Somatosphere welcomes you to the April edition of “In the Journals.” Scroll through our monthly round up of new research across anthropology, STS and social science journals.
The will to speak out: Medical anthropologist and patient in times of COVID-19 in Peru
Carmen J. Yon
Using autoethnographic research, I analyze the experience of being an oncology patient during the COVID-19 pandemic in Lima, Peru, the country with the highest number of COVID-19 deaths per million people worldwide. I reflect on my own fears and decisions related to medical treatment and work, since they organized most of my daily life and were significantly impacted by the public health emergency. These experiences were shaped by global and local inequalities in labor conditions as well as access to healthcare facilities and systemic therapies. I speak out as a “vulnerable participant-observer” from my social position as a lower-middle-class working woman, contract university professor, and medical anthropologist facing a still stigmatized disease in her country.
Good Injuries: Embodiment, Temporality, and Collectivity in US Class Conflict
David Flood
At a festival in the rural southeastern United States devoted to music and off-road vehicles, white working-class people frequently seem to court situations of predictable harm. More precisely, injury and the risk of injury in this context appear as unintentional but acceptable outcomes in the pursuit of proper conditions for good sociality, and in fact often come to index ethical social behavior for participants—a phenomenon I describe as injuries of prosocial care or “good injuries.” This striking set of attitudes points towards a fundamental and often-misunderstood aspect of class and political conflict in the contemporary US: the entanglement of class with deep-seated beliefs about the boundaries and demands of ethical intersubjectivity, or what it means to be a good person with respect to other people. I examine these classed ethical stances with particular attention to ideas about temporality and embodiment, in a situation where the boundary between care and harm is porous and contingent.
The Challenges of Mourning: Nursing Homes Betwixt and Between during the COVID-19 Pandemic
Sarah Frieman, Paige Gavin, Roy Richard Grinker
Elderly residents in long-term care facilities were one of the populations in the United States hit hardest by the COVID-19 virus. Their deaths highlighted long-standing systemic problems and unmet expectations of the nursing care industry, and the ways social exclusion exacerbated the suffering of residents and their family members. This article, part of a larger collaborative study of COVID-19 death, draws upon ethnographic interviews on death and dying, including an analysis of a podcast series on grief, to suggest that the predominant focus in the anthropology of death—mainly, funeral rites and memorialization—can mask the importance of social practices and institutional constraints prior to death. We argue that the disjunction between the normative expectation of loved ones to be present with and provide affective care to a dying relative in the nursing home, and the experience of being isolated from them, resulted in a disrupted period of transition from life to death; indeed, the discourses we examine reflect uncertainty about how to periodize that transition in the absence of interpersonal interaction with relatives living in long-term care facilities. Finally, we explore how the absence of a ritual process before death—an absence made more legible by the pandemic—complicates old binaries, such as melancholia/mourning, grief/mourning, and grief/closure in social experience. The pandemic challenges us to rethink such divisions and definitions.
Amy E. Stambach, Joseph C. Pesambili
Understanding the emotional responses to public health interventions provides essential insights for building trust between health responders and communities. This study examines COVID-19 vaccine hesitancy in South Africa and Tanzania during the Omicron wave (January–October 2022). It analyzes participants’ fear and mistrust of public health vaccination protocols in the context of a long history of Western medical experimentation on African bodies. Ethnographic research reveals that vaccine hesitancy emerges from participants’ suspicions that science and donor agencies unfairly and immorally use their wealth and hidden political connections to compel African governments to accept foreign agencies’ healthcare interventions. Furthermore, participants indicate that religion and rituals serve as “antidotes” to COVID-19. Exploring the public’s suspicion surrounding COVID-19 vaccination contributes to anthropological scholarship seeking to understand the gap between people’s knowledge and actions. Suspicions about the COVID-19 vaccine are part of a global atmosphere of vaccine hesitancy and are not unique to Africa. This study’s focus on citizens’ perspectives directs public health providers’ and analysts’ attention to the role of emotions in connecting regulatory knowledge with prescriptive practice.
Culture, Medicine and Psychiatry
Cristian Montenegro
In Chile, a long and oppressive military regime (1973–1990) dismantled emergent initiatives for the deinstitutionalisation of psychiatric care, imposing a neoliberal constitution that opened public services to market forces and limited the state’s role in health and social care. After being associated with communism and socialism, community-based mental health work was banned, and socialist psychiatrists were silenced through torture or exile. However, some therapeutic initiatives persisted, such as the “Protected Commune” (PC) initiative within the El Peral psychiatric asylum. The PC attempted to mimic a real town inside the asylum’s gated perimeter. It featured an ecumenical chapel, a school, and various “council” departments like recreation, education, waste, economy, and health. Paths received names, wards became districts, and patients and workers were assigned new, democratic roles, all while the authoritarian regime entirely controlled the “outside” world. The initiative ceased with the return of democracy in 1990. Deemed an eccentric and negligible episode, the PC is often seen as an interruption to the radical community-based experiences of the pre-dictatorial era. Drawing on archival research and oral history interviews with participants, this paper examines how the PC harnessed the notion of community to navigate the complex socio-political landscape of the dictatorship. Differing from established accounts of the political uses of psychiatry under authoritarianism, the study positions the PC as a prism for understanding the contradictory ways in which the idea of ‘community’ has been able to transcend radically opposed social and political regimes, becoming a core feature in the vocabulary of mental health reform, despite its ambiguities.
Vaishali V. Raval, Baiju Gopal, Pankhuri Aggarwal, Miriam Priti Mohan, P. Padmakumari, Elizabeth Thomas, Aaron M. Luebbe & M. Cameron Hay
Although the need to train clinicians to provide effective mental health care to individuals from diverse backgrounds has been recognized worldwide, a bulk of what we know about training in cultural competence (CC) is based on research conducted in the United States. Research on CC in mental health training from different world populations is needed due to the context-dependent nature of CC. Focusing on India and USA, two diverse countries that provide complementary contexts to examine CC, we explored graduate students’, practicing clinicians’, and faculty members’ perspectives regarding CC training they received/provided and future training needs using mixed-methods. The data were collected using focus groups (n = 25 groups total: 15 in India, 11 in USA), and a survey (n = 800: 450 in India, 350 in USA). Our data highlight the salient social identities in these countries, and the corresponding constituents of CC training. Participants in India described a practical emphasis to their CC training (e.g., learning about CC through life experiences and clinical practice experiences) more so than through coursework, whereas participants in USA described varying levels of coursework related to CC along with practice. Participants in both countries considered enormity of CC as a challenge, while those in the US also identified CC training limited to a white, straight, male perspective, hesitancy in engaging with diversity topics, and limited time and competence of the faculty. Strengths of CC training in India and USA are mutually informative in generating recommendations for enhancing the training in both countries.
Medical Returnees: Somali Canadians Seeking Psychosocial and Spiritual Care in East Africa
Mohamed Ibrahim
The refugee experience has been associated with increased rates of psychosocial challenges. At the same time, evidence suggests that those who resettled in Western countries including Canada underutilize the formal mental health services in these countries. The low uptake has been attributed to barriers such as language, complexity of the health systems, and differing explanatory models of illness. The same is true for Somali refugees in the West. Studies suggest that Somali refugees prefer spiritual healing for psychosocial illness and that some return to East Africa for such healing. However, little is known about Somali Canadian’s experiences with the Canadian mental health services and transnational health seeking. The study aimed to understand psychosocial challenges faced by Somali Canadians, their health seeking behaviors, and service utilization. Because some sought psychosocial services outside the country, fieldwork was conducted in Kenya to provide new evidence on transnational healing services. Ethnographic fieldwork and in-depth interviews were utilized. Thirty-seven interviews of about an hour each were undertaken. Fieldwork in Nairobi focused on spiritual healing centers and medical clinic. The findings reveal important findings regarding psychosocial challenges experienced by participants. It discusses psychosocial illnesses as variedly experienced, challenges with accessing Canadian healthcare services, and seeking culturally appropriate services in East Africa. The study highlights participants and their families struggle with psychosocial distress, the challenges of accessing culturally appropriate services within Canada, the role of spiritual healers and the existence of transnational health seeking practices.
Gitte Vandborg Rasmussen, Per Hove Thomsen, Sanne Lemcke & Rikke Sand Andersen
With this article, we set out to introduce a dynamic and expansive notion of what it means to live with ADHD. Based on ethnographic fieldwork among families living with ADHD in Denmark and inspired by Thomas Fuchs’ Eigenzeit [own-time], we forward the notion of “own-time space” as a means of examining the dynamic nature of ADHD. Own-time spaces connect the lived experience of ADHD and time to space. Own-time spaces are situations where the presence or absence of others, and cultural expectations related to timing or tempo enter complex, rhythmic interactions in ways that allow ADHD symptoms to fade into the background. We suggest that own-time spaces are characterized by space, rhythm, and imagistic thinking, and add to our existing knowledge of shielding as a therapeutic effort in ADHD treatment. With own-time space we emphasize that shielding is not just a matter of place or protection from stimuli, but also involves temporal, meaning-making, and relational dimensions. Own-time spaces are dynamic environments where individuals can navigate and negotiate their own rhythms and temporalities and foster a sense of agency and thriving.
Stigma, Chronicity and Complexity of Living with Long Covid in Kenya
Edna N. Bosire, Lucy W. Kamau, & Emily Mendenhall
Living with a complex chronic illness can be debilitating as people are constantly negotiating new bodily symptoms, constant treatment-seeking, readjustments to identity and routine. In Kenya, millions of people were infected with COVID-19 and surveillance of Long Covid remains limited. We interviewed 23 Kenyans seeking medical care or social support for Long Covid to understand their lived experiences. Participants reported limited access to healthcare; they also described symptoms including disabling fatigue, memory inconsistencies, and acute pain in the muscle, gut, or tissues. However, we found a unique chronic illness stigma—where people did not want to reveal that they had Long Covid because they feared of being perceived to have HIV. Participants reported feeling dismissed or disbelieved by family, friends, and clinicians and turned to online social support groups like Facebook. While some appreciated clinicians who used experimental treatment, others expressed trepidation when treatments caused them to feel sicker. The chronicity and debilitating symptoms of Long Covid may cultivate a unique stigma around the condition and point to a normalization of Long Covid with other chronic conditions, despite limited treatments. A broader understanding of Long Covid symptoms and care must be expanded to include destigmatizing the condition in Kenya.
Angela Cifuentes, Esteban Radiszcz, & Francisco Ortega
The expansion of mental health discourses within the university has attained global relevance over the course of the past decade. This article focuses on the Chilean case, exploring the diagnostic uses and affective negotiations on campus. The findings presented are part of a broader qualitative research that examined the interrelations between the neoliberal restructuring of the Chilean university, the modes of anxious affection among students, and the strategies implemented by university mental health services. We argue that, although the neoliberalization of higher education in Chile has driven normative and subjective transformations, the phenomenon of university mental health involves students’ agency. Our findings demonstrate that, for both mental health professionals and students, university life serves as a “catalyst of anxiety.” Despite the existence of individualized diagnostic conceptions, they also allude to the inequalities inherent in the Chilean educational and health systems. We state that diagnostic uses involve strategies that students and professionals deploy to respond to the demands of adjustment/integration to universities, and even facilitate the possibility of re-imagining futures in the face of experiences of failure. Diagnostic uses engage affective negotiations in everyday situations, thereby configuring university life as a dynamic environment, subject to potential and permanent transformations.
Stefan Ecks
Myanmar has experienced decades of military dictatorship, civil wars, religious violence, economic crises, and natural disasters. While these conditions would suggest very high rates of depression and anxiety, government statistics report an exceptionally low depression rate of 0.00006%, compared to the global rate of 3.4%. This study combines analysis of epidemiological data, ethnographic observation of clinics, and in-depth interviews. I argue that Myanmar’s low depression rates cannot be explained by the usual arguments about treatment gaps, lack of providers, or medication accessibility. Instead, I suggest that the military regime suppresses depression because it sees it as a form of political protest. While conditions like schizophrenia are readily diagnosed and treated as “purely biological,” mood disorders are suspect expressions of dissent. Through living value theory (LVT), I explore health as a process of multimediation. The dictatorship’s suppression of depression emerges as the strategic muting of medical interventions in favor of amplifying non-medical remediations.
Yan Zhang
Diagnostic labels aim to classify individuals for treatment in clinical settings. Yet, relatively little attention has been paid to the troubling messaging when a diagnostic label itself carries severe stigma and how relevant stakeholders react to it. Based on twenty-month fieldwork in Shanghai, this article analyzes the adverse effects of the diagnostic label chidai that is used to describe dementia and the relevant stakeholders’ responses to the labeling threat. It focuses on the moral context in which the stigma related to dementia unfolds, the power of the medical term chidai in activating stigma, and the efforts that are put into formulating a stigma-free public health message. I found that the label chidai is not only an instance of excess stigma—that discredits one’s cognitive capability and deprives one’s moral status—but also an instrument used by medical authorities and governments to protect public safety. The debates on the diagnostic labels are meant to reshape new understandings of dementia and to challenge the power of medical authorities who often neglect humanity and care when they form their judgments and interpretations of disease. This paper contributes to the studies of stigma and dementia activism by highlighting the power of diagnostic labels.
East Asian Science, Technology and Society
How Acupuncture Practice is Shaped in Contemporary Taiwan
Pascale Schmied
With the establishment of a Nationalist government in Taiwan in 1949, acupuncture started to undergo a progressive institutionalization into a healthcare system dominated by biomedicine. From the creation of a specific Chinese Medicine course at the China Medical University in 1966, to the reimbursement for acupuncture treatment under the National Health Insurance system in 1995, pressure coming from institutions to standardize acupuncture practice became stronger and influenced the way practitioners used their needles.
This article draws on fieldwork and interviews conducted in Taiwan between 2007 and 2014 and focuses on acupuncture needling techniques to highlight the changes that affect the transmission of knowledge and the clinical practice environment of acupuncture. I show that the inclusion of acupuncture treatments in the National Health Insurance system led to a commoditization of the practice and to a degree of deskilling of the practitioner. Embedded in a globalized trend toward standardization, in a system that encourages efficiency and accountability, the finer needling skills of acupuncture are at risk of disappearing.
Ontology and Acupuncture: East Asian Analogism and an Emerging Acupuncture Method in South Korea
Taewoo Kim
If the body is not seen as a combination of cells, DNA, and proteins in East Asian medicine, the logic of treatment will differ from that of biomedicine. Descola’s monumental work on plural ontologies and their connectedness of social practices advocates ethnographic investigations of how the plurality of body-ontologies are overlapped with medical practices of various medical traditions. Drawing on anthropological fieldwork on Korean medicine in South Korea, this study examines the ontological ground of acupuncture practice. It provides a case of an emerging new acupuncture method, Mind Acupuncture, in Korean medicine as an example of ontological anthropology of medicine. This study shows that a new acupuncture practice emerges not by discovering a new entity of the universal biomedical body, but by expanding and materializing the ontological network of East Asian medicine. This study foregrounds the significance of ontology, the undeniable premise of medical practice that is socially and historically situated.
Recast(e)ing Medicine in India: Contested Hierarchies of Expertise in Digital Primary Care
Sandra Bärnreuther
In this article, I examine a public-private partnership project in West Bengal, India, that trains and deploys people from marginalised castes as digital health workers in rural areas. Although digital technologies offer new opportunities for access to the medical sector, caste hierarchies inherent to the field persist, reinforcing and perpetuating caste-based inequities. This is evident in the division of labour, shaped by caste dynamics and justified through the distinction between professional knowledge and technical skill. The widely-used metaphors of the doctor—and by extension the software—as the mind, and the health workers as foot soldiers, rely on and further entrench long-standing hierarchies of expertise where privileged castes do knowledge work while marginalised castes literally do the footwork. Nevertheless, health workers actively challenge these hierarchies and foreground their creative contributions. While caste lives on in projects of ‘empowerment’, particularly through the limited and limiting imaginations of health workers’ structural position, health workers find ways to visibilise and value their labour and expertise. I argue that their assertions and aspirations may open up new possibilities for thinking about ‘empowerment’. Overall, recast(e)ing medicine implies that caste in the health sector is being simultaneously perpetuated and reimagined in ambivalent and partly contradictory ways.
Automating Dietary Expertise: The Challenge of Making a Food-Tracking App for Everyone
Giada Danesi, Tanja Schneider
Digitally tracking food and eating has become a widespread activity. Scholars in anthropology, sociology and science and technology studies have problematised the personal and social implications of dietary tracking and the metrification of food and eating. Metrification has contributed to the emergence of new types of relevant expertise and new experts of eating and health. This warrants in-depth research to better understand the forming, negotiation, establishment and effects of new expertise.
Drawing on a sociomaterial perspective, this article explores these questions by reflecting on the development of an automated dietary tracking and intervention app. The article focuses on seeking feedback on mock-ups and prototypes of the app from potential users and non-users in ‘go-alongs’ and interviews, and in focus groups. The analysis revealed that the delegation of dietary expertise to an automated system poses a challenge for many participants. They emphasised what is neglected in the process—including their dietary but also bodily and sociocultural expertise. Our study contributes to an understanding of how dietary tracking and delegating expertise to an automated system appeals to users whose food values align with metrics used in the app but also users who accept to delegate specific forms of care to the technology.
Klaus Hoeyer, Anne Hoeyen Munk, Sarah Wadmann
Psychiatric clinicians and managers increasingly use data to monitor the use of force on psychiatric patients. In this study, we describe how Danish authorities simultaneously emphasise a need for close data monitoring and tell a story of failure: rather than reducing force, they claim that data monitoring of mechanical restraint has simply replaced this type of force with other types. We show here how the official narrative of failure is based on highly selective data practices. It inadequately conveys the efforts of the psychiatric staff, with potentially negative implications for the development of clinical judgment. While the authorities and many clinicians support continued data monitoring, we argue a need to rethink the role of data in relation to force and to better appreciate how data practices affect understandings of expertise. We base our analysis on policy papers and official reports on monitoring practices in Denmark, secondary analysis of data from these monitoring practices, as well as observations from and qualitative interviews with clinical managers, administrators and clinicians. By engaging these policies and practices, we point to a need for a new form of anthropological engagement with the data politics currently shaping psychiatric expertise.
Reconfiguring Psy Expertise in the Digital Age: Two Cases from India
Claudia Lang
Mental health platforms and apps provide technologies and techniques for self-work, diagnosis, and management of everyday crises. Therapeutic interventions designed to work outside the clinic, they distribute and reconfigure psy expertise. Using the cases of a chatbot-based mental health app and a digital mental health platform, both developed in Bengaluru, India, this article ethnographically attends to new forms of expertise that emerge within digital mental health ecologies. What does it mean when software specialists, AI programmers, or conversational designers emerge as novel experts in mental health care, along with psychologists? How do they build on or depart from more conventional forms of expertise? How is psy expertise enacted in these spaces? Psy technologists, I argue, engage conventional psy expertise, even while establishing their psy technological expertise as alternative, sometimes even superior, ways of responding to emotional crises and mental distress. I first turn to the ways psy technologists conceive of mental health as a technical problem, reconfiguring mental health expertise. Next, I delineate some of the practices through which they enact expertise: engaging (and contesting) psychological expertise and conducting clinical trials. Finally, I investigate what it means to care for mental health digitally.
Magdalena Radkowska-Walkowicz et al.
Congenital adrenal hyperplasia (CAH) is a rare inherited disease that requires continuous home-based treatment. The increasing accessibility of medical information and the presence of an active online community—particularly a dedicated Facebook group—enable parents of children with CAH to become engaged participants in discussions about therapy and innovative solutions. Drawing on ethnographic research, this study explores the complex dynamics of medical decision-making and negotiation between parents and doctors. Key areas of contention include: 1. Medication dosage. 2. The use of cortisol pump technology. 3. The availability of emergency hydrocortisone injection kits. 4. Early genital surgery. While parents actively seek knowledge and challenge medical approaches, their influence on biomedical practices remains limited. The study argues that these negotiations, though often subtle and slow, contribute to changing treatment and become the part of the “logic of care”.
Wrodzony przerost nadnerczy (WPN) to rzadka choroba genetyczna, która wymaga ciągłego leczenia w domu. Coraz większa dostępność informacji medycznych i obecność aktywnej społeczności internetowej — w szczególności grupy na Facebooku — umożliwiają rodzicom dzieci z WPN angażowanie się w dyskusje na temat terapii i innowacyjnych rozwiązań. Opierając się na badaniach etnograficznych, w artykule pokazujemy złożoną dynamikę podejmowania decyzji medycznych i negocjacji między rodzicami a lekarzami. Kluczowe obszary negocjacji obejmują: 1. Dawkowanie leków. 2. Zastosowanie technologii pompy kortyzolowej. 3. Dostępność zestawów do awaryjnego wstrzykiwania hydrokortyzonu. 4. Wczesną operację narządów płciowych. Rodzice aktywnie poszukują wiedzy i kwestionują podejścia medyczne, niemniej ich wpływ na praktyki biomedyczne pozostaje ograniczony. W artykule pokazujemy, że negocjacje te przyczyniają się, choć subtelnie i powoli, do zmiany w podejściu do terapii i stają się częścią „logiki opieki”.
Parental Care as Infrastructure for Adults with Intellectual Disabilities in Norway
Jenny Frogner et al.
We explore the care work of parents in the lives of adults with intellectual disabilities in Norway. We theorize these parental contributions as a form of care infrastructure. Through their presence in the daily lives of the persons with intellectual disabilities as well as through maintenance work and repair work on welfare services, parents respond to unpredictable care provision in the welfare state. These efforts sometimes entail invention and result in new types of care structures, which we call “care pioneering.”
“Only the Immunocompromised and Elderly Will Die”: Precarity and Care in the United States
Lisa J. Hardy et al.
During the first days of COVID-19, stories about health and life circulated quickly and with resolve. The phrase “only the immunocompromised and elderly will die” became a touchpoint of disagreement, meaning fascist sacrifice to some and comfort to others. Examples provide insights into how, in times of disruption, meanings embedded in diffusive phrases expose and reinforce existing systems of power. We use the concept of shoring, borrowed from engineering, to discuss how health narratives reinforce and challenge existing structures of power and injustice in moments of social and political strife.
Uncertainty and Regimes of Temporality Among Girls and Women with Turner Syndrome in France
Nicoletta Diasio et al.
Based on ethnographic fieldwork with people living with Turner syndrome in France, in this article we analyze the relationship between uncertainty and temporalities specific to rare diseases. We first show how the syndrome requires a work of interpretation to decipher an opaque body and the desynchronization between bodily changes and age positions. We then analyze how the delay in information and diagnosis can change the perception and consequences of the disease. Finally, we show how new treatments or biotechnologies provide new imagined futures, multiplying choices but also the risk of failure and some ethical dilemmas in the contemporary French context.
À partir d’une ethnographie menée auprès de personnes ayant un syndrome de Turner en France, cet article analyse la relation entre incertitude et temporalités propre aux maladies rares. Nous montrons d’abord comment le syndrome suscite une désynchronization entre changements corporels et positions d’âge et un travail d’interprétation d’un corps opaque. Nous analysons ensuite comment le délai dans l’information et le diagnostic modifie la manière d’envisager le syndrome et de vivre ses effets. De nouvelles biotechnologies, enfin, influencent les visions d’avenir, en ouvrant le choix des possibles, tout en multipliant les risques d’échec et des dilemmes éthiques présents en France.
iPhone Pregnancies: Self-Testing as Surveillance and Care in the Trying to Conceive Community
Rahi Patel et al.
People trying to conceive (TTC) often rely on accessible technologies and associated apps to track aspects of menstrual cycles. We explore this growing phenomenon from the perspective of self-testing as surveillance-care for the TTC individual or couple and their current and future fertility and pregnancy. Through an analysis of anonymous fora posts, we argue that surveillance-care provides those TTC with a sense of community, as well as agency and control over inexact bodily processes. Here, surveillance-care enacted on the self is about care for the hoped-for future pregnancy, and resulting baby, as opposed to one’s own current health status.
Commoning contingent resources: constructing an Australian stem cell registry
Dan Santos et al.
Contemporary scientific research depends on sharing resources. Norms, cultures and infrastructures enable, incentivize or require sharing in particular ways. Commons are one type of infrastructure, and their key characteristics include the provision and governance of resources. Understanding how resources become part of a commons is critical for implementing arrangements that effectively facilitate scientific research. This article uses commons theory associated with knowledge resources to explore efforts to establish a registry for the Australian stem cell research community where registration is not a current norm. Analyzing the perspectives of stem cell researchers regarding registries, we make two contributions: (1) a conceptual contribution to the commons literature by explicating a more contingent understanding of resources, and (2) an empirical analysis of a relatively under-examined form of governance arrangement (i.e. registries). We emphasize paying close attention to the context-dependent processes through which resources are viewed as common-able and may subsequently become common-ed.
Nicole M. Lee et al.
Despite the popularity of direct-to-consumer (DTC) genetic tests, vocal critics have voiced concerns about test utility, data security, and consumers’ ability to interpret results. This study explores what issues consumers are concerned with and how prevalent these concerns are. Through an analysis of open-ended survey responses and publicly available social media comments, we examined the factors that prevent individuals from purchasing a DTC genetic test, and the broader social media discourse surrounding these issues. Findings highlight the differences between consumer decision-making and public discourse, with survey results emphasizing interest and cost as major factors and social media comments focusing on issues of privacy and institutional distrust.
Whither sociological theory in the health field?
Graham Scambler, Alice Scavarda, Sasha Scambler
The application of sociological theory to the study of health and health care has a long if chequered career, and there is considerable international variation in the manner of its development and in current practice. In this paper our focus is on the current situation in the UK, although its analysis and arguments clearly have a somewhat broader applicability. We draw loosely on Bourdieu’s notion of a ‘field’ to discuss post-WW2 developments in the theoretical contributions of sociologists to our understanding of health and healthcare, crucially asking: (i) which of these have opened and which closed doors as opportunities or obstacles, respectively; and (ii) whether or not they are cumulative and have delivered some form of ‘progress’. This necessarily involves distinguishing between political and institutional factors as enabling or constraining on the one hand, and the merits and potency of rival sociological theories on the other. Seven themes are explored in relation to mainstream sociology: (a) neoliberalism and academia, (b) precarity, (c) truncations of time, (d) specialisation, (e) metrics, (f) cultural turn and (g) normativity. The contribution concludes with a summary of outstanding and as yet unresolved questions and conflicts facing academics and others working in sociological theory in the health field.
Frailty after Covid: tracing emergent shifts through heterogenous network mapping
Salman Khan, Tiago Moreira
Taking as a point of departure the role that the category of frailty increasingly plays in the classification, sorting and management of ageing populations in contemporary societies, this paper examines how the onset of Covid-19—as a disease posing the most risk to older adults—affected scientific knowledge production on frailty. Drawing on a theoretically driven network mapping of scientific literature on frailty before and after the pandemic, the paper traces emergent shifts in the evolution of two key discourses of frailty, namely that of the accumulation of deficits and the phenotype, respectively. Our analysis identifies an increased enrolment of frailty as a clinical, prognostic category post-Covid, underpinned by the deficit accumulation model and its key instrument, the frailty index. In parallel, we observe the continuation of laboratory and experimental research on frailty, as aligned with the phenotype approach. We note that in comparison to before Covid, this shift seems to be taking place across a more diversified scientific terrain, with the field of geriatrics playing a central, mediating role between distinct-yet-relational articulations of frailty—those tied to the clinic on one end, and the lab on the other.
Sociology of Health and Illness
The Gatekeeper’s Dilemma: Unpacking the Complexity of Low-Value Care in General Practice
Olivia Spalletta, Sara Green
Low-value care (LVC) is increasingly the focus of debates on how to reduce the use of healthcare resources while maintaining quality care. General practitioners (GPs) are often considered central to this aim. Although GPs facilitate early disease detection, disease prevention and coordinated medical care, they must do so while aiming to protect both patients and the healthcare system from the harmful effects of medical overactivity. Public healthcare systems with gatekeeping practices, such as Denmark, lack many of the identified economic and structural incentives for LVC. Why then does LVC persist? Drawing on ethnographic observations and interviews with practising GPs, we explore how Danish GPs handle the difficult task of drawing a line between what requires medical attention and what should be left untreated or monitored. Our findings suggest that LVC literature may overlook the value of some interventions when used by GPs to improve patient trajectories over a longer term, maintain the relationship between patient and practitioner or balance the use of time and resources across the healthcare system. We clarify this point by unpacking the relational and context-dependent work of GPs, which is central to their capacity to serve as trusted gatekeepers.
Childhood Vaccine Hesitancy as an Interaction-Based Phenomenon
Alice Scavarda, Mario Cardano, Luigi Gariglio
The paper discusses the role of the interaction between parents and healthcare professionals in overcoming or heightening childhood vaccine hesitancy. Childhood vaccine hesitancy is seen as a set of attitudes and behaviours—that is, dispositions—that are highly dependent on how trust and vulnerability intersect during vaccination appointments. Drawing on a rapid team ethnography conducted in the Northwest of Italy, we discuss how parents’ trust in vaccination changes along specific trajectories, depending on how healthcare professionals manage epistemic conflicts with hesitant parents. We employ the concept of interactional trust to show how trust can be eroded or restored during specific interactions, regardless of the initial trust capital. Healthcare professionals’ discursive and interactive strategies during inoculation can have long-term effects on parents’ interpersonal trust and institutional trust in both immunisation and in the healthcare system. If parents and healthcare professionals fail to embrace their reciprocal vulnerability, the trust building system is flawed.
Dominik Hofmann, Elena Esposito
The article explores the role of algorithmic procedures in the implementation of the programme of precision medicine (PM), currently pursued in molecular tumour boards (MTBs) that emerged from the confluence of previous tumour boards and the increasing molecularisation of medicine. Our observation of the deliberations in MTBs, confirmed by interviews with participants, shows that the crucial contribution of algorithms in all stages of the processing of molecular data is neither acknowledged nor mentioned. One reason, we argue, is that these highly innovative technologies are very distant from the traditional skills and training of clinicians. The mediation through MTBs provides algorithmic procedures with the viability required to be implemented in medical decisions—and is more effective the more it goes unnoticed. Contrary to the widespread assumption of a blurring boundary between research and care, we claim that the intensification of contacts and exchanges among research endeavours and clinical operations makes the separation between the two fields increasingly sharp. As a consequence, there is a need for new forms of translation, which are accomplished by MTBs.
Bodies at Disposal in Home Care Settings
Helle Cathrine Hansen
Drawing on perspectives of care work as a collaborative and negotiated practice, this paper aims to explore how older service users actively contribute to care work and situations of care in the reablement policy context of homecare. The study analyses how service users in Danish and Norwegian municipal homecare settings place their bodies at disposal and how care workers’ responses to service users’ embodied contributions shape care practice and situations of care. Four ways of placing service users’ bodies at disposal were identified: proactively, dependently, reluctantly and instructively. Care workers’ capacity to attentively respond to service users’ physical and emotional needs and their flexibility and adaptiveness in dealing with service users placing their bodies at disposal in various ways, seem to be key for care work as a collaborative practice that promotes dignity in care. The study applies affective ethnography as a methodological and analytical approach.
Patricia Irizar, Dharmi Kapadia, Harry Taylor, Gertrude Wafula, Charles Kwaku-Odoi, Laia Bécares, Srinivasa Vittal Katikireddi
We aim to explore the association between racial discrimination across the life course on common mental disorders (CMD) during the COVID-19 pandemic, testing direct and indirect pathways. Cross-sectional data were obtained from the Evidence for Equality National Survey (Feb–Nov 2021, N = 8897 ethnic minority people aged 18–60). The survey measured experiences of racial discrimination across multiple domains and time periods. Path analyses were used to explore the associations between racial discrimination and CMD and the indirect associations via SARS-CoV-2 infection, financial concerns, loneliness and belonging. We find a clear dose–response relationship between experiences of racial discrimination over time and CMD. Compared to no reporting of experiences, chronic experiences of racial discrimination were associated with 2.91 times the odds of CMD (95%CI: 2.33–3.65; recent experiences only OR = 2.11, 1.67–2.67; past experiences only OR = 1.50, 1.16–1.92). Recent and chronic experiences of racial discrimination (but not past experiences) were also indirectly associated with CMD, via SARS-CoV-2 infection, greater financial concerns, greater feelings of loneliness and a reduced sense of belonging. These findings were consistent across all domains of racial discrimination, indicating that racial discrimination in any setting can negatively impact mental health. Anti-racist interventions which target the interconnected dimensions of racism are needed.
Joanne Bryant, Peter Aggleton
Narratives of resilience are proliferating in health policy and research where they are used to address problems threatening individuals and communities. Resilience approaches are often considered alternatives to other models of intervention because they signal a shift away from deficit assumptions to more empowering ways of promoting health. To date, however, there has been a lack of scrutiny of the nature, assumptions and effects of resilience discourse within the health field. This paper critically analyses the logics that underpin the use of such discourse, and the implications of their allure. Findings show that resilience discourse is largely understood and operationalised in neoliberal, individualistic and reductionist terms. Such logics create normative standards for what counts as ‘proper resilience’ and, by doing so, engender experiences of guilt and shame when individuals are not ‘resilient enough’. Seen differently, through the logics of social relationality, for example, resilience can engender new forms of subjectivity and practice for individuals and communities as ‘expert’ and ‘knowing’. Relational resilience is especially evident in First Nations scholarship, where it is conceptualised in terms of collective values, practices and identities rather than the attributes of individuals, offering opportunities to advance thinking about resilience and its use in health contexts.
Marginalized measures: The harmonization of diversity in precision medicine research
Melanie Jeske, Aliya Saperstein, Sandra Soo-Jin Lee, Janet K Shim
The production of large, shareable datasets is increasingly prioritized for a wide range of research purposes. In biomedicine, especially in the United States, calls to enhance representation of historically underrepresented populations in databases that integrate genomic, health history, demographic and lifestyle data have also increased in order to support the goals of precision medicine. Understanding the assumptions and values that shape the design of such datasets and the practices through which they are constructed are a pressing area of social inquiry. We examine how diversity is conceptualized in U.S. precision medicine research initiatives, specifically attending to how measures of diversity, including race, ethnicity, and medically underserved status, are constructed and harmonized to build commensurate datasets. In three case studies, we show how symbolic embrace of both diversity and harmonization efforts can compromise the utility of diversity data. Although big data and diverse population representation are heralded as the keys to unlocking the promises of precision medicine research, these cases reveal core tensions between what kinds of data are seen as central to ‘the science’ and which are marginalized.
Categorical misalignment: Making autism(s) in big data biobanking
Kathryne Metcalf
The opaque relationship between biology and behavior is an intractable problem for psychiatry, and it increasingly challenges longstanding diagnostic categorizations. While various big data sciences have been repeatedly deployed as potential solutions, they have so far complicated more than they have managed to disentangle. Attending to categorical misalignment, this article proposes one reason why this is the case: Datasets have to instantiate clinical categories in order to make biological sense of them, and they do so in different ways. Here, I use mixed methods to examine the role of the reuse of big data in recent genomic research on autism spectrum disorder (ASD). I show how divergent regimes of psychiatric categorization are innately encoded within commonly used datasets from MSSNG and 23andMe, contributing to a rippling disjuncture in the accounts of autism that this body of research has produced. Beyond the specific complications this dynamic introduces for the category of autism, this paper argues for the necessity of critical attention to the role of dataset reuse and recombination across human genomics and beyond.
Numbers and emotions in the governance of the Covid-19 datademic
Emmanuel Didier
There is a rich body of literature on numbers as tools of governance. But the attention of the corpus in question is almost entirely on the rational properties of quantification. This article shows that government by numbers is also, and inseparably, a government by feelings. The Covid-19 pandemic was also a datademic in the sense that numbers populated and spread through the public sphere. We focus on three cases. Death tolls were associated with fear, immunization rates were linked to hope, and the threshold of 100,000 deaths was credited with symbolic significance. This article, based on the French case, examines how data like these, frequently perceived as objective evidence, can at the same time be a source of emotional engagement and, as such, be used to inform modes of public governance in times of crises.
Henning Schmidgen
This article highlights the importance of the concept of ‘freedom to stay’ (Bleibefreiheit) as developed by philosopher Eva von Redecker, facing the accelerated climate crisis, the unbroken dynamics of capitalism, and the growing right-wing extremism. ‘Freedom to stay’ means the ecological autonomy to remain in places that allow for the collective production of critical subjectivity. While von Redecker unfolds this concept in dialogue with feminism and critical theory (from Simone de Beauvoir and Hannah Arendt to Rahel Jaeggi), the present article highlights the importance in this context of ‘vitalist Marxism’ in the sense of Georges Canguilhem and Gilles Deleuze, as well as institutional psychotherapy in the sense of Jean Oury and Félix Guattari. Only when the ‘fullness of time’ von Redecker invokes so elegantly is explicitly linked to the institutional struggles for social time can discourses about the ‘freedom to stay’ become crucially convincing.
Multispecies Interaction in Dog-Assisted Therapy Sessions
Jirka Vierimaa and Olli Pyyhtinen
In the article, we examine dog-assisted therapy sessions in triadic terms, as a constellation between three agents. The prevalent model of the therapeutic relationship is the two-person model. The article contests such dyadic and anthropocentric understanding by emphasising the role of ‘the third’ in the interactions between client and therapist from a multispecies perspective. Our analysis draws on technologically mediated participant observation of dog-assisted therapy sessions supplemented by ethnographic interviews with therapists. By stressing the integral role of the dog in the therapeutic relationship, we ultimately try to bridge together two different traditions of thinking the third, one focused on third-party human agents, the other on third-party things. Ultimately, the article suggests that engaging with dog-assisted therapy offers a means to extend the thinking of triads beyond human relationships into multispecies interaction.
