribution channels in the context of the political economies of pharmaceuticals markets in the region in the decades after World War 2 and argue that colonial legacies and circuits of commerce can contribute to an understanding of why some regions ‘escaped a thalidomide disaster’. Finally, from late 1961 through 1962, we chart Southern African attempts to establish, or deny, the local presence of the teratogen.
Where is the Hoechst Insulin?: The Role of Diabetics and Their Doctors as Consumers During the German Democratic Republic’s Autarkic Policy of ‘Making Free From Disturbance’, 1961–1966 (open access)
Kathrin A. Hiepko
This article examines the treatment of the chronic disease, diabetes mellitus, during and immediately after the German Democratic Republic (GDR)’s autarkic policy of Störfreimachung, literally translated as ‘making free from disturbance’. I look specifically at an insulin favoured by East German diabetes specialists and their patients delivered from the West German pharmaceutical company, Hoechst AG, and the consequences of preventing this insulin from being imported. By using insulin as a case study, a medication necessary for the survival of insulin-dependent diabetics, the article offers a close analysis of the complex relationship between ordinary citizens, medical professionals and the ruling Socialist Unity Party (SED) following the building of the Berlin Wall. I argue that the intense focus on the issue of consumption in the competition between the GDR and West Germany shaped both the attitude of the SED and those responding to the policy of Störfreimachung. The SED regime and leading health officials espoused a highly ‘productionist’ medical ethos that was somewhat at odds with their growing desire to meet increasing consumer demands. This collision opened up ideological contradictions, which provided an opportunity for those on the receiving end of the policy to discredit it, and, by extension, justify the continued use of their preferred choice of insulin from Hoechst. I draw, in particular, on patient Eingaben (petitions) and reports by district diabetologists in order to uncover this trend.
‘Problems of Today and Tomorrow’: Prevention and the National Health Service in the 1970s (open access)
A consensus developed around prevention in the early 1970s as a response to epidemiological studies that had highlighted smoking, diet and physical inactivity as risk factors for chronic disease, especially heart disease. This reaction was catalysed by the financial pressures the National Health Service (NHS) was experiencing, the 1974 reorganisation of the service and international awareness of the Lalonde report. Such widespread interest resulted in three different but contemporaneous reports on prevention in 1976 and 1977. All three emphasised, to varying degrees, personal responsibility and lifestyle as important tenets of prevention. This article focuses on Prevention and Health: Everybody’s Business, a 1976 discussion paper published by the four governments of the UK, to explore this preoccupation with disease prevention throughout the decade, and what it reveals about public health in Britain, political attitudes to the NHS and the changing relationship between citizenship and the welfare state.
Fighting an Epidemic in Political Context: Thirty-Five Years of HIV/AIDS Policy Making in the United States
Tasleem J. Padamsee
The history of US government action on HIV/AIDS offers important lessons concerning the limits and possibilities of US public health policy. Yet only the first decade of this history has previously been well-documented. This article updates the history by constructing a macro-level account of policies that have been considered and implemented, along with the discourses and debates that have shaped them. This account is generated through systematic study of many dozens of policy making moments, drawing on >70 original interviews, >20,000 daily news reports and hundreds of contemporaneous policy documents. The paper chronicles HIV/AIDS policy from the initial years when the federal government resisted addressing the crisis; through subsequent periods shaped by alternating Republican and Democratic administrations; to contemporary policy making in an era when broader health policy transitions offer hope of normalized treatment and coverage for people with HIV, and scientific innovations offer the possibility of ending HIV/AIDS itself. It also illuminates how national HIV/AIDS policy is not only a series of responses to the concrete challenges of a health crisis, but also a malleable political product and a resource used to wage broader social and ideological battles.
Homo adhaerens: Risk and adherence in biomedical HIV prevention research
After the turn of the millennium, HIV clinical researchers pivoted from developing and testing new antiretrovirals (ARVs) for treatment, to reconfiguring the same molecules for pre-exposure prophylaxis (PrEP). In 2012, Truvada became the first HIV therapy to also be approved by the FDA for PrEP, regarded as a magic bullet that promised to end the epidemic. However, six years after its approval, it continues to be inaccessible to those who are most vulnerable. In this article, I critically analyze HIV PrEP clinical trials, dissecting the novel techniques researchers use to demonstrate efficacy. I argue that in making sense of the interplay between adherence to a prophylactic regimen and risk for HIV, biomedical HIV prevention research has revealed a new subject of biopolitics, Homo adhaerens. In the early 2000s, clinical researchers operating in the Global South identified Homo adhaerens as the ideal subject, one who embodies both high-risk behavior and diligent adherence to a daily oral regimen. I trace the construction of Homo adhaerens to the United States, where I listen closely to activists engaged with the ongoing DISCOVER trial of PrEP. Activists either aspire for Homo adhaerens as a standard, making the liberal argument that expanding access could make PrEP successful, or they rebuke the framework of clinical research that produces narrow understandings of adherence, efficacy, and universality. Ultimately, I argue that by failing to grapple with the social realities that underlie poor adherence, PrEP clinical trials produce knowledge that is not useful for those who are most vulnerable.
Making and managing medical anomalies: Exploring the classification of ‘medically unexplained symptoms’ (open access)
Erik Børve Rasmussen
This article explores the making and management of anomaly in scientific work, taking ‘medically unexplained symptoms’ (MUS) as its case. MUS is a category used to characterize health conditions that are widely held to be ambiguous, in terms of their nature, causes and treatment. It has been suggested that MUS is a ‘wastebasket diagnosis’. However, although a powerful metaphor, it does neither the category nor the profession justice: Unlike waste in a wastebasket, unexplained symptoms are not discarded but contained, not ejected but managed. Rather than a ‘wastebasket’, I propose that we instead think about it as a ‘junk drawer’. A junk drawer is an ordering device whose function is the containment of things we want to keep but have nowhere else to put. Based on a critical document analysis of the research literature on MUS (107 research articles from 10 medical journals, published 2001–2016), the article explores how the MUS category is constituted and managed as a junk drawer in medical science.
Routine exposure: social practices and environmental health risks in the home
Rachael Wakefield-Rann, Dena Fam & Susan Stewart
The post-war introduction of new chemicals to consumer products created a range of complex environmental health issues. Despite recent evidence demonstrating the issues associated with using particular chemicals in the home, responses from industry and regulators have failed to account for the complex ways that chemicals interact with each other, humans and microorganisms to cause harm. This paper draws together the scientific and social science literature to make two key contributions: first, it demonstrates why investigating everyday practices will be crucial to improve knowledge of how human/environment interactions in the home are contributing to certain health conditions; second, it draws on examples of Endocrine Disrupting Chemicals to show how these health conditions cannot be addressed by replacing individual products, or chemicals, as many toxic ingredients have become central to the functionality of interdependent networks of products, and the routines they enable. By failing to engage with these issues, future research and planning to establish healthy homes will not be able to account for these crucial sources of harm. We conclude that further research addressing indoor environmental health should expand the boundaries of inquiry across disciplines and knowledge perspectives to analyse how social practices structure micro-scale interactions between humans, microbes and chemicals, in the home.
Creating health care consumers: The negotiation of un/official payments, power and trust in Russian maternity care
Anna Temkina, Michele Rivkin-Fish
Over the last three decades, the Soviet model of universal, free health care has shifted to a mix of public, private, and semi-private services influenced by neoliberal ideology. These changes have been particularly palpable in the emergence of new consumer relationships between health care users and providers. Examining St. Petersburg childbirth services from the early 1990s to the present, this paper examines the gradual development of consumer subjectivities and their impacts on authority, trust, and domination in Russian health care relations. We trace three processes: (1) women’s emerging uses of monetary payments for care in both unofficial transactions (“in the doctor’s pocket”) and through official channels (“at the cashier”), as symbolic expressions of new consumerist subjectivities; (2) hospitals’ transformation of unofficial, personalized health care relations into officially paid consumer relations; and (3) the partial transformation of providers’ power, authority, and domination through consumer relationships with patients. We argue that Russian childbirth services illuminate the ways consumer relations address particular problems of Soviet health care while remaining a severely limited means of empowerment for patients and providers.
State and the sick role: a study of sick models in the pre-reform China
This study revisited the sick role theory and proposed that the doctor–patient dyadic system be expanded to include state as a major actor to extend the applicability of the theory to other political systems. I argue that state not only exercises coercive power in the social control mechanism, but also practices persuasion in the socialisation mechanism. Drawing on evidence from China, the paper notes that the establishment of the state medicine in the 1950s and 1960s significantly changed illness behavioural patterns of the people covered by public health insurances. To counteract abuse of health insurance and secondary gains, the Chinese Party-state propagated official sick role expectations and norms through sick models—sick persons who thought and behaved as the Party-state expected. Two types of sick models were identified: the cooperative and the ‘defiant’. These models were propagated to serve the Party-state’s political and economic agenda.
Linked fate and mental health among African Americans
Ellis P. Monk, Jr.
Linked fate, the feeling that what happens to one’s group may indelibly shape one’s own life, is variously conceptualized as an aspect of ethnoracial identity, expression of political solidarity, and/or sense of ethnoracial consciousness. In this study, I contend that, within the context of stigmatization, linked fate may also be compellingly conceptualized as an expression of collective threat and vulnerability with potential relevance for the mental health of African Americans, in particular. Nevertheless, existing research on race and mental health has remained silent on this issue, as linked fate has received little scholarly attention from researchers interested in mental health. Building on prior research on ethnoracial identity, stigmatization, and mental health among African Americans, I introduce linked fate as a neglected, yet important phenomenon among stigmatized minorities, which is deeply associated with ethnoracial identification and should also be considered when examining the consequences of ethnoracial identification on the mental health of African Americans. Using nationally-representative data and logistic regression, I find that linked fate not only fails to be health-protective but is significantly associated with poorer mental health among African Americans in the form of increased suffering from major depression, bipolar I, and anxiety disorders.
One last round of chemo? Insights from conversations between oncologists and lung cancer patients about prognosis and treatment decisions
Amalie M. Hauge
One more chemo or one too many? The increasing use of expensive cancer treatments close to the patient’s death is often explained by oncologists’ failure to communicate to patients how close to dying they are, implying that patients are often both ill-prepared and over-treated when they die. This article aims at interrogating the politically charged task of prognosticating. Drawing on an ethnographic study of conversations between oncologists and patients with metastatic lung cancer in a Danish oncology clinic, I show that oncologists utilize, rather than avoid, prognostication in their negotiations with patients about treatment withdrawal. The study informs the emerging sociology of prognosis in three ways: First, prognostication is not only about foreseeing and foretelling, but also about shaping the patient’s process of dying. Second, oncologists prognosticate differently depending on the level of certainty about the patient’s trajectory. To unfold these differences, the article provides a terminology that distinguishes between four ‘modes of prognostication’, namely hinting, informing, calibrating and organizing. Third, prognosticating can unfold over time through multiple consultations, emphasizing the relevance of adopting methodologies enabling the study of prognosticating over time.
Health care, overconsumption and uneconomic growth: A conceptual framework (open access)
Martin Hensher, Ben Canny, Craig Zimitat, Julie Campbell, Andrew Palmer
Concerns have grown in recent decades that economic growth in many rich countries may, in fact, be uneconomic. Uneconomic growth occurs when expansion in economic activity causes environmental and social costs that are greater than the benefits of that additional activity. Health care has enjoyed a close historical relationship with economic growth, with health care spending consistently growing faster than GDP over the long term. This paper explores the possible relationship between health care and uneconomic growth. It summarises the rapidly growing evidence on the harms caused by poor quality health care and by the overuse of health care, and on the environmental harms caused by health care systems. Further, it develops a conceptual framework for considering the overconsumption of health care and the joint harms to human health and the natural environment that ensue. This framework illustrates how health-damaging overconsumption in the wider economy combines with unnecessary or low-quality health care to create a cycle of “failure demand” and defensive expenditure on health care services. Health care therefore provides important sectoral insights on the phenomenon of uneconomic growth. There are rich opportunities for interdisciplinary research to quantify the joint harms of overconsumption in health and health care, and to estimate the optimal scale of the health sector from novel perspectives that prioritise human and planetary health and well-being over GDP and profit.
Medical pluralism, Pentecostal healing and contests over healing power in Papua New Guinea
Richard Eves, Angela Kelly-Hanku
This paper is based on long-term ethnographic fieldwork among the Lelet of New Ireland Province, Papua New Guinea. It draws on qualitative interviews with Pentecostal Christians intended to examine their understanding of Christianity and how this relates to their cultural practices – in this case, how their Pentecostalism affects their therapeutic beliefs and practices. The frequent observation that therapeutic repertoires are becoming less discrete is substantiated by the Lelet case, for in their search for therapy, the Lelet often cross the borders of different repertoires, seeing no contradiction, for example, between combining a vernacular therapy with biomedicine. With the advent of Pentecostalism, the issue has become far more complex. The Lelet therapeutic culture remains pluralist, but the research shows that Lelet Pentecostals are increasingly viewing their own Christian-based forms of healing as in competition with other therapies, especially vernacular therapies. This competitive outlook has brought a demonization of vernacular therapies, which are labelled ‘satanic’ and their use discouraged. In fact, Pentecostalism is refashioning the realm of therapy: rather than border crossing and mixing of therapeutic repertoires, the situation is increasingly dominated by notions of mutual exclusivity. In order to comprehend the full complexity of medical pluralism, it is now necessary not only to examine how the borders of the different therapeutic repertoires are blurred, destabilized or reconfigured but also how they may be demarcated and policed. In other words, we argue that medical pluralism is being eroded by its interaction with Pentecostalism.
Contamination, suffering and womanhood: Lay explanations of breast cancer in Central Vietnam
Trang Thu Do, Andrea Whittaker
Breast cancer has become the most frequent cancer among women in Vietnam, claiming over 6000 lives a year. In this article we investigate how laypeople explain the causes of this pressing health issue based on an ethnographic study conducted in the Central region of Vietnam in 2019, including hospital observation, interviews with 33 breast cancer patients and focus groups with 21 laypeople. Our findings show that their knowledge of causation is mediated through historical social contexts of warfare, a rapacious market economy, poverty, and cultural configurations of gender roles. Contamination of the environment and food, use of chemicals, failure to follow postpartum practices, breast ailments, and worry are understood to be immediate determinants of breast cancer. These popular accounts are unlikely to recognize biomedical narratives of breast cancer risk that focus upon individual responsibility and lifestyle factors because they may not reflect the lived realities of women. We emphasise the implications for public awareness campaigns to meaningfully engage with the situated social and cultural specificities of breast cancer.
Innovation, professional identity, and generational divides in medicine: The case of gynecologic laparoscopy in the USA
James R. Zetka, Jr.
Studies have linked the diffusion of medical innovations to a distinctive professional project. In this project, physician specialists embrace an innovation, work to advance its successes, link these successes to their core-skill definitions, and use this linkage in boundary work to promote their professional identities and expand their jurisdictions, largely by distinguishing themselves from others within their profession. Drawing from a case study examining the diffusion of laparoscopic sterilization procedures in American ob/gyn, this article suggests that a specific type of revitalization movement may serve as an unwitting catalyst for these innovation/professional projects. To promote a “new” specialist identity, this revitalization movement employs foil labeling in its boundary work that dishonors, not outsiders, but established clinicians within the specialty. This dishonoring motivates these clinicians, as a generational cohort, to embrace radical innovations and break established work patterns. Radical innovations may spread across medical fields, not so much through projects bonding professionals to a unified collective, but through reactive projects within highly specialized fields prone to fragment along generational lines.
Negotiating the practical ethics of ‘self-tracking’ in intimate relationships: Looking for care in healthy living
Catherine M. Will, Flis Henwood, Kate Weiner, Rosalind Williams
In this paper, we offer insights into practices of tracking as part of healthy living through talk about home blood pressure and weight from adults living in the UK. Drawing on theoretical resources from feminist ethics of care and Science and Technology Studies on care as socio-material practice, we build on interest in the relational dimensions of tracking and the potential for intimate surveillance and care using monitoring technologies. Our cases offer not only new perspectives in a field that has often focused on fitness tracking but also help go beyond a narrow focus on surveillance, showing how surveillance and care may be intertwined in the everyday negotiation of health-related tracking and other ‘health practices’ in family life. Using the diversity in our relatively large sample, and reflecting on the different types of interview completed, we highlight the varied ways in which adults engage with tracking blood pressure and weight (or body mass index) in the context of established relationships. The combination of attentiveness and appeals to responsibility for maintaining health as something owed to a partner can make tracking a very ethically sensitive area. In this paper we emphasise that reciprocity is one important way in which couples make tracking feel more like care. Tracking together or discussing it can take couples in this direction even if the actual practice remains somewhat difficult. On the other hand, responsiveness to someone else’s feelings, including a desire to avoid the topic altogether, or avoid weight as a specific parameter, might all help move towards more caring tracking. We therefore develop a more sustained account of care in relation to tracking than in previous work, and a novel account of tracking as a (potential) care practice between adult partners.
What it means to say “I Don’t have any money to buy health insurance” in rural Vietnam: How anticipatory activities shape health insurance enrollment (open access)
In lieu of an abstract, here are excerpts from the article’s introduction:
Health insurance has become a primary tool for achieving universal health coverage (UHC). With technical and financial support from major development organizations, UHC initiatives have launched across the globe. A major challenge has been the enrollment of informal sector workers, who dominate the labor markets of low- to middle-income countries […]. This study closely analyzes one frequently cited reason for being uninsured: not having money to pay for insurance. Iterations of the phrase “I don’t have any money” are pervasive in research on the determinants of health insurance enrollment and are often analyzed as problems of affordability, high pricing, or lacking the ability to pay […].
Although the phrase cuts across many country borders, its meaning is not universal. I argue that among informal sector workers in Vietnam, the response of “I don’t have any money” is not merely about the financial cost of an insurance card; rather, the reference to money signals what I call “anticipatory activities.” Anticipation involves imagining how and when something will happen—or might happen. Anticipatory activities are the projects people undertake in the service of a projected future.
By bringing attention to how anticipation is articulated in financial and health practices, I show how informal workers view the decision to remain uninsured as morally worthwhile.