Along with our normal roundup of articles, there are several special issues to note this month.
The most recent issue of Catalyst: Feminism, Theory, Technoscience contains a special section, entitled “Illness Narratives, Networked Subjects, and Intimate Publics.” In their introduction, Tamara Kneese and Beza Merid write of the pieces that comprise the section:
The pieces in this themed section demonstrate how these diverse sites of cultural production galvanize personal narratives, engaging with experiences of pain and loss, to create new publics (and counter-publics) or mediate new forms of networked subjectivities. Taken together and individually, these pieces consider the ways that human-technological assemblages intersect with illness narratives, and how these assemblages help us make sense of such intrusions. They show individuals, communities, and institutions grappling with the day-to-day realities of illness, disability, dying, and death, along with their more profound implications. As a reflection of the authors’ experiences with illness or around illness, they illustrate the ways in which these life events disrupt and redefine the lives we imagine for ourselves. The stakes of this section feel all the more heightened by the chilling political climate taking shape across the Global North, where people who are the most vulnerable are in danger of losing their access to health care or having health care as a right of citizenship significantly abridged. In the US, with ongoing threats to the integrity of the Affordable Care Act and the protections of the Americans with Disabilities Act by the Trump Administration, we have witnessed a resurgence of activism around issues of illness and disability. This themed section makes the case that illness, disability, dying, and death continue to be sites where networked subjects are made and intimate publics spark collective political intervention through an array of online spaces.
The current issue of Critical Public Health is a special issue entitled, “The ethics and politics of community engagement in global health research.” As Lindsey Reynolds and Salla Sariola write in their opening editorial:
Rather than taking community engagement as a given, the papers in this special issue highlight how processes of community engagement are shaped by particular local histories and social and political dynamics, and by the complex social relations between different actors involved in global public health research. By interrogating the everyday politics and practices of a wide variety of engagement activities across diverse contexts, the special issue critically explores the social, political, and ethical dimensions of community engagement in global health research, policy-making, and practice. To this end, the contributors analyse the complex interactions between research organisations, governmental institutions, civil society actors, social movements, and interest groups that are involved in the conduct of community engagement. Further, by drawing out the conceptual underpinnings of community engagement and the contextual backgrounds that inform its conduct, contributions highlight how these relationships are shaped and reshaped by the particular economic, social, technological, bioethical, and developmental demands, pressures, and interests of biomedical research in diverse low-income settings. By including contributions from critical scholars as well as engagement practitioners, the special issue draws together a set of papers that move between these spaces and approach the problem of ‘engagement’ from divergent perspectives, interrogating and expanding standard narratives of community engagement. Through this perspective, the collection also offers unique insights on broader issues of representation, power, and justice in global health.
The Journal of the History of Medicine and Allied Sciences is focused on “Food as Medicine, Medicine as Food.” Juliana Adelman and Lisa Haushofer write of the issue in their introduction:
The essays in this special issue explore the relationship between food and medicine through time. The authors begin with the notion that food, medicine and science are not fixed or self-evident historical categories. Instead, we seek to understand how food and medicine have been considered separate or overlapping spheres in the past. We further ask how and why the relationship between food and medicine has assumed different configurations. As Lisa Haushofer writes in her essay the “intersection between food and medicine is not an unchanging and self-evident spillover of one realm into another, but the result of a historically specific process of creation and management.” This selection of essays cannot provide a comprehensive answer to these questions, but it does offer a range of perspectives, including those of differing times and places, from early modern Europe to nineteenth-century India to twentieth-century Britain.
In her introduction, Elizabeth Anne Davis writes of the current issue of Medical Anthropology, dedicated to exploring “Global Side Effects: Precarity, Responsibility, and Mental Health”:
The articles in this special issue document how uneven, context-specific, and frictional the global development of biopsychiatry has in fact been. They take up the challenge of exploring what conceptions and practices of well-being are emerging as approaches to mental distress and disorder multiply and diversify in the twenty-first century. They do this in part by sketching out terrains beyond psychiatry on which what were once considered matters of psychiatric purview—diagnosing and treating mental disorders, conceptualizing the self and mind-body or mind-brain-body relations, and innovating techniques of care—are unfolding. This framing does not imply that psychiatry today is irrelevant to those matters, but rather that psychiatry is no longer the only or even, perhaps, the most important place for us to investigate them.
Uncertainty work and temporality in psychiatry: how clinicians and patients experience and manage risk in practice?
In psychiatric clinical practice, professionals pursue risk management alongside various uncertainties concerning diagnoses and treatment decisions. In this article, I draw on an ethnographic study of understandings of bipolar disorder in Finland to argue that risk management in psychiatry is better characterised as practical uncertainty work. I show how both the clinicians and the patients coordinate the uncertainties of bipolar disorder symptoms, risks and treatment decisions, into something that can be managed. I examine the ways in which temporality structures this uncertainty work and I explore two different modes of framing time. Clinical time stems from the current psychiatric thinking committed to the standardised diagnosis and the ideals of evidence-based medicine. Through this, professionals frame a task-oriented and linear treatment path from diagnosis and treatment to a managed life with bipolar disorder. Experienced time, in contrast, relates to the logics of care and self-care amid the embodied experiences of different actors. This framing of time involves a cyclical process where the patient, the clinician and the treatment interventions each need to adjust to changing situations.
Risk and boundary work in contemporary maternity care: tensions and consequences
While the organisation of work in maternity care has historically witnessed boundary work between midwives and obstetricians, modern service provision has posed many challenges to professional boundary work, with increasing litigation and risk management practices fuelling the social construction of a ‘risk discourse’ within maternity care. Drawing upon observational and interview data of an ethnographic study conducted in a UK obstetric-led maternity unit during 2013, this article explores the professional experiences of contemporary ‘risk work’ and the impact of such ‘risk work’ upon the professional role boundaries of obstetricians and midwives. Midwives and obstetricians expressed concern regarding risk in childbirth. Obstetricians and midwives perceived control over the childbirth process as a means of promoting risk minimisation, so that risk management was central to the perceived rational management of uncertainty in maternity care. Anxiety over uncertainty, error and blame was associated with dominance of the biomedical model of care in translating and managing risk and a perceived increase in the medicalisation of childbirth. Such ‘risk discourse’ had consequently provoked boundary work tension, with the perceived shifting of professional role boundaries of obstetricians and midwives within maternity care. As a consequence of contemporary risk work and reconfiguration of role boundaries, the role of the midwife in the twenty-first century was perceived to be in a state of flux. I note that contemporary risk work and the reconfiguration of professional boundaries in maternity services potentially places the midwifery profession ‘at risk’ of deprofessionalisation, raising concerns for the future role and professional status of midwives.
Diabetes, alcohol abuse, and inequality in southern Mexico: A synergistic interaction
Despite the serious persistence of infectious diseases, low-income, indigenous people in southern Mexico are increasingly burdened by noncommunicable diseases, type 2 diabetes in particular. Most studies on diabetes and indigenous peoples focus on the dietary transition they are experiencing, with an emphasis on the biological role of processed foods and soft drinks on the onset of this disease. Little, however, is known about the synergistic interaction of alcohol abuse, diabetes, and inequality. This article adopts a syndemic approach to investigate how alcohol abuse among women and men in a rural, indigenous community in southern Mexico contributes to exacerbating health outcomes. Based on a one-year qualitative ethnographic study, this article advocates the use of a syndemic approach into the study of noncommunicable diseases because it offers critical insights into political economy, individual and social suffering, and the biosocial nature of health and illness.
Perfect etiquette: On diplomatically arguing with members
As a starting point for this article, the concept of diplomatic ethnography inspired by the work of Bruno Latour is presented as an ideal: a model for ‘good anthropology’, which truthfully follows members’ actions and the associations they form with others, simultaneously respecting their values. The workability of this ideal is then ethnographically tested in a research setting where direct communication with actors about the results of the researcher’s work is inescapable, while arriving at a common description of networks and values is difficult, as one group of actors routinely disqualifies members of another group by including them in the strongly naturalised category of ‘people with mental impairment’. How to understand and interpret the life of Pete, a resident of a ‘home for persons with health impairment’, who strives to rein in his hearty appetite while those taking care of him describe him as a ‘wicked child’ whose actions reflect only his syndrome? On the basis of my negotiations about his case, I come to the conclusion that the project of diplomatic ethnography is viable, if the obduracy of the ordering arrangements is duly taken into account and values are honoured, and, while arguing with members is inevitable under given circumstances, it is potentially productive for envisioning change in existing modes of ordering.
An emergent affliction in today’s Egypt: Islamic healing, the psy sciences, and what lies in-between
This article examines the emergence and constitution of a new affliction category in contemporary Egypt: wahm, meaning (self-)illusion, locally defined as the condition of being falsely convinced one is possessed by spirits called ‘jinn’, all the while exhibiting real possession symptoms. As I show, wahm transcends the domain of revivalist Islamic healing from where it originates by mobilizing and entangling Islamic and psy concepts and practices. It both exploits the local dichotomy of jinn afflictions/mental disorders and grows from the cracking of this binary. In this manner, wahm provides a new idiom for critiquing current therapeutic practices, for understanding suffering, and for analyzing modern life in today’s Egypt. Through the analysis of wahm, this article contributes to scholarly investigations of ontology and the emergence of diseases by moving the lens from biomedical categories to the terrain where biomedicine meets religious healing, highlighting not only intersections but also the new formations they engender.
Epidemiology, social history, and the beginnings of medical anthropology in the highlands of New Guinea
Shirley Lindenbaum’s study in the early 1960s of the origins and transmission of kuru among the Fore people of the eastern highlands of New Guinea is one of the earliest examples of an explicitly medical anthropology. Lindenbaum later described her investigations as assembling ‘an epidemiology of social relations’. How might the emergence of medical anthropology, then, be related to the concurrent development of the social history of medicine and global epidemic intelligence? Are these alternative genealogies for medical anthropology?
Ghosts in the health machine: Visits from the dead in hospital
Ill health and hospitalisation can conjure up both benign and threatening visits from the dead. This piece is an exploratory attempt to understand these visits in the context of a long cultural history of the relationship between the ill and dying, and those already dead. It looks, too, at the role played by the machine of the hospital, with all its constituent parts, in both this cultural history and manifestation of figures of the dead during illness today. The article uses evidence from two narrative studies of delirium conducted by the author in the United Kingdom and South Africa in 2013 and 2017 respectively, as well as brief reflections on experiences within the author’s family.
Science, Technology, and Society
Beyond Conflict and Complementarity Science and Religion in Contemporary India
This article attempts to discuss through detailed ethnographic description, the manner in which scientists in a leading Indian scientific research institute defined and practiced religion. Instead of posing science and religion as dichotomous categories, this article demonstrates its easy coexistence within the everyday lives and practices of Indian scientists. The ‘religious’ scientists did not perceive their religiosity in opposition to science, nor did they accept the complementary view of science and religion. Likewise, the ‘atheistic’ scientists did not find any contradiction in following a ‘religious’ lifestyle and simultaneously identified themselves as atheists or non-believers. This article questions the tacit acceptance of the distinctions between science and religion and seeks to evolve new vocabularies to talk about these categories. It attempts to look at science and religion from a non-dualistic perspective. It argues that a productive way of understanding science and religion is to go beyond the conflict and complementarity models.
Empowering citizens or mining resources? The contested domain of citizen engagement in professional care services
Ludo Glimmerveen, Sierk Ybema, and Henk Nies
When studying individual attempts to foster citizen engagement, scholars have pointed to the coexistence of competing rationales. Thus far, however, current literature barely elaborates on the socio-political processes through which employees of professional organizations deal with such disparate considerations. To address this gap, this article builds on an ethnographic study, conducted in the Netherlands between 2013 and 2016, of a professional care organization’s attempts to engage local citizens in one of its elderly care homes. To investigate how citizen engagement is ‘done’ in the context of daily organizing, we followed employees as they gradually created and demarcated the scope for such engagement by approaching citizens as either strategic partners (pursuing ‘democratic’ rationales) or as operational volunteers (pursuing ‘instrumental’ rationales). In order to deal with such potentially incongruent orientations, we found that employees used discursive strategies to influence the balance that was struck between competing rationales; either through depoliticization—i.e., the downplaying of incongruities and the framing of disparate considerations as being complementary within the pursuit of a shared, overarching goal—or through politicization, i.e., the active challenging of how their colleagues prioritized one consideration over another. By showing how the successful conveyance of such (de)politicized accounts helped employees either defend or redraw the boundaries of what citizen engagement was (not) about, we contribute to extant theorization by (1) developing a processual approach to studying citizen engagement that (2) is sensitive to organizational politics.
Fate, morals and rational calculations: Freezing eggs for non-medical reasons in Turkey
Azer Kılıç and İpek Göçmen
This article aims to explore women’s decisions to freeze their eggs for non-medical reasons in Turkey. It draws on semi-structured interviews conducted with twenty-one women who were either in the process of freezing their eggs, or had completed the process within the previous year. Being highly educated and holding prestigious occupations, on the one hand, and faced with traditional gender norms, on the other, these women are confronted with a challenging decision. When making such a decision to freeze their eggs, women act under the constraints defined by biomedical paradigms, the society they live in, and the future uncertainty of their lives. However, it becomes apparent that women are able to reconcile different kinds of rationalities and concerns in their decisions to freeze eggs. They engage in rational calculations to find a solution to their reproductive concerns; they turn to their own belief systems when dealing with future uncertainty; and they negotiate social norms concerning virginity, while trying to conform to traditional reproductive roles.
Reproducing whiteness and enacting kin in the Nordic context of transnational egg donation: Matching donors with cross-border traveller recipients in Finland
The multimillion-euro fertility industry increasingly tailors its treatments to infertile people who are willing to travel across national borders for treatments inaccessible at home, especially reproductive tissue donor treatments. Finland is the Nordic destination for access to donor eggs, particularly for Swedes and Norwegians hoping for a donor match that will achieve a child of phenotypically plausible biological descent. Finns are seen as Nordic kin, and the inheritability of “Nordicness” is reinforced at clinics. Drawing on ethnographic material from three fertility clinics in Finland during 2015–2017, this article discusses how Nordic relatedness and whiteness are enacted in the practices of matching of donors with recipient parents. The analysis shows a selective and exclusionary rationale to matching built around whiteness: matches between donors with dark skin tone and recipients with fair skin tone are rejected, but a match of a donor with fair skin and recipients with dark skin may be made. Within the context of transnational egg donation, the whiteness or Nordicness of Finns is not questioned as it has been in other historical circumstances. Even the establishment of a state donor register offers a guarantee of kin-ness, especially non-Russian kin-ness. It is concluded that the logics of matching protect the “purity” of whiteness but not browness or blackness, enacting Nordic(kin)ness in ways that are part of broader intra-European histories of racism and post-socialist Othering.
“We are the heroes because we are ready to die for this country”: Participants’ decision-making and grounded ethics in an Ebola vaccine clinical trial
Angus Fayia Tengbeh, Luisa Enria, Elizabeth Smout, Thomas Mooney Mike Callaghan, David Ishola, Bailah Leigh, Deborah Watson-Jones, Brian Greenwood, Heidi Larson, and Shelley Lees
The 2014–2016 Ebola epidemic presented a challenging setting in which to carry out clinical trials. This paper reports findings from social science research carried out in Kambia, Northern Sierra Leone during first year of an Ebola vaccine trial (August 2015–July 2016). The social science team collected data through ethnographic observation, 42 in depth interviews; 4 life narratives; 200 exit interviews; 31 key informant interviews; and 8 focus group discussions with trial participants and community members not enrolled in the trial. Whilst research often focuses on why people refuse vaccination, we instead explore participant motivations for volunteering for the study, in spite of prevailing anxieties, rumours and mistrust during and after the Ebola outbreak. In so doing the paper contributes to on-going debates about research ethics and community engagement in resource poor contexts, offering reflections from an emergency and post-epidemic setting. We analyse participants’ perceptions of the risks and benefits of participations, highlighting the importance of a contextual approach. We focus on four types of motivation: altruism; curiosity and hope; health-seeking; and notions of exchange, and argue for the role of social science in developing grounded research ethics and community engagement strategies that can take into account context and local realities.
Between demarcation and discretion: The medical-administrative boundary as a locus of safety in high-volume organisational routines
Suzanne Grant and Bruce Guthrie
Patient safety is an increasing concern for health systems internationally. The majority of administrative work in UK general practice takes place in the context of organisational routines such as repeat prescribing and test results handling, where high workloads and increased clinician dependency on administrative staff have been identified as an emerging safety issue. Despite this trend, most research to date has focused on the redistribution of the clinical workload between doctors, nurses and allied health professionals within individual care settings. Drawing on Strauss’s negotiated order perspective, we examine ethnographically the achievement of safety across the medical-administrative boundary in key high-volume routines in UK general practice. We focus on two main issues. First, GPs engaged in strategies of demarcation by defining receptionist work as routine, unspecialised and dependent upon GP clinical knowledge and oversight as the safety net to deal with complexity and risk. Receptionists consented to this ‘social closure’ when describing their role, thus reinforcing the underlying inter-occupational relationship of medical domination. Second, in everyday practice, GPs and receptionists engaged in informal boundary-blurring to safely accommodate the complexity of everyday high-volume routine work. This comprised additional informal discretionary spaces for receptionist decision-making and action that went beyond the routine safety work formally assigned to them. New restratified intra-occupational hierarchies were also being created between receptionists based on the complexity of the safety work that they were authorised to do at practice level, with specialised roles constituting a new form of administrative ‘professional project’. The article advances negotiated order theory by providing an in-depth examination of the ways in which medical-administrative boundary-making and boundary-blurring constitute distinct modes of safety in high-volume routines. It also provides the basis for further research and safety improvement to maximise team-level understandings of the pivotal role of medical-administrative negotiations in achieving safety and mitigating risk.
Algorithmic psychometrics and the scalable subject
Recent public controversies, ranging from the 2014 Facebook ‘emotional contagion’ study to psychographic data profiling by Cambridge Analytica in the 2016 American presidential election, Brexit referendum and elsewhere, signal watershed moments in which the intersecting trajectories of psychology and computer science have become matters of public concern. The entangled history of these two fields grounds the application of applied psychological techniques to digital technologies, and an investment in applying calculability to human subjectivity. Today, a quantifiable psychological subject position has been translated, via ‘big data’ sets and algorithmic analysis, into a model subject amenable to classification through digital media platforms. I term this position the ‘scalable subject’, arguing it has been shaped and made legible by algorithmic psychometrics – a broad set of affordances in digital platforms shaped by psychology and the behavioral sciences. In describing the contours of this ‘scalable subject’, this paper highlights the urgent need for renewed attention from STS scholars on the psy sciences, and on a computational politics attentive to psychology, emotional expression, and sociality via digital media.
How experiments age: Gerontology, beagles, and species projection at Davis
Cold War curiosities about the dangers of radiation generated significant funding for an array of biomedical projects as enticing as they were unpredictable, introducing newly standardized experimental animals into laboratories and a novel merging of scientific disciplines. The desire to understand radiation’s effects on human longevity spurred a multi-sited, multi-decade project that subjected beagle dogs to varying degrees of irradiation. One of those laboratories, located at the southern tip of the campus of the University of California, Davis, eventually hosted an elaborate experimental breeding kennel and a population of ‘control’ dogs that set new milestones for canine longevity. The present article examines this gerontological spin-off experiment, using the study of aging as a method and object in order to analyze the emergence and disappearance of the Davis Radiobiology Laboratory and explore how research using new canine model organisms mirrored the politics and anxieties faced by citizens and scientists of the era, here termed ‘species projection’.
Tactics of material participation: How patients shape their engagement through e-health
Karen Dam Nielsen and Henriette Langstrup
The increasingly popular goal of ‘patient participation’ comes with a conceptual vagueness, at times rendering it an all-too flexible political trope or platitude and, in practice, resulting in unclear invitations to patients. We seek to open up the alluring yet troubling figure of patient participation, by inquiring into how patients enact participation in different ways. Based on close ethnographic engagement in a user test of the e-health system P-Record, we show how a group of heart patients shaped their participation along three lines of tactics of material participation: ‘activism’, ‘partnership’ and ‘compliance’. Our argument is twofold. First, we suggest that any invitation to participate carries the inherent paradox that, although certain ideas of participation may be materially embedded, e.g. in e-health or other ‘participatory technologies’, the enactment of participation cannot be foreseen. To participate is to creatively make do with the situation and technologies at hand, making participation normatively variable in practice. Second, we suggest seeing these normative variations as distinct, though interwoven, lines of tactics that bring about different expectations and, to different degrees, allow patients to handle ambiguous invitations to participate.
What is at stake? Exploring the moral experience of stigma with Indian-Australians and Anglo-Australians living with depression
Bianca Brijnath and Josefine Antoniades
This article applies the framework of moral experience to examine the cultural experience of stigma with Indian-Australians and Anglo-Australians living with depression in Melbourne, Australia. To date few studies have examined this dynamic in relation to mental illness and culture, and no studies have applied this framework in a culturally comparative way. Based on 58 in-depth interviews with people with depression recruited from the community, we explicate how stigma modulates what is at stake upon disclosure of depression, participants’ lived experience following that disclosure, and how practices of health-seeking become stigmatised. Findings show that the social acceptance of depression jars against participants’ experience of living with it. Denialism and fear of disclosure were overwhelming themes to emerge from our analysis with significant cultural differences; the Anglo-Australians disclosed their depression to family and friends and encountered significant resistance about the legitimacy of their illness. In contrast, many Indian-Australians, especially men, did not disclose their illness for fear of a damaged reputation and damaged social relations. For Indian-Australians, social relations in the community were at stake, whereas for Anglo-Australians workplace relations (but not community relations) were at stake. Participants’ experiences in these settings also influenced their patterns of health-seeking behaviors and age and inter-generational relationships were important mediators of stigma and social support. These findings illuminate how stigma, culture, and setting are linked and they provide critical information necessary to identify and develop customised strategies to mitigate the harmful effects of stigma in particular cultural groups.