Here is Part I of our March article round-up.
In the Bel Air neighborhood of Port-au-Prince, Haiti, most residents are dependent on humanitarian and foreign assistance for food, services, aid, and jobs. Yet, some residents feel that the conditions under which such aid is provided actively blocks their ability to live a life they find meaningful. In this article, I explore how some Haitians theorize this humanitarian condition through the figure of the dog, an animal that exemplifies, for Haitians, the deep history of violence, dehumanization, and degradation associated with foreign rule. I then contrast this with how foreign aid workers invoke the figure of the dog to illustrate their compassionate care for suffering others. Drawing on research among Bel Air residents and foreign aid workers in the years after a devastating earthquake destroyed much of Port-au-Prince, I show how the figure of the dog is central both to Haitian critiques of humanitarian aid and to the international humanitarian imaginary that responds to forms of suffering it deems cruel.
Michelle L. McGowan, Suparna Choudhury, Eric T. Juengst, Marcie Lambrix, Richard A. Settersten Jr., Jennifer R. Fishman
This paper investigates how groups of ‘citizen scientists’ in non-traditional settings and primarily online networks claim to be challenging conventional genomic research processes and norms. Although these groups are highly diverse, they all distinguish their efforts from traditional university- or industry-based genomic research as being ‘participant-driven’ in one way or another. Participant-driven genomic research (PDGR) groups often work from ‘labs’ that consist of servers and computing devices as much as wet lab apparatus, relying on information-processing software for data-driven, discovery-based analysis rather than hypothesis-driven experimentation. We interviewed individuals from a variety of efforts across the expanding ecosystem of PDGR, including academic groups, start-ups, activists, hobbyists, and hackers, in order to compare and contrast how they relate their stated objectives, practices, and political and moral stances to institutions of expert scientific knowledge production. Results reveal that these groups, despite their diversity, share commitments to promoting alternative modes of housing, conducting, and funding genomic research and, ultimately, sharing knowledge. In doing so, PDGR discourses challenge existing approaches to research governance as well, especially the regulation, ethics, and oversight of human genomic information management. Interestingly, the reaction of the traditional genomics research community to this revolutionary challenge has not been negative: in fact, the community seems to be embracing the ethos espoused by PDGR, at the highest levels of science policy. As conventional genomic research assimilates the ethos of PDGR, the movement’s ‘democratizing’ views on research governance are likely to become normalized as well, creating new tensions for science policy and research ethics.
‘Biocapital’, ‘biovalue’ and ‘bioeconomics’ are examples of terms formulated to interpret the commercial exploration of genomics science. Although highlighting important aspects, these terms tend to suggest the triumph of the market logic, which would have tamed all other logics. In this paper, it is argued that national and global markets obviously draw on economic rationales but can also be shaped by other rationales such as the academic logic. I analyse the genomics complex (formed by the combination between genomics inquiry, DNA sequencing and bioinformatics) in Brazil. A process of academic marketization is identified, four manifestations of which are analysed. First, academic interests have played a major role in the definition of themes to be investigated in Brazil at the expense of companies’ interests. Second, academics have prioritized human health studies at the expense of agrarian studies. Third, academic demands have expanded the importation of DNA sequencing devices to Brazil. Fourth, these demands have conducted Brazil towards an increasing and subaltern involvement in the global market of sequencing services. Markets are surely shaped by actors wishing to maximize profits. At times, however, they can also be modified by actors decisively moved by academic goals such as scientific prestige or access to research tools. A crucial challenge is that access to hight-throughput technologies (big data) does not necessarily lead to the formulation of theories of considerable scientific and political import (big knowledge).
Alexandra Hillman, Jamie Lewis, and Glyn Elwyn
This paper draws on literature from the sociology of expectations to explore accounts of experts in cancer research and clinical practice. The cancer specialists’ accounts presented in this article are taken from interviews undertaken as part of a project that aimed to develop a research agenda for the next ten to thirty years that will achieve early detection and prevention in the four main cancers: (i) bowel and colorectal, (ii) prostate, (iii) lung and (iv) breast. Drawing on secondary analysis of the interviews, this article provides a sociological exploration of both the experts’ versions of the future and the interactions between the interviewer and research participant to show expectation in the making: the competing stories of what is and what ought to be the focus of cancer research now and in the (near) future. The building of a cancer research agenda is shown to be a contested future, represented by a dominant and resistant view of the cancer problem, in which cancer specialists must engage in performative strategies and boundary work to frame the present problem: what cancer is and how it can be detected and, subsequently, to claim credibility for a future pathway.
This article employs Foucauldian and feminist analytics to advance a critical approach to wearable digital health- and activity-tracking devices. Following Foucault’s insight that the growth of individual capabilities coincides with the intensification of power relations, I argue that digital self-tracking devices (DSTDs) expand individuals’ capacity for self-knowledge and self-care at the same time that they facilitate unprecedented levels of biometric surveillance, extend the regulatory mechanisms of both public health and fashion/beauty authorities, and enable increasingly rigorous body projects devoted to the attainment of normative femininity. These technologies of surveillance, normalization, and discipline thus function to augment, and facilitate the cooperation of, neoliberal-era biopower and post-feminist patriarchal power. My analysis of digital self-tracking devices’ instrumentality to biopower and patriarchy contributes to the emergent field of critical digital health studies and builds new connections between political, social, and feminist theories of embodiment; biopower studies; fat studies; and trans-disciplinary body studies.
Julie Christina Grew and Mette Nordahl Svendsen
Remote monitoring of implantable cardioverter defibrillator (ICD) patients links patients wirelessly to the clinic via a box in their bedroom. The box transmits data from the ICD to a remote database accessible to clinicians without patient involvement. Data travel across time and space; clinicians can monitor patients from a distance and instantly know about cardiac events. Based on ethnographic fieldwork in two Danish hospitals, this article explores the configuration of the wireless ICD patient by following a number of patients through hospitalisation, implantation, in-clinic follow-up, and remote monitoring. Wireless therapy, we argue, scripts the patient as data. In high-tech clinical encounters, data are enacted as extensions and copies of the patient, and even proxies that, in patients’ experiences, may turn into identity thieves. In illuminating the multiple positions that data take in such clinical encounters and in patients’ experiences we discuss the ambiguities that arise when patients go wireless.
Carrie Friese & Nathalie Nuyts
This paper uses bibliometric analysis and critical discourse analysis to explore the rise in research involving nonhumans in public health, and the potential contribution of posthumanist social theory to this growing body of public health scholarship. There has been a sudden and rather marked increase in research and writing on animals, zoonoses and/or the ‘One-health’ paradigm within public health journals since 2006. Indeed ‘One-health’ rather than ‘posthumanism’ holds together research involving nonhumans of various kinds – from viruses to animals – within the discipline. Advocates of the ‘One-health’ paradigm argue that human and animal health must be integrated through joining the research, training and care practices of human and animal medicine. By mapping the terrain of public health research involving non-human species, we consider how and where posthumanist theory could be productively drawn upon to contribute to both critical and applied research involving nonhumans within public health. We specifically ask how the posthumanist insight to ‘follow the nonhumans’ would raise new questions and analytics for this research area.
Melanie J. Rock
This paper extends the terms of engagement between social science, posthumanist debates and One Health by questioning whether ‘the public’ may include non-human animals. The One Health concept refers to interdependence between human beings and non-human species in socio-ecological systems. One Health interventions and critiques have tended to emphasize the prevention of zoonotic infections, whereas this paper reflects on more than a decade of engaged research in One Health promotion. Repeatedly, this particular approach to One Health promotion has highlighted the imprint of multi-species entanglements in public life, especially the problematization and politicization of people’s pets. Serious consideration for multi-species entanglements cautions against conflating ‘the public’ with human beings and human interests, to the exclusion of all others. Human beings have never lived separate and apart from non-human species, and we all depend on shared environments. To do justice to multi-species entanglements, socio-ecological theory should undergo expansion in health promotion.
This paper presents air pollution as a ‘post-human’ public health phenomenon. It draws on an ethnography of a multidisciplinary research project called Weather Health and Air Pollution to explore the material ways in which air pollution challenged scientists’ conceptualisations of harm and health. The epidemiologists on WHAP used statistical techniques to correlate data of air pollution concentrations with mortality and morbidity data collected by hospitals in order to establish a quantified measure of the health effects of exposure to air pollution. Initially, these correlations were problematic: plotted data points failed to map over temporal patterns. A series of negotiations followed. As a result of these, the concept of ‘season’ emerged as a temporal figure through which the very existence and meaning of air pollution was put to the test. Indeed, attempts by researchers to hold stable the notion of toxicity signalled the problem of trying to assess the bodily response to a polluted environment that has supposedly ‘already been’. The paper concludes by arguing how contemplating health through the lens of the material dimensions of time allows public health to: first, view health problems as constituted through bodies and environments, rather than as a relation separating the two; and second, open up indeterminacies and uncertainties as a generative condition of air pollution, and perhaps public health more generally.
Since the 1980s, the primary public health response to injecting drug use in the UK has been one of harm reduction. That is, reducing the harms associated with drug use without necessarily reducing consumption itself. Rooted in a post-Enlightenment idea of rationalism, interventions are premised on the rational individual who, given the right means, will choose to avoid harm. This lies in stark contrast to dominant addiction models that pervade popular images of the ‘out of control’ drug user, or worse, ‘junkie’. Whilst harm reduction has undoubtedly had vast successes, including challenging the otherwise pathologising and often stigmatising model of addiction, I argue that it has not gone far enough in addressing aspects of drug use that go beyond ‘rational’ and ‘human’ control. Drawing on my doctoral research with people who inject drugs, conducted in London, UK, this paper highlights the role of the injecting ‘event’, which far from being directed or controlled by a pre-defined individual or ‘body’ was composed by a fragile assemblage of bodies, human and nonhuman. Furthermore, in line with the ‘event’s’ heterogeneous and precarious make-up, multiple ways of ‘becoming’ through these events were possible. I look here at these ‘becomings’ as both stabilising and destabilising ways of being in the world, and argue that we need to pay closer attention to these events and what people are actually in the process of becoming in order to enact more accountable and ‘response-able’ harm reduction.
This article is based on multi-sited ethnography that traced a dynamic network of actors (activists, policy-makers, health care systems, pharmaceutical companies) and actants (viruses and medicines) that shaped South African women’s access to, and embodiment of, antiretroviral therapies (ARVs). Using actor network theory and post-humanist performativity as conceptual tools, the article explores how bodies become the meeting place for HIV and ARVs, or non-human actants. The findings centre around two linked sets of narratives that draw the focus out from the body to situate the body in relation to South Africa’s shifting biopolitical landscape. The first set of narratives articulate how people perceive the intra-action of HIV and ARVs in their sustained vitality. The second set of narratives articulate the complex embodiment of these actants as a form biopolitical precarity. These narratives flow into each other and do not represent a totalising view of the effects of HIV and ARVs in the lives of the people with whom I worked. The positive effects of ARVs (as unequivocally essential for sustaining life) were implicit and the precarious vitality of the people in this ethnography was fundamental. However, a related and emergent set of struggles become salient during the study that complicate a view of ARVs as a ‘technofix’. These emergent struggles were biopolitical, and they related first to the intra-action of HIV and ARVs ‘within’ the body; and second, to the ‘outside’ socio-economic context in which people’s bodies were situated.
Rebecca Lynch & Simon Cohn
Many studies of blood donation have looked at the motives of donors, their relationship with the wider society and corresponding values such as gift-giving, altruism and responsibility. These underpin a rhetorical representation of person-to-person donation that neglects the many technical processes that take place between donation and eventual use and the material nature of blood itself. This ethnographic study, conducted in four UK blood donation sites, describes the various practices involved in routine sessions, rather than the motives or values or donors or staff. It focuses on the procedures and equipment that not only ensures blood is collected safely and efficiently, but the extent to which they determine the nature of the collected blood itself. Taking our cue from posthuman approaches, we argue donated blood as something that is ‘made’ only when it leaves the body; in other words, it is not simply extracted, but is constructed through specific practices. We illustrate how, as blood is separated from the body, it is increasingly depersonalised and reconstituted in order to have biomedical value. In this way, rather than reproducing the essentialist claim that blood is what social scientists often described as a ‘special kind of substance’, we point to the ways in which donated blood alters as it moves in time and space. We argue that such transformations occur in both symbolic and material realms, such that the capacity of blood to have both cultural meaning and clinical value is dependent on the fact that it is never stable or singular.
P. Lehoux, B. Williams-Jones, D. Grimard, and S. Proulx
The aim of this paper is to examine how members of the public define the legitimacy of cognitive and behavioural enhancement. Our study involved a two-step multimedia-based deliberative intervention in which participants of different age groups pondered the desirability of a fictional enhancement technology: a sweater made of ‘smart’ textiles that provide ‘bio-psycho-feedback’ (PBF) to its user. A 3-min video clip presenting the fictional technology was used to stimulate deliberations in four face-to-face workshops (n = 38). A larger group of participants (n = 57) then discussed, in an online forum, two short stories illustrating dilemmas raised by the PBF sweater. Qualitative analysis of transcripts of the workshops and the forum identified patterns of moral argumentation in the reasoning processes by which participants challenge the PBF sweater’s legitimacy: (1) when a shift in purpose occurs – from therapeutic to enhancement – and (2) when it engenders a shift in the user’s sense of self – from an autonomous self to a socially coerced individual. These findings add nuance to current knowledge on public perceptions of cognitive and behavioural enhancement, providing insight into the ways that people conceive of the tension between autonomy and social coercion.
Devon E. Hinton and Laurence J. Kirmayer
Theories of healing have attempted to identify general mechanisms that may work across different modalities. These include altering expectations, remoralization, and instilling hope. In this paper, we argue that many forms of healing and psychotherapy may work by inducing positive psychological states marked by flexibility or an enhanced ability to shift cognitive sets. Healing practices may induce these states of cognitive and emotional flexibility through specific symbolic interventions we term “flexibility primers” that can include images, metaphors, music, and other media. The flexibility hypothesis suggests that cognitive and emotional flexibility is represented, elicited, and enacted through multiple modalities in healing rituals. Identifying psychological processes and cultural forms that evoke and support cognitive and emotional flexibility provides a way to understand the cultural specificity and potential efficacy of particular healing practices and can guide the design of interventions that promote resilience and well-being.
Lesley Jo Weaver
The existing literature on Indian ethnopsychology has long asserted that somatization is a key aspect of experiences of distress. The study of idioms of distress arose out of work done in India (Nichter in Cult Med Psychiatry 5(4):379–408, 1981), but ironically, little subsequent work has systematically explored idioms of distress in this part of the world. This ethnographic study focused on the term tension (tenśan) and its relation to a cultural syndrome among women in urban North India. This syndrome appears to involve rapid-onset anger, irritation, rumination, and sleeplessness as key symptoms. It is often linked to specific circumstances such as domestic conflict and is associated with the stresses of modern urban life. People who report more symptoms of tension had consistently higher scores on the Hopkins Symptoms Checklist-25 for depression and anxiety. In this cultural context where psychiatric care is highly stigmatized, the language of tension can aid providers of mental healthcare (many of whom, in India, are not psychiatrists or psychologists) to identify and communicate effectively with potential patients whose mental healthcare needs might otherwise go unaddressed.
Ariel Yankellevich and Yehuda C. Goodman
Following the growing critique of the use of Post-Traumatic Stress Disorder in post-disaster interventions, a new type of intervention aimed at building resilience in the face of traumatic events has been making its first steps in the social field. Drawing on fieldwork of a resilience-building program for pre-clinical populations in Israel, we analyze the paradoxes and ambiguities entailed in three inter-related aspects of this therapeutic project: The proposed clinical ideology aimed at immunizing against traumas; the discursive and non-discursive practices used by the mental-health professionals; and, participants’ difficulties to inhabit the new resilient subject. These contradictions revolve around the injunction to rationally handle emotions in response to disruptive traumatic events. Hence, the attempt to separate between a sovereign rational subject and a post-traumatic subject is troubled in the face of experiences of trauma and social suffering. Furthermore, we demonstrate how these difficulties reconstitute unresolved tensions between mimetic and anti-mimetic tendencies that have been pervading the understanding of trauma in the therapeutic professions. Finally, we discuss how the construction of the resilient subject challenges the expanding bio-medical and neoliberal self-management paradigm in mental health.
This study examines the perceptual basis of diagnostic virtuosity in East Asian medicine, combining Merleau-Ponty’s phenomenology and an ethnographic investigation of Korean medicine in South Korea. A novice, being exposed to numerous clinical transactions during apprenticeship, organizes perceptual experience that occurs between him or herself and patients. In the process, the fledgling practitioner’s body begins to set up a medically-tinged “intentionality” interconnecting his or her consciousness and medically significant qualities in patients. Diagnostic virtuosity is gained when the practitioner embodies a cultivated medical intentionality. In the process of becoming a practitioner imbued with virtuosity, this study focuses on the East Asian notion of “Image” 象 that maximizes the body’s perceptual capacity, and minimizes possible reductions by linguistic re-presentation. “Image” enables the practitioner to somatically conceptualize the core notions of East Asian medicine, such as Yin-Yang, and to use them as an embodied litmus as the practitioner’s cultivated body instinctively conjures up medical notions at clinical encounters. In line with anthropological critiques of reductionist frameworks that congeal human existential and perceptual vitality within a “scientific” explanatory model, this article attempts to provide an example of various knowing and caring practices, institutionalized external to the culture of science.
Christine N. El Ouardani
Based on 9 months of ethnographic fieldwork in a U.S. mental health clinic focused on the treatment of preschool-aged children who exhibited extremely disruptive behavior, this article examines the contradictions clinicians faced when trying to identify and attribute “intentionality” to very young children. Disruptive, aggressive behavior is one of the central symptoms involved in a wide-range of childhood psychopathology and the number one reason young children are referred to mental health clinics in the United States. In the clinic where I conducted my research, clinicians were especially interested in diagnosing these children with oppositional defiant disorder (ODD), in order to identify those at risk for more serious mental illness later in the lifecourse. In this article, I look at the different strategies clinicians used in interpreting whether aggressive, defiant behavior was a part of the child’s “self,” a biologically driven symptom of a disease, or a legitimate reaction to problematic social environments. I argue that conceptualizing intentionality as a developmental, interpersonal process may help to make sense of the multiple discourses and practices clinicians used to try to reconcile the contradictions inherent in diagnosing ODD.
This article aims to shed light on the self-perceptions of people with eating disorders in Malta and Italy through a deep understanding of their narratives. In contrast to the biomedical perception of the phenomenon and in opposition with the prevalent feminist theories on the subject, I consider eating disorders as the result of self-transformative processes. I suggest that anorexics, bulimics and binge eaters are actively and deliberately engaged in a project of moral self-transformation that is culturally defined. The moral transformations of women with eating disorders in Malta and Italy, the two considered contexts of this research, reflect the social expectations of women in these societies. The drastic changes in personal attitudes towards both food and the body that characterise eating disorders are the result of a complete dedication to the moral values embodied in thinness, namely the control of bodily needs and pleasure. The self-transformative process of people with eating disorders can be understood as a form of moral conversion along a continuum of increasing control over hunger: the higher the control, the higher the level of satisfaction and the degree of moral conversion achieved. Considering the general low recovery rates of people with eating disorders, this approach helps in the understanding of why people who are diagnosed with an eating disorder accept medical definitions and treatments to different extents.
Social scientific analyses of inequality inform interventions ranging from the material and political to the personal and psychological. At the extremes of this continuum, Marxian militants view the exploration of the inner lives of oppressed people as irrelevant to liberation, while psychoanalysts bemoan the naïveté of “depsychologized” conceptions of the social subject. While both approaches have been applied to disability inequality, an historical materialist view has dominated the discipline of disability studies, where attention has only recently turned to psychological aspects of oppression. This article provides a brief introduction to some key aspects of the social and economic marginalization experienced globally by the disability minority. Thereafter, the complex debates around materialist and psychological accounts of, and interventions upon, racism and disablism are explored and compared, with particular reference to the place of grief and loss in disability discourse. The clinical fragment which forms the title of this paper introduces an engagement with Cheng’s model of racial melancholia, its conceptual origins and explanatory power. The balance of the paper considers how Cheng’s work may help illuminate how it is that disability inequality, like that of race, may remain an obstinate reality notwithstanding material interventions aimed at overturning it.
Anna C. Martinez-Hume, Allison M. Baker, Hannah S. Bell, Isabel Montemayor, Kristan Elwell, and Linda M. Hunt
Under the Affordable Care Act, Medicaid Expansion programs are extending Medicaid eligibility and increasing access to care. However, stigma associated with public insurance coverage may importantly affect the nature and content of the health care beneficiaries receive. In this paper, we examine the health care stigma experiences described by a group of low-income public insurance beneficiaries. They perceive stigma as manifest in poor quality care and negative interpersonal interactions in the health care setting. Using an intersectional approach, we found that the stigma of public insurance was compounded with other sources of stigma including socioeconomic status, race, gender, and illness status. Experiences of stigma had important implications for how subjects evaluated the quality of care, their decisions impacting continuity of care, and their reported ability to access health care. We argue that stigma challenges the quality of care provided under public insurance and is thus a public health issue that should be addressed in Medicaid policy.
Bridget M. Haas
This article explores how the interrelationship of power and temporality shapes the lived experiences and subjectivities of political asylum claimants in the United States. By lodging an asylum claim, migrants enter into a system that will, in effect, produce them as legitimate refugees deserving of protection or as illegitimate, “bogus” asylum seekers in need of expulsion. In this way, asylum claimants inhabit a dual positionality of citizen-in-waiting/deportee-in-waiting, as they often spend many years waiting for the adjudication of their cases. This article ethnographically analyzes how this dual positionality is inhabited by asylum claimants, producing novel forms of suffering and being-in-the-world. More specifically, I argue that the asylum process evokes a sense of “existential limbo”: a subjective and temporal state of being in which the asylum system, in the present moment, is understood as the locus of suffering and in which life and meaning making are defined by a sense of immobility.
This article presents the controversial role of emotions in projects of self-realization through the particular practice of empathetic caring. Israeli life coaches claim to allow minimal space for trainees’ emotions: they teach them to master self-steering through a calculative reflexivity that also aims to limit affect. At the same time, they engage with their trainees’ feelings by invoking emotional reactions only to argue against their trainees’ subjective experiences. The article traces this mixture of “emotion-free” empathy and authoritative neoliberal technologies of the self to a culturally specific Israeli notion of care which is grounded in an egalitarian ethos. I therefore showed that Israeli coaching produces a unique vernacular version of neoliberal selfhood, one infused with tensions between seemingly incompatible attitudes: self-reflection and authoritarian assertions and a type of empathetic concern that is centered on the caregiver’s assessment rather than the feelings of those being cared for.
Nick J Fox
Personal health technologies are near-body devices or applications designed for use by a single individual, principally outside healthcare facilities. They enable users to monitor physiological processes or body activity, are frequently communication-enabled and sometimes also intervene therapeutically. This article explores a range of personal health technologies, from blood pressure or blood glucose monitors purchased in pharmacies and fitness monitors such as Fitbit and Nike+ Fuelband to drug pumps and implantable medical devices. It applies a new materialist analysis, first reverse engineering a range of personal health technologies to explore their micropolitics and then forward engineering personal health technologies to meet, variously, public health, corporate, patient and resisting-citizen agendas. This article concludes with a critical discussion of personal health technologies and the possibilities of designing devices and apps that might foster subversive micropolitics and encourage collective and resisting ‘citizen health’.
Colleen Derkatch and Philippa Spoel
This article explores how the recent and growing promotion of local foods by public health units in Ontario, Canada, rhetorically interpellates the “good” health citizen as someone who not only takes responsibility for personal health but, through the consumption and support of “local food,” also accepts and fulfills her responsibilities to care for the local economy, the community’s well-being, and the natural environment. Drawing on Charland’s concept of constitutive rhetoric, we analyze a selection of public health unit documents about local food to develop a textured account of the complex, multifaceted forms of health citizenship they constitute. Our analysis reveals that, despite their appeals to environmental sustainability and community well-being, these materials primarily characterize the ideal health citizen as an informed consumer who supports the interests of the neoliberal state through individualized lifestyle behaviors, consuming goods produced and distributed through private enterprise. By exhorting individuals to “buy local,” public health discourse therefore frames responsible health citizenship principally in consumerist terms that constrain the range of available options for citizens to engage in meaningful action vis-à-vis their food systems.
Maria Berghs, Simon M. Dyson, Karl Atkin
Connecting theoretical discussion with empirical qualitative work, this article examines how sickle cell became a site of public health intervention in terms of ‘racialised’ risks. Historically, sickle cell became socio-politically allied to ideas of repair, in terms of the state improving the health of a neglected ethnic minority population. Yet, we elucidate how partial improvements in care and education arose alongside preventative public health screening efforts. Using qualitative research based in the United Kingdom, we show how a focus on collective efforts of repair can lie in tension with how services and individuals understand and negotiate antenatal screening. We illustrate how screening for sickle cell disorder calls into question narrative identity, undoing paradigms in which ethnicity, disablement and genetic impairment become framed. Research participants noted that rather than ‘choices’, it is ‘risks’ and their negotiation that are a part of discourses of modernity and the new genetics. Furthermore, while biomedical paradigms are rationally and ethically (de)constructed by participants, this was never fully engaged with by professionals, contributing to overall perception of antenatal screening as disempowering and leading to disengagement.
Natalie Armstrong and Sara Kenyon
Choice and patient involvement in decision-making are strong aspirations of contemporary healthcare. One of the most striking areas in which this is played out is maternity care where recent policy has focused on choice and supporting normal birth. However, birth is sometimes not straightforward and unanticipated complications can rapidly reduce choice. We draw on the accounts of women who experienced delay during labour with their first child. This occurs when progress is slow, and syntocinon is administered to strengthen and regulate contractions. Once delay has been recognized, the clinical circumstances limit choice. Drawing on Mol’s work on the logics of choice and care, we explore how, although often upsetting, women accepted that their choices and plans were no longer feasible. The majority were happy to defer to professionals who they regarded as having the necessary technical expertise, while some adopted a more traditional medical model and actively rejected involvement in decision-making altogether. Only a minority wanted to continue active involvement in decision-making, although the extent to which the possibility existed for them to do so was questionable. Women appeared to accept that their ideals of choice and involvement had to be abandoned, and that clinical circumstances legitimately changed events.
Christelle Clary, Stephen Augustus Matthews, Yan Kestens
Good accessibility to both healthy and unhealthy food outlets is a greater reality than food deserts. Yet, there is a lack of conceptual insights on the contextual factors that push individuals to opt for healthy or unhealthy food outlets when both options are accessible. Our comprehension of foodscape influences on dietary behaviours would benefit from a better understanding of the decision-making process for food outlet choices. In this paper, we build on the fundamental position that outlet choices are conditioned by how much outlets’ attributes accommodate individuals’ constraints and preferences. We further argue that food outlets continuously experienced within individuals’ daily-path help people re-evaluate food acquisition possibilities, push them to form intentions, and shape their preferences for the choices they will subsequently make. Doing so, we suggest differentiating access, defined as the potential for the foodscape to be used at the time when individuals decide to do so, from exposure, which acts as a constant catalyst for knowledge, intention, preferences and routine tendency. We conclude with implications for future research, and discuss consequences for public policy.
HIV/AIDS continues to be intimately entwined with the moral domain, and thus a positive diagnosis can cast doubt on a person’s moral status. I draw on recent literature in the anthropology of ethics and morality, as well as feminist moral philosophy, to analyse the post-diagnosis practices of HIV-positive women in Papua New Guinea as they attempt to recuperate their moral personhood and make their ethical commitments visible to others. I argue that they carve out a repertoire of (extra)ordinary ethics from the ‘ordinary’ domain and that their practices tend towards a deontological ethics, rather than a virtue ethics, orientation.
Marcia C. Inhorn
Dubai—one of the seven United Arab Emirates and the Middle East’s only “global city”—is gaining a reputation as a transnational medical tourism hub. Characterized by its “medical cosmopolitanism,” Dubai is now attracting medical travelers from around the world, some of whom are seeking assisted conception. Dubai is fast becoming known as a new transnational “reprohub” for intracytoplasmic sperm injection (ICSI), the variant of in vitro fertilization designed to overcome male infertility. Based on ethnographic research conducted in one of the country’s most cosmopolitan clinics, this article explores the ICSI treatment quests of infertile men coming to Dubai from scores of other nations. The case of an infertile British-Moroccan man is highlighted to demonstrate why ICSI is a particularly compelling “masculine hope technology” for infertile Muslim men. Thus, Muslim men who face barriers to ICSI access in their home countries may become “reprotravelers” to Dubai, an emergent ICSI depot.
Holly Donahue Singh
This article reappraises the link between fertility and women’s status by examining changing means and meanings of reproduction in India. It is based on data gathered during and after 16 months of ethnographic fieldwork conducted between 2005 and 2007 in Lucknow, Uttar Pradesh, India, on social and cultural contexts of infertility. Lucknow is the capital city of Uttar Pradesh, India’s most populous state. Historical views of population and fertility control in India and perspectives on the contemporary use of assisted reproductive technologies (ARTs) for practices such as surrogacy situate the ethnographic perspectives. Analysis of ARTs in practice complicates ideas of autonomy and choice in reproduction. Results show that these technologies allow women to challenge power relations within their marital families and pursue stigmatized forms of reproduction. However, they also offer new ways for families to continue and extend an old pattern of exerting control over women’s reproductive potential.
Elise Andaya and Joanna Mishtal
Women’s rights to legal abortion in the United States are now facing their greatest social and legislative challenges since its 1973 legalization. Legislation restricting rights and access to abortion care has been passed at state and federal levels at an unprecedented rate. Given the renewed vigor of anti-abortion movements, we call on anthropologists to engage with this shifting landscape of reproductive politics. This article examines recent legislation that has severely limited abortion access and maps possible directions for future anthropological analysis. We argue that anthropology can provide unique contributions to broader abortion research. The study of abortion politics in the United States today is not only a rich opportunity for applied and policy-oriented ethnographic research. It also provides a sharply focused lens onto broader theoretical concerns in anthropology and new social formations across moral, medical, political, and scientific fields in 21st-century America.
Jill Fleuriet and T.S. Sunil
We argue that changes over time in how ideas of stress are incorporated into understandings of pregnancy and motherhood among Mexican immigrant women living in the United States may affect the documented increase of low birth weight infants born to those women. Stress has consistently been linked to low birth weight, and pregnant Mexican American and Mexican immigrant women differ in levels of perceived social stress. What is lacking is an explanation for these differences. We utilize a subset of 36 ethnographic interviews with pregnant immigrant women from northern Mexico and Mexican Americans living in south Texas to demonstrate how meanings of pregnancy and motherhood increasingly integrate notions of stress the longer immigrant Mexican women live in the United States. We situate our results within anthropological and sociological research on motherhood in the United States and Mexico, anthropological research in the U.S.–Mexico borderlands, and interdisciplinary research on Hispanic rates of low birth weight.
This article explores how aging patients in Russia assemble strategies of care in the face of commercialization of medical services and public health discourses and initiatives aimed at improving the population’s lifestyle habits. By focusing on how the formation of pensioner publics intersects with the health-seeking trajectories of elderly patients, it tracks an emerging ethic of collective self-care—a form of therapeutic collectivity that challenges articulations of good health as primarily an extension of personal responsibility or solely as a corollary of access to medical resources. By drawing on traditional medicine, these pensioners rely on and advocate for stranger intimacies that offer tactics for survival in the present through the care of (and for) a shared and embodied post-socialist condition of social, economic, and bodily precarity.
Samantha L. Solimeo, Sarah S. Ono, Kenda R. Stewart, Michelle A. Lampman, Gary E. Rosenthal, and Greg L. Stewart
International implementation of the patient-centered medical home (PCMH) model for delivering primary care has dramatically increased in the last decade. A majority of research on PCMH’s impact has emphasized the care provided by clinically trained staff. In this article, we report our ethnographic analysis of data collected from Department of Veterans Affairs staff implementing PACT, the VA version of PCMH. Teams were trained to use within-team delegation, largely accomplished through attention to clinical licensure, to differentiate staff in providing efficient, patient-centered care. In doing so, PACT may reinforce a clinically defined culture of care that countermands PCMH ideals. Such competing rubrics for care are brought into relief through a focus on the care work performed by clerks. Ethnographic analysis identifies clerks’ care as a kind of emotional dirty work, signaling important areas for future anthropological study of the relationships among patient-centered care, stigma, and clinical authority.
While medical research ethics guidelines frame participants as individual and autonomous, anthropologists emphasize the relational nature of health research participation. I analyze interviews with Mexican male HPV study participants and their wives to examine how research participants themselves focus on relationships when imagining research-related benefits. I argue that couples incorporated the local trope of the Mexican citizenry as a biologically homogeneous national body, which individual members help or harm through their gendered health behavior to understand these benefits. I use the concept of “ethical intercorporeality” to discuss spouses’ understandings of themselves as parts of bio–social wholes—the couple, family, and society—that they believed men’s research participation could aid both physically and socially. This finding extends the insight that focusing on relationships rather than individuals is necessary for understanding the consequences of medical research by showing how participants themselves might apply this perspective in context-specific ways.
The South African constitution ratifies water as a human right. Yet millions of citizens remain disconnected from the national water infrastructure. Drawing on data collected in 2013–2014 from women in northern South Africa, this study explores “water citizenship”—individual civic engagement related to improving water service provision. Literature indicates that water insecurity is associated with emotional distress and that water-related emotional distress influences citizen engagement. I extend these lines of research by assessing the connection that water insecurity and emotional distress may collectively have with civic engagement to improve access to water infrastructure.
In recent decades studies based on questionnaires and interviews have concluded that when doctors become ill they face significant barriers to seeking help. Several reasons have been proposed, primarily the notion that doctors’ work environment predisposes them to an inappropriate help-seeking behaviour. In this article, the idea of the ill physician as a paradox in a medical drama is examined. Through a text-interpretive and comparative approach to historical illness narratives written by doctors suffering from one specific diagnosis, namely opioid addiction, the complex set of considerations guiding their behaviour as patients are to some extent revealed. The article concludes that, in the identity transition necessary to become a patient, doctors are held back by their professional status and that every step to assist them needs to take shape based on an awareness of the underlying principles of the medical drama. Written illness narratives by doctors, such as those highlighted in this article, might serve as a tool to increase such awareness.
Workplace suicide has become an urgent social concern internationally with rising numbers of employees choosing to kill themselves in the face of extreme pressures at work. Yet, research on this phenomenon is hampered by fragmentary statistical data and the sheer contentiousness of this issue. This paper presents the preliminary findings of a research project on workplace suicides in France, where there has been a ‘suicide epidemic’ across a wide range of companies. I draw on an analysis of suicide letters linked to 23 suicide cases across three French companies during the period 2005–2015. My methodological approach is informed by the work of suicide sociologist, Jack D Douglas, who emphasised the importance of narrative, testimony and voice to our understanding of the causes of suicide. Douglas argued that an analysis of the ‘social meanings’ of suicide should start with a consideration of the motivations attributed to self-killing by suicidal individuals themselves and those close to them. Why does work or conditions of work push some individuals to take their own lives? What can the ‘suicide voices’ articulated in recent testimonies tell us about the causes of workplace suicide? In this paper, I treat suicide letters as a unique mode of testimony that can reveal some of the profound effects of workplace transformations on subjective, intimate and lived experiences of work. By examining French suicide testimonies, my aim is to deepen our understanding of the nature and causes of suicide in today’s globalised workplaces.
This paper draws on stories of diagnosis that emerged from a broader narrative study exploring the lived experience of Parkinson’s (n.37). Despite the life-changing nature of their diagnosis, participants’ narratives highlighted considerable shortcomings in the way in which their diagnostic encounter was handled, echoing the findings of previous research in which it has been noted that ‘the human significance’ of diagnosis was passed over. Building on the literature, this paper provides empirical material that reveals the sensitivities involved at the moment of diagnosis. By examining both the structure and content of participants’ narratives, this article discusses the diagnostic encounter in relation to three key concepts that connected many participants’ stories: a ‘bareness’ or lack of ‘ceremony’, a sense of emotional and physical ‘abandonment’ and the impact on a person’s illness story when faced with a ‘hierarchy’ of illness. This paper aims to raise awareness of contemporary issues related to the diagnosis of Parkinson’s, and invites reflection on how diagnosis might be undertaken in a way that truly acknowledges its human significance.
Clemet Askheim, Tony Sandset, and Eivind Engebretsen
Over the last 20 years, the evidence-based medicine (EBM) movement has sought to develop standardised approaches to patient treatment by drawing on research results from randomised controlled trials (RCTs). The Cochrane Collaboration and its eponym, Archie Cochrane, have become symbols of this development, and Cochrane’s book Effectiveness and Efficiency from 1972 is often referred to as the first sketch of what was to become EBM. In this article, we claim that this construction of EBM’s historical roots is based on a selective reading of Cochrane’s text. Through a close reading of this text, we show that the principal aim of modern EBM, namely to warrant clinical decisions based on evidence drawn from RCTs, is not part of Cochrane’s original project. He had more modest ambitions for what RCTs can accomplish, and, more importantly, he was more concerned with care and equality than are his followers in the EBM movement. We try to reconstruct some of Cochrane’s lost legacy and to articulate some of the important silences in Effectiveness and Efficiency. From these clues it might be possible, we argue, to remodel EBM in a broader, more pluralistic, more democratic and less authoritarian manner.
Marlon Rachquel Moore
Operating at the intersecion of thanatopolitics and African-American cultural studies, this essay argues that the commercial sale of HeLa-themed art and other bioproducts perpetuates the bioslavery of HeLa cells, a circumstance created by legal and medical discourses tracing back to US racial slavery. Racial slavery normalised economic, social and legal inequities that the nation continues to struggle with and, the article posits, laid foundation for the dynamics that currently exist between Henrietta Lacks’ genealogical family, the HeLa cell line, and the medical-pharmaceutical establishment. The author turns to fashion ethics discourse and trademark law as potential sites for reparations.