On difference and doubt as tools for critical engagement with public health
Catherine M. Will
This paper argues that critical public health should reengage with public health as practice by drawing on versions of Science and Technology Studies (STS) that ‘de-centre the human’ and by seeking alternative forms of critique to work inspired by Foucault. Based on close reading of work by Annemarie Mol, John Law, Vicky Singleton and others, I demonstrate that these authors pursue a conversation with Foucault but suggest new approaches to studying contemporary public health work in different settings. Proposing that we ‘doubt’ both the unity of public health and its effects, I argue that this version of STS opens up a space to recognise multiplicity; to avoid idealising what is being criticised; and to celebrate or care for public health practices as part of critique. Finally I oppose the view that considering technologies, materials and microbes leads to micro-level analysis or political neutrality, and suggest that it allows us to reframe studies of public health to account for inequalities and to draw attention to weak or retreating states, active markets and the entangled relations of humans and non-humans across the world.
Biopolitical precarity in the permeable body: the social lives of people, viruses and their medicines
This article is based on multi-sited ethnography that traced a dynamic network of actors (activists, policy-makers, health care systems, pharmaceutical companies) and actants (viruses and medicines) that shaped South African women’s access to, and embodiment of, antiretroviral therapies (ARVs). Using actor network theory and post-humanist performativity as conceptual tools, the article explores how bodies become the meeting place for HIV and ARVs, or non-human actants. The findings centre around two linked sets of narratives that draw the focus out from the body to situate the body in relation to South Africa’s shifting biopolitical landscape. The first set of narratives articulate how people perceive the intra-action of HIV and ARVs in their sustained vitality. The second set of narratives articulate the complex embodiment of these actants as a form biopolitical precarity. These narratives flow into each other and do not represent a totalising view of the effects of HIV and ARVs in the lives of the people with whom I worked. The positive effects of ARVs (as unequivocally essential for sustaining life) were implicit and the precarious vitality of the people in this ethnography was fundamental. However, a related and emergent set of struggles become salient during the study that complicate a view of ARVs as a ‘technofix’. These emergent struggles were biopolitical, and they related first to the intra-action of HIV and ARVs ‘within’ the body; and second, to the ‘outside’ socio-economic context in which people’s bodies were situated.
Beyond the person: the construction and transformation of blood as a resource
Rebecca Lynch and Simon Cohn
Many studies of blood donation have looked at the motives of donors, their relationship with the wider society and corresponding values such as gift-giving, altruism and responsibility. These underpin a rhetorical representation of person-to-person donation that neglects the many technical processes that take place between donation and eventual use and the material nature of blood itself. This ethnographic study, conducted in four UK blood donation sites, describes the various practices involved in routine sessions, rather than the motives or values or donors or staff. It focuses on the procedures and equipment that not only ensures blood is collected safely and efficiently, but the extent to which they determine the nature of the collected blood itself. Taking our cue from posthuman approaches, we argue donated blood as something that is ‘made’ only when it leaves the body; in other words, it is not simply extracted, but is constructed through specific practices. We illustrate how, as blood is separated from the body, it is increasingly depersonalised and reconstituted in order to have biomedical value. In this way, rather than reproducing the essentialist claim that blood is what social scientists often described as a ‘special kind of substance’, we point to the ways in which donated blood alters as it moves in time and space. We argue that such transformations occur in both symbolic and material realms, such that the capacity of blood to have both cultural meaning and clinical value is dependent on the fact that it is never stable or singular.
Narrating the Future: Population Aging and the Demographic Imaginary in Thailand
Middle-aged, working- and middle-class people in urban Northern Thailand are using demographic categories to imagine their future identities as ‘senior citizens’. I here introduce the term demographic imaginary to provide a conceptual framework for understanding how characterizations of the population at large are constructed, take hold, and shape group identification. More than simply justification for study and action, demographic categories and prognoses are key components of the social world made visible in narratives at the micro- and macro-social levels. With careful ethnographic attention to the stories people tell and those they refuse, I argue a synchronic future is at play in the present, underscoring the importance of narratives about the future for the lived experience of today
Markets and Molecules: A Pharmaceutical Primer from the South
The Indian pharmaceutical industry has historically manufactured low-cost drugs for the global poor. Activist mobilizations at the height of the HIV/AIDS epidemic revealed a vast cost gap between global brands and Indian generics, much to the embarrassment of Euro-American corporations that were in the habit of pricing drugs for only the wealthy or well insured. As new drug access controversies focus on anticancer therapies, they reveal new flows of international capital, emergent genetic technologies, and increasingly coercive trade regimes. Together these favor multinational corporate oligopolies, which imperil the legacy of HIV/AIDS activism and the future availability of essential life-saving drugs for the work of global public health. In this essay, I describe how the future of the right to drug access rests uneasily, and potentially calamitously, on a shifting balance of power between global south interests and Euro-American pharmaceutical capital.
Neoliberal Optimism: Applying Market Techniques to Global Health
Global health and neoliberalism are becoming increasingly intertwined as organizations utilize markets and profit motives to solve the traditional problems of poverty and population health. I use field work conducted over 14 months in a global health technology company to explore how the promise of neoliberalism re-envisions humanitarian efforts. In this company’s vaccine refrigerator project, staff members expect their investors and their market to allow them to achieve scale and develop accountability to their users in developing countries. However, the translation of neoliberal techniques to the global health sphere falls short of the ideal, as profits are meager and purchasing power remains with donor organizations. The continued optimism in market principles amidst such a non-ideal market reveals the tenacious ideological commitment to neoliberalism in these global health projects.
Pathogenic Policy: Immigrant Policing, Fear, and Parallel Medical Systems in the US South
Medical anthropology has a vital role in identifying health-related impacts of policy. In the United States, increasingly harsh immigration policies have formed a multilayered immigrant policing regime comprising state and federal laws and local police practices, the effects of which demand ethnographic attention. In this article, I draw from ethnographic fieldwork in Atlanta, Georgia, to examine the biopolitics of immigrant policing. I underscore how immigrant policing directly impacts undocumented immigrants’ health by producing a type of fear based governance that alters immigrants’ health behaviors and sites for seeking health services. Ethnographic data further point to how immigrant policing sustains a need for an unequal, parallel medical system, reflecting broader social inequalities impacting vulnerable populations. Moreover, by focusing on immigrant policing, I demonstrate the analytical utility in examining the biopolitics of fear, which can reveal individual experiences and structural influents of health-related vulnerability.
“A Body Like a Baby”: Social Self-Care among Older People with Chronic HIV in Mombasa
Josien de Klerk and Eileen Moyer
As part of the chronic disease paradigm now widely used for HIV in sub-Saharan Africa, antiretroviral treatment programs emphasize self-care. In the informal settlements of Mombasa, Kenya, the management of stress—associated with economic precariousness—plays a significant role in self-care practices and ideologies. Based on ethnographic fieldwork, we examine how local narratives of stress and self-care intertwine with social responsibilities of older HIV-positive people. For older Mombassans, living with ‘chronic’ HIV means living with an unpredictable body, which affects how they are able to care for their kin. The physical reality of living with HIV thus shapes relational networks, making self-care a social practice. While, for some self-care entails managing the body so that its needs are hidden from loved ones, a kind of ‘protective secrecy,’ others enlist the support of their children and grandchildren in managing their body, and in that process subtly redefine generational expectations and responsibilities.
Assisted Suicide as a Remedy for Suffering? The End-of-Life Preferences of British “Suicide Tourists”
The highly charged debate about the moral status of assisted suicide features regularly in the news media in medically advanced countries. In the United Kingdom, the debate has been dominated in recent years by a new mode of death: assisted suicide in Switzerland, so-called suicide tourism. Drawing on in-depth interviews with people who were actively planning on ‘going to Switzerland,’ alongside participant-observation at a do-it-yourself self-deliverance workshop, I discuss how participants arrived at their decision to seek professionalized assistance. In doing so, I explore the constituent elements of people’s suffering, examining how participants justified, rationalized, or sought authentication from a doctor for their decision to die in light of their own belief systems and aesthetic preferences for a good death.
Sensing the Airs: The Cultural Context for Breathing and Breathlessness in Uruguay
The sensory experience of breathing, particularly the sensation of breathlessness in the case of chronic obstructive pulmonary disease (COPD), is a rich though understudied topic in medical anthropology. Fieldwork in Uruguay made it clear to me that to study the sensorial experience of breathlessness, I would also have to study the widely shared cultural conceptualizations and practices surrounding air, breath, and health. In this article, I illustrate ethnographically how the experience of breathing and breathlessness is closely tied to perceptions of air outside the body – in particular humidity, temperature change, wind, and contamination. In conceptualizing breath as the mechanism and air the medium for environmental embodiment, I bring together sensorial medical anthropology, anthropology of the body, and the anthropology of wind and climate. My findings, in light of similar findings across contexts, suggest that a body transformed by COPD is hyperperceptive and hypersensitive to changes in air.
Medicine Anthropology Theory (open access)
Lost in translation?: On collaboration between anthropology and epidemiology
Denielle Elliott and Timothy K. Thomas
This rather unorthodox essay is a dialogue between an anthropologist and an epidemiologist, both of whom were involved with a large-scale collaborative ethnographic project exploring medical field studies, or ‘trial communities’, in western Kenya. Reflecting on their involvement with this project, the authors consider the pragmatics of what ‘collaboration’ represents in different disciplines and how it is enacted. The dialogue, which included a follow-up interview after the research was completed, highlights the expectations and tensions in such collaborative projects and offers the epidemiologist an opportunity to highlight the ideas, methods, and possibilities that he perceived as being ‘lost in translation’ between sociocultural anthropology and experimental medicine. We raise critical issues regarding the disjuncture between epidemiological and anthropological practices in research design, methods, epistemology, and collaboration, with the hopes of provoking more discussions regarding best practices in collaborative research projects.
A research alliance: Tracking the politics of HIV-prevention trials in Africa
Kristin Peterson and Morenike Folayan
This article explores a research alliance across fields and continents in the wake of the early and controversial HIV-prevention clinical trials of pre-exposure prophylaxis (PrEP). Our research set out to understand why three trial arms prematurely closed while another was refused approval from the relevant institutional review board. We conducted ethnographic research on ‘what happened’ at two of the sites. Over time our research strategy cohered around unearthing and exploring rapidly disappearing knowledge. We analyze insider/outsider politics, the power of global public-private partnerships, and the forms of scientific knowledge (located in African countries) that get left behind in the process.
Philosophy, Ethics, and Humanities in Medicine
The wizard behind the curtain: programmers as providers (open access)
Mark A. Graber and Olivia Bailey
It is almost universally accepted that traditional provider-patient relationships should be governed, at least in part, by the ethical principles set forth by Beauchamp and Childress (Beauchamp and Childress, Principles of biomedical ethics, 1979). These principles include autonomy, beneficence, non-maleficence and justice (Beauchamp and Childress, Principles of biomedical ethics, 1979). Recently, however, the nature of medial practice has changed. The pervasive presence of computer technology in medicine raises interesting ethical questions. In this paper we argue that some software designers should be considered health care providers and thus be subject the ethical principles incumbent upon “traditional” providers. We argue that these ethical responsibilities should be applied explicitly rather than as a passive, implicit, set of guidelines.
Science, Technology and Society
Humanitarian Innovations and Material Returns: Valuation, Bio-financialisation and Radical Politics
Anna M. Agathangelou
This article critically examines the global humanitarian innovation movement by conjuncting it with the stem cell biotech sector to trace how in the assemblage of matter and code conflicts emerge about notions of suffering, pain, enhancement as well as markets that alter the very material forms of life and economy. In the first section, I look at two things simultaneously: a bio-humanitarian project—the Cypriot search for and DNA identification of the post-war missing—and clinical trials performed by the biotech corporate sector. I trace their respective methods of value and valuation as not only dependent social molecuralised practices but also as translation technologies of kinship, creation of new notions of life and death and governance. In the second section, I take a close look at the emergence of humanitarian and clinical labour as a global assemblage to show how humanitarian organisations and transnational corporations orient themselves towards certain labour assemblages in the search ‘anywhere’ to learn about, borrow and translate technologies supporting the ‘business’ of empire. I finish with broader theoretical implications of the humanitarian work post war and the clinical labour of patients in stem cell therapies.
Biopolitical Excess: Techno-Legal Assemblage of Stem Cell Research in India
Stem cell research on cardiac patients at the All India Institute of Medical Sciences (AIIMS), which was disclosed through the media in 2005, created a storm. On the one hand, it was celebrated as a ‘global first in pioneering stem cell medicine’. On the other hand, not only the AIIMS study, but, more broadly, stem cell research and therapy in India was criticised for ‘tall claims [and] questionable ethics’. The responses of the policymakers and regulators in India were equally divergent. How are we to understand the contingency and unpredictability of the regulatory regime in India? The answers to this and other related questions are often presented through a regulatory fix—countries such as India need to tighten their regulatory regime. The need for a legally binding regulatory regime is undeniable; nevertheless, a narrow focus on a regulatory fix fails to explain several issues. In this article, I analyse the stem cell research on cardiac patients at AIIMS. Through a focus on epistemic, ethical and juridical assemblage of stem cell research, I highlight the inescapable contingency in the translation between ‘governmental rationality’ and ‘the practice of government’ and show how this reflects biopolitical excess.
Changing the navigator’s course: How the increasing rationalization of healthcare influences access for undocumented immigrants under the Affordable Care Act
A number of researchers have shown that brokers (e.g., navigators and street-level bureaucrats) bridge access to healthcare services and information for immigrant patients through rich personal relationships and a mission of ethical care. An open question remains concerning how the increasing rationalization of healthcare over the past few decades influences brokerage for undocumented immigrant patients. Drawing from fieldwork and interviews conducted in California, as the Affordable Care Act (ACA) was implemented, I develop the concept of the “double-embedded-liaison.” While other studies treat brokers as acting either as gatekeepers or patient representatives, this study explains how brokers simultaneously operate on multiple planes when new roles are added. I argue that with more formalization and scrutiny at health centers, the impact of brokerage is destabilized and, subsequently, diminished. Two consequences of the double-embedded-liaison brokerage form are: (1) some brokers become disillusioned and exit –resulting in the loss of valuable resources at the health centers, and (2) immigrants move away from the health centers that historically served them. In looking at brokers’ simultaneous performance as gatekeepers and representatives, this research extends brokerage typologies and street-level bureaucracy arguments that largely treat brokerage in a mono-planar rather than in a bi-planar mode. Furthermore, in examining the risks and opportunities brokerage brings to addressing health disparities, the study provides insights into the effects of replacing the ACA or repealing it all together in the Post-Obama era.
Where biomedicalisation and magic meet: Therapeutic innovations of elite sports injury in British professional football and cycling
Alex Faulkner, Michael McNamee, Catherine Coveney, and Jonathan Gabe
Injury is a conspicuous feature of the practice and public spectacle of contemporary elite sports. The paper argues that the ‘biomedicalisation’ thesis (medico-industrial nexus, techno-scientific drivers, medical optimisation, biologisation, the rise of evidence and health surveillance) goes some way to capturing the use in elite sports injury of some highly specialised mainstream therapies and some highly maverick biological therapies, which are described. Nevertheless, these main strands of biomedicalisation do not capture the full range of these phenomena in the contexts of sports medicine and athletes’ practices in accessing innovative, controversial therapies. Drawing on multi-method qualitative research on top-level professional football and cycling in the UK, 2014–2016, we argue that concepts of ‘magic’ and faith-based healing, mediated by notions of networking behaviour and referral systems, furnish a fuller explanation. We touch on the concept of ‘medical pluralism’, concluding that this should be revised in order to take account of belief-based access to innovative bio-therapies amongst elite sportspeople and organisations.
Tinkering toward departure: The limits of improvisation in rural Ethiopian biomedical practices
This paper explores Ethiopian physicians’ responses to tensions produced by gaps between ideals of biomedicine and realities of clinical practice in two rural Ethiopian hospitals. Physicians engage in creativity and improvisation, including relying on informal networks and practices and tinkering within diagnoses and procedures, to overcome constraints of lack of resources and limited opportunities to engage in “good medicine.” These courageous, but often unsuccessful attempts to mitigate professional and personal conflicts within their medical practices represent improvisation in impossible circumstances. This paper results from ethnographic research conducted in 2013–2014 and includes participant observations and qualitative interviews in two hospitals within the same community. The inherent conflicts among globalized standards, unpredictable transnational medical networks, and innovative practices produce tenuous clinical spaces and practices that rely on a mosaic of techniques and ad hoc connections. Tinkering and improvisation often fail to mediate these conflicts, contributing to physician disenchantment and departure from the community.
Water insecurity in a syndemic context: Understanding the psycho-emotional stress of water insecurity in Lesotho, Africa
Cassandra L. Workman and Heather Ureksoyb
Syndemics occur when populations experience synergistic and multiplicative effects of co-occurring epidemics. Proponents of syndemic theory highlight the importance of understanding the social context in which diseases spread and cogently argue that there are biocultural effects of external stresses such as food insecurity and water insecurity. Thus, a holistic understanding of disease or social vulnerability must incorporate an examination of the emotional and social effects of these phenomena. This paper is a response to the call for a renewed focus on measuring the psycho-emotional and psychosocial effects of food insecurity and water insecurity. Using a mixed-method approach of qualitative interviews and quantitative assessment, including a household demographic, illness, and water insecurity scale, the Household Food Insecurity Access Scale, and the Hopkins Symptoms Checklist-25, this research explored the psycho-emotional effects of water insecurity, food insecurity, and household illness on women and men residing in three low-land districts in Lesotho (n = 75). Conducted between February and November of 2011, this exploratory study first examined the complicated interaction of water insecurity, food insecurity and illness to understand and quantify the relationship between these co-occurring stresses in the context of HIV/AIDS. Second, it sought to separate the role of water insecurity in predicting psycho-emotional stress from other factors, such as food insecurity and household illness. When asked directly about water, qualitative research revealed water availability, access, usage amount, and perceived water cleanliness as important dimensions of water insecurity, creating stress in respondents’ daily lives. Qualitative and quantitative data show that water insecurity, food insecurity and changing household demographics, likely resulting from the HIV/AIDS epidemic, are all associated with increased anxiety and depression, and support the conclusion that water insecurity is a critical syndemic dimension in Lesotho. Together, these data provide compelling evidence of the psycho-emotional burden of water insecurity.
Feeding premature neonates: Kinship and species in translational neonatology
Mie S. Dam, Sandra M. Juhl, Per T. Sangild, and Mette N. Svendsen
Kinship, understood as biogenetic proximity, between a chosen animal model and a human patient counterpart, is considered essential to the process of ‘translating’ research from the experimental animal laboratory to the human clinic. In the Danish research centre, NEOMUNE, premature piglets are fed a novel milk diet (bovine colostrum) to model the effects of this new diet in premature infants. Our ethnographic fieldwork in an experimental pig laboratory and a neonatal intensive care unit (NICU) in 2013–2014 shows that regardless of biogenetics, daily practices of feeding, housing, and clinical care hold the potential for stimulating and eroding kinship relations between human and nonhuman actors. In the laboratory, piglets and researchers form ‘interspecies-milk-kinships’ that entail the intimate care crucial to keeping the compromised piglets alive during the experiments, thereby enhancing what the researchers refer to as the ‘translatability’ of the results. In the NICU, parents of premature infants likewise imagine a kind of interspecies kinship when presented with the option to supplement mother’s own milk with bovine colostrum for the first weeks after birth. However, in this setting the NICU parents may perceive the animality of bovine colostrum, and the background information obtained in piglets, as a threat to the infants’ connection to their biological parents as well as the larger human collective. Our study argues that the ‘species flexibility’ of premature beings profoundly shapes the translational processes in the field of neonatology research.
Controlling new knowledge: Genomic science, governance and the politics of bioinformatics
Brian Salter and Charlotte Salter
The rise of bioinformatics is a direct response to the political difficulties faced by genomics in its quest to be a new biomedical innovation, and the value of bioinformatics lies in its role as the bridge between the promise of genomics and its realization in the form of health benefits. Western scientific elites are able to use their close relationship with the state to control and facilitate the emergence of new domains compatible with the existing distribution of epistemic power – all within the embrace of public trust. The incorporation of bioinformatics as the saviour of genomics had to be integrated with the operation of two key aspects of governance in this field: the definition and ownership of the new knowledge. This was achieved mainly by the development of common standards and by the promotion of the values of communality, open access and the public ownership of data to legitimize and maintain the governance power of publicly funded genomic science. Opposition from industry advocating the private ownership of knowledge has been largely neutered through the institutions supporting the science-state concordat. However, in order for translation into health benefits to occur and public trust to be assured, genomic and clinical data have to be integrated and knowledge ownership agreed upon across the separate and distinct governance territories of scientist, clinical medicine and society. Tensions abound as science seeks ways of maintaining its control of knowledge production through the negotiation of new forms of governance with the institutions and values of clinicians and patients.
Clinical prediction and the idea of a population
Using an analysis of the British Medical Journal over the past 170 years, this article describes how changes in the idea of a population have informed new technologies of medical prediction. These approaches have largely replaced older ideas of clinical prognosis based on understanding the natural histories of the underlying pathologies. The 19th-century idea of a population, which provided a denominator for medical events such as births and deaths, was constrained in its predictive power by its method of enumerating individual bodies. During the 20th century, populations were increasingly constructed through inferential techniques based on patient groups and samples seen to possess variable characteristics. The emergence of these new virtual populations created the conditions for the emergence of predictive algorithms that are used to foretell our medical futures.
Mass fainting in garment factories in Cambodia
This paper reports an ethnographic study of mass fainting among garment factory workers in Cambodia. Research was undertaken in 2010–2015 in 48 factories in Phnom Penh and 8 provinces. Data were collected in Khmer using nonprobability sampling. In participant observation with monks, factory managers, health workers, and affected women, cultural understandings were explored. One or more episodes of mass fainting occurred at 34 factories, of which 9 were triggered by spirit possession. Informants viewed the causes in the domains of ill-health/toxins and supernatural activities. These included “haunting” ghosts at factory sites in the wake of Khmer Rouge atrocities or recent fatal accidents and retaliating guardian spirits at sites violated by foreign owners. Prefigurative dreams, industrial accidents, or possession of a coworker heralded the episodes. Workers witnessing a coworker fainting felt afraid and fainted. When taken to clinics, some showed signs of continued spirit influence. Afterwards, monks performed ritual ceremonies to appease spirits, extinguish bonds with ghosts, and prevent recurrence. Decoded through its cultural motifs of fear and protest, contagion, forebodings, the bloody Khmer Rouge legacy, and trespass, mass fainting in Cambodia becomes less enigmatic.