Here’s the first part of the In the Journals for March. There’s a special issue of Culture, Medicine, and Psychiatry called “Special Issue on Being Human in the Age of the Brain.”
Enjoy!
The molecularization of race in testosterone research
Brandon L. Kramer
While feminist science studies scholars have documented the misleading and dangerous implications of reducing testosterone to a ‘sex hormone,’ few studies have explored how testosterone is used to racialize populations in and beyond scientific research. In this article, I conduct a content analysis of 149 studies that evaluate population differences in testosterone. Despite widespread claims that testosterone varies between racial groups, my analysis of this literature provides scant evidence to support these proclamations, undermining the notion that testosterone contributes to racial differences in biomedical and biosocial outcomes. To supplement these findings, I use network analysis to visualize study outcomes as a citation network and trace racial differences testing in testosterone research from early twentieth century eugenics research to the contemporary ‘gold-standards’ used by scientists today. Lastly, I propose three theoretical mechanisms—ambiguity, absence and data recycling—to help explain how the racialization of populations is perpetuated in this context. Together, these mechanisms provide a basis for STS scholars to better understand how researchers enact population differences across different scientific contexts.
Cal Lee Garrett
Trans medicine has historically naturalized a heterosexual binary model of gender by treating variation as aberrant. Gender dysphoria, the current psychiatric diagnosis that often facilitates trans medicine, is represented by mental health experts and LGBTQ groups as a superficial semantic shift in this tradition. Based on in-depth interviews with experts who crafted gender dysphoria for the fifth edition of the Diagnostic and Statistical Manual (DSM-5) in 2013 and archival study of the experts’ research process, I find far more than semantics at stake. Because experts had an imperative for evidence-based revisions to the DSM-5 and an underdetermined research based on gender identity development, their revision affirms gender variation as natural and non-pathological. Gender dysphoria is maintained as a mental disorder because experts insist on its importance for the institutional legitimation of trans people, not because gender variation is understood to be pathological. This move toward treating gender variation as a flexible spectrum of illness and wellness required a new scientific interpretation of evidence. This interpretation (1) finds underdetermined research to be credible evidence of natural variation and (2) applies this variation simultaneously to traits (like gender) and also to health status. Consequently, natural variation becomes a scientific finding.
Imagining the public: anticipatory discourses in China’s push for precision medicine
Larry Au
Precision medicine (PM) has become a buzzword in global scientific and medical circles ever since the United States National Research Council 2011 report and the Obama Administration’s unveiling of its PM Initiative in 2015. In response in 2016, the Chinese government pledged $9 billion USD to PM research in the coming years and has designated PM as a key projects in various national plans. While promises of PM in China has similarities to those found in the U.S. and elsewhere, the way in which PM is anticipated stems from an imagination of the Chinese public as separate from the processes of scientific work and policymaking. Based on an analysis of documents and interviews with researchers and entrepreneurs in PM, this paper identifies aspects of the Chinese sociotechnical imaginary of the public and delineates three strands of anticipatory discourse used to galvanize support for PM in China: anxieties over demographic and developmental transitions, unlocking innovation in the “new normal” of slowing economic growth, and techno-nationalist competitions between the U.S. and China.
N = many me’s: self-surveillance for Precision Public Health
Mira W. Vegter, Laurens Landeweerd, Hub A. E. Zwart
This paper focuses on Precision Public Health (PPH), described in the scientific literature as an effort to broaden the scope of precision medicine by extrapolating it towards public health. By means of the “All of Us” (AoU) research program, launched by the National Institutes of Health in the U.S., PPH is being developed based on health data shared through a broad range of digital tools. PPH is an emerging idea to harness the data collected for precision medicine to be able to tailor preventive interventions for at-risk groups. The character of these data concern genetic identity, lifestyle and overall health and therefore affect the ‘intimacy’ of personhood. Through the concept of biological citizenship, we elucidate how AoU and its recruitment tactics, by resonating ‘diversity’, at the same time appeal to and constitute identity, defining individuals as ‘data sharing subjects’. Although PPH is called for; the type of bio-citizenship that is enacted here, has a particular definition, where participant recruitment focuses on ‘citizenship’ in terms of empowerment (front), it is the ‘bio’ prefix that has become the main focus in terms of research. i.e. biosubjectivities vs biocapital. This raises the question whether the societal challenges that often underlie public health issues can be sufficiently dealt with based on the way ‘diversity’ is accounted for in the program. We suggest that the AoU still risks of harming underrepresented groups based on the preconditions and the design of the program.
Nolwenn Bühler, Cathy Herbrand
Mitochondria, the organelles providing the cell with energy, have recently gained greater public visibility in the UK and beyond, through the introduction of two reproductive technologies which involve their manipulation, specifically ‘mitochondrial donation’ to prevent the maternal transmission of inherited disorders, and ‘Augment’ to improve egg quality and fertility. Focusing on these two ‘MitoTechnologies’ and mobilising the conceptual framework of “bio-objectification”, we examine three key processes whereby mitochondria are made to appear to have a life of their own: their transferability, their optimisation of life processes and their capitalisation. We then explore the implications of their bio-objectification in the bioeconomy of reproduction. Drawing on publicly available material collected in two research projects, we argue that mitochondria become a biopolitical agent by contributing to the redefinition of life as something that can be boosted at the cellular level and in reproduction. Mitochondria are now presented as playing a key role for a successful and healthy conception through the development and promotion of MitoTechnologies. We also show how their “revitalising power” is invested with great promissory capital, mainly deriving from their ethical and scientific biovalue in the case of mitochondrial donation, and from the logics of assetisation, in the case of Augment.
The datafication of pain: trials and tribulations in measuring phantom limb pain
Alexandra Middleton
This article takes the phenomenon of phantom limb pain (PLP), and a therapeutic technology designed to treat it, as springboards to critically consider a transformation: from deeply subjective experiences into quantitative data. Drawing upon ethnographic fieldwork on neuroprosthetic development, I examine an international clinical trial coordinated in Sweden using neuromuscular activation, machine learning, and virtual reality to treat PLP. I excavate the trial’s underlying fundaments and tools, tracing how they define, produce and record changes in an individual’s pain along the course of treatment, a process I call the ‘datafication of pain.’ Moving beyond the representational problematic of pain as simultaneously subjective experience and object of medical intervention, I ask: What gets left out, in this process of datafication? And what gets created in the void it leaves? I argue that the experimental paradigm of datafication elides certain key dimensions of pain itself, particularly its relational dimensions, and surfaces new pain-experiences in-situ. The stakes of this elision and surfacing not only impact the data produced, but also the ethics of actual lived, embodied experiences of pain itself. In leaking out of the experimental apparatus, the excess of pain becomes an artifact of the experimental process, as opposed to merely its object. This article examines the relational dimensions—of both the experimental process and phantom limb pain at large—elided by the data-gathering apparatus itself.
Making bio-objects mobile: behind the scenes of a translational stem cell banking consortium
Michael Morrison
The concept of bio-objectification describes how the ‘raw materials’ of living cells and tissues are subject to both technical manipulations and ontological transformations to produce novel ‘bio-objects’ such as cell lines and transgenic animals. Bio-objects are conceptually fluid, but also subject to literal circulation through biobanks and repositories. Making bio-objects mobile means producing them in such a way that they are capable of travelling across jurisdictions, institutional boundaries, and of moving between public and private sectors. This paper uses one particular bio-object—the human induced pluripotent stem cell (hiPSC), and a particular context, a European consortium dedicated to creating an open access repository of hiPSC—to explore what making mobilisable bio-objects entails. The bio-object not only has multiple strands of identity—legal, ethical, political, technical—but this identity is distributed across, and inscribed in, a variety of paper documents, digital records, as well as the biological material. Making bio-objects mobile means putting these heterogeneous components into circulation, which can entail travel through different infrastructures and at different speeds. Moreover, contemporary legal and ethical requirements for the use of human biomaterials require the formation of durable connections that tie bio-objects to places and persons of origin as a condition of mobility.
Culture, Medicine, and Psychiatry
Special Issue on Being Human in the Age of the Brain
Barry Schwartz
Although we are accustomed to thinking about technology as involving things—objects and processes—derived from scientific discoveries, science also creates a technology of ideas, ways of thinking both about the world and about human beings. And unlike “thing technology,” “idea technology” can have powerful effects even when the ideas are false. This paper discusses false idea technology, or ideology, and suggests mechanisms by which it can have effects on both individuals and societies. It discusses neuroscience as the “next frontier” of ideology that may change our conceptions of human nature.
Politics of Plasticity: Implications of the New Science of the “Teen Brain” for Education
Suparna Choudhury and William Wannyn
In recent years, claims that developmental brain science should inform pedagogical approaches have begun to influence educational policies. This article investigates the promise, pitfalls, processes, and implications of these claims. We explore how research on neuroplasticity has led to enormous interest in harnessing mechanistic models of development for applications in the classroom. Synthesizing analysis from the scientific literature on “neuroeducation” and interviews with key actors in the field, we analyze how neural and cognitive processes are mapped onto pedagogical constructs, and how psychological and social-structural factors are (or are not) integrated into explanations. First, we describe the historical trajectory of educational neuroscience and identify how tensions between antagonist groups struggling for authority over brain-based educational claims shaped the field. Second, we focus on the pervasive use of the concept of “neuroplasticity” in the literature. We argue that it is used as a rhetorical device to create hope and empower children, teachers, and parents through educational exercises that promote neurobiological reflexivity. Third, we turn to the notion of “self-regulation” in the neuroeducational programs. We argue that the rationale of these programs emphasizes the young person’s responsibility in navigating their social worlds through the imperative to enhance their executive functions while failing to adequately account for the role of the social environment in the development of self-regulation.
Life as an Intelligence Test: Intelligence, Education, and Behavioral Genetics
Paul Scherz
Using the large datasets available with new gene sequencing and biobank projects, behavioral geneticists are developing tools that attempt to predict individual intelligence based on genetics. These predictive tools are meant to enable a ‘precision education’ that will transform society. These technological developments have not changed the fundamental aims of a program with a long history. Behavioral genetics is continuous with previous attempts to match personal characteristics to heredity, such as sociobiology and evolutionary psychology, and threatens racial and other forms of bias. From these older paradigms, it inherits an understanding of intelligence as informational processing shaped by mechanistic and computational metaphors as well as a view of society and education organized around competition. Because of these influences, these models misdescribe fundamental aspects of human engagement with the world and disregard other concepts of intelligence, which creates problems for the precision education that researchers hope to construct using genetic knowledge.
‘The Explanation You Have Been Looking For’: Neurobiology as Promise and Hermeneutic Closure
Joseph E. Davis
The biomedical aspiration of psychiatry has fundamentally reoriented clinical practice since the DSM-III in 1980 and reverberated in the public sphere. Over time, lay public understanding of the causes of mental suffering has increasingly endorsed biological conceptions. In this paper, I explore the sources from which a neurobiological model for mental suffering reaches ordinary people, and investigate its rhetorical appeal, personal appropriation, and consequences. Drawing on interviews and other data, I show that these sources—physicians, popular media, and advertising—share common ontological and moral assumptions. These assumptions, in turn, influence how people take up neurobiological explanation to account for their suffering, and how, paradoxically, they join it to their projects of self-determination. I conclude by considering how, from a phenomenological perspective, a neurobiological account fails to enhance self-knowledge or determination but leads to a hermeneutic dead end.
Not You: Addiction, Relapse, and Release in Uganda
China Scherz, George Mpanga, Sarah Namirembe
In recent years, alcohol abuse and dependence have become topics of increasing concern in Uganda, but the chronic relapsing brain disease model of addiction remains only one of many ways of understanding and addressing alcohol-related problems there. For many Ugandan Pentecostals and spirit mediums to be addicted is to be under the control of a being that comes from outside the self. Where these two groups differ, and here they differ strongly, is in regard to the moral valence of these external spirits and what ought to be done about them. This article draws on four years of collaborative ethnographic fieldwork to explore the affordances of these ways of viewing and experiencing addiction and recovery for Ugandans attempting to leave alcohol behind. While the idioms of bondage, dedication, and possession are at times severe, this article argues that they contain within them concepts and practices that point away from models of addiction as a chronic relapsing brain disease and towards the possibility of release.
William Hasselberger
In this paper I analyze philosophically the dominant conception of happiness operative in the increasingly popular global movement to empirically define, measure, and promote human happiness: the idea of “subjective psychological wellbeing” (SWB). SWB is presented as an ethically and metaphysically neutral “scientific” view of the human good or wellbeing, grounded purely in empirical psychology, survey data, and neuroscientific findings about the brain mechanisms involved in happiness. I argue that this conception of happiness actually rests upon highly controversial philosophical (non-empirical) presuppositions about the nature of human agency, pleasure, emotion, and the experience of value. I then draw upon phenomenology, the philosophy of emotion, and ethics to argue that this particular conception of happiness, while perhaps suitable for certain limited purposes, is highly problematic when given the leading normative role by the happiness science movement, particularly as a guiding aim of individual decision-making and public policy interventions.
Psychological Theory and the Illusion of Scientific Prediction
Stan B. Klein
The attempt of empiricist psychology to achieve scientific respectability through reliance on quantification is deeply flawed. Not only does it come at the expense of the phenomena, which, in the study of the mind, must reference subjectivity, but it is incommensurate with the basic scientific principles on which it claims to operate. Specifically, psychological theory typically cannot support prognostication beyond the binary opposition of “effect present/effect absent.” Accordingly, the “numbers” assigned to experimental results often amount to affixing names (e.g., more than, less than) to the members of an ordered sequence of outcomes. This, I contend, is one reason why psychologists find it difficult to discriminate between competing theories: without a well-specified theory capable of enabling precise and detailed quantitative prediction, inferring underlying mental mechanisms from experimental outcomes becomes a difficult, if not impossible, task.
“Looking After Yourself Is Self-Respect”: The Limits and Possibilities of Men’s Care on a Night Out
Tristan Duncan, Steven Roberts, Karla Elliott, Brittany Ralph, Michael Savic, Brady Robards
Notions of masculinity have played a central role in social and cultural research on men’s drinking events. Within this context, masculinity is regularly called on to explain the problematic disparities that mark men’s alcohol consumption, including men’s disproportionate involvement in drinking and a range of alcohol-related harms. More recently, however, researchers have begun to emphasize men’s drinking events as sites of care and support, leading some to suggest that men’s drinking masculinities are evolving in affirmative and health promoting ways. While unsettling the tendency of scholars to problematize men’s drinking masculinities, foregrounding the possibilities of men’s care potentially obscures its complexities and constraints. In this paper, we are concerned to critically re-examine the relationship between masculinity, care, and events of men’s alcohol consumption. Where some authors have positioned men’s care as an innate or uncomplicated good, we draw on a feminist ethics of care approach to explore its complexities, constraints, and exclusions. Through focus group discussions with 101 men, our analysis describes how ideals of masculine autonomy emerged through men’s accounts of drinking events, fundamentally shaping the constitution, practice, and possibilities of care. For the men in our study, the valorization of autonomy fostered ambivalence and tension around care, hindering their capacity as care givers and receivers. In turn, opportunities and accountability for care were overlooked, avoided, or displaced onto women. By highlighting the complexity of men’s care, our account complicates existing scholarship on men’s drinking while also gesturing toward new avenues for public health practice. We conclude by outlining how a more concerted focus on care may be integrated into public health policy, research, and programming and, in the process, contribute to the promotion of more health affirming and ethical modes of masculinity.
“Blurring the Line”: Intoxication, Gender, Consent, and Sexual Encounters Among Young Adults
Geoffrey Hunt, Emile Sanders, Margit Anne Petersen, Alexandra Bogren
Social concern about sexual practices and sexual consent among young adults has increased significantly in recent years, and intoxication has often played a key role in such debates. While many studies have long suggested that alcohol plays a role in facilitating (casual) sexual encounters, intoxication has largely either been conceptualized as a risk factor, or researchers have focused on the pharmacological effects of alcohol on behaviors associated with sexual interaction and consent. To date little work has explored how young adults define and negotiate acceptable and unacceptable levels of intoxication during sexual encounters, nor the ways in which different levels of intoxication influence gendered sexual scripts and meanings of consent. This paper explores the latter two research questions using data from 145 in-depth, qualitative interviews with cisgender, heterosexual young adults ages 18–25 in the San Francisco Bay Area. In examining these interview data, by exploring the relationship between intoxication and sexual consent, and the ways in which gender plays out in notions of acceptable and unacceptable intoxicated sexual encounters, we highlight how different levels of intoxication signal different sexual scripts. Narratives about sexual encounters at low levels of intoxication highlighted the role of intoxication in achieving sexual sociability, but they also relied on the notion that intoxicated consent was dependent on the social relationship between the partners outside drinking contexts. Narratives about sexual encounters in heavy drinking situations were more explicitly gendered, often in keeping with traditionally gendered sexual scripts. In general we found that when men discussed their own levels of intoxication, their narratives were more focused on sexual performance and low status sex partners, while women’s and some men’s narratives about women’s levels of intoxication were focused on women’s consent, safety, and respectability. Finally, some participants rely on “consent as a contract” and “intoxication parity”—the idea that potential sexual partners should be equally intoxicated—to handle relations of power in interpersonal sexual scripts. Since these notions are sometimes deployed strategically, we suggest that they may serve to “black-box” gendered inequalities in power between the parties involved.
East Asian Science, Technology & Society
COVID-19 Exceptionalism: Explaining South Korean Responses
Choon Key Chekar & Hyomin Kim
COVID-19 has presented challenges across the globe that led to a number of shared lessons to be learnt. Yet, we are inundated with comparative accounts that characterize national pandemic responses as inherent and unique to certain nation states, which, we argue, led to COVID-exceptionalism. This article challenges “cultural” explanations of South Korea’s “successful” responses to COVID-19 crisis. The popular narrative has been that Korea’s cluster-based mitigation strategy was sustained by rigorous contact tracing and mass testing systems, and this was made possible by three distinctive elements of pandemic preparedness: 1) Korean “culture” of normalizing face-covering, 2) Korean citizens’ consensus of prioritizing public health to privacy, and 3) Korea’s IT infrastructure enabling efficient digital contact tracing. By debunking the three myths, we demonstrate why neither the Asian “authoritarian advantages” thesis nor the counter-argument of “Asian civility” adequately captures the reality of Korea’s reaction to the COVID pandemic. The ways in which risks are conceptualized as manageable objects produce particular modes of allocating responsibilities for risk mitigation, when dealing with a relatively unknown virus. COVID-exceptionalism may cause not only the issue of reinforcing “(East) Asian”/“Western” stereotypes, but also other problems such as implicitly granting political impunity to those responsible for coordinating COVID-19 responses.
Some Elements of the Regime of Management of Irrelevance in Science
Fabrício Monteiro Neves
In contexts of scientific production deemed peripheral, knowledge produced is depicted in a condition of inferiority relative to that produced in other contexts; the daily practice of science is then guided by values and procedures, be they conscious or not, of peripheralization. This research note discusses the constitution, reproduction and generalization of peripheralization into what I call a regime of management of irrelevance in science: a scientific process with its own pragmatic and value content, whose elements will be presented in this work. These elements were identified during field research in laboratories and interviews with key interlocutors (research leaders) of biotechnology research teams in Brazil. What matters here is instead of taking the center/periphery dichotomy as an objective structure of the scientific system—a common approach in science and technology studies—it is shown as expecta-tions with practical repercussions.
Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine
The 2009 H1N1 pandemic, vaccine-associated narcolepsy, and the politics of risk and harm
Venla Oikkonen
The article traces the emergence of a new type of vaccine injury—vaccine-associated narcolepsy—following immunization with Pandemrix vaccine during the 2009 H1N1 pandemic in Europe. The article highlights the processual nature of vaccine injury: it shows how vaccine-associated narcolepsy emerges gradually as a recognized object through epidemiological and immunological studies as well as patient organizations’ public discourses. The article argues that despite public recognition of injury, vaccine-associated narcolepsy remains an incongruous object characterized by underlying tensions. These tensions take shape in relation to the history of vaccine injury debates, on the one hand, and the connection between vaccine-associated narcolepsy and non-vaccine-related narcolepsy, on the other. The article shows how these underlying tensions enable a range of mutually incompatible framings and mobilizations through which risk, harm, responsibility, and justice are claimed and negotiated.
Jennifer MacLellan
Birth narratives have been found to provide women with the most accessible and often utilised means for giving voice to their exploration of meaning in their births. The stories women tell of their birth come out of their pre- and post-experience bodies, reproducing society through the sharing of cultural meanings. I recruited a selection of 20 birth stories from a popular ‘mums’ Internet forum in the United Kingdom. Using structural and thematic analyses, I set out to explore how women tell the story of their body in childbirth. This project has contributed evidence to the discussion of women’s experiences of subjectivity in the discursive landscape of birth, while uncovering previously unacknowledged sites of resistance. The linguistic restrictions, sustained by the neoliberal control mechanisms on society and the self, act to shape the reality, feelings, and expressions of birthing women. Naming these silencing strategies, as I have done through the findings of this project, and celebrating women’s discourse on birth, as the explosion of birth stories across the Internet are doing, offer bold moves to challenge the muting status quo of women in birth. Reclaiming women’s language for birth and working to create a new vocabulary encapsulating the experiences of birthing women will also present opportunities for the issue of birth and women’s experiences of it to occupy greater political space with a confident and decisive voice.
Patient-centered care in Russian maternity hospitals: Introducing a new approach through professionals’ agency
Ekaterina Borozdina, Anastasiia Novkunskaya
The article relies on qualitative research methods to investigate how by the means of institutional work healthcare professionals introduce patient-centered care in Russian maternity hospitals. Post-socialist healthcare is commonly viewed in academic literature as a highly centralized and state-controlled domain, where autonomy and agency of both patients and practitioners are significantly restricted. Our research contributes empirically to scholarly debate by questioning this assumption and by providing shreds of evidence of healthcare professionals’ ground-level initiatives. On the conceptual level, we add to the discussion about the dynamic interrelation between institutional change, clients’ demands, and the transformation of professionals’ position. We argue that neoliberal reforms in Russian healthcare have created institutional uncertainty which is strategically used by professionals to expand the scope of their workplace autonomy and to develop patient-centeredness as an institutional innovation. However, our research shows that the resulting model of patient-centeredness contributes to empowering healthcare practitioners, rather than to increasing patients’ participation in decision-making.
Legitimating complementary therapies in the NHS: Campaigning, care and epistemic labour
Kathy Dodworth, Ellen Stewart
Questions of legitimacy loom large in debates about the funding and regulation of complementary and alternative medicine (CAM) in contemporary health systems. CAM’s growth in popularity is often portrayed as a potential clash between clinical, state and scientific legitimacies and legitimacy derived from the broader public. CAM’s ‘publics’, however, are often backgrounded in studies of the legitimacy of CAM and present only as a barometer of the legitimating efforts of others. This article foregrounds the epistemic work of one public’s effort to legitimate CAM within the UK’s National Health Service: the campaign to ‘save’ Glasgow’s Centre for Integrative Care (CIC). Campaigners skilfully intertwined ‘experiential’ knowledge of the value of CIC care with ‘credentialed’ knowledge regarding best clinical and managerial practice. They did so in ways that were pragmatic as well as purist, reformist as well as oppositional. We argue for legitimation as negotiated practice over legitimacy as a stable state, and as labour borne by various publics as they insert themselves into matrices of knowledge production and decision-making within wider health care governance.
Journal of the Royal Anthropological Institute
An ethics of enchantment: forming affect and information in experimental paediatric medicine
Courtney Addison
Science and medicine have been cast as disenchanted arenas of modernity, even as scholars have illustrated the many enchantments of everyday life. Taking these conversations into the context of experimental paediatric medicine, I explore the dis/enchantments produced through the research ethics systems that govern interactions between medical practitioners and patients’ families. Research ethics enact forms of disenchantment, aiming to produce the informed patient-subject who can knowingly submit to the unknowns of experimental medicine. However, by following one young patient’s emotive disruption of the consent process, I suggest that we instead consider an ethics of enchantment: one that recognizes the affective logics of patienthood alongside the informatic. Elaborating how ethical practice is both institutionally structured and interpersonally improvised, I develop key conversations from the anthropology of ethics, and highlight the interplay of enchantment and disenchantment that constitutes modern medical subjects.
Medical Anthropology Quarterly
Fat Is All My Fault: Globalized Metathemes of Body Self-blame
Sarah Trainer, Cindi SturtzSreetharan, Amber Wutich, Alexandra Brewis, Jessica Hardin
Norms valorizing not-fat bodies appear to have spread around the world, combined with a globalizing belief that thinness is the result of individual management of self and hard work. We examine themes of blame and felt responsibility for weight and “fat” in four distinct geographic and cultural locations: peri-urban Georgia, United States; suburban Osaka, Japan; urban Encarnación, Paraguay; and urban Apia, Samoa. Use of a novel metatheme approach that compares and contrasts these four distinct places characterized by different population-level prevalences of obesity and by specific cultural histories relevant to body norms and ideals provides a flexible toolkit for comparative cross-cultural/multi-sited ethnographic research. We show that self-blame, marked by an articulated sense of individual responsibility for weight and a sense of failing in this responsibility, is present in every field site, but to varying degrees and expressed in different ways. [fat, obesity, metatheme, stigma, self-blame]
A Eulogy for Jane Robinson: A Social Autopsy of Uncare Policies
Jessica M. Mulligan, Madeline Weil
Shortly after losing her health insurance in 2018, Jane Robinson died of a treatable respiratory infection. This article argues that Jane’s death occurred at the nexus of two different approaches to care: the necropolitics of uncare and the micropolitics of generative care labor. Both of these approaches to care increased Jane’s health and social vulnerability, in turn quickening her death. We adopt the necropolitics of uncare framework to identify and name the harmful policies and attitudes of disregard that control access to life saving medical care. In the micropolitics of care in Jane’s life, she became the safety net for others, which left little over when her health began to deteriorate. This social autopsy reveals that her care networks were insufficient to undo the uncare enshrined in state policy. Jane’s unnecessary death foreshadowed the excess mortality that the United States has experienced from COVID-19.
“Housing Is Health Care”: Treating Homelessness in Safety-net Hospitals
Christoph Hanssmann MPH, PhD, Janet K. Shim MPP, PhD, Irene H. Yen MPH, PhD, Mark D. Fleming PhD, Meredith Van Natta PhD, Ariana Thompson-Lastad PhD, Maryani Palupy Rasidjan PhD, Nancy J. Burke PhD
As medicine integrates social and structural determinants into health care, some health workers redefine housing as medical treatment. This article discusses how health workers in two U.S. urban safety-net hospitals worked with patients without stable housing. We observed ethnographically how health workers helped patients seek housing in a sharply stratified housing economy. Analyzing in-depth interviews and observations, we show how health workers: (1) understood housing as health care and navigated limits of individual care in a structurally produced housing crisis; and (2) developed and enacted practices of biomedical and sociopolitical stabilization, including eligibilizing and data-tracking work. We discuss how health workers bridged individually focused techniques of clinical care with structural critiques of stratified housing economies despite contradictions in this approach. Finally, we analyze the implications of providers’ extension of medical stabilization into social, economic, and political realms, even as they remained caught in the structural dynamics they sought to address.
Leandro David Wenceslau, Francisco Ortega
Mental illness approaches in public health have resulted in controversies around the adequacy of interpretative and therapeutic models. These controversies engage polarized debates amid understandings of mental illnesses either as brain disorders or as socioculturally determined entities. Aiming to investigate how mental health care is implemented in a Latin American metropolis, we conducted an ethnographic study of the approach to depression in a primary care unit in Rio de Janeiro between 2016 and 2017. “Life” emerged from our fieldwork as the main local category for understanding the experiences of patients with depressive symptoms and the work of reengagement performed by family physicians. With this investigation, we seek to provide insights into an approach to mental illness in primary health care that moves away from polarized interpretive frameworks and remains open to the singularities of patients’ experiences of suffering.
The Woman Who Testified: The Pentecostalization of Psychiatry in Yaoundé, Republic of Cameroon
Elizabeth Durham
This article takes a case study approach to the predominance of Pentecostalism, a Christian movement emphasizing conversion and testimony to divine grace, among patients at Sommeil Psychiatric Hospital in Yaoundé, Republic of Cameroon. I argue that certain patients’ desire to serve as témoignage (French) or “testimony” (English) to life before and after Sommeil—to the efficacy of biomedical psychiatry—indicates a pattern in which patients drew on their Pentecostal affiliation to navigate psychiatric treatment. Grounded in 24 months of fieldwork with patients and families and hospital staff, I contend that patient experiences of treatment imperfectly paralleled prior and ongoing experiences of Pentecostalism, including cultivation of the desire to convert and testify. Taking this cultivation of desire as a form of subject-making, I conceptualize the entanglement of religious and therapeutic subjectivities at Sommeil as a patient-driven “Pentecostalization” of psychiatry, which offers patients plural possibilities and timeframes of health.
Datafied Pregnancies: Health Information Technologies and Reproductive Governance in Turkey
Seda Saluk
Since the early 2000s, Turkey has been going through a dynamic period of health reforms where the global push toward health statistics has converged with the state’s pronatalist concerns over declining birth rates. Reproductive behaviors are now monitored via health information technologies such as centralized databases. The World Health Organization and the Turkish Ministry of Health celebrate these technologies as essential steps toward evidence-based health care delivery. The everyday realities of these technologies, however, are more complicated, especially for nurses and their patients. Drawing on ethnographic fieldwork in state-run health clinics in Istanbul, this article demonstrates how these data-driven health technologies build on nurses’ gendered care labor and increase surveillance on urban poor and/or ethnoracially minoritized communities. In doing so, I argue that the datafication of reproduction operates as a particular mode of “reproductive governance” (Morgan and Roberts 2012) that reflects and reproduces existing social hierarchies and inequalities.
Viral Entanglements: Bodies, Belonging and Truth-claims in Health Borderlands
Ben Kasstan
This article contributes to anthropological debates surrounding borderlands and biosecurity by tracing the multiple pursuits of protection that emerge between the state and minorities during infectious disease outbreaks. Drawing on an ethnographic study of child health in Jerusalem following epidemics of measles and COVID-19, the article demonstrates how responses to public health interventions are less about compliance or indiscipline than a competing pursuit of immunity to preserve religious lifeworlds. The voices of Orthodox Jews are situated alongside printed broadsides that circulated anonymous truth-claims in Jerusalem neighborhoods. These broadsides cast state intervention against historical narratives of deception and ethical failures. Borderland tensions, like a virus, mutate and influence responses to authority and biosecurity, and they reconfigure vernacular entanglements of religion, state, and health. The article encourages anthropologists to consider responses to public health interventions and non-vaccination beyond a COVID-19 silo, as part of situated relations between states and minority populations.
Alien Guts? Exploring Lives of and with Irritable Bowels in Denmark
Camilla Brændstrup Laursen, Lotte Meinert, Lone Grøn
Irritable bowel syndrome (IBS) is a health challenge in Denmark, especially among young and middle-aged people. It raises questions about control, alienation, responsiveness, and responsibility in relation to the body in welfare societies. Based on long-term ethnographic fieldwork, this article explores how young and middle-aged Danes diagnosed with IBS inhabit and relate to their bodies. Previous studies have described how IBS patients experience their bodies to be unreliable, unpredictable, and embarrassing. Drawing on phenomenological explorations of bodily alterity, we argue that the gut transforms into “an other” for the afflicted. It is involved in a restless process in which it sometimes emerges as “me,” sometimes as “not-me,” and sometimes as “not-not-me.” People attempt to theorize and control their gut trouble, yet it continuously escapes their grasp. How do people live with and care for such an alienness-within? Does an IBS diagnosis make bodies feel more or less alien?
Disability, relationship, and the negotiation of loss
Brian Watermeyer, Victor Mckinney
Oppressive stereotypes of invalidity and tragedy have positioned loss and grieving as contested issues in the field of disability studies. Ascriptions of ‘denial’ are rejected by many disabled people, as a reductive medicalisation of their lived reality. For these and other reasons, this paper asserts that disabled people are afforded limited or awkward social spaces for grief, be it to do with social positioning, embodiment, or any other aspect of human experience. This is significant because grieving may have an important relationship with political mobilisation, both personal and collective. The paper presents autoethnographic material from the life of the second author, who has lived with quadriplegia for more than three decades. Using ideas from critical psychoanalysis it traces how political, relational and intrapsychic mechanisms constrain and sanction his expression of feelings of loss, contributing to a relational predicament of melancholic suspension, analogous to that attributed to subordinated racial groups. Here, one is forced to strive for assimilation into an unattainable, ideal social role, while simultaneously being alienated from one’s inner experience, with implications for both creativity and personal power. The paper concludes that, paradoxically, stereotypes are countered not by dissociation from grief, but rather the claiming of it.
Loren Gaudet
Dominant understandings of genre-as-form have limited our abilities to perceive health awareness: we recognise, and expect, health awareness campaigns from governmental and non-profit agencies. Inversely, we often fail to recognise, or name, health awareness as such when it comes from other sources, such as commercial marketing or advertisements for products. However, rhetorical genre theory centres attention on action brought about by form and, as such, rhetorical genre provides tools for recognising instances of health awareness often escape our notice. One such example is critical-illness insurance marketing. In this article, I argue that critical-illness insurance marketing draws on the same appeals found in cancer awareness campaigns. Through a comparative analysis, I show that Colorectal Cancer Canada and critical-illness insurance marketing represent unpreparedness, rather than cancer, as the exigence, or the problem to be overcome through public discourse, and as such, share a genre of what I call ‘health awareness as preparedness’.
From blocked flows to suppressed emotions: the life of a trope
Stewart Justman
Internal blockages and build-ups cause disease: traditionally, this principle seemed intuitive both to professionals and the laity, explained conditions as diverse as melancholy and scurvy (among many others), and justified the use of evacuative treatments to get rid of noxious matter. With the collapse of humoral medicine and the establishment of the concept of specific causation, one might have expected time-honoured tropes of obstruction to die off. They did not die off, but moved with the times and adapted to new conditions. Emphasis swung from the noxious character of retained substances to the harms of suppressed urges and emotions—harms including disabling maladjustments as a result of sexual inhibition, and cancer as a result of emotional inhibition. In both cases the causal mechanisms resemble traditional blockages. Theories of noxious inhibitions or psychological blocks, which have a familiar and perhaps even intuitive sound because they have so much history behind them, can easily lead patients into fanciful methods of prevention and treatment.
‘The body says it’: the difficulty of measuring and communicating sensations of breathlessness
Alice Malpass, Coreen Mcguire, Jane Macnaughton
Breathlessness is a sensation affecting those living with chronic respiratory disease, obesity, heart disease and anxiety disorders. The Multidimensional Dyspnoea Profile is a respiratory questionnaire which attempts to measure the incommunicable different sensory qualities (and emotional responses) of breathlessness. Drawing on sensorial anthropology we take as our object of study the process of turning sensations into symptoms. We consider how shared cultural templates of ‘what counts as a symptom’ evolve, mediate and feed into the process of bodily sensations becoming a symptom. Our contribution to the field of sensorial anthropology, as an interdisciplinary collaboration between history, anthropology and the medical humanities, is to provide a critique of how biomedicine and cultures of clinical research have measured the multidimensional sensorial aspects of breathlessness. Using cognitive interviews of respiratory questionnaires with participants from the Breathe Easy groups in the UK, we give examples of how the wording used to describe sensations is often at odds with the language those living with breathlessness understand or use. They struggle to comprehend and map their bodily experience of sensations associated with breathlessness to the words on the respiratory questionnaire. We reflect on the alignment between cognitive interviewing as a method and anthropology as a disciplinary approach. We argue biomedicine brings with it a set of cultural assumptions about what it means to measure (and know) the sensorial breathless body in the context of the respiratory clinic (clinical research). We suggest the mismatch between the descriptions (and confusion) of those responding to the respiratory questionnaire items and those selecting the vocabularies in designing it may be symptomatic of a type of historical testimonial epistemic injustice, founded on the prioritisation of clinical expertise over expertise by experience.
Talking it better: conversations and normative complexity in healthcare improvement
Alan Cribb, Vikki Entwistle, Polly Mitchell
In this paper, we consider the role of conversations in contributing to healthcare quality improvement. More specifically, we suggest that conversations can be important in responding to what we call ‘normative complexity’. As well as reflecting on the value of conversations, the aim is to introduce the dimension of normative complexity as something that requires theoretical and practical attention alongside the more recognised challenges of complex systems, which we label, for short, as ‘explanatory complexity’. In brief, normative complexity relates to the inherent difficulty of deciding what kinds of changes are ‘improvements’ or, more broadly, what is valuable in healthcare. We suggest that explanatory and normative complexity intersect and that anyone interested in healthcare improvement needs to be sensitive to both. After briefly introducing the idea of normative complexity, we consider some contrasting examples of conversations, reflecting on how they do and might contribute to healthcare quality. We discuss both conversations that are deliberately organised and facilitated (‘orchestrated conversations’) and more informally occurring and routine conversations. In the first half of the paper, we draw on some examples of orchestrated and routine conversations to open up these issues. In the second half of the paper, we bring some more theoretical lenses to bear on both conversations and normative complexity, summarise what we take to be the value of conversations and draw together some of the implications of our discussion. In summary, we argue that conversations can play a crucial role in negotiating the normative complexity of healthcare quality improvement because of their capacity to hold together a plurality of perspectives, to contribute and respond to emergence and to help underpin institutional conditions for empathy and imagination.