Science, Medicine, and Anthropology
Because of a COVID mix-up, this month we are reviewing articles published in April, along with our regular July entry. In April, the Journal of the Royal Anthropological Institute featured a special issue on Mind and Spirit: A Comparative Theory , edited by Tanya Luhrmann. Enjoy reading.
Critical Public Health
Nupur Jain, Marci D. Cottingham & Jill A. Fisher
While enormous strides have been made in the representation of women in clinical trials, the percentage of women enrolling in Phase I trials still remains low, which both raises public health concerns about the safety of new drugs and social justice concerns regarding their inclusion in research. As part of a longitudinal study of healthy volunteers in the United States, our inquiry aimed to examine impediments to women enrolling in Phase I trials as well as their experiences participating in these studies at residential research clinics. We analyzed 111 semi-structured interviews conducted with 47 women who had enrolled in at least one Phase I trial. Our study indicates that women face discrimination during all stages of their participation in Phase I trials from their ability to qualify for studies, the treatment they receive in the clinic facilities, and a lack of social support. Specifically, we found that (1) study designs disadvantage participants of childbearing potential, (2) women feel vulnerable in the clinic space when outnumbered by men, and (3) heterosexual women are often discouraged from participation by their husbands or significant others. Placing these findings within the scholarly literature on barriers to women’s clinical trial participation, we argue that diverse strategies attending both to physiological and social factors are needed to combat inequalities in U.S. Phase I trial participation.
Jake Rance, Lise Lafferty & Carla Treloaron behalf of the SToP-C Study Group
The recent advent of new, highly effective, direct-acting antivirals (DAAs) is dramatically reshaping the hepatitis C virus (HCV) treatment landscape and prisons are set to play an important role. While there is a substantial literature addressing the centrality of stigma to experiences of living with HCV in the community, including as a barrier to treatment, scant attention has been paid to documenting how HCV-stigma figures within the distinct sociality of prison life. This article focuses on initial, pretreatment interviews with prisoner participants (n = 32) from the first, real-world trial of HCV ‘treatment-as-prevention’ in prison: Australia’s Surveillance and Treatment of Prisoners with Hepatitis C (SToP-C) study. Drawing on recent developments in stigma theory alongside Goffman’s original insights, we posit HCV-stigma as a relational, contingent and political process, materialised across the network of power relations in prison. Participant accounts describe a complex picture, with reports ranging from those suggesting the ‘normalisation’ of HCV to those detailing the potential effects of HCV-stigma, including additional disciplinary attention from officers and/or the rejection from peer networks by fellow prisoners. While acknowledging the limiting effects HCV-stigma may yet have on treatment-as-prevention efforts, we speculate that with committed political leadership, operational investment, sufficient prisoner engagement, interventions such as SToP-C may also afford opportunities for such effects to be challenged, disrupted, and even left behind.
Journal of the Royal Anthropological Institute
From karma to sin: a kaleidoscopic theory of mind and Christian experience in northern Thailand
Felicity Aulino
In this essay, I argue for a ‘kaleidoscopic’ theory of mind implicit in people’s common‐sense awareness of themselves, others, and reality in northern Thailand. Phenomenal experience is here generally understood as contingent on a host of factors, from personal habits to the influence of others, such that sensory perceptions themselves are in part a consequence of prior action (karma) with moral import. When Thai people convert to Christianity, they reject karma in favour of a God who will absolve a believer of all offence. Drawing on both neo‐Pentecostal and Buddhist Thais’ rich descriptions of their encounters with the divine and a host of other ‘supernatural’ experiences, I show how many Thai Christians maintain an abridged sense of karmic contingency. With attention to local theory of mind, non‐monotheistic knowledge formations come into focus, highlighting the unique nature of the individualism emerging among Thai congregants and the stakes such individuation has for them.
Crossing the buffer: ontological anxiety among US evangelicals and an anthropological theory of mind
Joshua Brahinsky
Scholars describe the dominant model of mind in the United States as secular: bounded, private, supernaturally inert, and the locus for self and identity. I argue that US charismatic evangelicals live with the secular sense of a seemingly immutable boundary between the immaterial mind‐self and the material world – what Charles Taylor might call ‘boundedness’ – but at the same time, their commitment to supernatural connection means they imagine the mind‐world boundary as porous under certain circumstances: a brittle, fragile buffer between the natural and the supernatural. To allow this porosity, charismatics develop strategies for crossing the buffer, which include spoken prayer, powerful emotions, playful modes of pretend, and bodily rupture or ‘breaking in’. These strategies provide evidence that the supernatural is real. Yet practitioners remain anxious about the relationship between these supernatural experiences and the scepticism around them. This ‘ontological anxiety’ becomes visible in three ways. First, charismatics cultivate intense bodily sensations that demonstrate the reality of God. Second, they describe their experience with a ‘common‐sense realism’. Finally, charismatics are disturbed by the incoherence between their evangelical and secular impulses around the possibility of mental action.
John Dulin
This essay looks at the resonances between common cultural models of the mind in the central region of Ghana and patterns of spiritual experience among charismatic evangelical Christians and practitioners of southern Ghana’s indigenous religion, known as traditionalists. In particular, I examine the resonance between the model of the mind that construes it as porous, as vulnerable to forcible take‐over by hostile entities, and experiences of divine beings insistently pushing people to do their will. It is also relatively common for people in Ghana to report seeing the divine with their eyes and hearing it with their ears. I argue that this experience resonates with, and is perhaps facilitated by, a tendency of local models of mind in Ghana to blend sense and percept.
The mind and the Devil: porosity and discernment in two Chinese charismatic‐style churches
Emily Ng
This essay explores otherworldly encounters and notions of mind across two charismatic‐style churches in China. In Zhao Village Church in rural Henan province, Christian congregants more often approached the mind as porous to the Devil’s corruption. In Living Church in Shanghai, congregants were more influenced by bounded, psychological notions of the mind as an entity; although the mind was also held to be permeable to spiritual personae, its interior workings stood as the central hindrance to discernment, rather than the externality of the Devil. And while those in Shanghai stressed a gradual, retroactive verification of potential spiritual signs, those in Henan strove for a rhythm of immediate response. Meanwhile, Shanghai congregants described fewer sensory and embodied encounters with divine voice, pain, and healing than congregants in Henan. Such divergent theories of mind, virtuous rhythms, and distributions within the Christian spiritual sensorium might be understood in part through styles of engagement accentuated at these churches, and in part through the uneven unfolding of religious abolition and revival in China, including the heightened urban presence of psychotherapeutic genres and the rural presence of spirit mediumship in recent decades. These variations in personhood and otherworldly encounter, including deeply porous ones, were thus co‐present in an atheist secular milieu, after what have been seen as some of the most thorough secularization campaigns conducted by a modern state.
Rachel E. Smith
‘Theory of mind’ in developmental psychology focuses on how children develop the ability to infer others’ beliefs, desires, and intentions. Anthropologists have taken up the notion of ‘theory of mind’ to explore the way cultural differences in representations of beliefs, desires, and intentions affect everyday lives. In Oceania, anthropologists have noted that inferences about others’ intentions are not accorded a privileged role in social interaction. In Vanuatu, I find, it is often the material, rather than immaterial, aspects of relatedness that are elaborated upon. People think about knowledge, creativity, meaning, and intention not as confined to a bounded mental or inner domain, but as discoverable through the body, and in the world at large. I argue here that this propensity to locate meaning and moral purpose as external to the mind corresponds to a ‘porous’ view of self and mind, and that this in turn may open people to experience vivid, intense, and often tangible forms of spiritual encounter.
Thinking about thinking: the mind’s porosity and the presence of the gods
T.M. Luhrmann
The Mind and Spirit project found that the way a social world invites its members to experience thought appears to have consequences. When the boundary between inner awareness and outer world is culturally represented as porous, so that thoughts can be construed to move in and out of the mind as if they had agency and power, people are more likely to describe their experience of invisible others as if those others could be experienced with the senses. They are more likely to say that a god or spirit spoke in a way they could hear with their ears, or that they sensed a presence in the room.
Diabetic Retinopathy and the Cascade into Vision Loss
Carolyn Smith-Morris, George H. Bresnick, Jorge Cuadros, Kathryn E. Bouskill & Elin Rønby Pedersen
Vision loss from diabetic retinopathy should be unnecessary for patients with access to diabetic retinopathy screening, yet it still occurs at high rates and in varied contexts. Precisely because vision loss is only one of many late-stage complications of diabetes, interfering with the management of diabetes and making self-care more difficult, Vision Threatening Diabetic Retinopathy (VTDR) is considered a “high stakes” diagnosis. Our mixed-methods research addressed the contexts of care and treatment seeking in a sample of people with VTDR using safety-net clinic services and eye specialist referrals. We point to conceptual weaknesses in the single disease framework of health care by diagnosis, and we use the framework of “cascades” to clarify why and how certain non-clinical factors come to bear on long-term experiences of complex chronic diseases
Indigenous Identification by Health Professionals in a Mexican Hospital Setting
Tirsa Colmenares-Roa & Ingris Peláez-Ballestas
In this article, we describe and analyze the identification of people as Indigenous by health-care professionals in a hospital in Mexico City. This socially constructed identification is based on a “contrasting identity” of essentialist and stereotyped categories (language, place of origin, cultural practices, and poverty) that promote the normalization of inequity, marginality, and racism. The ambivalence of the invisibility of the indigenous in the health-care context also marginalizes and generates inequity when it comes to the access to healthcare.
“Somebody Is Gonna Be Hurt”: Involuntary Drug Treatment in Mexico
Claudia Rafful, María Elena Medina-Mora, Patricia González-Zúñiga, Janis H. Jenkins, M. Gudelia Rangel, Steffanie A. Strathdee & Peter J. Davidson
Involuntary drug treatment (IDT) is ineffective in decreasing drug use, yet it is a common practice. In Mexico, there are not enough professional residential drug treatment programs, and both voluntary and involuntary drug treatment is often provided by non-evidence based, non-professional programs. We studied the experiences of people who inject drugs (PWID) in Tijuana who were taken involuntarily to drug centers under the auspices of a federally funded police operation. We provide insight into how the health, wellbeing, human rights, dignity, and security of PWID ought to be at the center of international drug policies included in universal health care systems.
When Life Becomes a Burden at the Urban Margins of Buenos Aires
María E. Epele
Based on ethnographic research carried out in the metropolitan area of Buenos Aires, in this article, I analyze the logic of the burden for workers of segregated populations who live on the urban margins under the neoliberal regime. Unlike other languages of afflictions, the language of the logic of the burden resists being subdued completely to psy technologies. In this article, I argue that this challenges how development programs in Buenos Aires metropolitan areas have caused afflictions to people who live in contexts of urban poverty and seek their well-being, led by promises to reach it through work.
Humanitarianism from Below: Sowa Rigpa, the Traditional Pharmaceutical Industry, and Global Health
Stephan Kloos
In this article I explore, for the first time, the relationship between Sowa Rigpa (Tibetan medicine) and global health, tracing “the global” in ethical discourses and pharmaceutical innovation practices of Tibetan medical practitioners. I argue that Sowa Rigpa’s engagement with the world and its global health activities outside China can be understood as a form of “humanitarianism from below,” while its industrialization in China aligns with global health in different ways. In providing new insights into recent developments of Sowa Rigpa, I aim to decenter the notion of humanitarianism and contribute to a broader understanding of global health.
Impacting Health through Cross-Border Pharmaceutical Purchases
Matthew Dalstrom, Ryan Chung & Lynette Castronovo
Annually, retirees known as Winter Texans travel to spend the winter along the Texas/Mexico border and while there, many purchase medicine in Mexico. However, strategies that are used when purchasing Mexican medicine and the health implications of doing so have not been adequately explored. The results of the study we report illustrate that Winter Texans are knowledgeable about their healthcare and act more as choice-making consumers than patients seeking care. Furthermore, the use of Mexican medication did not increase rates of adverse drug events or decrease health-related quality of life scores.
Rethinking repetition in dementia through a cartographic ethnography of subjectivity
Jong-min Jeong
This article critically engages with the predominant understandings of repetitive bodily practices within a dementia context. Rather than interpreting such practices as pathological and abnormal, I instead approach them through an ethnographic mapping, paying particular attention to the affective dynamics of repetition. Critically developing Fernand Deligny’s insights and methods of tracing and mapping bodily movements in dialogue with Tim Ingold’s notion of dwelling, I demonstrate affect-underpinned encounters and interactions of repetitive phenomena. I then argue for the extension of recent anthropological discussions about affect, repetition, and subjectivity by suggesting a more productive dialogue among theories of affect, body, atmosphere, cognition, memory, language, and life history.
Structural vulnerabilities and healthcare services integration: HIV-positive Mozambican migrants in Johannesburg
Bent Steenberg
Home to one fifth of all people living with HIV, South Africa carries the world’s heaviest burden of this disease. While a significant proportion of those infected are immigrants from other African high-prevalence countries, little is known about how these migrants engage with healthcare systems in shifting cultural and clinical settings. This article draws on fieldwork from migrant communities and twenty-one ethnographic life histories told by HIV-positive Mozambicans in a major South African HIV clinic. From their collective narratives, a range of structural vulnerabilities are found that limit immigrants’ access to, and proper integration within, healthcare services. These include perilous migration, xenophobia and deportation, exclusion and exploitation, language barriers, medical pluralism, cultural estrangement, social isolation, and the stigmas of being HIV-positive. In conjunction, these structural factors may delay treatment-seeking and inhibit drug adherence, which could increase rates of morbidity and mortality as well as contribute to viral mutation and antiretroviral drug resistance.
Sticky models: History as friction in obstetric education
John Nott, Anna Harris
This paper explores the material histories which influence contemporary medical education. Using two obstetric simulators found in the distinct teaching environments of the University of Development Studies in the north of Ghana and Maastricht University in the south of the Netherlands, this paper deconstructs the material conditions which shape current practice in order to emphasise the past practices that remain relevant, yet often invisible, in modern medicine. Building on conceptual ideas drawn from STS and the productive tensions which emerge from close collaboration between historians and anthropologists, we argue that the pull of past practice can be understood as a form of friction, where historical practices ‘stick’ to modern materialities. We argue that the labour required for the translation of material conditions across both time and space is expressly relevant for the ongoing use and future development of medical technologies.
Following ‘Fosfo’: Syntheticphosphoethanolamine and the transfiguration of immunopolitics in Brazil
Márcio Vilar
The chemical substance synthetic phosphoethanolamine (fosfoetanolamina sintética) was developed at the University of São Paulo (USP) in Brazil at the beginning of the 1990s and, until 2014, was tested on and distributed to cancer patients by members of USP’s Chemistry Institute (IQSC) in the city of São Carlos. That year, the production and distribution of ‘Fosfo’, as it became popularly known, was forbidden by IQSC’s director with the support of USP’s rector and the Brazilian National Sanitary Surveillance Agency (ANVISA). Shortly after this first prohibition, however, Fosfo gained popularity and became a national symbol of local scientific innovation and hope for a cancer cure. Likewise, it became an object of regulatory disputes involving multiple sectors of Brazilian society. Despite several further efforts by some scientists and patients to legitimate Fosfo as a pharmaceutical, ANVISA never authorized it. Nevertheless, at the same time as parts of Brazil’s established medical communities were becoming suspicious of Fosfo, its informal production and dissemination were increasing surreptitiously, with many Fosfo users and stakeholders questioning the legitimacy of conventional cancer therapies. In this article, I aim to understand the impact of Fosfo as a biotechnological innovation in terms of the ‘transfiguration’ of the physical and juridical persons involved in this controversy. Through the lens of transfiguration, the engagement and therapeutic-regulatory experiences of Fosfo users and stakeholders appear as deviant journeys that introduce discontinuities into established biomedicine and imply radical transformations at multiple levels, ranging from individuals to larger institutional environments.
Old, disabled, successful? Transfigurations of aging with disabilities in Switzerland
Francesca Rickli
Aging – both the definition and the actual process of aging – has undergone fundamental local and global changes in the past decades. Various advances in technology and medicine increasingly allow senior citizens in Switzerland to ‘age successfully’ and have shifted societal expectations about what aging should include. This article looks at a group of senior citizens who encounter an increasing discrepancy between the demands fostered by the dominant discourse of ‘successful aging’ and the infrastructure made available to them. At the same time, seniors with disabilities are transfigured and come to stand for dependence, frailty, and decline because of this reconceptualization of aging. This article analyzes the cases of three senior citizens with disabilities which show the consequences of changed normative imaginaries, practices, and infrastructures on how senior citizens with disabilities experience their socialities.
Transfigurations of aging: Everyday self-care in a civil servant milieu of Dar es Salaam, Tanzania
Andrea Kaiser-Grolimund
To date, most social anthropological studies on aging in African contexts focus on care for poor older people provided by related others. The focus of this article is different as it focuses on older people with better financial means than the average: civil servants belonging to Dar es Salaam’s middle class. Furthermore, this contribution shifts the focus from care provided through related others to practices of everyday self-care, the care that these older people provide for themselves with the help of relatives in Tanzania and the USA. In order to stay healthy and cope with diagnosed chronic conditions, older participants in this study engage in physical exercises, eat ‘good food’, and go for regular medical check-ups. This article argues that these health-promoting self-care practices of older urban dwellers reflect changing experiences of aging, health, and care, and point to transfigurations of the social imaginary of aging in Dar es Salaam’s middle class.
Clinical empathy as emotional labor in medical work
Alexandra H. Vinson and Kelly Underman
The ongoing social transformation of the American healthcare system brings both structural and interpersonal changes to the delivery of healthcare. Some of these changes have been motivated by patients, who increasingly desire emotionally warm interactions with physicians. This is a departure from the detached concern that characterized physician-patient interactions in the mid-twentieth century. Concurrently, medical training continually adapts to trends in medical practice so that future physicians are prepared to enter practice. In this paper, we examine the rise of clinical skills training courses and assessments in medical school, highlighting the changing role of emotion in training about communication in the doctor – patient relationship. Drawing on an interpretive analysis of interviews with and ethnographic observations of medical students and residents from two United States medical schools, we elaborate the concept of clinical empathy to describe the character of emotional engagement in the contemporary clinical encounter. In the analysis we show how standards of emotional conduct are taught in medical school, how clinical empathy is operationalized in the patient encounter, and how clinical empathy may be used instrumentally to smooth the physician’s work. Finally, we position the consistent performance of clinical empathy as a form of emotional labor, expanding the reach of studies of emotional labor in professions.
Silent politics and unknown numbers: Rural health bureaucrats and Zambian abortion policy (Open Access)
Marte E. S. Haaland, Haldis Haukanes, Joseph Mumba Zulu, Karen Marie Moland, Astrid Blystad
This article addresses the gaps between knowledge, policy and practice in reproductive health by exploring the processes involved in translating Zambian abortion policy from paperwork to practice in a predominantly rural province. Central to these processes are rural health bureaucrats, who are tasked with administering and monitoring a myriad of reproductive health policies and programmes. The articles is based on eleven months of ethnographic fieldwork in Zambia from September 2017 to August 2018, including in-depth interviews with rural health bureaucrats and participant observation in health management and policy meetings. It examines how health bureaucrats deal with the abortion-related challenges they face. Our findings reveal a complex landscape of reproductive health politics and moral double-binds and give insight into the gap between Zambia’s seemingly liberal abortion policy and the lack of access to abortion services in rural areas. Despite the bureaucrats’ knowledge about abortion policy, none of the hospitals in the study province offer legal abortion services. While many bureaucrats consider abortion to be a public health issue and see the need to offer legal services to abortion-seeking women, they often bypass abortion-related issues and treat them with silence in policy meetings and public settings. The silence corresponds with the lack of data on abortion and post-abortion care in district and provincial health offices and should be understood in relation to both the dominant moral regime of the Zambian state and global pressure towards specific reproductive health targets. This article calls for increased focus on politics and power dynamics in the state apparatus in order to understand the gaps between knowledge, policy and practice in sexual and reproductive health.
Catherine Coveney, Alex Faulkner, Jonathan Gabe, and Michael McNameede
Elite athletes face extreme challenges to perform at peak levels. Acute and chronic musculoskeletal injuries are an occupational hazard while pressures to return to play post-injury are commonplace. Therapeutic options available to elite athletes range from novel ‘cutting edge’ biomedical therapies, established biomedical and surgical techniques, and physiotherapy, to a variety of non-orthodox therapies. Little is known about how different treatment options are selected, evaluated, nor how their uses are negotiated in practice. We draw on data from interviews with 27 leading sports medicine physicians working in professional football and cycling in the UK, collected 2014–16. Using idea of the ‘therapeutic landscape’ as a conceptual frame, we discuss how non-orthodox tools, technologies and/or techniques enter the therapeutic landscape of elite sports medicine, and how the boundaries between orthodox and non-orthodox therapy are conceptualised and navigated by sports medicine practitioners. The data provide a detailed and nuanced examination of heterogenous therapeutic decision –making, reasoning and practice. Our data show that although the biomedical paradigm remains dominant, a wide range of non-orthodox therapies are frequently used, or authorised for use, by sports medicine practitioners, and this is achieved in complex and contested ways. Moreover, we situate debates around nonorthodox medicine practices in elite sports in ways that critically inform current theories on Complementary and Alternative Medicine (CAM)/biomedicine. We argue that existing theoretical concepts of medical pluralism, integration, diversity and hybridisation, which are used to explain CAMs through their relationships with biomedicine, do not adequately account for the multiplicity, complexity and contestation that characterise contemporary forms of CAM use in elite sport.
“Techno-social reconfigurations in diabetes (self-) care”
Giada Danesi, Mélody Pralong, Francesco Panese, Bernard Burnand, Michèle Grossen
This article focuses on the ways in which a flash glucose monitoring system, FreeStyle Libre®, is introduced and used by people living with type 1 diabetes, their relatives and healthcare professionals. It draws on a multi-sited ethnography in a variety of clinical and daily situations, and on interviews with caregivers and people living with diabetes. We explore how the users develop knowledge-in-practice, and consider the use of self-management technologies to be largely dependent on locally grounded and situated care acts, and resulting from the relational, pragmatic and creative maneuvering of technology-in-practice. Our findings show that adjustments between users, their bodies and the technology are required, and show the reflexive work and practices of patients and relatives who learn to use the device in a proper way. Moreover, we reveal that practitioners see this technology as a tool that not only improves self-care practices but also clinical practices, and that wearing and using this new medical device may become a moral injunction for self-improvement. Our results illustrate the techno-social reconfigurations at work and the development of new ways of feeling, thinking and acting in diabetes (self-) care.
“Caring for data: Value creation in a data-intensive research laboratory”
Clémence Pinel, Barbara Prainsack, Christopher McKevitt
Drawing upon ethnographic observations of staff working within a research laboratory built around research and clinical data from twins, this article analyzes practices underlying the production and maintenance of a research database. While critical data studies have discussed different forms of ‘data work’ through which data are produced and turned into effective research resources, in this paper we foreground a specific form of data work, namely the affective and attentive relationships that humans build with data. Building on STS and feminist scholarship that highlights the importance of care in scientific work, we capture this specific form of data work as care. Treating data as relational entities, we discuss a set of caring practices that staff employ to produce and maintain their data, as well as the hierarchical and institutional arrangements within which these caring practices take place. We show that through acts of caring, that is, through affective and attentive engagements, researchers build long-term relationships with the data they help produce, and feel responsible for its flourishing and growth. At the same time, these practices of care – which we found to be gendered and valued differently from other practices within formal and informal reward systems – help to make data valuable for the institution. In this manner, care for data is an important practice of valuation and valorisation within data-intensive research that has so far received little explicit attention in scholarship and professional research practice.