Here are some of the journal articles that have been published in March 2015. Enjoy!
Origin stories from a regional placenta tissue collection (open access)
Maria Fannin and Julie Kent
Twenty-three years ago when women and their children were recruited to a longitudinal genetic epidemiological study during pregnancy, placentas were collected at birth. This paper explores the history of a regional placenta biobank and contemporary understandings of its value for the constitution of a research population. We draw on interviews with some of the mothers and those responsible for the establishment and curation of the placenta collection in order to explore the significance and meaning of the collection for them. Given its capacity to stand in for the study cohort of mothers and children, we argue that the material significance of the placenta biobank as a research tool seems far less important than the work it does in constituting a population. The stories about this collection may be understood within the wider context of developments in biobanking and the bioeconomy.
Standardizing work as a recursive process: shaping the embryonic stem cell field
Lena Eriksson and Andrew Webster
In this paper, we examine processes of standardization and their role in helping to stabilize human embryonic stem cells as biological objects and in building the stem cell field itself. Drawing on empirical data from the emerging embryonic stem cell field, we explore the various arenas within which standardizing work goes on and how these relate to each other as different types of labour within and beyond the lab, one to do with stabilizing the bio-object and a second to do with its comparability and identity within a wider domain. Standardizing work reflects the recursive relation between these processes which are discussed via the concepts of bio-objectification and bio-identification.
How UK psychiatric geneticists understand and talk about engaging the public
Jamie Lewis and Andrew Bartlett
The paper examines how leading UK psychiatric geneticists talk about public engagement. Scientific fields have distinctive publics, with specific goals for, concerns with, and obstacles to engagement. In psychiatric genetics these publics include people with psychiatric disorders, policy-makers, and even medics. We found that psychiatric geneticists justify public engagement by using the language of “stigma” in multiple ways. There is a belief in a deficit model of stigma that stigmatizing attitudes among the general public and government are the result of insufficient knowledge of the biological causes of psychiatric disorders. “Stigma” is, however, also co-opted to do rhetorical work within biomedicine, marking differences in therapeutic optimism as pathological. We suggest that the wider field of UK psychiatry is seen as mostly consisting of therapeutic pessimists, while the psychiatric geneticists are in a minority of therapeutic optimists. These attitudes are the product of the historical and social context of the field.
Risky Bodies in the Plasma Bioeconomy: A Feminist Analysis
Julie Kent and Anne-Maree Farrell
In 2003 the UK National Blood Service introduced a policy of ‘male donor preference’ which involved women’s plasma being discarded following blood collection. The policy was based on the view that data relating to the incidence of Transfusion-Related Acute Lung Injury (TRALI) was linked to transfusion with women’s plasma. While appearing to treat female donors as equal to male donors, exclusion criteria operate after donation at the stage of processing blood, thus perpetuating myths of universality even though only certain ‘extractions’ from women are retained for use in transfusion. Many women in the UK receive a plasma-derived product called Anti-D immunoglobulin which is manufactured from pooled male plasma. This article examines ways in which gender has significance for understanding blood relations, and how the blood economy is gendered. In our study of relations between blood donors and recipients, we explore how gendered bodies are produced through the discursive and material practices within blood services. We examine both how donation policies and the manufacturing and use of blood products produces gendered blood relations.
Narratives of Participation in Autism Genetics Research
Jennifer S. Singh
This article provides empirical evidence of the social context and moral reasoning embedded within a parents’ decision to participate in autism genetics research. Based on in-depth interviews of parents who donated their family’s blood and medical information to an autism genetic database, three narratives of participation are analyzed, including the altruistic parent, the obligated parent, and the diagnostic parent. Although parents in this study were not generally concerned with bioethical principles such as autonomy and the issues of informed consent and/or privacy and confidentiality of genetic information, a critical analysis reveals contextual bioethics embedded within these different narratives. These include the negotiations of responsibility that parents confront in biomedical research, the misguided hope and expectations parents place in genomic science, and the structural barriers of obtaining an autism diagnosis and educational services. Based on these findings, this article demonstrates the limits of a principle-based approach to bioethics and the emergent forms of biological citizenship that takes into account the social situations of people’s lives and the moral reasoning they negotiate when participating in autism genetic research.
The past 40 years have seen a significant increase in diagnoses of autism spectrum disorder (ASD), a condition characterized by social impairments and restricted or repetitive behaviors. This increase has been particularly marked in the United States, where prevalence estimates have risen from 1 in 2,500 children in 1987 to 1 in 88 today (Baio and Centers for Disease Control and Prevention 2012; Ritvo et al. 1989). I argue that changing social environments are one factor contributing to this increase by altering trajectories of social development, particularly among those with social-cognitive vulnerabilities in the absence of comorbid intellectual impairment. In a sociocultural milieu in which friendships and other extra-familial relationships are increasingly determined by individual choice, with affiliations formed around likeability and the negotiation of mutual positive affect, those who are slower to develop nonverbal awareness, perspective taking, and emotional self-regulation are often excluded from the flow of social life. Such exclusion results in the rapid amplification of characteristics considered to be deviant, thus perpetuating worsening cycles of exclusion and atypical development.
Medical Anthropology Quarterly (open access)
Medical Humanitarianism: Anthropologists Speak Out on Policy and Practice
Sharon Abramowitz, Meredith Marten, and Catherine Panter-Brick
In recent years, anthropologists have become increasingly present in medical humanitarian situations as scholars, consultants, and humanitarian practitioners and have acquired insight into medical humanitarian policy and practice. In 2012, we implemented a poll on anthropology, health, and humanitarian practice in which 75 anthropologists discussed their experiences in medical humanitarianism. Our goal was to move beyond the existing anarchy of individual voices in anthropological writing and gain an aggregate view of the perspective of anthropologists working in medical humanitarian contexts. Responses lead to six inductively derived thematic priorities. The findings illustrate how anthropologists perceive medical humanitarian practice; which aspects of medical humanitarianism should be seen as priorities for anthropological research; and how anthropologists use ethnography in humanitarian contexts.
This article examines experiences of returned migrants seeking mental health care at the public psychiatric hospital in Oaxaca, Mexico. Approximately one-third of the hospital’s patients have migration experience, and many return to Oaxaca due to mental health crises precipitated by conditions of structural vulnerability and “illegality” in the United States. Once home, migrants, their families, and their doctors struggle to interpret and allay these “transnational disorders”—disorders structurally produced and personally experienced within the borders of more than one country. Considering how space and time shape illness and treatment among transnational migrants, I contend that a critical phenomenology of illegality must incorporate migrant experience and political economy on both sides of the border before, during, and after migration.
Drawing on data from a longitudinal study of 47 adolescents of diverse ethnic backgrounds hospitalized for psychiatric disorder in New Mexico, the article critically examines the relevance of post-traumatic stress disorder (PTSD) to address anthropological questions of how to define the problem. Factors include the utility/limitation of psychiatric diagnostic categories, the lived experience of severe distress, the socioeconomic and political conditions of suffering, and reciprocal relations between immediate and remote social institutions. I discuss the mental health care system for adolescents and present two case studies of young inpatients, emphasizing the need for dual specification of the conditions of trauma and the structure of experience. I argue for understanding patterns of abandonment that shape the raw existence of young people at both the personal and collective levels to apprehend their depth and durability.
Self-care and Subjectivity among Mexican Diabetes Patients in the United States
Rebecca Seligman, Emily Mendenhall, Maria D. Valdovinos, Alicia Fernandez and Elizabeth A. Jacobs
Type 2 diabetes is considered a public health crisis, particularly among people of Mexican descent in the United States. Clinical approaches to diabetes management increasingly emphasize self-care, which places responsibility for illness on individuals and mandates self-regulation. Using narrative and free-list data from a two-phase study of low-income first- and second-generation Mexican immigrants living with diabetes, we present evidence that self-care among our participants involves emotion regulation as well as maintenance of and care for family. These findings suggest, in turn, that the ideology of selfhood on which these practices are based does not correspond with the ideology of selfhood cultivated in the U.S. clinical sphere. Divergence between these ideologies may lead to self-conflict for patients and the experience of moral blame. We argue that our participants use their explanations of diabetes causality and control as a form of self-making, which both resists such blame and asserts an alternative form of selfhood that may align more closely with the values held by our Mexican-American participants.
This article describes a pluralistic regime of oral health provision in a rural part of northern Lebanon, where dental care came from two main sources: professionally trained dentists and “informal” Dom dentists with Syrian nationality. Relying on a combination of interviews and ethnography, I offer a multivocal view of oral health services that incorporates data from patients and formal and informal providers. I argue that informal dentistry constituted an interstitial and translocal mode of dental care. In the northern Lebanese Biqa Valley, close to the Syrian border, the local articulation of neoliberal health governance created opportunities for heterodox practices in oral health. The organization of informality was predicated on the presence of the open border between Syria and Lebanon, which favored patterns of flexible cross-border mobility. In this context, informal dentistry was not alternative, but supplementary and lateral in relation to official forms of oral health provision.
This article analyzes community health workers’ (CHW) capacities for empathic service within an AIDS treatment program in Addis Ababa. I show how CHWs’ capacities to build relationships with stigmatized people, reconcile family disputes, and confront death draw on a constellation of values, desires, and emotions encouraged by CHWs’ families and religious teachings. I then examine the ways in which the capacities of CHWs were valued by the institutions that deployed them. NGO and government officials recognized that empathic care was crucial to both saving and improving the quality of people’s lives. These institutional actors also defended a policy of not financially remunerating CHWs, partly by constructing their capacities as so valuable that they become “priceless” and therefore only remunerable with immaterial satisfaction. Positive change within CHW programs requires ethnographic analysis of how CHWs exercise capacities for empathic care as well as consideration of how global health institutions value these capacities.
Based on ethnographic fieldwork in a U.S. men’s prison, I investigate how this social and cultural context structures relations between correctional officers and inmates with severe mental illness. Utilizing interpretivist perspectives, I explore how these relations are structured by trust, respect, and meanings associated with mental illness. Officers’ discretionary responses to mentally ill inmates included observations to ensure psychiatric stability and flexibility in rule enforcement and were embedded within their role to ensure staff and inmate safety. Officers identified housing, employment, and social support as important for inmates’ psychiatric stability as medications. Inmates identified officers’ observation and responsiveness to help seeking as assisting in institutional functioning. These findings demonstrate that this prison’s structures and values enable officers’ discretion with mentally ill inmates, rather than solely fostering custodial responses to these inmates’ behaviors. These officers’ responses to inmates with mental illness concurrently support custodial control and the prison’s order.
Juggling efficiency. An ethnographic study exploring healthcare seeking practices and institutional logics in Danish primary care settings
Rikke Sand Andersen and Peter Vedsted
This article explores the mutually constituting relationship between healthcare seeking practices and the socio-political context of clinical encounters. On the basis of ethnographic fieldwork carried out in the context of Danish primary care (general practice) and inspired by recent writings on institutional logics, we illustrate how a logic of efficiency organise and give shape to healthcare seeking practices as they manifest in local clinical settings. Overall, patient concerns are reconfigured to fit the local clinical setting and healthcare professionals and patients are required to juggle efficiency in order to deal with uncertainties and meet more complex or unpredictable needs. Lastly, building on the empirical case of cancer diagnostics, we discuss the implications of the pervasiveness of the logic of efficiency in the clinical setting and argue that provision of medical care in today’s primary care settings requires careful balancing of increasing demands of efficiency, greater complexity of biomedical knowledge and consideration for individual patient needs.
International clinical trials, cardiovascular disease and treatment options in the Russian Federation: Research and treatment in practice
Olga Zvonareva, Nora Engel, Sergey Martsevich, Guido de Wert, and Klasien Horstman
The issue of balance between research and treatment in clinical trials conduct has been surrounded by controversies. Scientific characteristics of trials may compromise medical care available to participants, while conceiving research participation as having therapeutic value may foster the therapeutic misconception. However, it has also been questioned whether research can and should always be separated from medical care provision. In this paper we analyze how these concerns played out in practice settings of the three trial sites in Russia, specialized in trials in cardiovascular diseases. Using in-depth interviews with participants of phase II and III trials (n = 21) and discussions with physician-investigators (n = 7), we found that trial enrollment allowed participants to establish continuous supportive relationships with the physician-investigators. In the context of unresponsive health care, chronically ill participants received regular monitoring, treatment recommendations and help in case of problems and emergencies through such relationships. The trial designs in the three sites did not preclude the provision of individualized treatment. We suggest that debates about the research/treatment interface in trials need to become more attuned to the conditions in locations of their conduct, views and experiences of actors involved and evolving trial methodologies. Too much focus on categorical differentiation of research and treatment may obscure the fact that globalizing clinical trials proceed amidst profound health disparities, dismiss diverse concerns of people on the ground and risk attenuating responsibilities of trial organizers, sponsors and investigators towards research participants.
Therapeutic landscapes and living with breast cancer: The lived experiences of Thai women
Pranee Liamputtong and Dusanee Suwankhong
Breast cancer is an “emotionally debilitating disease” that affects the lives of women of all ages. In this paper, we discuss the lived experience of breast cancer among women in southern Thailand and situate our discussions within the concept of therapeutic landscapes. We adopted a feminist framework as our research methodology and employed qualitative and innovative methods. The therapeutic landscapes of healing involved multiple levels of landscape changes including body, home, neighbourhood, health care and cultural contexts. Our findings offer a particular insight into the role of emotions, cultural beliefs, and practices in forming therapeutic landscapes among women living with breast cancer in Thailand. It is crucial that health care providers understand the emotional experiences of women with breast cancer and their particular cultural needs for emotional healing landscapes. Our findings could be used as evidence for developing culturally appropriate therapeutic strategies and interventions for women with breast cancer in Thailand and elsewhere.
The One Health Movement has been a primary advocate for collaboration across disciplinary and organizational sectors in the study of infectious diseases. There is potentially much to be gained by incorporating the interrelations of animal and human ecosystems, as well as the expertise of veterinary, medical, and public health practitioners. Too often, however, the idea rather than the realities of collaboration become valorized within One Health approaches. Paying little to no attention to the motivations, ontologies, and politics of collaborative arrangements, however, is a critical mistake, one that diminishes considerably One Health framework explanatory powers. Using Anna Tsing’s framework of friction, in this paper I take the examples of malaria and tuberculosis pharmaceuticals collaborations, often called Product Development Partnerships, to argue for the need to attend to the conditions under which collaborations across divergent disciplines, geographies, organizations, and institutions might work productively and when they do not.