Science, Medicine, and Anthropology
Late but still lively: it’s October’s installation of In the Journals.
Ethics in Human Biology: A Historical Perspective on Present Challenges
Joanna Radin
The practice of human biology requires the negotiation of a range of ethical issues, including the politics of race and indigeneity, the appropriate use of research materials, and the relationship between researchers and those people from whose bodies they seek to gain knowledge. Grounding my discussion in a history of the field, I discuss key ethical turning points that have shaped the present. These include the field’s complex historical relationship to race and colonialism and the implications this relationship has for research, including the needs and desires of Indigenous peoples. This review demonstrates that human biology has been a crucible for many of the most complex ethical issues facing anthropology and allied practices of biomedicine and life science. Its future success as a field is inextricable from its practitioners’ ability to adapt in ways that foster the trust and engagement of those humans whose bodies constitute the basis for their knowledge making.
The Ethics and Aesthetics of Care
Steven P. Black
This article is positioned at the intersection of linguistic, medical, and psychological anthropology and reviews scholarship on the communicative processes that constitute moral/ethical care. Varying notions of care have become a leitmotif in efforts to include the analysis of agency and creativity in discussions of the lived experience of marginalization. Understandings of care have in common an emphasis on relationality and activity: Communicative activities of care both constitute and are made relevant by morally/ethically framed relationships with others and oneself. Embodied communication is central in both care activities and the constitution of moral/ethical care. From a phenomenological standpoint, communicative activities of care are simultaneously social action and embodied experience. This article reviews three key themes: (a) the embodied linguistic constitution of care, (b) the performance of care, and (c) exclusion from care. Together, these themes reveal common moral/ethical–aesthetic processes that are shared across diverse social and cultural contexts.
The Gender of the War on Drugs
Shaylih Muehlmann
In this review, I explore some of the lines of inquiry that have emerged in anthropology and closely related disciplines around the theme of drugs and gender. The critical research on drugs over the past few decades has tended to focus on how prohibition policies are racialized, which has been important for revealing the injustice and racism found in drug policies and in commonsense notions about drugs and drug use. Drawing from intersectional theorists who have long argued that racial categories are never experienced or imposed as singular identities separate from gender, language, class, and sexuality, I argue in this article that the literature on gender and drugs has struggled with two main interrelated problems: determining (a) how to understand gender and race together and (b) how to theorize gender in relation to power when these two factors are often conflated with each other in both popular discourse and theoretical dispositions about the war on drugs.
Special issue: The Processes of Imaging / The Imaging of Processes
Karolina Agata Kazimierczak
This article traces different devices and practices (i.e., ultrasound scan, fine needle aspiration and breast examination) involved in the clinical diagnostic practices for breast cancer and suggests that they might be productively considered as “visualization apparatuses.” Drawing on auto-ethnographic data and medical literature, it explores how these apparatuses make visible and help materialize a particular bodily configuration (e.g., a simple cyst as a benign breast disorder). In examining side by side the practices and devices commonly characterized as medical imaging such as ultrasonography and the more mundane apparatuses such as syringes or trained eyes and fingers, the article draws attention to the non-given nature of image and imaging, and to the equally non-given nature of the distinctions between vision, touch and hearing as modes of sensing and knowing. In doing so, it seeks to problematize the traditional partitioning of experience into separate and separable perceptual and epistemological modalities, while at the same time reclaiming vision, touch and hearing as metaphors for responsible and accountable knowledge-making. Bringing together feminist (Haraway, 1988; Puig de la Bellacasa, 2009; Barad, 2007; 2012) and post-phenomenological (Ihde, 2007; Ingold, 2000) work on knowledge-making and perception with the concept of synesthesia (Harris, 2016; Hayward, 2010; Marks, 2002), it argues for a certain knowledge politics beyond “sense atomism,” which helps us to rethink not only the apparent distinction in the different sensorial universes but also, more broadly, the questions of knowledge, politics, responsibility and accountability.
Prenatal Imaging: Egg Freezing, Embryo Selection and the Visual Politics of Reproductive Time
Lucy van de Wiel
In the last decade, two influential new reproductive technologies have been introduced that are changing the face of in vitrofertilization (IVF): egg freezing for “fertility preservation” and time-lapse embryo imaging for embryo selection. With these technologies emerge alternative visual representations of the assisted reproductive process and its relation to time. First, frozen egg photographs provide a lens onto contemporary reconfigurations of reproductive aging and stage a life-death dyad between the frozen cell and the embodied self, which drives treatment rationales for egg freezing. Second, time-lapse embryo imaging creates visual recordings of developing embryos in the incubator; the resultant quantified visual information can then be repurposed as a tool for predicting embryo viability. As these two sets of prenatal images reference dying eggs and non-viable embryos, they demonstrate a necropolitics of reproductive time, in which not only the generativity of new life but also the encounter with the death, finitude and fallibility of reproductive substances drives a widespread and intensified engagement with reproductive technologies.
Digital Matters: Processes of Normalization in Medical Imaging
Hannah Fitsch and Kathrin Friedrich
With the introduction of advanced computing technologies, medical imaging increasingly entails normalization – through procedures that create, shape, and adjust comparable variables deduced from processes in the living body. The computational rationalities of imaging technologies such as functional magnetic resonance imaging (fMRI) and computed tomography (CT) not only determine how human bodies are envisioned and visualized, but also how they need to be aligned with apparatuses to answer experimental and diagnostic inquiries. By drawing on the theoretical concepts of computational rationality and intra-action and on ethnographic observations, we aim to disentangle processes of normalization and intra-actions of bodies and technologies in medical imaging on three levels. First, we show how, in the history of theoretical mathematics, dynamic processes were conceptualized as discrete and hence calculable. In particular, the ideas of Joseph Fourier informed the development of fMRI imaging algorithms, which are currently applied in experimental contexts. Second, we analyze how the application of these algorithms enables and determines practices in fMRI-based research. Third, we explore how bodies and technologies are aligned with tomography scanners on a very material level and thereby demonstrate the convergence of digitalization and materialization on both conceptual and physical levels, which opens up possibilities for visualizing and understanding human bodies. On a theoretical and analytical level, we argue that a critical analysis of digital imaging processes calls for scrutiny of the epistemic and operational preconditions that are actualized but concealed in the application of imaging technologies.
Contested Sonic Space: Settler Territoriality and Sonographic Visualization at Celilo Falls
Ashton Bree Wesner
In this article, I argue that “seeing with sound” is a fraught political process with the potential to both obfuscate and assist Indigenous claims to land. I do so by analyzing the Portland District U.S. Army Corps of Engineers’ 2007 sonar images of Celilo Falls on the Columbia River. I take up feminist materialist analytics developed by Native American and Indigenous Studies scholarship on cartography and refusal, and place them in conversation with the sonic geographies of Columbia River Indigenous writers. Namely, I use Elizabeth Woody’s poem Waterways Endeavor to Translate Silence from Currents (1994) to investigate how overlapping and conflicting deployments of sonic imaging play a major cultural, political, and material role in the (re)mapping of Celilo Falls. First, I present a theoretical framework that considers the role of what I call sonic knowledges in unsettling colonial visual cartographies. I use archival Army Corps’ maps and critical sonar studies literature to show how the Army Crops’ 2007 riverbed sonograms emerge from a longer context of US settler practices of enclosing land with maps and surveying water with sound. I then turn to a close reading of newspaper articles and state legislation to analyze how the sonograms take on a present political life in ways that repackage ocularcentrism and assuage settler guilt, thus authorizing ongoing US enclosure of Indigenous lands. Yet, I also bring to bear Indigenous sonic knowledges that position imaging processes as potentially antithetical to addressing questions of access to land and self-determination. Through examining newspaper interviews, public testimonies, and Elizabeth Woody’s poem, I elucidate deployments of sonic knowledge that can help us think about what anti-colonial (re)mapping practices demand of contemporary cartographic imaging processes. Attending to sonic knowledges under conditions of settler-ocularcentrism, I suggest, might assist anti-colonial feminist science studies engagements with processes of imag(in)ing Indigenous space.
Critical Public Health (Issue 4)
Critical Public Health features a special issue on the media and public health: The media and public health: where next for critical analysis?
Databases and Doppelgängers: New Articulations of Power
Sandra Robinson
This article explores the power and efficacy of databases as part of the turn to intensive datafication in contemporary life in which we are all enfolded within a datafied milieu: a catalogued and curated data assemblage comprising aspects of our life. This assemblage of people, processes, and things is described as having a generative power—data power—producing not the “one” profiled individual, but the many multiple proxies out of the data assemblage. I reimagine the profiled individual through the literary figure of the doppelgänger: a data doppelgänger that gestures to difference and repetition and all that is ambiguously changeable within digital culture. Thinking with the data doppelgänger to interrogate the profiling apparatus enables a more complex understanding of data power beyond panoptic metaphors that ground the subject in descriptive and spectral terms rather than performative simulations. To illustrate aspects of the contemporary profiling apparatus, I briefly explore the troubling relationship between Facebook and the data analytics firm Cambridge Analytica to demonstrate how effective profiling systems are when enriched with large, social datasets.
Ronald Schleifer
This essay examines the extreme experience of pain in relation to the aesthetic experiences of music, poetry, and discursive prose. It argues that experience in general is conditioned by schemas of experience that direct attention and expectation, and for this reason, while it feels immediate—with the immediacy of experience being its defining quality—nevertheless experience, as such, is mediated. Semiotics—and the human sciences more generally—analyze such mediations. Furthermore, it argues, following the philosopher of music Victor Zuckerkandl, that experience as such cannot be understood as the epiphenomenon of (and thereby reducible to) either physics or psychology: that is, that it cannot be understood solely as a “natural fact” or solely as a “cultural construction.”
Journal of the History of Medicine and Allied Sciences
An Alternative Cure: The Adoption and Survival of Bacteriophage Therapy in the USSR, 1922–1955
Dmitriy Myelnikov
Felix D’Herelle coined the term bacteriophage in 1917 to characterize a hypothetical viral agent responsible for the mysterious phenomenon of rapid bacterial death. While the viral nature of the “phage” was only widely accepted in the 1940s, attempts to use the phenomenon in treating infections started early. After raising hopes in the interwar years, by 1945 phage therapy had been abandoned almost entirely in the West, until the recent revival of interest in response to the crisis of antibiotic resistance. The use of phage therapy, however, persisted within Soviet medicine, especially in Georgia. This article explains the adoption and survival of phage therapy in the USSR. By focusing on the Tbilisi Institute of Microbiology, Epidemiology and Bacteriophage (now the Eliava Institute), I argue that bacteriophage research appealed to Soviet scientists because it offered an ecological model for understanding bacterial infection. In the 1930s, phage therapy grew firmly imbedded within the infrastructure of Soviet microbiological institutes. During the Second World War, bacteriophage preparations gained practical recognition from physicians and military authorities. At the dawn of the Cold War, the growing scientific isolation of Soviet science protected phage therapy from the contemporary western critiques, and the ecological program of research into bacteriophages continued in Georgia.
Nursing and Hospital Abortions in the United States, 1967–1973
Karissa Haugeberg
Before elective abortion was legalized nationally in 1973 with the U.S. Supreme Court decision Roe v. Wade, seventeen states and the District of Columbia liberalized their abortion statutes. While scholars have examined the history of physicians who had performed abortions before and after it was legal and of feminists’ work to expand the range of healthcare choices available to women, we know relatively little about nurses’ work with abortion. By focusing on the history of nursing in those states that liberalized their abortion laws before Roe, this article reveals how women who sought greater control over their lives by choosing abortion encountered medical professionals who were only just beginning to question the gendered conventions that framed labor roles in American hospitals. Nurses, whose workloads increased exponentially when abortion laws were liberalized, were rarely given sufficient training to care for abortion patients. Many nurses directed their frustrations to the women patients who sought the procedure. This essay considers how the expansion of women’s right to abortion prompted nurses to question the gendered conventions that had shaped their work experiences.
Psychiatrists and the Transformation of Juvenile Justice in Philadelphia, 1965–1972
Mical Raz
In the late 1960s, Philadelphia psychiatrists evaluated every child who interacted with the city’s juvenile courts. These evaluations had an important role in determining the placement and treatment of these children, and emphasized the therapeutic nature of the juvenile courts at the time. Relying on extensive case studies compiled by the Philadelphia Department of Public Welfare, this study reconstructs the roles of psychiatrists in the experiences of children interacting with the juvenile justice system, to shed light on a hitherto unknown aspect of these children’s care. Gradually, the emphasis in juvenile justice shifted from a therapeutic approach to a more punitive one, from the mid 1970s and onwards. Yet the same structures of juvenile justice which allowed for individual discretion and “tailoring” of interventions to suit the child’s perceived needs, rather than to fit the severity of his or her infraction, lost much of their therapeutic rationale. Still, many of these characteristics of the juvenile justice system, and in particular the practice of indeterminate sentencing, remain in place today. Questioning the role of mental health professionals in the creation and perpetuation of this flawed and often unfair infrastructure is an important first step in contemplating reforms.
Between Bench and Bedside: Building Clinical Consensus at the NIH, 1977–2013
Todd M Olszewski
After World War II, the National Institutes of Health (NIH) emerged as a major patron of biomedical research. In the succeeding decades, NIH administrators sought to determine how best to disseminate the findings of the research it supported and manage their relationship with clinicians in the national community. This task of bridging research and practice fell to the Office of Medical Applications of Research (OMAR), which administered the NIH Consensus Development Program (CDP) between 1978 and 2012. This article argues that the CDP represented an unusual attempt to depoliticize biomedical research and medical practice at a particularly controversial time in American medicine. Throughout the program’s existence, administrators sought ways to bring new knowledge to the medical community without creating the appearance of regulating clinical practice. For an agency with a mandate to promote the production of new biomedical knowledge, the question remained open as to how far this responsibility extended from the bench to the bedside. In striking this balance, the leadership sought to refine their understanding of the role and mission of the NIH. The history of the CDP has much to tell us about postwar biomedical research, health politics, and the institutional development of the NIH.
Special issue: The Anthropology of Epidemic Control
Social Justice as Epidemic Control: Two Latin American Case Studies
Alex Nading & Lucy Lowe
In this article, we draw on two cases—one of the reproductive justice movements in the wake of the Latin American Zika epidemic, and one of an environmental justice movements spurred by an epidemic of chronic kidney disease among sugarcane workers—to argue for social justice as an “elastic” technology of epidemic control. In its compressed form, social justice simply refers to the fair distribution of medical goods. In its expanded form, it emphasizes the recognition and representation not just of medical problems, but of entangled histories of racial, gendered, and economic inequity.
Ethnohistory and the Dead: Cultures of Colonial Epidemiology
Branwyn Poleykett
What were the dead to colonial epidemiologists? Doctors and colonial scientists involved in the response to epidemics of plague in Madagascar in the first half of the twentieth century speculated about the role of Malagasy mortuary ritual in the spread of plague, and sought to bring Malagasy ritual into line with Pasteurian hygienic norms. I examine confrontations over death and the management of the dead in Madagascar, tracing the textured form of epidemiological knowledge that arose from the confrontation between Malagasy cosmology and Pasteurian counter epidemic technique.
Cyborg Preparedness: Incorporating Knowing and Caring Bodies into Emergency Infrastructures
Meike Wolf & Kevin Hall
Biopreparedness exercises are commonly depicted as indispensable means to enable people to respond to outbreaks of highly pathogenic infectious diseases. In this article, based on a 4-year multisited ethnography conducted in Frankfurt and London, we argue that exercises mobilize past and present events in a continuous rehearsal for the implementation and stabilization of emergency infrastructures. While relying on the embodied knowledge and the body techniques of its participants, these infrastructures necessitate continuous attention, investment, and training. Through these techniques, preventive assemblages create what we term “cyborg preparedness,” whereby human bodies, clinical architectures, and technical artifacts are subject to emerging forms of urban governance.
Ebola’s Would-be Refugees: Performing Fear and Navigating Asylum During a Public Health Emergency
Benjamin N. Lawrance
Chronic and acute illnesses sit uncomfortably with asylum claiming and refugee mobilities. The story of a Sierra Leonean, an athlete who feared Ebola and sought refuge in the UK, provides an opening to examine protection discourses that invoke fear, trauma, and crisis metaphors, to understand how asylum claims are performed, and how related petitions are adjudicated during public health emergencies of international concern. Ebola is revealed as a novel claim strategy, and thus a useful subject matter to investigate the shifting modalities of migrant agency, the unstable fabric of medical humanitarianism, and knowledge production in moments of exceptionality.
Plague Masks: The Visual Emergence of Anti-Epidemic Personal Protection Equipment
Christos Lynteris
Often described as “masks” face-worn devices are employed as personal protection equipment by health workers and the general public and considered to be an indispensable technology against epidemics. Simultaneously, they are potent symbols of existential risk. Could these material and visual aspects be more than simply indexically connected? In this article, I examine these apparatuses through a historical anthropological approach of their invention during the 1910–11 Manchurian plague outbreak. Arguing that they should be taken seriously as masks, I demonstrate that their emergence was rooted in their configuration as transformative agents of medical reason.
Unstable rights: Multidrug-resistant tuberculosis and access to rights in Rio de Janeiro, Brazil
Oriana Rainho Brás
People with multidrug-resistant tuberculosis in Rio de Janeiro accessed basic rights of citizenship, including socioeconomic rights and even formal citizenship, through their use of the public health care system. Access to those rights, however, was unstable and this had life-and-death implications. I argue that patients could only fulfil their right to live after it had been jeopardised by the absence of basic socioeconomic rights that rendered life precarious. Thus, the right to live is not a prerequisite of other rights, but rather cannot be fulfilled without them. I discuss the politics of life in this context based on ethnographic fieldwork in an outpatient clinic for multidrug-resistant tuberculosis and interviews with patients, health professionals, and activists, all conducted in 2009 and 2010 in Rio de Janeiro.
Luisa Enria, Shelley Lees
The impact of biomedicine and biomedical technologies on identity and sociality has long been the focus of medical anthropology. In this article we revisit these debates in a discussion of how unprecedented encounters with biomedicine during the West African Ebola outbreak have featured in Sierra Leoneans’ understandings of citizenship and belonging, using the case study of an Ebola vaccine trial taking place in Kambia District (EBOVAC Salone). Analysing our ethnographic material in conversation with a historical analysis of notions of belonging and citizenship, we show how participation in a vaccine trial in a moment of crisis allowed people to tell stories about themselves as political subjects and to situate themselves in a conversation about the nature of citizenship that both pre-dates and post-dates the epidemic.
The syndemogenesis of depression: Concepts and examples
Shir Lerman
Syndemics, or the deleterious interaction of diseases and structural factors, is an essential and increasingly utilized theory with which to address health inequities and how they interact with disease. However, less research has been conducted on syndemogenesis, a process by which a specific disease or structural factor is more likely to exacerbate syndemic interactions. With the increasing incidence and prevalence of depressive symptomology in Westernized nations, and with depression coexisting syndemically with other illnesses, I use depression as a case study to highlight syndemogenic processes in action. Doing so will hopefully aid preventive efforts in these areas.
Translational competency: On the role of culture in obesity interventions
Emily Yates-Doerr
This article introduces the notion of ‘translational competency’, a skill of attending to different understandings of health and how these are negotiated between medical settings and everyday life. This skill is especially important for the design of obesity-prevention policies and programs, given the diverse values surrounding both healthy eating and desirable weight. Through its focus on communicative interactions, translational competency entails a refusal to treat cultural differences regarding diet or body size as a problem. Rather, it encourages engagement with the relational contexts out of which health problems develop and transform, taking culture to be a process of negotiation and adaptation. In this article I present an example of the utility of the skill of translational competency taken from research on obesity in Guatemala. I then illustrate how translational competency might be used in the design of obesity interventions.
A tale of two Harlems: Gentrification, social capital, and implications for aging in place
Shellae Versey
Increasingly, older adults desire to remain in their communities for as long as possible, referred to as “aging in place”. While much of the aging in place literature focuses on housing specifically, there is a growing sense that social capital and community connectedness are important to the aging in place experience. The current study explores social capital in a gentrifying community to better understand the effects of rapid neighborhood change on older, African American adults.
Benjamin Elliot Yelnosky Smith, Deborah Bartz, Alisa B. Goldberg, Elizabeth Janiak
Pregnancy termination is a common, beneficial medical procedure, but abortion care in the United States is stigmatized. Language, including categorization of some abortions as elective, may both reflect and convey stigma. We present a history of the term “elective” in reference to abortion, followed by data demonstrating its use by a sample of contemporary medical trainees and an analysis of the term’s relationship to abortion stigma, medical training, and patient access to abortion care.
Jenevieve Mannella, Lida Ahmad, Ayesha Ahmad
Experiencing gender-based violence (GBV) can have serious consequences for women’s mental health. However, little is known about how to address the health consequences of GBV against women in high-prevalence settings where GBV is widely accepted as normal. This study examines the potential for narrative storytelling to support women’s mental health and alleviate the suffering caused by GBV in high-prevalence settings. It adopts a symbolic interactionist perspective to explore the perceptions and lived experiences of women living in safe houses for GBV in Afghanistan. In-depth semi-structured interviews were carried out with women (n = 20) in two Afghanistan safe houses between March and May 2017. The data were analysed both inductively and deductively using thematic network analysis. The findings reveal the stigmatising and traumatic experiences many women have had when telling their stories of GBV in this context. In contrast, storytelling under supportive conditions was perceived to be a highly valuable experience that could help formulate positive social identities and challenge broader social structures. The supportive conditions that contributed to a positive storytelling experience included the presence of a sympathetic non-judgemental listener and a supportive social environment. These findings offer an alternative to biomedical models of mental health support for women experiencing GBV in high-prevalence settings. They raise the importance of tackling broader social changes that challenge patriarchal social structures, and highlight the potential role that narrative storytelling approaches can play in high-prevalence settings like Afghanistan.
Forecasting and foreclosing futures: The temporal dissonance of advance care directives
Tanya Zivkovic
Advance care directives situate persons as rational and self-determining actors who can make anticipatory plans about their futures. This paper critically examines how people interpret individual and future-oriented approaches to medical decision-making with limited access to information and knowledge, and reduced opportunities to prepare and document their care preferences. Based on ethnographic research with Asian migrant families living in Adelaide, South Australia (August 2015–July 2018), it reveals a discord between planning for a finite future and the contingencies and continuities of social life. It unsettles the detached reasoning that is privileged in end-of-life decision-making and reveals limitations to “do-it-yourself” approaches to advance care directives which, it will be argued, not only forecasts potential futures but also forecloses them. Taking Derrida’s critique of death and decision-making as a point of departure, it develops the concept of temporal dissonance as a theoretical framework to articulate the tensions that are constituted in advance care directives. The paper suggests that attention to temporal incongruities may help to shed light on the many complex interpretations of advance care directives and the difficulties of promoting them in diverse contexts.
Sophie Crowe, Ruairi Brugha
Although there is reasonably rich literature on socialisation in medical schools, few studies have investigated emotional socialisation among qualified doctors; specifically how specialist training reproduces the norms, values, and assumptions of medical culture. This article explores expressions and management of emotion in doctors’ narratives of work and training for insights into how socialisation continues after graduation. The study employed qualitative methods – in-depth interviews – with fifty doctors at early and advanced stages of specialist training in teaching hospitals in Ireland. The study found that performance of competence, particularly for doctors at earlier training stages, required them to hide signs of struggle and uncertainty. Competence was associated with being emotionally tough, which involved hiding emotional vulnerability; however, some challenged the assumption that doctors should be able to transcend emotionally painful events. Tensions between this expression of competence and making time for self-care meant that the latter was often neglected. Some participants highlighted how they enjoyed more personal interactions with patients, which was juxtaposed with the expectation of being detached and an associated potential to objectify patients. This theme resonates with recent debates on “appropriate” expressions of empathy and its implications for patient-doctor relationships. The article discusses how ideas underpinning the image of medical invincibility should be questioned as part of efforts to reform medical culture and in the training of specialists in emotional wellbeing and self-care.
Jess Bier
This article analyzes the process of body recovery that took place after the sinking of the Titanic in 1912. Focusing on how identification was intertwined with valuation, I show how notions of economic class informed decisions about which human bodies were fit for preservation as human bodies. The RMS Titanicsteamship was a microcosm of social circulation in the early 20th-century Atlantic, and life on board was systematically stratified according to economic class. During the recovery that following the sinking, 114 bodies, or one-third of the total recovered, were buried at sea, most of them crewmembers or immigrant passengers who had held third-class tickets. Sea burial exposed the bodies to rapid and inaccessible decomposition, thereby selectively excluding those bodies from the archival and forensic record even as those victims’ names and personal artefacts were recorded for posterity. The recovery process thus demonstrates that the material existence of those passengers’ remains was not a given, but instead emerged in varied ways through identification and recovery practices. Such practices drew on notions of economic value and identifiability to shape bodily materials, which were selectively preserved, transformed, and/or put out of reach. As such, I argue that identification and valuation are thoroughly enmeshed with what I call instantiation, or determinations of how and whether something exists.
Narrating ethnicity and diversity in Middle Eastern national genome projects
Elise K Burton
Most Middle Eastern populations outside Israel have not been represented in Western-based international human genome sequencing efforts. In response, national-level projects have emerged throughout the Middle East to decode the Arab, Turkish and Iranian genomes. The discourses surrounding the ‘national genome’ that shape scientists’ representation of their work to local and international audiences evoke three intersecting analytics of nationalism: methodological, postcolonial and diasporic. Methodologically, ongoing human genome projects in Turkey and Iran follow the population logics of other national and international genome projects, for example justifying research with reference to projected health benefits to their fellow citizens. Meanwhile, assumptions about and representations of ethnicity and diversity are deeply inflected by local histories of scientific development and nationalist politics. While Iranian geneticists have transformed this paradigm to catalog national genetic diversity through a discourse of ‘Iranian ethnicities’, Turkish geneticists remain politically constrained from acknowledging ethnic diversity and struggle to distance their work from racialized narratives of Turkish national identity. Such nationally-framed narratives of genomic diversity are not confined to their original contexts, but travel abroad, as demonstrated by a US-based genome project that articulates a form of Iranian-American diasporic nationalism.
Shortcut to success? Negotiating genetic uniqueness in global biomedicine
Heta Tarkkala, Aaro Tupasela
Since the sequencing of the human genome, as well as the completion of the first Human Genome Diversity Project, the benefits of studying one human population over another has been an ongoing debate relating to the replicability of findings in other populations. The leveraging of specific populations into research markets has made headlines in cases such as deCode in Iceland, Quebec Founder Population, and Generation Scotland. In such cases, researchers and policy makers have used the genetic and historical uniqueness of their populations to attract scientific, commercial and political interest. In this article, we explore how in countries with population isolates, such as Finland, the researchers balance considerations relating to the generalization and replicability of findings in small yet unique research populations to global biomedical research interests. This highlights challenges related to forms of competition associated with genetics research markets, as well as what counts as the ‘right’ population for genetic research.
Sociology of Health and Illness
The transformative role of interaction rituals within therapeutic communities
Jenelle M. Clarke, Justin Waring
Mental health settings are fraught with emotion as clients address difficult life experiences and relational patterns. Clients spend a substantial amount of time together outside of structured therapy, but little is known about how these moments are potentially therapeutic, especially as sites of emotional change. We draw on interaction ritual chain theory to explore how negative emotions in situations outside of formal therapy can be transformed into positive emotions and facilitate personal change. The research is based upon a narrative ethnography of two therapeutic communities for individuals with a diagnosis of personality disorder. Despite the presence of negative transient emotions in these rituals, clients experienced positive feelings of solidarity and belonging, and the majority of clients reported increased feelings of confidence and positive change. Conversely, dynamics between clients showed clients were not always supportive of one another and at times, could exclude others, resulting in isolation and alienation. We argue interactions that generate feelings of inclusion or exclusion over time are a key component in whether clients gain positive or negative emotional feeling and experience personal change.
Digital health – a new medical cosmology? The case of 23andMe online genetic testing platform
Paula Saukko
This article argues that commercial digital health platforms and devices commodify participatory features of the digital creating a new medical cosmology. Drawing on sociology on medical cosmologies, research on digital media and marketing and an analysis of the 23andMe online genetic testing platform, I identify three features of this cosmology. First, digital health seeks to foment ‘flow’ or enjoyable, continuous immersion in health. Second, digital health configures its consumers as ‘co‐creators’ of health data and knowledge together with companies and other consumers. Third, digital health frames medical knowledge as tentative, up for revision and scepticism by expert and lay science. The way in which digital health configures consumers as immersed, creative and sceptical gives it an open‐ended and participatory air. However, the conceptual discussion and the analysis of the 23andMe platform highlight that these features represent commercial capture of the lifeworld, even if they appear radical against classical medical cosmologies.
Josefine Antoniades, Danielle Mazza, Bianca Brijnath
The nexus between social networks and illness behaviours is important in uptake of health care, however scant research has explored this relationship in South Asian migrants living with mental illness. We explored the interplay between culture, social networks and health seeking in Sri Lankan migrants and Anglo‐Australians living with depression. Forty‐eight in‐depth interviews were conducted and data were analysed through the theoretical prism of the network episode model. Results showed that social networks were important in negotiating care. Decisions to initiate care occurred along a continuum of choice and agency; some took charge of their care, others were coerced into care, however some Sri Lankan migrants were led through various informal channels of care. Selective activation of compatriots – those perceived to understand mental illness‐became increasingly important to participants through their illness careers. Compatriots were considered of greater benefit as participants progressed through depression than otherwise meaningful social networks based on ethnicity, culture and kinship. We argue that the role of social networks is pivotal in uptake of formal care, and engaging with communities to improve responses of social networks to mental illnesses may provide a bottom‐up avenue for improving uptake of mental health services in migrant communities.
‘Who does this patient belong to?’ boundary work and the re/making of (NSTEMI) heart attack patients
Helen Cramer, Jacki Hughes, Rachel Johnson, Maggie Evans, Christi Deaton, Adam Timmis, Harry Hemingway, Gene Feder, Katie Featherstone
This ethnography within ten English and Welsh hospitals explores the significance of boundary work and the impacts of this work on the quality of care experienced by heart attack patients who have suspected non‐ST segment elevation myocardial infarction (NSTEMI) /non‐ST elevation acute coronary syndrome. Beginning with the initial identification and prioritisation of patients, boundary work informed negotiations over responsibility for patients, their transfer and admission to different wards, and their access to specific domains in order to receive diagnostic tests and treatment. In order to navigate boundaries successfully and for their clinical needs to be more easily recognised by staff, a patient needed to become a stable boundary object. Ongoing uncertainty in fixing their clinical classification, was a key reason why many NSTEMI patients faltered as boundary objects. Viewing NSTEMI patients as boundary objects helps to articulate the critical and ongoing process of classification and categorisation in the creation and maintenance of boundary objects. We show the essential, but hidden, role of boundary actors in making and re‐making patients into boundary objects. Physical location was critical and the parallel processes of exclusion and restriction of boundary object status can lead to marginalisation of some patients and inequalities of care.
Juan Chen
In recent years, various levels of the Chinese government have undertaken the task of developing new models of community-based mental health services. Greater availability and higher quality will not result in substantial improvements if those suffering from mental illnesses do not use the services. This article examines not only people’s cultural perception of mental health and help-seeking but also their practical concerns and preferences about mental health service provision in urban China. The study analyzes qualitative data from in-depth interviews with 50 respondents who belong to the most psychologically distressed subgroup (with the Kessler Psychological Distress Scale (K10) score ≥ 25) identified in a household survey in Beijing. While stigma about mental illness and help-seeking is real and well described, most interviewees are also not aware of the availability of professional mental health services. They believe that professional services target the upper-middle and upper classes, and are outside the sphere of their daily life and socio-economic status. The interviewees do not welcome the prospect of a mental health clinic or treatment center in their neighborhood due to concerns about stigma and confidentiality; instead, they support the creation of mental health referral services and promotion programs within the community or on the Internet. The findings suggest that the development of community-based mental health services in mainland China should take into account not only the cultural constraints that make people reluctant to seek professional help but also the structural inadequacies that deter potential user groups from accessing such services.
Victoria M. O’Keefe, Raymond P. Tucker, Ashley B. Cole, David W. Hollingsworth, LaRicka R. Wingate
Many American Indian/Alaska Native (AI/AN) communities throughout North America continue to experience the devastating impact of suicide. Theoretical explanations of suicide from a psychological, sociological, cultural, and Indigenous perspective all differ in focus and applicability to AI/AN communities. These diverse theoretical frameworks and models are presented herein to examine the potential applicability, strengths, and limitations in understanding AI/AN suicide. In providing these perspectives, continued discussions and empirical examinations of AI/AN suicide can guide informative, culturally-informed suicide prevention and intervention efforts.
Beyond two worlds: Identity narratives and the aspirational futures of Alaska Native youth
Lucas Trout, Lisa Wexler, Joshua Moses
Indigenous communities across the Alaskan Arctic have experienced profound revisions of livelihood, culture, and autonomy over the past century of colonization, creating radical discontinuities between the lives of young people and those of their parents and Elders. The disrupted processes of identity development, access to livelihoods, and cross-generational mentorship associated with colonialism have created complex challenges for youth as they envision and enact viable paths forward in the context of a rapidly changing Arctic home. In this study, we consider the meanings associated with different constructions of culture and selfhood, and the ways in which these identity narratives position Inupiaq Alaskan Native youth in relation to their personal and collective futures. Through an intergenerational and participatory inquiry process, this study explores how representations of shared heritage, present-day struggles, resilience, and hope can expand possibilities for youth and thus impact individual and community health.