Here is a selection of journal articles published toward the end of March. Also check out this month’s first In the Journals post, and Science in Context’s special issue on mind and brain science in the twentieth century.
Disability Studies Quarterly (Open Access)
Listen and Speak: Power-Knowledge-Truth and Cochlear Implants in Toronto
Tracey Edelist
Cochlear implants and auditory-verbal therapy are the latest techniques and technologies used to make deaf people learn to listen and speak. This paper provides a genealogical analysis of the Cochlear Implant Program at SickKids Hospital in Toronto, Ontario, Canada and shows how this program exemplifies the medicalization of deafness while denying deaf children the opportunity to learn sign language. Using Foucault’s concept of governmentality, the relations between power, knowledge, truth and their influences on the program’s practices are revealed in order to provide insight into Canadian society’s conceptions of deafness. This analysis reveals the Cochlear Implant Program as a capitalist establishment that is supported by unquestioned reverence of modern medicine and technology, oriented by a quest for normalcy. The paper concludes by encouraging members of the Deaf community and their supporters to challenge the hegemony of normalcy by utilizing alternate research-based knowledge-truths of cochlear implants and sign language.
“Crying Doesn’t Work”: Emotion and Parental Involvement of Working Class Mothers Raising Children with Developmental Disabilities
Amy Christine Sousa
This article presents three critical case studies that explore the relationship between income and parental involvement in the education of children with developmental disabilities. Interviewed as part of a larger study on mothering children with developmental disabilities, Joy, Jackie, and Maya are low income mothers of children with severe developmental disabilities living in New Hampshire. These women describe carefully planned parenting practices designed to foster child development, which yield both engagement with and strategic disengagement from formal bureaucracies. This is a decided departure from previous theorization on low income mothers’ approaches to child development. Grounded analysis of these interview cases suggests that emotion management may be a critical factor in both structuring parental involvement with educational systems as well as enacting class differences within the special education system.
Biologising parenting: neuroscience discourse, English social and public health policy and understandings of the child
Pam Lowe, Ellie Lee, and Jan Macvaris
In recent years, claims about children’s developing brains have become central to the formation of child health and welfare policies in England. While these policies assert that they are based on neuro-scientific discoveries, their relationship to neuroscience itself has been debated. However, what is clear is that they portray a particular understanding of children and childhood, one that is marked by a lack of acknowledgment of child personhood. Using an analysis of key government-commissioned reports and additional advocacy documents, this article illustrates the ways that the mind of the child is reduced to the brain, and this brain comes to represent the child. It is argued that a highly reductionist and limiting construction of the child is produced, alongside the idea that parenting is the main factor in child development. It is concluded that this focus on children’s brains, with its accompanying deterministic perspective on parenting, overlooks children’s embodied lives and this has implications for the design of children’s health and welfare services.
What am I ‘living’ with? Growing up with HIV in Uganda and Zimbabwe
Sarah Bernays, Janet Seeley, Tim Rhodes and Zivai Mupambireyi
As paediatric HIV treatment has become increasingly available across the world, the global perinatally infected cohort is ageing. However, we know surprisingly little about what it is like to grow up with HIV in resource-stretched settings. We draw on findings from a prospective, qualitative study with HIV-positive children, their carers and healthcare workers from four clinics in Uganda and Zimbabwe to examine children’s experiences of living with HIV on treatment. We consider how the HIV experience is made in a symbiotic relationship between children, carers and healthcare workers and shaped by broader discourses. Despite the radical development in prognosis for children, their experience of HIV is largely constructed in relation to a language of ‘sickness’ through the promotion of medicalised talk and the recounting of past illness stories. This narrow narrative framework both reflects and reproduces core dimensions of the lived experience of growing up with HIV, which emphasises an absence of resilient healthiness in the face of ongoing vulnerability and risk. The challenges that children encounter in articulating alternative narratives that prioritise the relative buoyancy of their health is indicative of the broader uncertainty that exists around the future for these children at this point in the epidemic.
Vital Systems Security: Reflexive Biopolitics and the Government of Emergency
Stephen J Collier and Andrew Lakoff
This article describes the historical emergence of vital systems security, analyzing it as a significant mutation in biopolitical modernity. The story begins in the early 20th century, when planners and policy-makers recognized the increasing dependence of collective life on interlinked systems such as transportation, electricity, and water. Over the following decades, new security mechanisms were invented to mitigate the vulnerability of these vital systems. While these techniques were initially developed as part of Cold War preparedness for nuclear war, they eventually migrated to domains beyond national security to address a range of anticipated emergencies, such as large-scale natural disasters, pandemic disease outbreaks, and disruptions of critical infrastructure. In these various contexts, vital systems security operates as a form of reflexive biopolitics, managing risks that have arisen as the result of modernization processes. This analysis sheds new light on current discussions of the government of emergency and ‘states of exception’. Vital systems security does not require recourse to extraordinary executive powers. Rather, as an anticipatory technology for mitigating vulnerabilities and closing gaps in preparedness, it provides a ready-to-hand toolkit for administering emergencies as a normal part of constitutional government.
Biologies of betrayal: Judas goats and sacrificial mice on the margins of Mexico (open access)
Emily Mannix Wanderer
Invasive species are the subject of much debate and attention. Social scientific analyses of alien species have focused on rhetoric about invaders, arguing that the discourse about invasive species reflects how people think about nature, culture and agency. In this article, I argue for a focus not only on discourse, but also on what happens in practice in the encounter between field scientists and invasive animals. Through ethnographic fieldwork on Guadalupe Island in Mexico, I analyze both the place of islands in the Mexican nation and invasive species eradication programs as examples of ‘care of the pest’, that is, projects in which scientists carefully tend to invasive organisms in order to produce knowledge about them. This knowledge is then used against the animals to exterminate them in a ‘biology of betrayal’, and occasionally, animals are enlisted into these projects to aid scientists in eradicating fellow members of their species. This article shows how changing perceptions of the value of island ecologies affected the use of the land and the fates of the animals on Guadalupe Island as the island was variously configured as laboratory, field site and slaughterhouse.
The lively ethics of global health GMOs: The case of the Oxitec mosquito (open access)
Alex M Nading
Social scientists have recently brought renewed attention to the relationship between epidemics and environmental change. Vector-borne and zoonotic diseases (for example, dengue, malaria, avian influenza) are exacerbated by disturbances to the environment, yet historically most solutions to these problems tend to involve further disturbances to environments, notably the mass destruction of non-human life (for example, pigs, sheep, cattle and insects). This article analyzes ethical debates that arose in 2010, when the British biotechnology firm Oxitec Ltd. announced a field test of a technology that would change this story: a genetically modified (GM) version of the Aedes aegypti mosquito that transmits dengue. Designed to control mosquito populations through interbreeding, Oxitec’s mosquitoes are an example of what I call ‘global health Genetically Modified Organisms (GMOs)’. As both environmental interventions, like GM crops, and biomedical technologies, like pharmaceuticals, such organisms challenge not only the moral position of social scientists vis–à–vis vector-borne or zoonotic disease but also the relationship of environmental ethics to bioethics. Addressing these challenges alongside the abiding question of for-profit biotechnology’s role in global health, I suggest that global health GMOs might be assessed through a ‘lively ethics’ that emerges not in discrete regulatory spaces (‘body’, ‘nation-state’, ‘global environment’) but in more fluid ‘moral spaces’.
Pharmacogenomics, human genetic diversity and the incorporation and rejection of color/race in Brazil (open access)
Ricardo Ventura Santos, Gláucia Oliveira da Silva and Sahra Gibbon
Public funding for research on the action of drugs in countries like the United States requires that racial classification of research subjects should be considered when defining the composition of the samples as well as in data analysis, sometimes resulting in interpretations that Whites and Blacks differ in their pharmacogenetic profiles. In Brazil, pharmacogenomic results have led to very different interpretations when compared with those obtained in the United States. This is explained as deriving from the genomic heterogeneity of the Brazilian population. This article argues that in the evolving field of pharmacogenomics research in Brazil there is simultaneously both an incorporation and rejection of the US informed race-genes paradigm. We suggest that this must be understood in relation to continuities with national and transnational history of genetic research in Brazil, a differently situated politics of Brazilian public health and the ongoing valorization of miscegenation or race mixture by Brazilian geneticists as a resource for transnational genetic research. Our data derive from anthropological investigation conducted in INCA (Brazilian National Cancer Institute), in Rio de Janeiro, with a focus on the drug warfarin. The criticism of Brazilian scientists regarding the uses of racial categorization includes a revision of mathematical algorithms for drug dosage widely used in clinical procedures around the world. Our analysis reveals how the incorporation of ideas of racial purity and admixture, as it relates to the efficacy of drugs, touches on issues related to the possibility of application of pharmaceutical technologies on a global scale.
Shaping the future and living in the present: Living a ‘good’ life with a familial heart disease (open access)
Els Geelen, Ine Van Hoyweghen and Klasien Horstman
In genetic counselling practices, individuals are explicitly encouraged to take an active stance towards their future. The premise is that, by considering their genetic risks and taking preventive measures, they have some control over their future life and health. However, it is unclear how families engaged in genetic testing actually deal with the promises of genetic test results, and how they perceive their future. This qualitative study aims to provide insight into the way in which families shape and live their lives with genetic risks. How do they navigate life with a familial heart disease? We followed six extended families involved in genetic testing for hypertrophic cardiomyopathy in the Netherlands for 4 years. The present analysis of four of these families reveals how they make sense of the future in various ways and perceive the opportunities for control. Whereas some families strongly believe the future can be shaped in some way, others are reluctant, do not believe in or even protest against the notion that genetic testing will help them to shape their future lives. We conclude that in the pursuit of Nussbaum’s notion of the ‘good’ life, ‘shaping the future’ and ‘living in the present’ are not opposing or mutually exclusive repertoires; instead, traces of both are apparent in all four case studies.
Educating ‘cerebral subjects’: The emergence of brain talk in the Argentinean society (open access)
María Jimena Mantilla
This article focuses on both the dissemination of neuroscientific knowledge and its social implications through the analysis of a television program entitled The Enigmas of the Brain hosted by an Argentinean neuroscientist. My main concern in this article is to analyze some of the discursive uses of brain talk, that is, the many ways in which brain terminology is engaged in accounts about what the brain does and how some terms are linked together in order to create a sense of brain causality in a number of heterogeneous processes. The research that led to this article follows a qualitative design. The content of the television show was transcribed and analyzed following a content analysis strategy. This data is part of a sociological research project about the cognitive neuroscience field in Argentina. I suggest that brain talk is more about creating new words to explain and make sense of life than about communicating scientific information to a lay audience. As it is explained in the program, the purpose is to educate the public, but I argue that not in the sense of giving new information, but in the sense of producing linguistic resources that encourage the emergence of new self-narratives.
Culture, Medicine, and Psychiatry
Clinician Reasoning in the Use of Cultural Formulation to Resolve Uncertainty in the Diagnosis of Psychosis
Ademola B. Adeponle, Danielle Groleau, Laurence J. Kirmayer
We examined how the process of cultural formulation contributes to diagnostic assessment of patients with psychotic disorders at a specialized Cultural Consultation Service (CCS). Specifically, we investigated the reasoning process used to resolve uncertainty of psychotic disorder diagnosis in African immigrant patients referred to the CCS for assessment of possible psychotic disorder. Qualitative thematic analysis of 23 clinical case conference transcripts was used to identify clinicians’ reasoning styles. Use of the CF appears to facilitate the emergence of a rule-governed reasoning process that involved three steps: (i) problematize the diagnosis of the intake ‘psychosis’ symptoms or behavior; (ii) elaborate explanations as to why the symptoms or behavior may or may not be psychosis; and (iii) confirm the diagnosis of psychosis or re-interpret as non-psychosis. Prototypes and exemplars drawn from previous experience in intercultural work featured prominently in clinicians’ reasoning. Prototypes were crucial in diagnostic decision-making and appear to be important sources of both clinician expertise and bias, and may need to be targeted specifically in cultural competence training.
Blood Libel Rebooted: Traditional Scapegoats, Online Media, and the H1N1 Epidemic
L. Atlani-Duault, A. Mercier, C. Rousseau, P. Guyot, J. P. Moatti
This study of comments posted on major French print and TV media websites during the H1N1 epidemic illustrates the relationship between the traditional media and social media in responding to an emerging disease. A disturbing “geography of blame” was observed suggesting the metamorphosis of the folk-devil phenomenon to the Internet. We discovered a subterranean discourse about the putative origins and “objectives” of the H1N1 virus, which was absent from the discussions in mainstream television channels and large-circulation print media. These online rumours attributed hidden motives to governments, pharmaceutical companies, and figures of Otherness that were scapegoated in the social history of previous European epidemics, notably Freemasons and Jews.
“Maybe at Birth There was an Injury”: Drivers and Implications of Caretaker Explanatory Models of Autistic Characteristics in Kerala, India
Jennifer C. Sarrett
Explanatory models (EMs) are the way people explain the presence and meaning of an illness or disability and are reliant on and reflective of culturally specific values of normalcy, disability, health, and illness. EMs about autism spectrum disorder (ASD) are particularly revealing because there is no known cause, and so people can explain this disability in ways more appropriate for and useful to them. This article presents caretaker EMs about children with autistic characteristics in Kerala, India. I argue that the reliance on biological, but not genetic, causal models is reflective of the state’s high access to biomedical heath care. These EMs are used to deflect the stigma of ‘bad blood’ and reflect a nuanced relationship between stigma and biological EMs. Understanding how caretakers talk about ASD and related conditions is critical for anyone interested in engaging in crosscultural or international autism-related work.
Heroin: From Drug to Ambivalent Medicine
Birgitte Schepelern Johansen and Katrine Schepelern Johansen
This article provides an anthropological analysis of the introduction of medically prescribed heroin as part of official substance abuse treatment. While anthropological inquiries of substance abuse treatment have mainly focused on providing the users perspectives on the (ab)use or unraveling the conflicts and negotiations between users and staff, the present article argues for the merits of paying attention to the spatial dimensions of substance abuse treatment. Focusing on the spatial and material ramification of the treatment can shed a nuanced light on the still vulnerable process of altering the heroin from drug to medicine, and thereby on the attempts to settle heroin in a new practical and semantic landscape. The heroin is anchored in some powerful discourses of crime, death, and pleasure, and the analysis shows how these discourses (re-)appear in the spatial textures of the clinic, contesting the attempts to medicalize the heroin. Further, the article argues that even though the treatment aims at a marginalization of the heroin in the life of the clients, the spatial arrangements and the practices within them simultaneously enforces a centralization of the heroin, making the space for treatment highly ambivalent.
A Model for Translating Ethnography and Theory into Culturally Constructed Clinical Practices
Bonnie Kaul Nastasi, Jean J. Schensul, Stephen L. Schensul, Abelwahed Mekki-Berrada, Pertti J. Pelto, Shubhada Maitra, Ravi Verma, Niranjan Saggurti
This article describes the development of a dynamic culturally constructed clinical practice model for HIV/STI prevention, the Narrative Intervention Model (NIM), and illustrates its application in practice, within the context of a 6-year transdisciplinary research program in Mumbai, India. Theory and research from anthropology, psychology, and public health, and mixed-method ethnographic research with practitioners, patients, and community members, contributed to the articulation of the NIM for HIV/STI risk reduction and prevention among married men living in low-income communities. The NIM involves a process of negotiation of patient narratives regarding their sexual health problems and related risk factors to facilitate risk reduction. The goal of the NIM is to facilitate cognitive-behavioral change through a three-stage process of co-construction (eliciting patient narrative), deconstruction (articulating discrepancies between current and desired narrative), and reconstruction (proposing alternative narratives that facilitate risk reduction). The NIM process extends the traditional clinical approach through the integration of biological, psychological, interpersonal, and cultural factors as depicted in the patient narrative. Our work demonstrates the use of a recursive integration of research and practice to address limitations of current evidence-based intervention approaches that fail to address the diversity of cultural constructions across populations and contexts.
Coming Back to Oneself: A Case of Anoxic Brain Damage from a Phenomenological Perspective
Elisabeth L’orange Fürst
Struck by a cardiac arrest that lasted 3/4 of an hour, a 53-year-old man suddenly collapsed one day at work. The result was a serious anoxic brain damage that developed into dementia. This essay presents the process of ‘coming back to himself’ while it questions what this concept might imply. The descriptions and analyses rest upon an ethnographic study of his life, at hospitals and then at home, assisted by his wife, who is also the author of this article. Theoretically, the analysis depends on Merleau-Ponty’s phenomenology of perception and is also based on the therapeutic use of music in treating people with dementia championed by Oliver Sachs. It is argued that the field of medicine has much to learn from the anthropological method of long-term observation, as well as theories of embodiment that see the body as simultaneously being an object and a subject.
East Asian Science, Technology, & Society
Sipping Science: The Interpretative Flexibility of Science Cafés in Denmark and Japan
Kristian H. Nielsen, Gert Balling, Tom Hope and Masaki Nakamura
Science cafés were originally conceived as an informal, dialogue-based venue for public participation in science. The first science cafés took place in the United Kingdom and France in 1997–98. Two formats—one featuring a single speaker (United Kingdom) and one with a panel of speakers and a moderator (France)—resulted from these first initiatives. Since then, science cafés have been adapted to other sociocultural contexts, and today, science cafés are being conducted in many different countries and for many different purposes. We examine the emergence and development of science cafés in Denmark and Japan with particular focus on the role of science and technology studies (STS), national contexts of science communication policy, and cultures of public participation. We find that in both countries, despite different expectations of public deliberation about science and technology, science cafés have been easily embedded in the “new” scientific governance programs (Irwin 2006). This is mainly due to institutional support in the national research systems and the involvement of STS scholars who, in their support of public participation in science and dialogue-based science communication, have advocated science cafés as a meaningful way to intervene in science-society relationships. “Sipping science” in a science café, enabling public participation in science deliberations, has interpretative flexibility, appealing to a wide variety of people and stakeholders engaged in public communication of science and technology.
IVF the Chinese Way: Zhang Lizhu and Post-Mao Human In Vitro Fertilization Research
Lijing Jiang
In 1988, the first human baby conceived through in vitro fertilization (IVF) technology in mainland China was born at the Peking Medical College Third Hospital in Beijing. The Chinese media soon celebrated the IVF achievement for its scientific modernity, as well as for its indigenous design, which was deemed suitable for Chinese infertile women. By tracing the project director Zhang Lizhu’s professional, social, and technological experiences as the IVF project proceeded at the Third Hospital, I examine the sociopolitical justifications of the project and the technological strategies of the final IVF design. Sociopolitically, state funding for IVF in the mid-1980s, a time of governmental promulgation of the one-child policy, was predicated upon melding eugenic motives into the IVF program as a rationalization for fertility treatment. Technologically, what was claimed to be “indigenous” IVF design was actually a technical shortcut to quick success contrived to bypass challenging protocols established in developed countries. The case reveals that the IVF project and its representations in the reform era, though predominantly characterized by a sociotechnical pragmatism, still carried a hint of Maoist romanticism that celebrated worker innovation and indigenous self-reliance. Zhang’s IVF program thus offered a pivotal transitional process through which the sociotechnical imaginaries of biomedical reproductive modernity began to form in 1980s China.
Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine
Metrics of hope: Disciplining affect in oncology
Nik Brown
This article explores the emergence of a ‘regime of hope’ in the context of oncology care, practice and research. More specifically, my focus is the emergence, since the 1970s or so, of hope scales and indexes used to metricise the emotional states of cancer patients. These usually take the form of psychometric tests designed and deployed in order to subject affective life to calculative and rational scrutiny. This article locates this within the tensions of a ‘turn’ towards the emotions in critical social science literature. Scholarship has, for instance, been anxious not to deny the embodied reality of affectivity and the emotions. But it has been equally important to recognise the extent to which emotions are discursively ordered and structured as objects and effects of power. This article charts the emergence of hope scales historically alongside wider historical forces in the metrification of life and health and more specifically the emotions. It locates hope scales in a post-war climate of individual resilience and perseverant enterprise and the significance of hope as a naturalised vitalistic attribute of biopolitical life.
Ambivalent journeys of hope: Embryonic stem cell therapy in a clinic in India
Amit Prasad
Stem cell therapy in non-Western countries such as India has received a lot of attention. Apart from media reports, there are a number of social science analyses of stem cell policy, therapy, and research, their ethical implications, and impact of advertising on patients. Nevertheless, in the media reports as well as in academic studies, experiences of patients, who undertake overseas journeys for stem cell therapy, have largely been either ignored or presented reductively, often as a “false hope.” In this article, I analyze the experiences of patients and their “journeys of hope” to NuTech Mediworld, an embryonic stem cell therapy clinic in New Delhi, India. My analysis, which draws on my observations in the clinic and patients’ experiences, instead of seeking to adjudicate whether embryonic stem cell therapy in clinics such as NuTech is right or wrong, true or false, focuses on how patients navigate and contest these concerns. I utilize Gilles Deleuze and Felix Guattari’s “concepts,” lines of flight and deterritorialization, to highlight how embryonic stem cell therapy’s “political economy of hope” embodies deterritorialization of several “regimes of truth” and how these deterritorializations impact patients’ experiences.
Between hope and evidence: How community advisors demarcate the boundary between legitimate and illegitimate stem cell treatments
Alan Petersen, Claire Tanner, and Megan Munsie
Stem cell science provides an exemplary study of the ‘management of hope’. On the one hand, raising ‘hopes’ and expectations is a seen as a necessary aspect of securing investment in promising innovative research. On the other, such hyperbole risks raising hopes to a level that may lead people to undertake undue risks, which may ultimately undermine confidence in medical research. In this context, the ‘management of hope’ thus involves the negotiation of competing claims of truth about the value and safety of particular treatments and about the trustworthiness of providers. Using Gieryn’s concept of boundary-work, this article examines the means by which this work of ‘managing hope’ is undertaken. Drawing on data collected as part of our study that investigated the perspectives of those who are consulted by patients and their carers about stem cell treatments, we explore how these community advisors – both scientists and clinicians with a stake in stem cell research and representatives from patient advocacy groups – demarcate the boundary between legitimate and illegitimate treatments. In particular, we examine how these actors rhetorically use ‘evidence’ to achieve this demarcation. We argue that analysing accounts of how advisors respond to patient enquiries about stem cell treatments offers a window for examining the workings of the politics of hope within contemporary bioscience and biomedicine. In conclusion, we emphasize the need to re-conceptualize the boundary between science and non-science so as to allow a better appreciation of the realities of health care in the age of medical travel.