[Chagas disease in Argentina. Scientific research, social problems and health policies]
Universidad Nacional de Quilmes, Argentina. 2010. 360 pages.
“Mal de Chagas” is a disease that affects 2.5 million people in Argentina and 8 million in Latin America. Caused by the parasite Trypanosoma cruzi, it generates heart, digestive and/or nervous system problems that may lead to death. The main vector of contagion is an insect (in Argentina, called “vinchuca”, in Brazil, “barbeiro”), which nests in the walls and roofs of dilapidated huts. Chagas disease is effectively a disease of poverty, as its transmission is associated with deficient housing, insufficient material conditions and sanitation facilities, malnutrition, and lack of access to sanitary information.
Chagas is considered a “neglected disease”. This is due to: the lack of overt symptoms; the lack of information about the disease; the resignation concerning its existence and effects among populations where the disease is endemic; the tendency of infected people to hide their diseased status to avoid job discrimination; and lack of interest of private laboratories to develop new treatments due to the low purchasing power of the sick. Despite this relative neglect, research on Chagas in Argentina goes back to the early twentieth century and in the last thirty years the disease has received increasing attention from researchers in biomedical circles. These researchers have increased awareness of the disease in prestigious Argentinian academic circles. This has led to new research opportunities facilitated by the academic researchers’ working conditions, funding, research expertise, and international connections. Simultaneously, research agendas on Chagas have been displaced, from drug and vaccines development to basic research, with the discursive use of the first to assert the legitimacy of Chagas as an object of scientific research within the latter.
At a conceptual level we might ask: how was a set of scattered phenomena transformed into a scientific object – an ontological, observable and manipulable entity? At a socio-political level we might ask: how does the disease become ‘real’ as a social problem? What place does it take in the country’s political agenda and in the science and technology (S&T) policy agenda?
In his book, Juan Pablo Zabala studies the dynamics of inextricably intertwined social and conceptual worlds, examining how they define and redefine the landscape in which heterogeneous elements interact: research, physicians, scientists, research centers, state agencies, international networks, and policy makers. He shows how the trajectory of attention to Chagas disease was strongly shaped by factors including: the political and institutional agendas of the actors who promoted its construction as an “issue”; the scientific disciplines considered the main knowledge producers at different points in time (and intervention strategies with which they were associated); the broader political circumstances at the level of the state (government changes, coups d’états and political persecution); and international networks and research funding.
Chagas disease in Argentina provides a historical and sociological account in which three main levels of analysis are interwoven. These include analyses of:
(a) The formation of an epistemic object and the production of scientific knowledge: How were the object and research problems constructed?;
(b) The relationship between scientific knowledge and the development of public health interventions: How – and by whom – were the social and health problems constructed? What solutions were developed in response to the different understandings of the problems? How did the results of scientific research shape the intervention strategies on society?;
(c) How interactions between actors, groups and institutions led to the acceptance and stabilization of certain representations over others as well as the allocation of resources to certain forms of intervention rather than others.
Through his focus on this particular case and the interweaving of these three levels of analysis – with attention to historical particularities – Zabala calls for reflection on the social utility of science and the orientation of S&T policies in developing countries.
The book is structured chronologically. Within the socio-conceptual trajectory, we first encounter a period of the construction and definition of the disease in which the main actors were a small group of scientists, with training in protozoology and tropical medicine, interested in identifying the links between the pathogenic agent and a set of clinical symptoms. In a second phase, during the 1920s and under the microbiology paradigm, the characterization of the disease became stabilized by the representation of its acute stage. The eye inflammation associated with this acute stage of infection, a clinical sign that could be identified by non-specialists as easily as by specialists, allowed for a widespread redefinition of the disease and facilitated its recognition by the country’s medical community and secured its place in the public health agenda.
Between 1940 and 1960 Chagas became recognized as an important sanitary and social problem. This reconceptualization involved a new set of actors, sanitary physicians and policy makers, leading to another new conception of the disease, specifically as the cause of a chronic heart condition of great epidemic proportions – rural at first and urban thereafter, due to internal migrations. New public health interventions and practices were introduced, focusing on epidemiological diagnosis, measurement, and prophylaxis.
Finally, beginning in the 1970s, in a fourth stage, intervention policies were stabilized and the disease was taken up by new actors: biomedical researchers from the fields of biochemistry, immunology and molecular biology. At first, research was oriented toward the development of therapeutics and vaccines. However, with increasing academic interest in and incentives for basic research on molecular explanations of the disease (namely, funding availability, insertion within international research networks, possibilities for academic career promotion), the objective of developing therapeutics and vaccines was displaced. Concurrently, in the late 1970s, the importance of the disease within national health policies declined and state agencies that were devoted to their implementation entered into a process of institutional weakening.
As Shapin and Schaffer (1985) argue, “solutions to the problem of knowledge are embedded within practical solutions to the problem of social order, and that different practical solutions to the problem of social order encapsulate contrasting practical solutions to the problem of knowledge”. On this level of analysis, Zabala traces the process of co-construction of knowledge about social and health problems (i.e. different ways of constructing the problem and object of research) and solutions for these problems (i.e. diverse intervention practices). In this sense, while different ways of framing knowledge prefigured diverse solutions in the form of health policy measures, the political stances that prevailed at each historical period tended, in turn, to promote certain knowledge production practices that fostered those measures. The measures, at the same time, stabilized the political positions of the different stances over time, both at the level of national politics and within expert communities.
The author frames his research within a tradition of sociology and history of science and technology, returning in his analysis to heuristic tools from both the constructivist and the neo-institutional approaches to the sociology of science. From a constructivist perspective, Zabala delineates a journey through the meanings that different social groups attributed to Chagas disease as a conceptual and social problem and the interventions that were accordingly carried out. The analysis recounts the negotiation of meanings between actors in the construction of Chagas as a morbid entity, as an object for public health and a research object, and the respective ways of representing the disease: its symptoms, diagnosis, the actors that were involved, privileged spaces for knowledge production and ways of considering and intervening on the infected population.
Using a neo-institutional matrix, the book examines how disciplinary frameworks shaped knowledge production (enabling some research paths while constraining others) and the different “scientific subcultures” that predominated across the different historical periods: parasitology, microbiology, entomology, immunology, biochemistry, molecular biology. Analyzing disciplinary framings of the disease along with the institutional conditions under which scientific activities took place (i.e. research practices, ways of posing questions, institutional constraints and incentives, international networks involved, possibilities for participating in policy decision making), permits Zabala to identify how the relations between knowledge production and social-sanitary interventions were shaped.
From the resulting conceptual framework, Zabala – through a thorough historical account – captures the complexity of Chagas disease’s “biography” as an “epistemic thing” (Rheinberger, 1997), as a social problem and as an object of intervention.
But what lessons can be learned from the case of Chagas? From a policy perspective, who is included and who is excluded via diagnostic practices, agenda setting, policy design and implementation? Whose views are taken into account? How are S&T and health policy agendas interwoven? And how does this research encourage us to reflect on national scientific and technological policies in Latin American countries? Along the journey delineated by Zabala, three elements remain stable: the consideration of the disease as a “social problem” at the policy level, the participation of scientists in the definition of these processes, and endemic poverty of people infected by the parasite. Regarding this last point, while a multitude of heterogeneous actors have been involved in ascribing meaning to the disease and shaping its representations, one group has been conspicuously absent: the sick.
Strikingly, the population affected by Chagas disease has not been engaged directly in the struggle against the disease; their needs have always been represented by other, more powerful, actors (Kreimer and Zabala, 2006). This leads us to pose the challenging question: how can Chagasic patients become activists for promoting R&D and policy interventions? While there are many diseases for which patient activism and expertise has played a significant role (AIDS is a prime example, Epstein, 1995), in the case of Chagas disease, conditions of structural poverty, lack of access to information, and general neglect has prevented “chagasics” from becoming acknowledged actors within discourses about the disease. Their empowerment as a group, and the possibility of their inclusion into the Chagas debate, is thus a structural challenge: it needs to go far beyond aiming at a specific solution to a specific problem, but instead to seek a systemic socially inclusive process.
Chagas disease in Argentina also allows us to critically analyze the reasons why finding solutions for neglected diseases – Chagas is a paradigmatic case – have not yet become scientific and technological priorities even within countries where these diseases are prevalent and where there are sufficient R&D capacities to take up the challenge. In addition, the book raises questions about the kind of R&D solutions that are sought (and funded): do national and international funding agencies promote and pursue basic or applied research? In case of the latter, do they look for new high-tech diagnostic kits (for a disease that already has a diagnostic gold standard) or do they fund R&D for prevention and treatment? Are the R&D solutions that are sought articulated with the actual needs of the health system?
Lastly, the book identifies a dilemma that is integral to research strategies and norms of academic evaluation: if career promotion and funding assignment is related to publishing in international high impact journals (most of which focus on basic science), what are the possibilities for developing R&D institutional agendas oriented towards solving local social problems? And what are the possibilities for engaging in research that may be less fruitful in terms of publication but may result in interesting technological developments for addressing social needs?
Zabala’s Chagas disease in Argentina presents an interesting study of a disease that is emblematic to Latin America and a fruitful analysis of the socio-conceptual trajectory of a research object which is perpetual being reconstructed. The analysis presented in the book is not only relevant to rethinking other neglected diseases prevalent in the region (tuberculosis, dengue, leishmaniasis), but also, and in a broader sense, to promoting wider research-based discussion – and stakeholder engagement – on how S&T policies are oriented (or not) towards addressing local problems and needs.
Gabriela Bortz is a Researcher at the Institute for Science and Technology Studies, Universidad Nacional de Quilmes and a PhD Fellow at the National Science and Technology Research Council (CONICET). Her research focuses on the analysis of public policies, knowledge production and innovation in biotechnology and how they are enrolled to solve social and environmental problems in Argentina, as part of the research program “Technology for Social Inclusion – Public Policies in Science, Technology and Inclusive Development”. Gabriela is also founder and editor of Eä Journal, open access peer reviewed journal in social and humanistic studies of Health, Science & Technology. Contact: firstname.lastname@example.org, email@example.com
The “Foreign Correspondents” series features reviews of books published in languages other than English. It is edited by Stephanie Lloyd (Laval University). If you would like to suggest a non-English language book for review or if you are interested in reviewing for “Foreign Correspondents,” please contact Stephanie directly at firstname.lastname@example.org.
Epstein, S. (1995) The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials. Science, Technology, & Human Values, Vol. 20 (4), Special Issue: Constructivist Perspectives on Medical Work: Medical Practices and Science and Technology Studies, 408-437.
Kreimer, P. and Zabala, J. P. (2006). ¿Qué conocimiento y para quién? Problemas sociales, producción y uso social de conocimientos científicos sobre la enfermedad de Chagas en Argentina, Revista Redes, 23, 49-77.
Rheinberger, H-J. (1997). Toward a History of Epistemic Things: Synthesizing Proteins in a Test Tube. Stanford, California: Stanford University Press.
Shapin, S. and Schaffer. S. (1985). Leviathan and the Air-Pump: Hobbes, Boyle, and the Experimental Life. Princeton: Princeton University Press.
Zabala, J. P. (2010). La enfermedad de Chagas en Argentina. Investigación científica, problemas sociales y políticas sanitarias, Bernal, Universidad Nacional de Quilmes.
“Globalizing schizophrenia and other severe mental disorders” – a 3-yr doctoral fellowship at CERMES3/EHESS (Paris) by Anne Lovell
CERMES3 announces a three-year doctoral fellowship (2014-2017) on “Globalizing schizophrenia and other severe mental disorders” financed through the European Research Council project GLOBHEALTH, “From international to global: Knowledge and diseases and the post-war government of health”. The PhD will be defended at the EHESS – Paris.
This doctoral research should centre on a critical history of the development of international research on schizophrenia and other severe mental disorders and the central role of WHO, including but not limited to the 25-year WHO international research programme on schizophrenia. It may address the scientific findings and controversies; the relationship of this research to international public health, epidemiology, psychiatry and oth- er branches of medicine; the changing nature of expertise. The project may also focus on more recent history of the incorporation of schizophrenia into global health through new alliances (e.g. NGOs, universities, phar- maceutical markets), metrics (e.g. Global Burden of Disease), and movements for health and human rights. The nature of the project may be historical, anthropological or sociological. However, it should focus on local- global exchanges, particularly in outside Europe and North America. The doctoral project falls into the do- main, “Placing mental health on the world health agenda: the globalization of a refractory problem”, one of four to be examined by the ERC programme GLOBHEALTH.
The PhD project will be located at CERMES3, Villejuif/Paris, but will involve on-site research in Geneva (WHO) and possibly sites in Africa or Asia. Supervision will be offered by Jean-Paul Gaudillière (historian) and Anne M. Lovell (medical anthropologist).
Applicants should hold a Masters’ Degree in anthropology or history, but other disciplines will be considered. Some background or interest in mental health, psychiatry, pharmaceuticals or public health is an asset. Good oral, reading and writing skills in English are required; some knowledge of French is preferable.
Applicants should include the following in their application:
- contact details, including phone number
- CV (degrees, educational/training experiences, work history, skills, honours/awards, publications)
- transcripts from university diplomas
- letter of motivation
- draft project of 5 to 10 pages. Include: subject, materials, methods, field-site, intended outcomes, dissemination and a 3-year timeline for the project.
- Sample of writing that applicant deems relevant to the project.
- Names and contact details of two references
Information on CERMES3 is available through http://www.cermes3.fr.
Description of the ERC Project is accessible through http://globhealth.vjf.cnrs.fr
The complete applications to be sent to email@example.com and firstname.lastname@example.org
Please indicate “Globalizing Schizophrenia – GLOBHEALTH” in the subject line.
The NEW deadline for applications is September 15, 2014.
The selection will completed at the end September 2014 and the successful candidate is expected to start employment by the end of October 2014.
Call for papers – Psychopathological fringes: Historical and social science perspectives on category work in psychiatry by Nicolas Henckes
Venue: Berlin, Institute for the History of Medicine, Dahlem
Organization: Nicolas Henckes, Volker Hess, Emmanuel Delille, Marie Reinholdt, Stefan Reinsch, Lara Rzesnitzek,
Over the last few years, the revision process of both the DSM and the Chapter V on mental disorders of the ICD has stimulated within psychiatry a series of attempts at challenging established diagnostic categories. These challenges reflect both dissatisfaction with categories as they are defined in existing diagnostic classifications, and a will to adjust them to the demands of clinical and research activities. They are expressed in ways that sometimes strongly resembles the discourse of critical social science. For instance, the conveners of the conference “Deconstructing psychosis” – organized by the American Psychiatric Association along with the WHO and the US National Institutes of Health in 2005 – developed a stringent critique of the proliferation of diagnostic categories in the field of psychosis: “Although these categories are meant to refer to broadly defined psychopathological syndromes rather than biologically defined diseases that exist in nature, inevitably they undergo a process of reification and come to be perceived by many as natural disease entities, the diagnosis of which has absolute meaning in terms of causes, treatment, and outcome as well as required sampling frame for scientific research.”
Controversies over diagnostic categorization in fact have a long history in psychiatry. Rejection of diagnosis has long been prominent among certain segments of psychiatry, from Adolf Meyer’s synthesis in interwar US psychiatry through parts of phenomenological psychiatry in Germany to antipsychiatry and Lacanian psychoanalysis in 1970s France. However, the deconstruction of diagnosis has also been a core feature of what might be termed category work in psychiatry, at least since the fall of the unitary psychosis concept in the last quarter of the 19th century. By the notion of category work we understand the multifaceted practices developed by clinicians, epidemiologists, biologists, administrators and patients to negotiate and objectify the boundaries of diagnostic categories. While such practices have mostly been devoted to securing the internal coherence of major categories, the requirements of both research and clinical work have prompted the development of liminal categories meant to target conditions situated between illness and health, or between broader established diagnostic classes. Examples of such categories include prodromal schizophrenia, latent depression as well as “borderline” disorder and a range of personality disorders. Closely related to these constructs are notions of comorbidity and dimensional concepts of diagnostic spectra or continua. In many of these cases, the challenge for psychiatrists has been to devise entities that include in their very definition the possibility of their transitory status. These diagnostic constructs thus convey a paradox: while they question categorical thinking, they are usually framed within the language of categories.
The aim of this workshop is to offer a historical and social science perspective on the history and current status of category work at the fringes of psychopathology. Unlike constructionist perspectives on psychiatric diagnosis that have aimed to demonstrate the less than solid nature of core categories such as depression, schizophrenia and neurosis, we are interested in the already internally contested and marginal categories devised to target conditions situated at the borders of psychopathology. Thus, rather than elaborating on the longstanding debates between “lumpers” and “splitters”, we would like to examine the ways in which psychiatry has developed knowledge and practices to target these conditions.
This workshop has its origins in the German-French research program “Psychiatric Fringes. A historical and sociological investigation of early psychosis in post-war French and German societies” funded by the ANR and the DFG for the period 2012-2014, and it will be an opportunity to discuss results from this research project. We welcome papers on other aspects of the history, the sociology and the anthropology of psychiatry at the fringes of psychopathology that complement our research and might lead to a wider understanding of this work. Papers may explore for instance one or more of the following issues:
- The construction of knowledge at the fringes of psychopathology. What knowledge practices have been involved in the creation of categories targeting liminal conditions? What have been the respective roles of epidemiology, biological science, brain imaging, biometrics, and the clinic in the development and objectification of these categories? What have been the practical and ethical implications of such work?
- Diagnostic practices. Liminal categories have been developed to address specific clinical uncertainties, but they also have raised new ones. What are these, and how are they practically managed by clinicians and patients? What are the specific diagnostic instruments developed by clinicians, and how are these used? What has been the role of psychopathological scales, psychological tests or biological treatments in diagnostic processes?
- The specific role of patients´ experience in category work. To what extent have patients, as individuals or as organized groups, contributed to shaping categories at the borders of psychopathology?
- The trajectories of categories. Like the psychiatrists quoted above, we might be tempted to think that categories always end up in some ways reified. Is this always the case? What has been the use of liminal categories in different historical and social contexts? What has been the influence of these contexts on the very definition of such categories?
Interested prospective participants should send a title and a 350-word paper description to Ms. Stefanie Voth: email@example.com by September 15th. Travel expenses and accommodation in Berlin will be covered by the conference organizers.
 van Os, J. and C. Tamminga (2007). “Deconstructing psychosis.” Schizophrenia Bulletin 33(4) p. 861
University of Chicago Press, 2013, 344 pages
by Stefan Sperling
Sperling’s Reasons of Conscience is an ethnographic study of two German Bioethics commissions – the Enquete Kommission and the Nationaler Ethikrat. His particular focus is on the way that the national, political and cultural context influences the democratic and bureaucratic processes involved in the production of bioethical regulations. These influences can be summarized in terms of the Kantian moral character of German culture, the structural and procedural transparency of German politics, and the enduring legacy of the Holocaust in the ethico-political imaginary of the German nation-state. This latter influence can be contrasted with the distinct absence of influence that, Sperling suggests, can be accorded to the former GDR (East German) in the political life of a post-reunification Germany. Whilst this absence of influence is interesting, the very fact it is an absence makes this section of the book its least relevant part. Consequentially my review focuses on the importance Sperling accords to transparency, Kant, and the Holocaust in the bioethical discourses of the German nation-state.
In his pretext Sperling discusses various aspects of German cultural life that can be read as supporting his main thesis: that the principle of transparency that informs German political life produces a concomitant responsibility on the part of citizens–they must be politically literate. This means that, in the context of specific debates or policy-making processes, citizens must be given the opportunity to acquire the relevant literacies. As with the 19 Articles of Basic Law, etched into glass plates and on public display near the Reichstag in Berlin, transparency is not aperspectival. Political transparency does not result in the practices of government being comprehensible from anywhere and everywhere, it does not result from the simple removal of opacity or obstacles to our vision, rather it requires the observer to look from a particular vantage point and to engage actively in the task of perception. Thus, Sperling argues that public meetings – or ‘citizen conferences’ – are not simply occasions at which the ethics commissions could present their work nor are they fora for collecting the views of ‘the public.’ Rather they are occasions for the performance of democracy and the creation of citizens. In order that the public might fully appreciate and understand the issues at hand they needed to be educated, something that is achieved by exposure to experts in a democratic context, at least in part.
In this way the issues addressed, and the development of the commissions’ views, are rendered transparent through their engagement with a process of public reasoning. The idea and ideal of ‘public reason’ is a vital, and Kantian, part of German culture and politics. However, it is important to note what is meant by its counterpart: ‘private reason.’ This is not to be understood as the reason one uses in one’s private or ‘non-public’ life, but is the reasoning one uses when ‘under orders’ or when one is in some way carrying out a mandated action or activity (p.157). Private reason is what is used when one acts or is commissioned to act on behalf of a collective, particularly the state but also other organizations whose perspective, framework or world-view is accepted and adopted by its delegates, those who join and work for such organizations. The primary example of this are the Beamte, German civil servants who, on condition of giving up some of their liberties and constitutional rights, including the right to engage actively in political organizations (p.162), collectively embody the state and its infrastructure. In aligning themselves with the private reason of the state there is a sense in which the Beamte are required to set their own moral conscience to one side in favor of acting in accordance with the bureaucratic and procedural dictates of the collective hierarchy. This same requirement is placed on those who worked for the commissions. Their personal views were to be considered subordinate to the task delegated to them and the processes through which they were to carry it out. Thus Kantian ideals result in a compartmentalisation and division of labor where the private reasons of the state and its organs structure the way it makes use of public reason and, therefore, the kind of public reasoning it is capable of recognizing.
Depending on one’s perspective such arguments – that the politics of transparency engenders a particular co-constitution of citizen and democracy and the private reason of the state limits the recognition it can offer to the public reason of the polity – can lead one to despair or to rejoice. If one has faith in democratic proceduralism and the arrangements that have been made for it, then one will be confident in the ability of bioethics commissions to not only get to the heart of the matters they address but to resolve them in a laudable manner. If one is more sceptical about the Kantian moral project, and Habermas’ ethico-political reconstruction, then concerns will remain. Given that most do not hold one or the other of these positions but, instead, accord the state both confidence and concern, then we might take the Holocaust as representative of the ambivalence we, and not just Germany, have in regards the role of procedure in the political philosophy of modernity. On the one hand we are enjoined not to forget, to never again let such a thing happen and to see the products of procedure – such as the conclusions of the ethics commissions studied by Sperling and, one might add, the moral notion and legal actuality of universal human rights – as ensuring it never can. However, pace Bauman’s (1989) analysis, we cannot but acknowledge that it was this same proceduralism, and the associated division of labor embedded in the distinction between public/ private reason, that not only set the conditions for the Holocaust but, ultimately, facilitated its conduct. Thus when Sperling suggest that remembering the Holocaust, and a desire to ‘learn its lessons,’ plays a significant role in Germany’s bioethical debates, it cannot be because such a thing could never again happen. It must be because it very well could. Modernity does not merely have ends, it has an end. It is a project to be completed or perfected and, as such, it is imbued with an idea of finality. Just as in Kant we have the Kingdom of Ends so in Nazi Germany we had the Final Solution. And were the ends of The Enlightenment to be achieved we would find ourselves at the end of history. Whilst were are attracted to such utopias because we consider them morally superior to contemporary society it is not clear that there is a path we can take to reach such places, or that any such path could be ethically traversed. Thus we must remain ambivalent about what the politics of transparency has to offer. Sperling’s ethnographic experience and analysis leads him to conclude that:
“The State displays itself with the goal of making its transparent workings open to critique, but with the purpose that citizens understand, and adopt its governing logic. … The transparency of government acts to shut down alternative readings.” (p.280)
Whilst transparency is designed to make critique possible, the structural arrangements it requires means that perspectives that do not adopt the governing logic are delegitimized. An unavoidable consequence of bureaucracy, a form of government named for a piece of office furniture (Kafka 2012:77), is a dehumanising rationalisation of life and experience. The realities and practices of government are not neutral with respect to the governed, citizens are not born, but made, and Sperling’s analysis of bioethical regulation in the making offers a compelling illumination of the democratic process.
Nathan Emmerich is Visiting Research Fellow, School of Politics, International Studies and Philosophy, Queen’s University Belfast.
Bauman, Z. 1989. Modernity and the Holocaust. Cambridge, UK. Polity.
Kafka, B. 2012. The Demon of Writing: Powers and Failures of Papwerwork. Zone Books.
Questions of health, medicine and science have long animated sub-disciplinary attentions in the social sciences and humanities. Recently, however, research around these topics has taken a marked collaborative turn. If topics in the medical and health sciences were once straightforward objects of study for anthropological, sociological or philosophical analysis, increasingly, to work ‘on’ such topics often means also to work both ‘with’ and ‘through’ them. While this collaborative turn has been enacted in distinct ways, shaped by national and regional institutional structures and epistemic communities, for many in medical anthropology, the sociology of health and illness, the medical humanities, and science and technology studies, ‘science’ and ‘medicine’ are not simple disciplinary specialities. Instead, they are desired collaborators, allies, and co-producers, for an interdisciplinary research complex that is less invested in institutional or philosophical dividing-lines between the ‘biological,’ ‘social’ and ‘human,’ and much more committed to exploring the ways in which social life, conceptual labour, and biological existence run through one another.
This development has many antecedents. They include the emergence, in recent decades, of a bioscience-based research-complex (for example in epigenetics, in social and developmental neuroscience, in global health and infectious disease research) that has deepened our understanding of the co-constitution of the social and the biological in many areas of health and disease. Equally significant is the ongoing development of an international funding infrastructure that favours large-scale, interdisciplinary approaches to ‘big questions’, and research (from whatever discipline) that has a direct impact on health outcomes. Simultaneous with these developments, the epistemological politics around issues such as climate change, global health, and other pressing concerns, have shifted the stakes of critiquing certain forms of expert knowledge – a development that marks (but does not exhaust) a broader wearing-out, in social and cultural theory, of suspicions around the biology and materiality of the body, the relationship between inheritance and cultural and social life, the place of scientific expertise, and so on.
“The collaborative turn” – which will appear as a series of essays on Somatosphere – seeks to open up a critical dialogue on collaboration and interdisciplinarity across medical anthropology, medical sociology, and the medical humanities. It also addresses the emergence of similar issues in allied health sciences – not least in epidemiology, demography, and the other population sciences – where on-going re-alignments of ‘health’ and ‘the social’ also generate complex (and not always comfortable) spaces of collaboration and hybridity. Finally, we include recent efforts to engage patient and provider publics (and counter-publics), including ‘participatory’ interdisciplinary initiatives framed in terms of co-production, ‘involvement’ and/or ‘emancipation.’ If interdisciplinary collaboration around medical and scientific topics is often taken as a good in itself, questions remain about the bases on which, and purposes for which, collaborations are established. There is much to be optimistic about in collaborative endeavours. But the epistemological, ontological, and institutional complex that has come to organise and propel this future (or futures) has been the object of surprisingly little scholarly attention from medical anthropology and sociology, or from the medical humanities – even as it has come to reshape the fields in which those disciplines operate. Indeed, it is not always clear in whose name the promissory future of interdisciplinary collaboration is promoted (both inside and outside the academy), with what desired benefits, with what goals, and with what broader-scale effects. Nor is there always clarity about conditions under which the question of collaboration and interdisciplinarity emerge; especially across different national and disciplinary contexts, there is little attention to the terms under which different epistemological perspectives are drawn together. The series thus asks: what is fundamentally at stake in collaboration around topics in health, medicine and science? What does it mean for scholars in the social sciences in the humanities (and sometimes users and practitioners) to learn to live in such collaborative terrain? And how can such questions open up analysis of a broader collaborative turn, of the ways in which unruly questions in health, medicine and science are understood today, and of how the social sciences and humanities are coming to be entangled in this understanding?
We invite submissions for this series from scholars working in the social sciences and humanities of medicine, health and science as well as from researchers and practitioners in the biosciences and medicine. Please contact us with a short (250-500 word) proposal at firstname.lastname@example.org. There is no strict deadline and submissions will be considered as they are received, although we hope for posts in the series to begin appearing in the Fall of 2014.
“The collaborative turn” is collaboratively edited by Des Fitzgerald, Nev Jones, Suparna Choudhury, Michele Friedner, Nadine Levin, Stephanie Lloyd, Todd Meyers, Neely Myers, and Eugene Raikhel.
Paper Knowledge: Toward a Media History of Documents
Duke University Press, 2012, 224 pages
The Demon of Writing: Powers and Failures of Paperwork
Zone Books, 2012, 208 pages
by Ben Kafka
Ben Kafka and Lisa Gitelman, colleagues at New York University, have both written books about the intricate nature of paper as a medium. While Kafka delves into the nature of paper as enabling agent of bureaucracy – i.e. paperwork – Gitelman’s focus is on “documents” and how they were shaped by print and are now transformed by the digital.
Given the digitization of all things social and the recent debate about issues for democracy through digital surveillance (Wikileaks, Edward Snowden), books about specific media and their implications for governance such as Kafka’s and Gitelman’s are tapping into current issues.
The Demon of Writing
The Demon of Writing by Ben Kafka focuses on the meaning of a particular medium (here: paper) for governance – specifically: bureaucracy. His narrative revolves around “paperwork”, which he defines “to mean all those documents produced in response to a demand – real or imagined – by the state” (p. 10). In what is probably one of the most entertaining scholarly books ever written, Kafka uses the period of the French Revolution to detail the travails of individuals exposed to the madness of bureaucracy. The largest part of his treatise (three chapters) narrates the stories of people caught up in this treadmill of paperwork. The first chapter, for example, focuses on Edme-Etienne Morizot in (pre-)revolutionary France, whose fate offers obvious parallels to the great novel The Trial by Ben Kafka’s famous namesake, Franz Kafka. Fired from his job in the Ministry of Finance in 1788, Morizot has to endure similar struggles, being sent from one committee to the next in the hope of finding an open ear; that is, of receiving the pension that was promised him.
While taking the reader on a roller-coaster ride of individuals struggling with the system, Kafka cleverly interweaves these accounts with some more general remarks about the history and nature of bureaucracy. For example, he shows that it was the Constituent Assembly and not Napoleon that invented administrative organization (p. 103); and that “modern political thought was both founded and confounded by encounters with paperwork” (p. 10); Kafka also points out that paperwork was a precursor to, if not the first step of, industrialization (p. 12). Quills and ink were not very efficient; bureaucracy resulted from a need for a division of labor, as societies became larger and more complex (p. 35). In connection with cheaper means of producing paper and the notion (advanced by the French Revolution) that public servants had to be accountable (now that they properly represented the people; p. 43), bureaucracy began to enjoy an unbridled existence.
Kafka does not equate paperwork with bureaucracy per se. He points out, for instance, that the Roman Empire, while bureaucratic, used far less paperwork (p. 54). “Modern” bureaucracy is therefore a markedly different form of governance than feudal bureaucracy, characterized by the availability of paper and the “paperwork” that ensues.
One could argue that Kafka’s book is – in terms of topic and scholarly insight – not very different from the path-breaking work on bureaucracy by Max Weber (to whom Kafka refers briefly on three occasions). Indeed, much of the narrative echoes Weber’s points, albeit in a much richer and more entertaining style. Both the promises and perils of bureaucracy are clearly outlined by Weber. The hope for accountability of public servants and a hope for a “simple and coordinated state” (p. 34), as well as the danger of the same public servants becoming so entangled in paperwork that they cease to serve the public and become automatons following an administrative script were all dealt with by Weber, in what he famously termed the “iron cage of rationalization”. Given the nature of Kafka’s narrative about individuals harassed and restrained by modern administration, one would also expect a stronger reference to the work of Michel Foucault, for example, in the discussion of “dissemination of power by paperwork” (p. 82) (Jon Agar’s Government Machine, 2003, also comes to mind).
Rather, Kafka – unpersuaded by Bruno Latour’s media ethnography – wants to focus on “unconscious processes” (p. 14). His stated methodology of choice is psychoanalysis, in an attempt at “renewing and reinvigorating psychohistory” (p. 16). His use of psychoanalysis aims to stress “paperwork’s symbolic function – its function of telling us about the world and what to do or what not to do to it” (p. 108). Psychohistory is a rather controversial concept among most historians and rarely seen these days. Oddly enough, this is also the case in Kafka’s book. Very rarely does the book make explicit use of psychohistory, an absence which adds to its high level of readability, one might add.
My main criticism of Kafka’s book is therefore not its shortcomings in terms of methodology, but his negligence of the digital. Given the prominence of e-governance and the “paperless office” in today’s political discourse, one wonders why Kafka doesn’t juxtapose the historic cases of bureaucracy running haywire with current debates. His conclusive chapter is indeed rather short (six pages), and he dismisses both e-governance and the paperless office as “wandering myths” (p. 149). While he makes a valid point about the versatility and durability of paper – a circumstance that will in fact guarantee its survival in administration for the time being – many of the issues he discusses demand attention to digital media. After all, Kafka delivers the perfect sound bites for a debate of recent events. His central argument – that without paper, there wouldn’t be any paperwork – is the perfect opener to a discussion about e-governance, that is, paperwork without paper. Even more so is his remark that the committee (in the case of Morizot in chapter one) is a new kind of villain which requires a new kind of hero to defy it (p. 70). While the revelations by Edward Snowden about the NSA spying on people had not yet been made when Kafka’s book was published (2012), the debate about Wikileaks was certainly ongoing. In the eyes of many, Julian Assange and Edward Snowden are exactly that kind of new hero defying the new villain: IT and the novel forms of surveillance and governance it enables.
In summary, Kafka’s book, while extremely well written and a delight to read, leaves one wanting more. His topic – paperwork and its perils – begs for a discussion of the nature and meaning of media and their implications for governance on a broader level.
Lisa Gitelman provides much needed attention to digital media in her book, Paper Knowledge. As a matter of fact, her main topic is the idea of the “document” and its transformation from print to digital. Gitelman follows this transformation from nineteenth century blank form printing, to the appearance of photocopiers in the 1960s, to the emergence, in the 1990s, of digital documents such as Adobe’s Portable Document Format (PDF).
In addition to “document,” the second pillar of Gitelman’s argument is the concept of “genre”, which she uses to uncouple the debate from the ambiguities of the term “media”. The concept of “medium”, widely discussed since Marshall McLuhan’s famous treatise Understanding Media (1964), remains fuzzy and hard to pinpoint. “Better, indeed”, as Gitelman points out, “to admit that no medium has a single, particular logic, while every genre does and is” (p. 9). “Genre”, in her words, thus “is a mode of recognition instantiated in discourse” (p. 2).
Gitelman’s argument circles around these two terms: “document” and “genre”. Documents, according to her definition, are not only imbued with “the social order that they inhabit” and “integral to the ways people think” (p. 5); documents are objects “framed as or entered into evidence” (p. 3). Documents are thus not simply meaningless objects, but are a “genre”, both a “pattern of expression” and “familiar material objects” (p. 3). This holds true for electronic publishing as well.
Like Kafka, Gitelman dismisses the paperless office as myth on several occasions, giving some very good examples to back up her claim. A good deal of her discussion of the photocopier revolves around the fact that people used them to copy computer manuals, such as the early UNIX manuals, leaving photocopies and digital documents deeply intertwined (pp. 98, 110). One wonders, however, whether this simply marks a transition period in which digital devices convenient enough to replace printed books had not yet entered the market. Especially in the field of computer manuals, many of them are happily used in digital formats nowadays.
Her own journey into C19 printing is a prime example of this intertwined space. Gitelman starts with the observation that “the term ‘print’ was always in flux, referring to changing technologies and practices” (p. 7). Where “printer” once referred to a trade, it now refers to a device sitting by the edge of your desk. The same is true for “computer”, obviously: once describing a person doing computations with pencil and paper (and maybe an abacus or mechanical calculator), for three generations or so now it is solely known as a digital, programmable machine. One wonders if the same fate is in store for the document as well; maybe one day “document” will be entirely associated with digital media, just as the word “file” already is largely a synonym for “digital file”. Gitelman makes that point early in her book when she outlines the immediacy of the concept of “document” and its instance as paper for the designers of digital media (p. 4). Gitelman delivers more examples of this by describing, among other things, the transformation of print in the nineteenth century. She does this by showing the role blank forms started to play in public administration; a form of governance only enabled by the ability to print forms in large quantities at a low price, made possible by big steps in printing technology in the 1800s. Blank forms became so ubiquitous – and here Gitelman’s book interfaces nicely with Kafka’s – that it pushed paperwork to new levels. (Indeed Gitleman refers to Kafka’s book on three occasions.) “Blank forms work on their face to rationalize work, but they are also one small part of the way that bureaucracy assumes an objective character” (p. 31). Referring to Max Weber’s point about the perfection of bureaucracy through dehumanization, Gitelman describes the ambition of bureaucracy to rid itself from all emotions and subjective judgements, an ambition epitomized by blank forms.
Again, one wonders why the seminal work of Foucault finds little to no mention in this discussion. Gitelman’s assertion that “the people who designed and deployed them [blank forms] were thinking ahead to their filling in” (p. 24) is exactly the kind of discursive framework that Foucault spoke of as advanced organizer.
Despite not drawing explicitly on Foucault or other philosophers, Gitelman provides further examples of the notion of how technology transformed our handling of resources. She eloquently outlines the challenges of photocopiers to copyright, for example. Copyright was contested in the nineteenth century already by cheap, pirated reprints of popular novels and cartoons. These, however, could be stamped out by the police relatively easy, given the size and cost of printing presses. Photocopiers, on the other hand, through their low price, speed and ubiquity would break down that barrier (p. 108). Here, too, we detect a parallel to current debates about copyright infringements and digital media. Not only has the industry tried to steer legislation to maintain its market share, but the advent of new media/technology has challenged and ultimately transformed our understanding of copyright, and thus its very nature.
Gitelman’s account of the rise of the UNIX operating systems, which was characterized by its nature of copying and annotation (p. 98—99) – both the code and manual – provides obvious similarities to today’s social media and Alvin Toffler’s term of “prosumer”, i.e. the blurring of distinctions between “producer” and “consumer” (p. 150). She gives several examples of this notion, including that of “amateurdom” as a means of overcoming monopolized cultural debates. Where previously discourse was controlled by magazine editors with the “Letters to the Editor” used as a fig-leaf (pp. 78,145), social media now allows everyone to utter their thoughts to the world, for better or worse. Filing – once the primary privilege of bureaucracies (p. 32) – was brought to individuals first by photocopiers and then by computers: “Filing, like reading, has become a means of self-possession” (p. 93).
Paper Knowledge is thus a well-rounded exploration of publishing technology and how it transforms every aspect of our lives, from the way we are governed to the way we read books and news.
Both books are relevant contributions to the debate about the transformation of governance through new media. Both show us the effect that the ubiquity of certain media – paper, print and digital publishing – has on administrative practices. Kafka and Gitelman’s books are thus important both for academic discourse in media studies, as well as for public debates about current challenges in governance. While Kafka’s focus is more on historic cases of bureaucracy gone wild, Gitelman’s approach is somewhat broader. Her favoring of categories like “genre” and “document” over the rather fuzzy “media” is a promising angle which hopefully will inspire future studies in this field.
While both books have their methodological weaknesses, they are also both eloquent, informative and great food for thought. This concerns Kafka’s book to a greater extent. While extremely well written, it leaves much to be desired methodologically. His negligence of e-governance is also a shortcoming, stoked by his tying of modern bureaucracy to the medium of paper.
Comparing the two books is therefore somewhat difficult. In a way, they complement, rather than contrast with, one another. Gitelman picks up the story where Kafka leaves off. Kafka deals with the age of the French Revolution, i.e. the late eighteenth century, while Gitelman starts her treatise in the nineteenth century. Kafka elaborates individual fates entrapped in bureaucracy – the micro level, while Gitelman looks at general issues – the macro level. Readers interested in either level of inquiry might therefore consider both books, or pick the one closest to their own scope of interest to begin.
Alexander von Lünen holds a degree in computer science and a PhD in history (of science and technology), both from the Technical University Darmstadt, Germany. For the last seven years he has been working in Digital Humanities. He is currently a Research Associate at the Centre for Information Management at Loughborough University, UK.
Image credit: “boat” (2012) by zhu jinshi, xuan paper, bamboo and cotton thread, 590 x 137 x 165 in. (1500 x 350 x 420 cm)
image courtesy of the rubell family collection, miami
Call for candidates: one-year fellowship at the Laboratoire d’anthropologie sociale of the Collège de France (Paris) by Frédéric Keck
The Laboratoire d’anthropologie sociale, based at the Collège de France in Paris, will hire a researcher for a one-year post-doctoral contract starting 1st January 2015 to study the perception of animal diseases in Australia.
This position takes part to the project « Social representations of pathogens at the frontiers between species », sponsored by the Axa Research Fund and led by Philippe Descola and Frédéric Keck. The goal of this three-year project is to compare the perception of animal diseases by breeders and health authorities in different parts of the Asia-Pacific area. In the course of this project, three positions will be available: Central Asia, South-East Asia and Australia.
- Applicants must have been awarded a PhD before the start of the contract.
- Language skills and expertise related to the area of concern
- Experience in ethnographic description and comparative theory
- Ability to engage in a collaborative research with publications and participation to scholarly activity
- Knowledge in human/animal relationships and/or medical anthropology would be appreciated
In the framework of this post-doctoral contract, the applicant will :
- Receive a 2100 euros net salary from 1st January 2015 to 31 December 2015
- Benefit from the environment of the Collège de France : high-quality libraries, research seminars and teaching at the centre of Paris.
- Have the financial means to do fieldwork in the area of concern under the tutorship of renowned experts of this field.
- Acquire knowledge on animal diseases and participate to the activities of the team « Relations hommes/animaux : questions contemporaines » (http://las.ehess.fr/document.php?id=663).
- Organize a workshop to maintain the international network of the project created by the launching workshop : « Zoonoses and emergence of new infectious diseases : when biology meets anthropology » http://www.college-de-france.fr/site/philippe-sansonetti/symposium-2012-2013.htm
Candidates must send before September 10 a CV, a sample of writing (article or PhD chapter) and a statement of suitability (less than 3000 words)
Contact : Frédéric Keck – Laboratoire d’anthropologie sociale – 52 rue Cardinal Lemoine – 75005 Paris – frederic.keck@college-de-France.fr
As teachers, we are increasingly called upon to promote student-centered learning and to build stronger links between teaching and disciplinary research in order to foster a culture that allows students “to take a research-based approach to their lifelong educational development” (Sproken-Smith & Walker, 2010). Scholars, academic administrators and institutions increasingly promote “inquiry-based learning”, a term referring to pedagogical approaches highlighting the importance of students’ investigative work through active learning that involve question-driven rather than topic-driven activities. While such approaches entail their own challenges, scholars and pedagogues largely agree that inquiry-based learning is a promising way forward and believe that it allows students to develop skills in self-reflection, critical thinking, the capability to engage in independent inquiry, responsibility for their own learning and intellectual growth and maturity (Spronken-Smith & Walker, 2010).
New approaches are currently being developed in anthropology and the humanistic social sciences for teaching in local as well as global settings, as scholars are asked to develop educational institutions and departments abroad in both high-income as well as low- and middle income settings. This requires the adaptation of pedagogical expectations, to align teaching with training, and the development of applied teaching techniques (Derges et al. 2012). Learning experiences in anthropology and the humanistic social sciences are broad and go beyond subject-matters to include learning about learning, learning how to unlearn, self-reflexivity, and interpersonal skills. We hope that our students will thereby develop a critical lens through which to think globally and act locally. In other words, by instilling openness to, respect for, and acceptance of individuals and groups from different social and cultural backgrounds, we aspire to provide students with the ability to communicate and act cross-culturally inside and outside of the classroom.
What is less clear is how we seek to address these goals in concrete terms. Questions that this series would like to address are: what kinds of new pedagogical approaches are being developed? What kinds of teaching tools are employed and how? How are students engaged in inquiry and research? How do these new teaching techniques impact on students’ learning, skills and personal growth? And, what impact might these new teaching techniques have on our disciplines?
If you are interested in contributing to this series, please send a brief proposal (max. 300 words) for a piece addressing the questions outlined above to Hanna Kienzler at email@example.com
by Ilana Löwy
Johns Hopkins University Press, 2010, 344 pages
In April 2014, an article in the Journal of the American Medical Association identified a disturbing correlation between cancer screening and “overtreatment.” Mammography, it turns out, may result in some women enduring grueling therapies that they do not even need. In fact, some studies estimate that nearly one in five women whose breast cancers are found by mammography end up being overtreated as a result of “overdiagnosis,” meaning that some of the tiny cancers it finds would probably never progress or threaten a patient’s life.
For readers of Ilana Lӧwy’s book, Preventive Strikes: Women, Precancer, and Prophylactic Surgery, these findings come as no surprise. Lӧwy’s compelling narrative is driven by what the author sees as a bewildering and perplexing relationship between the sophistication of diagnostic technologies (grounded in the latest developments of molecular biology) and the crudeness of modern cancer treatments. As the author also deftly reveals, the diagnosis of cancer itself has long been a complex, uncertain, and ritualized practice, shaped not only by shifts in scientific knowledge and technological advances, but also professional priorities that are historically and geographically contingent. Lӧwy shows how professional and lay understanding of cancer was and continues to be shaped by the aspiration of identifying and eliminating precancerous lesions, like those identified by mammography. But the author also argues that present-day preventive recommendations risk oversimplifying complex phenomena.
Preventive Strikes provides an invaluable contribution to ongoing discussions about preventive screening tests by offering provocative arguments about their origins and surprising history. Diagnostic tests have historically capitalized on the anxiety of healthy people, but tests have also produced a new kind of subjectivity in understanding and defining disease, as people have been “defined as being at higher than average risk of disease, either because they possess dangerous body parts (embodied risk) or because they have statistically abnormal readings of a laboratory test (‘fear by numbers) (6). Lӧwy illustrates how a persistent shift from the diagnosis of disease to the diagnosis of risk, meanwhile, has historically had a wide range of social and economic consequences, from reinforcing or justifying prevailing gender norms to producing new classes of consumers, medical technologies, and professional services, and thus new markets for merchandise and services.
In Chapters One and Two, Lӧwy explains how pathologists obtained control over cancer diagnosis roughly between 1910 and 1930, as changes in scientific knowledge and technology provided a clearer understanding of the physiological processes involved with the disease. While at the beginning of the nineteenth century, most experts believed that cancer was a local manifestation of a constitutional disorder, with hereditary predisposition being a factor in some cases, by the end of the 1800s cytology (the study of cells) had effectively challenged this systemic view of cancer. Pathologists, such as Rudolf Virchow and Julius Cohenheim, defined cancer, at the cellular level, as specific changes in tissues. Influenced by their observations of occupational cancers, they identified persistent irritation of tissues (physical, chemical, etc.) as the cause and believed that cancer always started as a localized event. Ultimately, this conviction had practical consequences. It meant that fully developed malignancies were preceded by an earlier, intermediary stage, which in turn could be reliably identified by microscopic examination. Lӧwy uses case studies from the New York Hospital and the Curie Foundation in Paris to illustrate how the development of the new frozen-section biopsy technique effectively made the diagnosis of breast cancers the domain of a new breed of surgical pathologists by the 1930s, even as some surgeons continued to argue that breast cancers could only be diagnosed definitively following surgical procedures.
As pathologists acquired a greater familiarity with breast lesions they made efforts to develop and improve a system of classification, even as their efforts were hampered by morphological and clinical variability. Meanwhile, statistical and epidemiological data from the likes of Jane Lane-Claypool bolstered the idea that rapid detection and early intervention were the keys to successfully treating cancers. In the interwar period, this led to the creation of cancer registries, and the involvement of insurance companies, with the goal of improving diagnosis, preventive approaches, and therapeutic interventions. Nevertheless, divergent definitions of premalignant conditions, disparate views about desirable thresholds for intervention, and opposing opinions about the best way to limit the danger of malignancies continued.
Chapter Three examines how radical surgeries for breast cancer diagnoses nevertheless remained the gold standard of treatment throughout the interwar period, despite disagreements among pathologists and surgeons about the proper treatment of conditions that were considered “precancerous” like chronic cystic mastitis, which had been known to surgeons since the nineteenth century, and had been identified in benign and malignant forms. Lӧwy compares the treatment of these types of “proliferative lesions of the breast” in different hospitals to illustrate how the interplay of material constraints, technical variables, theoretical presuppositions, differences in surgical/medical cultures, and the perception of the female breast as a “useless organ” may account for the high number of mastectomies for benign tumors in the 1920s and 1930s (68).
In Chapter Four, Lӧwy argues that the success of the “principle of prophylactic elimination of precancerous lesions” in the second half of the twentieth century is no more clearly illustrated than it is with the “unproblematic acceptance of painful and sometimes mutilating treatments” for asymptomatic women diagnosed with “carcinoma in situ” of the breast and cervix (83). The term carcinoma in situ described a cluster of cells that, when examined under the microscope, looked exactly like cancer cells but did not invade surrounding tissues. Given that by the 1930s a cancer was considered, by definition, an invasive legion, the term carcinoma in situ appeared to be an oxymoron. Nevertheless, the term was coined in the 1930s to stress the close relationship between invasive and noninvasive lesions, as experts believed at first that in situ cancers were presumably rare. Unexpectedly, the development of new diagnostic approaches—the Pap smear test for the detection of cervical cancer in the 1930s and 1940s and then mammographic screening for the detection of breast malignancies in the 1960s and 1970s—greatly increased the frequency of the observation of cancerlike noninvasive lesions. At the same time, Lӧwy argues “the desire to promote an early diagnosis of cancer probably favored the choice of the emotionally charged term ‘carcinoma’ to describe the lesions. The adoption of this term had in turn a practical consequence: a growing identification of noninvasive cancerlike lesions with carcinoma per se” (88). While the Pap smear was aimed at improving the diagnosis of confirmed cancers, it actually unraveled what was already a solid consensus around cervical cancer by encouraging problematic diagnoses of pre-invasive cervical lesions (carcinoma in situ) or less pronounced proliferative changes (dysplasia) following an abnormal test. And despite widespread disagreement about whether or not these lesions always led to a malignancy, in the 1940s and 1950s the majority of gynecologists nevertheless favored radical therapies like hysterectomies for noninvasive cervical lesions. The same pattern of diagnosis and radical treatment followed with mammogram screenings for breast cancer. By the 1950s and 1960s, some experts were advising women with carcinoma in situ in one breast to undergo a bilateral mastectomy, especially those women with a family history of breast cancer.
In Chapters Five and Six, Lӧwy pauses to examine the origins of screening and how it became so widely embraced. Until the mid-twentieth century, preventive treatment of premalignant lesions had been the domain of the physician, whereas after World War II, the development of mass screening campaigns became intertwined with public health interventions. Here, Lӧwy examines how and why the Pap smear was promoted as a tool for the early detection of cancer (by contrasting Pap screening in the UK vs. the US), and how the perceived success of screening for cervical cancer directly stimulated efforts to find a way to detect breast cancer. While experts championed early detection and mammography, from the 1970s on, critics identified problems with high rates of false positives, unproven claims of value, and overtreatment. Lӧwy identifies other consequences of screening here too—in terms of the danger that indiscriminate use of surgical procedures have presented, but also in terms of the psychological costs of “biological determinism.” A provocative discussion of what Lӧwy calls “cultures of screening” also engages the work of screening critics such as French oncologist Pierre Denoix, as well as sociological critiques of the rise of a “risk society” by the likes of Nicolas Rose and Ann Robertson (162-165).
Chapter Seven and Eight tackle the dual issues of hereditary risk and the controversial subject of prophylactic mastectomy, which Lӧwy characterizes as a new form of “surgical radicalism” (198). Here, the author addresses a variety of scientific and cultural factors involved, but also focuses on the experiential consequences of prophylactic and reconstructive surgeries.
A concluding chapter engages a combination of emotional, technical, ethical, and administrative dilemmas created by a persistent diagnostic uncertainty surrounding breast and cervical cancers. Lӧwy argues that in a war against cancer (like in a real war), preventive strikes are frequently driven by a problematic mixture of fear and a desire to be in control. The author’s concern is that a focus on prevention of risk, rather than reacting to an existing threat, may make “suspicion rather than evidence the new threshold for action” (235). Lӧwy notes that while the diagnostic category of “precancer” provided the basis for preventive strikes, the success of this category was not without a price: a systematic overlooking of uncertainties concerning the relationships between precancerous lesions and the disease of cancer. In concluding that “parts of the impressive edifice of early detection and screening for cancer were constructed on imperfectly stabilized foundations,” Lӧwy offers a cautionary tale.
The breadth of the arguments and complexity of the issues addressed in Preventive Strikes will certainly appeal to those with an interest in the history of medicine and medical technologies, health policy, science and technology studies, and biopolitics writ large, but the greatest value in the book may be its ability to speak to general readers and doctors just as meaningfully.
Eric W. Boyle is Chief Archivist at the National Museum of Health and Medicine, Lecturer at the University of Maryland, and Guest Researcher at the National Institutes of Health. His first book explored the history of quackery in the 20th-century United States and his next book project will examine the history of complementary and alternative medicine at the NIH.
SAR Press, 2009, 304 pages
Global Heath in Times of Violence is a fantastic book that belongs on the syllabus of every medical anthropology and global health course, particularly those focusing on the social determinants of health. This volume, edited by Barbara Rylko-Bauer, Linda Whiteford and Paul Farmer, contains a smorgåsbord of research from the editors, along with chapters by Philippe Bourgois, Didier Fassin, H.K. Heggenhougen, Carolyn Nordstrom, James Quesada and Merrill Singer. These individuals have shaped critical medical anthropology and through this volume they present a ‘greatest hits’ of the sub-field.
The authors aim to unravel the linkages between macro-level global forces and local experiences, and to tease out the relationships amongst different kinds of violence: visible/invisible, physical, symbolic, structural and normalized. They do this by using ethnographic narratives, introducing us to individuals they encountered during their research in sub-Saharan Africa, Central America, several cities in the United States and through historical (and personal) research in Nazi-occupied Poland. For instance, we meet Catorzina in Angola, whose name means fourteen and indicates that she is ‘old enough’ to be used for sex and exploitative labor; Barbara Rylko-Bauer introduces us to her mother, a Polish prisoner-doctor in Nazi camps and H.K. Heggenhougen tells the story of Francisco Curruchiche, a Guatemalan community-health worker who is murdered.
Aside from the content, the book also stands out because of its accessible language. In other pieces, some of these same authors can be convoluted and overly complicated in their diction. However, the editors have ensured a book that is accessible to anthropologists, as well as those in other disciplines that intersect with global heath. Highlights include Philippe Bourgois’ delightfully simple explanation of Foucault’s biopower and governmentality, along with Merrill Singer’s discussion of ‘syndemic theory.’
Similarly, much of the literature on the political economy of health within medical anthropology can be rather Marxist in tone, without being reflexive about the authors’ own ideological standpoint. The heartbreaking stories in this book have the potential to make even the most politically conservative readers angry about disastrous effects of neoliberal policies in these field sites. However, the use of relatively neutral language makes the book more palatable to a general audience, including academics and pundits outside of anthropology. There are some exceptions, particularly James Quesada’s chapter (“the relentless neoliberal assault imperils individuals”), but generally this volume remains accessible.
Recently, in Anthropology Today, Hugh Gusterson lamented the way in which anthropologists are left out of debates in current and international affairs (. Specifically, he discusses how economists and political scientists are seen to have jurisdiction over economics, war and peace. This volume shows how anthropologists – and medical anthropologists, specially – have valuable contributions to make in macro and microeconomics and in peace and conflict studies – and the accessible style helps in this venture.
There is little to find flawed with this volume, but there were threads of the research that I would have liked to see followed further. For example, most of the fieldwork sites are difficult ones. I could imagine that some of the earlier research (particularly in 1980s Central America) would have trouble passing university or funding review boards today, mainly due to institutional liability and insurance issues. For the benefit of students and early career researchers, it would have been helpful for the authors to reflect on the difficulties of gaining access to and staying safe in the field.
I would have also liked to see the authors continue their fieldwork further up the linkages, although perhaps this volume will inspire others to carry on this research. For example, Singer begins his analysis of street violence in Hartford by noting that Hartford houses the headquarters of the Colt Manufacturing Company, which led me to wonder what happens on the manufacturing line or in the boardrooms of this firearms producer and how these individuals relate to street violence and the ‘hyperghetto’ of Hartford.
Citing James Pfeiffer and Mark Nichter (2008), the editors also discuss the ‘growing recognition of the complete ways in which global health is affected by power structures and international relations.’ To this end, I would have liked to see more interrogation of the geopolitical: what happens in ‘on the ground’ in diplomatic sites and international organizations? If we are to discuss the ways in the World Trade Organization, World Bank or International Monetary Fund affect the day-to-day lives of the individuals who we met through these ethnographic narratives, then the reader also needs ethnographic narratives of civil servants in Geneva or Washington – something only briefly touched upon here, particularly in Caroline Nordstrom and Linda Whiteford’s chapters. This vein of research could also interrogate the statistics on health and violence that guide policy; James Quesada discusses the ‘political arithmetic’ that creates social, political and economic indicators – but I am left wanting more.
However, feeling left wanting more is perhaps another strength of the book. This book will serve to introduce the next generation of medical anthropologists and those entering careers in global health to the authors who have defined critical medical anthropology and to the themes and debates throughout the past thirty-five years, ideally inspiring them to continue the work of fighting injustice and inequality.
Rachel Irwin, Ph.D, is a senior researcher at the Stockholm International Peace Research Institute (SIPRI). Her current work focuses on women’s participation in political processes. In her previous research, she examined political ritual at the World Health Organization.
Gusterson, Hugh (2013) Anthropology in the News? Anthropology Today 29(6):11-13
Pfeiffer, J. and M. Nichter (2008). “What Can Critical Medical Anthropology Contribute to Health? A Health Systems Perspective.” Medical Anthropology Quarterly 22(4): 410-415.
And now, Part II of the journal roundup for June.
We begin with two special issues in the journals Cambridge Anthropology and Science in Context. The former, entitled “Epidemic Events and Processes,” is discussed here, while a roundup of the latter, “Science, Technology, Medicine – and the State: The Science-State Nexus in Scandinavia, 1850–1980,” can be found here.
As for the other journals with issues this month, see the listings below. (Open access articles, issues, and journals are marked as such.)
Ethnography, Fidelity, and the Evidence that Anthropology Adds: Supplementing the Fidelity Process in a Clinical Trial of Supported Employment
Carolyn Smith-Morris, Gilberto Lopez, Lisa Ottomanelli, Lance Goetz, and Kimberly Dixon-Lawson
This discussion considers the role and findings of ethnographic research within a clinical trial of supported employment for veterans with spinal cord injury. Contributing to qualitative evaluation research and to debates over anthropological evidence vis-à-vis clinical trials, we demonstrate how enactors of a randomized controlled trial can simultaneously attend to both the trial’s evidentiary and procedural requirements and to the lived experiences and needs of patients and clinicians. Three major findings are described: (1) contextual information essential to fidelity efforts within the trial; (2) the role of human interrelationships and idiosyncratic networks in the trial’s success; and (3) a mapping of the power and authority structures relevant to the staff’s ability to perform the protocol. We emphasize strengths of anthropological ethnography in clinical trials that include the provision of complementary, qualitative data, the capture of otherwise unmeasured parts of the trial, and the realization of important information for the translation of the clinical findings into new settings.
In 2008, a government hospital in southwest Tanzania added a “first-class ward,” which, unlike existing inpatient wards defined by sex, age, and ailment, would treat patients according to their wealth. A generation ago, Tanzanians viewed health care as a right of citizenship. In the 1980s and 1990s, structural adjustment programs and user fees reduced people’s access to biomedical attention. Tanzania currently promotes “amenity” wards and health insurance to increase health care availability, generate revenue from patients and potential patients, and better integrate for-profit care. In this article, I examine people’s discussions of these changes, drawing on ethnographic fieldwork in the 2000s and 1990s. I argue that Tanzanians criticize unequal access to care and health insurance, although the systemic structuring of inequalities is becoming normalized. People transform the language of socialism to frame individualized market-based care as mutual interdependence and moral necessity, articulating a new biomedical citizenship.
ARVs and ARTs: Medicoscapes and the Unequal Place-making for Biomedical Treatments in sub-Saharan Africa
Viola Hörbst and Angelika Wolf
Asking why some diseases gain global attention whereas others are neglected, we present two case studies that demonstrate the unequal treatment and financing options available for HIV/AIDS versus infertility treatments. We track three key phenomena central to understanding the unequal public attention given to certain ailments: peace and security, subordination of the social to the biological, and a “global” quality. Existing concepts such as global assemblages or therapeutic citizenship are quite limited when it comes to bodily conditions that result in social suffering and do not satisfy the conditions of advocacy. Since it is not enough to observe “flowing” and “moving,” we propose the concept of medicoscapes, to acknowledge that such activities simultaneously entail channeling and carving out. Medicoscapes enhance the analysis of linkages between different health conditions regardless of whether they are biological or social and how they interconnect places, sites, and people.
Many Zulu people who live in big cities in South Africa return to their rural homestead when they fall ill. Although the health care offered in rural areas is not efficient, people wish to connect to their family and ancestors. My aim is to explore acts of lungisa (“to put in order”) and what they say about health, agency, and the circumstances under which people live. Returning home means weaving oneself firmly within a web of relationships that are located in material things and places. Healing involves imperfect strategies used to better connect bodies, relationships, and places. I theorize the acts of returning using Adriana Cavarero’s concept of weaving together and argue that people produce space and relationships over time to exert some control over a life lived under political and economic circumstances that have created separation. Six months of ethnographic fieldwork make up the material for my analysis.
Everyday Narratives on Race and Health in Brazil
In 2006, Brazil approved a groundbreaking policy aimed at reducing significant racial health inequalities among its citizens. Like health disparities programs in the United States, Brazil’s policy is based on the assumptions that racial identity and racism are important health determinants and that citizens who identify as “black” suffer disproportionately from a number of health problems. How do these assumptions compare to Brazilian citizens’ conceptions of racial identity and health inequalities? To address this question, I present ethnographic data from two years of fieldwork in Brazilian public clinics and low-income neighborhoods. I show that a majority of research participants made no connection between race and better or worse health. Of those who perceived health inequalities by race, most believed that white Brazilians had more health problems than black or brown Brazilians. Finally, I consider the implications of these ethnographic findings for Brazil’s health disparities campaign.
“I Didn’t Feel Like I Was a Person Anymore”: Realigning Full Adult Personhood after Ostomy Surgery
Michelle Ramirez, Andrea Altschuler, Carmit McMullen, Marcia Grant, Mark Hornbrook and Robert Krouse
Colorectal cancer (CRC) is the third most common cancer in the United States. For some CRC patients, cancer treatment involves creating a permanent or temporary intestinal ostomy. Having an ostomy often results in complex social and physical concerns—including unpredictable and at times publicly noticeable bowel output. In this article, we discuss findings from 30 in-depth interviews with female CRC survivors with ostomies in the western United States. We highlight how having an ostomy disrupts culturally sanctioned practices of continence that mark the attainment of full-adult personhood. We discuss how survivors reclaim a sense of full personhood after ostomy surgery through a process of realignment that entails both learning how to manage ostomy equipment to conceal bowel activity and reappraising their illness and suffering. We suggest that the anthropological categories of personhood and personhood realignment be incorporated into research and interventions aimed at increasing support among cancer survivors living with bodily impairments.
“Playing the Numbers Game”: Evidence-based Advocacy and the Technocratic Narrowing of the Safe Motherhood Initiative (Open Access)
Katerini T. Storeng and Dominique P. Béhague
Based on an ethnography of the international Safe Motherhood Initiative (SMI), this article charts the rise of evidence-based advocacy (EBA), a term global-level maternal health advocates have used to indicate the use of scientific evidence to bolster the SMI’s authority in the global health arena. EBA represents a shift in the SMI’s priorities and tactics over the past two decades, from a call to promote poor women’s health on the grounds of feminism and social justice (entailing broad-scale action) to the enumeration of much more narrowly defined practices to avert maternal deaths whose outcomes and cost effectiveness can be measured and evaluated. Though linked to the growth of an audit- and business-oriented ethos, we draw from anthropological theory of global forms to argue that EBA—or “playing the numbers game”—profoundly affects nearly every facet of evidence production, bringing about ambivalent reactions and a contested technocratic narrowing of the SMI’s policy agenda.
Material Proximities and Hotspots: Toward an Anthropology of Viral Hemorrhagic Fevers (Open Access)
Hannah Brown and Ann H. Kelly
This article outlines a research program for an anthropology of viral hemorrhagic fevers (collectively known as VHFs). It begins by reviewing the social science literature on Ebola, Marburg, and Lassa fevers and charting areas for future ethnographic attention. We theoretically elaborate the hotspot as a way of integrating analysis of the two routes of VHF infection: from animal reservoirs to humans and between humans. Drawing together recent anthropological investigations of human–animal entanglements with an ethnographic interest in the social production of space, we seek to enrich conceptualizations of viral movement by elaborating the circumstances through which viruses, humans, objects, and animals come into contact. We suggest that attention to the material proximities—between animals, humans, and objects—that constitute the hotspot opens a frontier site for critical and methodological development in medical anthropology and for future collaborations in VHF management and control.
Ideology and disease identity: the politics of rickets, 1929–1982 (Open Access)
How can we assess the reciprocal impacts of politics and medicine in the contemporary period? Using the example of rickets in twentieth century Britain, I will explore the ways in which a preventable, curable non-infectious disease came to have enormous political significance, first as a symbol of socioeconomic inequality, then as evidence of racial and ethnic health disparities. Between the 1920s and 1980s, clinicians, researchers, health workers, members of Parliament and later Britain’s growing South Asian ethnic communities repeatedly confronted the British state with evidence of persistent nutritional deficiency among the British poor and British Asians. Drawing on bitter memories of the ‘Hungry Thirties’, postwar rickets—so often described as a ‘Victorian’ disease—became a high-profile sign of what was variously constructed as a failure of the Welfare State; or of the political parties charged with its protection; or of ethnically Asian migrants and their descendants to adapt to British life and norms. Here I will argue that rickets prompted such consternation not because of its severity, the cost of its treatment, or even its prevalence; but because of the ease with which it was politicised. I will explore the ways in which this condition was envisioned, defined and addressed as Britain moved from the postwar consensus to Thatcherism, and as Britain’s diverse South Asian communities developed from migrant enclaves to settled multigenerational ethnic communities.
Narratives of the experience of pulmonary tuberculosis (TB) are relatively rare in the Irish context. A scourge of the early twentieth century, TB was as much a social as a physically debilitating disease that rendered sufferers silent about their experience. Thus, the personal diaries and letters of Irish poet, Seán Ó Ríordáin, (1916–1977) are rare. This article presents translations of his personal papers in a historico-medical context to chronicle Ó Ríordáin’s experience of a life marred by respiratory disease. Familiar to generations of schoolchildren are his imaginative poems, whose lively metre punctuated the Irish language curriculum from primary through to secondary schooling; for most they leave an indelible mark. Such buoyant poems however belie the reality of his existence, lived in the shadow of chronic illness, and punctuated with despair over his condition and anxiety about the periods of extended sick leave his illness necessitated. Although despair dominated his diaries and he routinely begged God, Mary, the Saints and the devil for death, they were also the locus where his creativity developed. In his diaries, caricatures of friends and sketches of everyday things nestle among the first lines of some of his most influential poems and quotes from distinguished philosophers and writers. Evocative and tragic, his diaries offer a unique prism to the experience of respiratory disease in Ireland.
Accounting for personhood in palliative sedation: the Ring Theory of Personhood
Lalit Kumar Radha Krishna
Application of sedation at the end of life has been fraught with ethical and clinical concerns, primarily focused on its potential to hasten death. However, in the face of clinical data that assuage most of these concerns, a new threat to this treatment of last resort has arisen. Concern now pivots on its effects on the personhood of the patient, underpinned by the manner in which personhood has been conceptualised. For many authors, it is consciousness that is seen to be the seat of personhood, thus its loss is seen to rob a patient of their moral and ethical worth, leaving them in a state that cannot ethically be differentiated from death. Here I proffer a clinically based alternative to this view, the Ring Theory of Personhood, which dispels these concerns about sedation at the end of life. The Ring Theory envisages personhood as a coadunation of three domains of concern: the innate, the individual and the relational elements of personhood. The innate element of personhood is held to be present among all humans by virtue of their links with the Divine and or their human characteristics. The individual elements of personhood pivot on the presence of consciousness-dependent features such as self-awareness, self-determination and personality traits. The relational component of personhood envisages an individual as being ‘socially embedded’ replete with social and familial ties. It is these three equally important inter-related domains that define personhood.
He drove forward with a yell: anger in medicine and Homer
A. Bleakley, R. Marshall, and D. Levine
We use Homer and Sun Tzu as a background to better understand and reformulate confrontation, anger and violence in medicine, contrasting an unproductive ‘love of war’ with a productive ‘art of war’ or ‘art of strategy’. At first glance, it is a paradox that the healing art is not pacific, but riddled with militaristic language and practices. On closer inspection, we find good reasons for this cultural paradox yet regret its presence. Drawing on insights from Homer’s The Iliad and The Odyssey, we argue for better understanding of confrontation, anger, bullying, intimidation and violence in medicine in order to change the culture. For example, equating medicine with war is not a given condition of medicine but a convenient metaphor with historical origins and a historical trajectory. Other, non-martial metaphors, such as medicine as collaboration, may be more appropriate in an age of team-based care. Taking lessons from Homer, we suggest three key ways in which cold-hearted confrontation and anger in medicine can be transformed into productive, warm-hearted engagement: the transformation of angry impulse into (1) reflection, (2) moral courage and (3) empathy. Thinking with Homer can offer an aesthetically and morally charged alternative to the current body of literature on topics, such as anger in doctors, and how this may be ‘managed’, without recourse to an instrumental economy where emotions are viewed as commodities, and emotional responses can be ‘trained’ through communication skills courses.
A short history of providing medical history within the British medical undergraduate curriculum
N. H. Metcalfe and E. Stuart
This article aims to discuss the history of medical history in the British medical undergraduate curriculum and it reviews the main characters and organisations that have attempted to earn it a place in the curriculum. It also reviews the arguments for and against the study of the subject that have been used over the last 160 years.
The madness of Gerard de Nerval
This paper examines the madness of Gerard de Nerval, the nineteenth-century French writer. It looks at his account of mental disturbance, how he responded to the psychiatric profession and how he reacted to being diagnosed as insane. It considers his autobiographical novella of madness, Aurelia, which he began at the suggestion of his alienist, Dr Emile Blanche, and while he was still an asylum inmate. Nerval’s story raises important questions about the nature of madness. Is it, as he contended, a mystical experience revealing truths about spiritual worlds inaccessible to the ‘sane’? Does psychiatry fail to understand it and inappropriately reduce it to the categories of scientific reason? Or are such notions of the spiritual value of madness guilty of the charge that they romanticise insanity? Do they make extravagant claims for an experience that is often disturbing and debilitating? What is the relationship between madness and recovery? Should an individual try to forget their experience of mental disturbance once they recover, or should they examine what the event reveals about themselves? Can the language of madness be decoded to unveil profound truths as Carl Jung and R.D. Laing have suggested, or is it, as the psychiatrist German Berrios maintains, merely a series of ‘empty speech acts’, signifying nothing? And finally, how does one avoid writing about madness, and instead write madness?
The use of abstract paintings and narratives to foster reflective capacity in medical educators: a multinational faculty development workshop (Open Access)
Khaled Karkabi, Hedy S. Wald, and Orit Cohen Castel
Reflective capacity is integral to core healthcare professional practice competencies. Reflection plays a central role in teacher education as reflecting on teaching behaviours with critical analysis can potentially improve teaching practice. The humanities including narrative and the visual arts can serve as a valuable tool for fostering reflection. We conducted a multinational faculty development workshop aiming to enhance reflective capacity in medical educators by using a combination of abstract paintings and narratives. Twenty-three family physicians or physicians-in-training from 10 countries participated in the workshop. Qualitative assessment of the workshop showed that the combined use of art and narrative was well received and perceived as contributing to the reflective exercise. Participants generally felt that viewing abstract paintings had facilitated a valuable mood transformation and prepared them emotionally for the reflective writing. Our analysis found that the following themes emerged from participants’ responses: (1) narratives from different countries are similar; (2) the use of art helped access feelings; (3) viewing abstract paintings facilitated next steps; (4) writing reflective narratives promoted examination of educational challenges, compassion for self and other, and building an action plan; and (5) sharing of narrative was helpful for fostering active listening and appreciating multiple perspectives. Future research might include comparing outcomes for a group participating in arts–narrative-based workshops with those of a control group using only reflective narrative or in combination with figurative art, and implementing a combination of qualitative and quantitative methods of assessment.
Humanising illness: presenting health information in educational comics (Open Access)
Research into the effectiveness of comic books as health education tools overwhelmingly consists of studies evaluating the information learnt as a result of reading the comic, for example using preintervention and postintervention questionnaires. In essence, these studies evaluate comics in the same way in which a patient information leaflet might be evaluated, but they fail to evaluate the narrative element of comics. Health information comics have the potential to do much more than simply convey facts about an illness; they can also support patients in dealing with the social and psychological aspects of a condition. This article discusses how some common elements of educational comics are handled in a selection of comics about diabetes, focusing on the more personal or social aspects of the condition as well as the presentation of factual information. The elements examined include: fears and anxieties; reactions of friends and family; interactions with medical professionals; self-management; and prevention. In conclusion, the article argues that comics, potentially, have many advantages over patient information leaflets, particularly in the way in which they can offer ‘companionship’, helping patients to address fears and negative feelings. However, empirical studies are required to evaluate educational comics in a way which takes account of their potential role in supporting patients in coming to terms with their condition, as well as becoming better informed.
Fight like a ferret: a novel approach of using art therapy to reduce anxiety in stroke patients undergoing hospital rehabilitation
Khalid Ali, Tony Gammidge, and Diane Waller
Rationale The holistic aspect of stroke rehabilitation to include psychological well-being is currently neglected, with more emphasis placed on physical recovery despite anxiety and depression being common poststroke. From the limited amount of current literature, it seems that creative strategies such as art therapy (AT) can be beneficial in reducing isolation and anxiety among stroke patients. / Methods Stroke patients (able to consent) in a hospital rehabilitation unit were invited to participate in two weekly AT sessions for 6 weeks, facilitated by an art psychotherapist using paints, crayons, clay, a camera and an iPad. Hospital anxiety and depression scales (HAD) and therapy outcome measures (TOM) were measured at the beginning and end of the study. / Results Six male patients were recruited, average age 69 years (38–85). Group discussions allowed patients to express openly feelings of frustration as well as hope for physical and emotional recovery: ‘fight like a ferret’, an expression used by a group member. The group produced several art objects and photographic images that were collated using stop-frame animation to produce a 10 min film. Median HAD score for the group was eight points upon entering the study and six points on finishing the study. Key conclusions There is little attention to the emotional needs of stroke patients in rehabilitation. Properly designed research studies exploring the role of AT in addressing anxiety and depression poststroke are needed. Our study showed that AT was a feasible intervention that helped patients explore the sequel of stroke in an open supportive environment.
Student Original Article
The relationship between heart and ‘inner self’ from Aristotle to current clinical practice
Modern songs, films, novels and daily speech often use heart imagery to illustrate ‘inner self’ experiences, such as deeply felt emotions. Where do these ideas come from and what relevance (if any) do they have for medicine today? This article explores some of the key origins and periods of development of heart/‘inner self’ ideas before considering the significance of heart/‘inner self’ interactions in modern clinical practice: from Aristotelian anatomy and the translated Hebrew Scriptures; through Shakespeare, William Harvey and the Protestant Reformation; to theories of emotion and modern-day cardiology. I conclude that heart/‘inner self’ interactions exist in clinically significant ways, but are poorly understood and under-recognised in healthcare settings. Greater integration of cardiovascular and psychosocial medicine would improve patient care.
Clinical genetic professionals are used to being flooded by claims about the seemingly endless potential and promise of next-generation sequencing (NGS) in medicine today. This paper is about managing expectations in translational medicine. From 2009 to 2011, we conducted focus groups with genetic and allied professionals concerned with genomics in the clinic to examine their attitudes and perspectives of genetic and genomic tools in this environment. In this paper, we examine and explore some of their discussions, specifically related to NGS and whole genome sequencing tests and their introduction as normal clinical tools. Informed by sociology of expectations (SE), we discuss expectational language in the arena of translational medicine. Through SE, illuminated are some barriers and strategies used by professionals to manage expectations. Further, our work suggests the importance of SE and more nuanced study to understand the discursive realm of translational genomic medicine.
This article examines the implications for parents and family members when a child is diagnosed with a genetic syndrome. In particular, it describes how practices of understanding are shaped when the syndrome occurs “de novo,” that is, when it has not been inherited from either parent and where there is no family history. Despite a significant body of research exploring the social implications of genetic disease and diagnostic technologies, sociological understandings of the implications of a de novo mutation are considerably limited. This article draws on semi-structured interviews conducted with 23 parents of children diagnosed with 22q11 deletion syndrome, a syndrome associated with high rates of de novo cases. Three themes were identified: “lay” understandings of genetics, making genetic connections and genetic gatekeeping. Overall, this article articulates and confirms the enduring significance of family for contextualizing health and illness.
Social, ethical and legal considerations raised by the discovery and patenting of the BRCA1 and BRCA2 genes
Yann Jolya and Patricia N. Tonin
The discovery of the BRCA1 gene had an immediate and profound impact on medical practice by providing a means to assess and manage breast and ovarian cancer risk in individuals and their families carrying a mutation in the gene. The patenting of BRCA1 and then BRCA2 (another cancer-predisposing gene) by Myriad Genetics Inc. raised controversial ethical and legal issues relating to access and research, and its enforcement caused growing discontent. In the USA, the validity of the patents on the isolated BRCA1 and BRCA2 genes was challenged in court. After a four-year legal battle, the US Supreme Court invalidated both patents. This commentary reviews the discovery of these cancer-predisposing genes from the perspective of one of the co-discoverers of BRCA1. It also discusses the socio-ethical impact of the patenting of BRCA1 and BRCA2 and the legal implications of the US Supreme Court’s decision.
The use of DNA technologies for criminal investigation purposes illuminates an interplay of knowledge and expertise where meaning and relevance of biological traces are negotiated. Through the analysis of five criminal cases that took place in Portugal between 1995 and 2010, and where DNA technologies were used, this article will focus on the dialogues established between the police and the forensic laboratories. I will argue that, on the one hand, the police investigators’ uses of DNA technologies seek to legitimate and provide an external source of neutrality and objectivity to the constructed narratives surrounding the commission of a crime. On the other hand, laboratories and forensic experts engage in the delimitation and preservation of their professional autonomy by developing boundary work around their scientific expertise through the translation and conversion of criminal traces into scientific artifacts.
Regulations for genetically modified organisms (GMOs) in Korea fluctuate between technocracy and the precautionary principle (PP). Technocratic PP denotes the coexistence, or coproduction, of technocracy with PP – a complex ensemble of technocratic, precautionary policies, and hybrids of the two. This paper analyzes four types of PP-based policies linked to Korean GMO regulations: foresight and monitoring of risk; reverse burden of proof; public participation; and the public’s right to know. Korean GMO regulations are consistent with the Cartagena Protocol on Biosafety, a type of PP, but lack long-term risk assessment as well as public participation. Technocracy is embedded both in advance informed agreements as a reverse burden of proof and in proof-based GMO labeling as a right-to-know policy. Technocratic PP results in inconsistencies between PP and technocratic epistemology and the gap between PP-based institutions and technocratic practices. Technocratic PP is therefore a typical phenomenon that occurs in the “glocalization” of risk regulation.
Philosophy, Ethics, and Humanities in Medicine (Open Access)
A four-part working bibliography of neuroethics: part 1: overview and reviews – defining and describing the field and its practices
Liana Buniak, Martina Darragh, and James Giordano
Background Neuroethics entails investigations of neurocognitive mechanisms of morality and ethics; and studies and address of the ethical issues spawned by the use of neuroscience and its technologies to investigate cognition, emotion and actions. These two principal emphases, or what have been called “traditions” of neuroethics both mirror traditional bioethical discussions (such as debates about the safety of technological and pharmaceutical advances and ethical implications of new scientific and technological discoveries), and engage discourse about neuroscientific investigations of (proto-moral and moral) cognition, emotions and behaviors, and what such findings may mean for human beliefs and conduct – from the individual to the political levels. Given the growth, range, and rapid maturation of the field of neuroethics we provide an iterative, four-part document that affords a repository of international papers, books, and chapters that address the field in overview, and present discussion(s) of more particular aspects and topics of neuroethics. This first installment lists reviews and overviews of the discipline, and broad summaries of basic developments and issues of the field. Methods To systematically survey the neuroethics literature, searches were performed by accessing 11 databases, 8 additional literature depositories, and 4 individual journal searches using indexing language for National Library of Medicine (NLM) Medical Subject Heading databases. Searches and assurance against overlapping coverage were conducted using the RefWorks citation management program. Results Overview, review and reflections upon the history and multicultural perspectives of neuroethics were obtained and relevant listings from international journals, books, and book chapters are provided. Part I will be followed by three installments that will address a): the neuroscience of morality and ethics, including discussions of free will, and personal autonomy; b) “second tradition neuroethics”, to include specific ethical issues in neuroscience; clinical neuroethics; and c) neuroethics education/training; neuroethics and society; neuroethics and law; neuroethics and policy; and international neuroethics.
The aim of this essay is to elaborate philosophical and ethical underpinnings of posthumous diagnosis of famous historical figures based on literary and artistic products, or commonly called retrospective diagnosis. It discusses ontological and epistemic challenges raised in the humanities and social sciences, and attempts to systematically reply to their criticisms from the viewpoint of clinical medicine, philosophy of medicine, particularly the ontology of disease and the epistemology of diagnosis, and medical ethics. The ontological challenge focuses on the doubt about the persistence of a disease over historical time, whereas the epistemic challenge disputes the inaccessibility of scientific verification of a diagnosis in the past. I argue that the critics are in error in conflating the taxonomy of disease (nosology) and the act of diagnosing a patient. Medical diagnosis is fundamentally a hypothesis-construction and an explanatory device that can be generated under various degrees of uncertainty and limited amount of information. It is not an apodictic judgment (true or false) as the critics presuppose, but a probabilistic (Bayesian) judgment with varying degrees of plausibility under uncertainty. In order to avoid this confusion, I propose that retrospective diagnosis of a historical figure be syndromic without identifying underlying disease, unless there is justifiable reason for such specification. Moreover it should be evaluated not only from the viewpoint of medical science but also in a larger context of the scholarship of the humanities and social sciences by its overall plausibility and consistency. On the other hand, I will endorse their concerns regarding the ethics and professionalism of retrospective diagnosis, and call for the need for situating such a diagnosis in an interdisciplinary scope and the context of the scholarship of the historical figure. I will then enumerate several important caveats for interdisciplinary retrospective diagnosis using an example of the retrospective diagnosis of Socrates for his life-long intermittent neurologic symptoms. Finally, I will situate the present argument in a larger context of the major debate among the historians of medicine and paleopathologists, and discuss the similarities and differences.
The moral code in Islam and organ donation in Western countries: reinterpreting religious scriptures to meet utilitarian medical objectives
Mohamed Y. Rady and Joseph L. Verheijde
End-of-life organ donation is controversial in Islam. The controversy stems from: (1) scientifically flawed medical criteria of death determination; (2) invasive perimortem procedures for preserving transplantable organs; and (3) incomplete disclosure of information to consenting donors and families. Data from a survey of Muslims residing in Western countries have shown that the interpretation of religious scriptures and advice of faith leaders were major barriers to willingness for organ donation. Transplant advocates have proposed corrective interventions: (1) reinterpreting religious scriptures, (2) reeducating faith leaders, and (3) utilizing media campaigns to overcome religious barriers in Muslim communities. This proposal disregards the intensifying scientific, legal, and ethical controversies in Western societies about the medical criteria of death determination in donors. It would also violate the dignity and inviolability of human life which are pertinent values incorporated in the Islamic moral code. Reinterpreting religious scriptures to serve the utilitarian objectives of a controversial end-of-life practice, perceived to be socially desirable, transgresses the Islamic moral code. It may also have deleterious practical consequences, as donors can suffer harm before death. The negative normative consequences of utilitarian secular moral reasoning reset the Islamic moral code upholding the sanctity and dignity of human life.
Schizophrenia Bulletin (Open Access)
Culture and Hallucinations: Overview and Future Directions
Frank Larøi, Tanya Marie Luhrmann, Vaughan Bell, William A. Christian Jr., Smita Deshpande, Charles Fernyhough, Janis Jenkins, and Angela Woods
A number of studies have explored hallucinations as complex experiences involving interactions between psychological, biological, and environmental factors and mechanisms. Nevertheless, relatively little attention has focused on the role of culture in shaping hallucinations. This article reviews the published research, drawing on the expertise of both anthropologists and psychologists. We argue that the extant body of work suggests that culture does indeed have a significant impact on the experience, understanding, and labeling of hallucinations and that there may be important theoretical and clinical consequences of that observation. We find that culture can affect what is identified as a hallucination, that there are different patterns of hallucination among the clinical and nonclinical populations, that hallucinations are often culturally meaningful, that hallucinations occur at different rates in different settings; that culture affects the meaning and characteristics of hallucinations associated with psychosis, and that the cultural variations of psychotic hallucinations may have implications for the clinical outcome of those who struggle with psychosis. We conclude that a clinician should never assume that the mere report of what seems to be a hallucination is necessarily a symptom of pathology and that the patient’s cultural background needs to be taken into account when assessing and treating hallucinations.
Interdisciplinary Approaches to the Phenomenology of Auditory Verbal Hallucinations
Angela Woods, Nev Jones, Marco Bernini, Felicity Callard, Ben Alderson-Day, Johanna C. Badcock, Vaughan Bell, Chris C. H. Cook, Thomas Csordas, Clara Humpston, Joel Krueger, Frank Larøi, Simon McCarthy-Jones, Peter Moseley, Hilary Powell, Andrea Raballo, David Smailes, and Charles Fernyhough
Despite the recent proliferation of scientific, clinical, and narrative accounts of auditory verbal hallucinations (AVHs), the phenomenology of voice hearing remains opaque and undertheorized. In this article, we outline an interdisciplinary approach to understanding hallucinatory experiences which seeks to demonstrate the value of the humanities and social sciences to advancing knowledge in clinical research and practice. We argue that an interdisciplinary approach to the phenomenology of AVH utilizes rigorous and context-appropriate methodologies to analyze a wider range of first-person accounts of AVH at 3 contextual levels: (1) cultural, social, and historical; (2) experiential; and (3) biographical. We go on to show that there are significant potential benefits for voice hearers, clinicians, and researchers. These include (1) informing the development and refinement of subtypes of hallucinations within and across diagnostic categories; (2) “front-loading” research in cognitive neuroscience; and (3) suggesting new possibilities for therapeutic intervention. In conclusion, we argue that an interdisciplinary approach to the phenomenology of AVH can nourish the ethical core of scientific enquiry by challenging its interpretive paradigms, and offer voice hearers richer, potentially more empowering ways to make sense of their experiences.
Emerging Perspectives From the Hearing Voices Movement: Implications for Research and Practice
Dirk Corstens, Eleanor Longden, Simon McCarthy-Jones, Rachel Waddingham, and Neil Thomas
The international Hearing Voices Movement (HVM) is a prominent mental health service-user/survivor movement that promotes the needs and perspectives of experts by experience in the phenomenon of hearing voices (auditory verbal hallucinations). The main tenet of the HVM is the notion that hearing voices is a meaningful human experience, and in this article, we discuss the historical growth and influence of the HVM before considering the implications of its values for research and practice in relation to voice-hearing. Among other recommendations, we suggest that the involvement of voice-hearers in research and a greater use of narrative and qualitative approaches are essential. Challenges for implementing user-led research are identified, and avenues for future developments are discussed.
During the most oppressive decades of National-Catholicism imposed by the Franco regime, scientific and medical expertise and knowledge were used to promote a particular form of heterosexual love that supported patriarchal normativity and notions of femininity. This ‘science of love’ represents two dispositifs of feminization that circulated through a range of scientific and medical knowledges (e.g. eugenics, ethology, physiology, neurosciences and psychiatry). It not only supported the internal coherence of science and medicine, but also supported particular forms of knowledge within the cultural context of National-Catholicism. Although the science of love was inspired by particular notions of romantic love, it was also contested by the daily and practical experiences of women. Different women in Franco’s Spain deployed marginalized and subaltern knowledges as they orchestrated an emotional knowledge that was more emancipatory and useful for everyday amorous preoccupations and well-being than the one in medical and psychiatric texts. Women’s discussions of love represented a key site and source of knowledge, an authentic repository of imaginative ideas that are also useful for the present to challenge patriarchal norms.
Situating Standards in Practices: Multi Drug-Resistant Tuberculosis Treatment in India
Nora Engel and Ragna Zeiss
Public health care needs to cope with a basic dilemma between providing standardized care within public programmes across entire and at times resource-constrained countries and adapting this care locally when responding to individual needs. This tension between standardization and local adaptation becomes particularly obvious for the prolonged and complicated treatment of multidrug-resistant tuberculosis (MDR-TB). Situated standardization, as introduced by Zuiderent-Jerak [2007a, 2007b] offers a way out of this dilemma. It helps to focus on how standards need to be situated in practice rather than viewing standardization and local adaptation as mutually exclusive practices. How do actors relate standardization and individual care in their practices of treating MDR-TB? Results from qualitative fieldwork at the first MDR-TB treatment sites of the Indian TB programme show that actors situate standards in a particular way. They assess the role of guidelines in a particular situation and on that basis recognize the core recommendations of guidelines or go beyond the guidelines. This allows actors to negotiate how standards should be situated and reconciles the dilemma between local adaptation and standardization. Having guidelines internalized, as is common for Indian TB control, bears both promises and pitfalls for engaging in standardization processes in a situated manner. The results contribute to science and technology study scholarship on guideline development. They highlight how actors coordinate the situating of standards and how this depends upon cultures of control. This illustrates the potential of qualitative studies on local adaptation for guideline developers by revealing existing practices of relating and negotiating local adaptation and standardization.
‘We Are All the Same, We All Are Mestizos’: Imagined Populations and Nations in Genetics Research in Colombia
María Fernanda Olarte Sierra and Adriana Díaz Del Castillo Hernández
In Colombia, as in other Latin American countries, current population genetics research is based on the understanding that Colombians constitute a mestizo nation, given the admixture process that took place between Africans, Amerindians, and Europeans during colonial times. The mestizo is a pervasive category used by geneticists to conduct, organise, and publish research studies that deal with the continent’s peopling process and the genetic makeup of its contemporary population(s). It is also the dominant imaginary for the Colombian population and a key nation-building ideology. By tracing how this category moves and is used across four Colombian genetics laboratories, it is possible to discern that despite its apparently clear-cut boundaries, the mestizo is contingent, contested, and flexible, allowing for multiple understandings and usages. This flexibility and multiplicity are visible in the quantification of genetic ancestry, the divisions of geographical location, and the understanding of gender. Such understandings allow one to think about a homogeneous nation (inclusive) that is simultaneously heterogeneous (exclusive); they provide multiple but not necessarily contradictory possibilities of being mestizo, allowing the coexistence of images of the nation that could otherwise seem contradictory; and they permit navigation around contested terms such as race, while simultaneously thinking of mixed races or racialised individuals. Finally, these flexible and multiple constructions of the mestizo (re)produce various subjects as ‘other’, whether they are women, the Indigenous, the black/dark, or the poor.
A qualitative exploration of access to urban migrant healthcare in Nairobi, Kenya
Christine Arnold, Jason Theede, and Anita Gagnon
In recent years, Kenya’s capital city Nairobi has experienced an influx of international economic migrants, as well as migrants forced to flee their neighboring countries of origin, or coming from UNHCR-managed refugee camps into the city. Urban migrants regularly face challenges integrating with host communities and consequently face health vulnerabilities. The International Organization for Migration in Kenya was concerned about the potential marginalization of urban migrants from mainstream health programming and a lack of data upon which to base their activities. The purpose of this project was to gain a greater understanding of urban migrants’ barriers to accessing healthcare in Nairobi compared with barriers faced by Kenyans living in the same locations. Guiding our work was a conceptual framework for assessing access to healthcare, which defines availability, geographic accessibility, financial accessibility and acceptability as the four dimensions of access. We identified key informants in collaboration with The National Organisation for Peer Educators, and these individuals assisted in identifying communities within Nairobi where large proportions of migrants reside. Four communities were selected for further study. In each, interviews with government officials and service providers were conducted, and focus group discussions were held with both migrants and Kenyans. Verbatim transcripts were content-analyzed using an open coding technique. Common barriers to accessing care that were shared by migrants and Kenyans included waiting times, drug availability, transportation and cost. Barriers unique to migrants were: threat of harassment; cost discrepancies between migrant and Kenyan clients; real or perceived discrimination; documentation requirements and language barriers. Despite articles from the 2010 Constitution of Kenya that assert the right to health for every person in Kenya, migrants continue to experience unique barriers in accessing healthcare. Efforts to eliminate these barriers should address policy-level interventions, strengthened networks and partnerships, improved migrant-sensitive services and especially continued research in migrant health.
The multiple truths about crystal meth among young people entrenched in an urban drug scene: A longitudinal ethnographic investigation
Danya Fast, Thomas Kerr, Evan Wood, and Will Small
Transitions into more harmful forms of illicit drug use among youth have been identified as important foci for research and intervention. In settings around the world, the transition to crystal methamphetamine (meth) use among youth is considered a particularly dangerous and growing problem. Epidemiological evidence suggests that, particularly among young, street-involved populations, meth use is associated with numerous sex- and drug-related “risks behaviors” and negative health outcomes. Relatively few studies, however, have documented how youth themselves understand, experience and script meth use over time. From 2008 to 2012, we conducted over 100 in-depth interviews with 75 street-entrenched youth in Vancouver, Canada, as well as ongoing ethnographic fieldwork, in order to examine youth’s understandings and experiences of meth use in the context of an urban drug scene. Our findings revealed positive understandings and experiences of meth in relation to other forms of drug addiction and unaddressed mental health issues. Youth were simultaneously aware of the numerous health-related harms and social costs associated with heavy meth use. Over time, positive understandings of meth may become entirely contradictory to a lived reality in which escalating meth use is a factor in further marginalizing youth, although this may not lead to cessation of use. Recognition of these multiple truths about meth, and the social structural contexts that shape the scripting of meth use among youth in particular settings, may help us to move beyond moralizing debates about how to best educate youth on the “risks” associated with meth, and towards interventions that are congruent with youth’s lived experiences and needs across the lifecourse.
Hidden harms: Women’s narratives of intimate partner violence in a microbicide trial, South Africa
Jonathan Stadler, Sinead Delany-Moretlwe, Thesla Palanee, and Helen Rees
In a context of high rates of intimate partner violence (IPV), trials of female-controlled technologies for HIV prevention such as microbicides may increase the possibility of social harms. Seeking to explore the relationship between IPV and microbicide use further, this paper documents women’s narratives of participating in the Microbicide Development Program (MDP) trial in Johannesburg, South Africa, and experiences of partner violence and conflict. A social science sub-study, nested within the trial, was conducted between September 2005 and August 2009, and 401 serial in-depth-interviews were undertaken with 150 women. Using coded interview transcripts, we describe the distribution of IPV and the possible association thereof with microbicide gel use and trial participation. More than a third of these 150 women reported IPV, of which half the cases were related to involvement in the trial. In their narratives, those women reporting IPV cast their partners as authoritarian, controlling and suspicious and reported verbal abuse, abandonment, and in some cases, beatings. Shared experiences of everyday violence shaped women’s feelings of unease about revealing their participation in the trial to intimate partners and attempted concealment further contributed to strains and conflict within relationships. Our findings point to the role of social scientific enquiry in identifying the less obvious, hidden negative impacts of participation in a clinical trial therefore exposing limitations in the biomedical construction of ‘social harms’, as well as the implications thereof for potential future use outside the clinical trial setting.
Numerous observers have commented on the cultural prominence of breast cancer in North America. However, although popular and biomedical conceptions of cancer survivorship have been influenced to an inordinate degree by breast cancer, few researchers have examined the impact of dominant discourses on people diagnosed with other forms of cancer. Drawing on interviews with 32 Canadian men and women with a history of cancer conducted between 2010 and 2013, I demonstrate that breast cancer became central to their own experiences of cancer, providing an important lens through which to understand the effects of the disease. The effects of these comparisons were diverse, leading some participants to want to differentiate themselves from this implicit norm, leading others to downplay the seriousness of their own forms of suffering, and amplifying a sense of shame and stigma in yet others.
Cultures of resistance? A Bourdieusian analysis of doctors’ antibiotic prescribing
Alex Broom, Jennifer Broom, and Emma Kirby
The prospect of an ‘antimicrobial perfect storm’ in the coming decades through the emergence and proliferation of multi-resistant organisms has become an urgent public health concern. With limited drug discovery solutions foreseeable in the immediate future, and with evidence that resistance can be ameliorated by optimisation of prescribing, focus currently centres on antibiotic use. In hospitals, this is manifest in the development of stewardship programs that aim to alter doctors’ prescribing behaviour. Yet, in many clinical contexts, doctors’ antibiotic prescribing continues to elude best practice. In this paper, drawing on qualitative interviews with 30 Australian hospital-based doctors in mid-2013, we draw on Bourdieu’s theory of practice to illustrate that ‘sub-optimal’ antibiotic prescribing is a logical choice within the habitus of the social world of the hospital. That is, the rules of the game within the field are heavily weighted in favour of the management of immediate clinical risks, reputation and concordance with peer practice vis-à-vis longer-term population consequences. Antimicrobial resistance is thus a principal of limited significance in the hospital. We conclude that understanding the habitus of the hospital and the logics underpinning practice is a critical step toward developing governance practices that can respond to clinically ‘sub-optimal’ antibiotic use.
Claudia Castañeda and Lucy Suchman
This article explores the resonating figures of primate, child, and robot in contemporary technoscientific corporealizations of the ‘almost human’. We take as our model (in)organism ‘Lucy the Robot Orangutan’, roboticist Steve Grand’s project to create an artificial life form with a mind of its own. One aspect of Lucy’s figuration by Grand, we argue, which ties her to Haraway’s analysis of the primate, is of the robot as a model for animal, and more specifically (or aspirationally) human, cognition. We follow the trope of ‘model organism’ as it is under discussion within science and technology studies and as an ironic descriptor for our own interest in Lucy as an entity/project through which to illuminate figurations within robotics more widely. Primate and robot together are forms of natureculture that help to clarify how the categories of animal and machine are entangled, while making explicit investments in their differences from one another, and from the third category of the human. We conclude, again following Haraway, by imagining what other possibilities there might be for figuring humans, robots, and their relations if we escape the reiterative imaginary of the robot as proxy for becoming human.
When mothers of preterm infants are unable to produce sufficient volumes of breastmilk, neonatologists in many Western countries prescribe pasteurized donor breastmilk. Breastmilk has a paradoxical presence in the neonatal intensive care unit: while it has therapeutic properties, it also has the potential to transmit disease. National health authorities and local neonatal intensive care unit policies each delimit the safety of donor milk by focusing on the presence or absence of pathogens. It is in this light that breastmilk from the human milk bank is both sought and legitimated to minimize safety concerns. This research uses data arising from an ethnographic study of two human milk banks and two neonatal intensive care units in the United States, and 73 interviews with milk donors, neonatal intensive care unit parents and clinicians. The primary research question framing the study was ‘What are the underlying processes and practices that have enabled donor milk to be endorsed as a safe and legitimate feeding option in neonatal intensive care units?’ This study is framed using three key principles of Latour’s ‘new critique’, namely, adding to reality rather than debunking it, getting closer to data rather than turning away from fact and creating arenas in which to assemble. As a result, conceptions of donor milk’s safety are expanded. This case study of donor milk demonstrates how Latour’s new critique can inform science and technology studies approaches to the study of safety in health care.
Science, Technology, Medicine – and the State: The Science-State Nexus in Scandinavia, 1850–1980 — A special issue of Science in Context by Aaron Seaman
The journal Science in Context currently has a special issue, entitled “Science, Technology, Medicine – and the State: The Science-State Nexus in Scandinavia, 1850–1980.” The abstracts for the introduction and articles are listed below:
Introduction: Science, Technology, Medicine – and the State: The Science-State Nexus in Scandinavia, 1850–1980
Kristin Asdal and Christoph Gradmann
One of the common characteristics of science, technology, and medicine is their ambition to epistemologically and organizationally move beyond the confines of nation states. In practice, however, they develop differently in countries or regions. Scientists, engineers, and physicians are constrained as well as enabled by national boundaries and specific cultures. The cultural status of such practices in reverse is influenced by a country’s history, politics, and the view of the role of science, technology, and medicine in society. It is the relation between a specific region, Scandinavia, and the history of science, technology, and medicine within this region that this issue of Science in Context sets out to explore. But what is this “Scandinavia”? To many, Scandinavia besides being a specific geographical region of three countries (Denmark, Sweden, and Norway) with entwined histories and closely related languages is a way of denoting a specific style or movement. “Scandinavian design” is renowned for three interrelated features; minimalism or simplicity, functionalism, and “design to the people” i.e. functional products for the average citizen (Beer 1975; Glambek 1997; Fallan 2012).
Since the 1970s, Danish population registries were increasingly used for research purposes, in particular in the health sciences. Linked with a large number of disease registries, these data infrastructures became laboratories for the development of both information technology and epidemiological studies. Denmark’s system of population registries had been centralized in 1924 and was further automated in the 1960s, with individual identification numbers (CPR-numbers) introduced in 1968. The ubiquitous presence of CPR-numbers in administrative routines and everyday lives created a continually growing data archive of the entire population. The resulting national-level database made possible unprecedented record linkage, a feature epidemiologists and biomedical scientists used as a resource for population health research. The specific assemblages that emerged with their practices of data mining were constitutive of registry-based epidemiology as a style of thought and of a distinct relationship between science, citizens, and the state that emerged as “Scandinavian.”
During the 1950s it became apparent that antibiotics could not conquer all microbes, and a series of tests were developed to assess the susceptibility of microbes to antibiotics. This article explores the development and standardization of one such testing procedure which became dominant in the Nordic region, and how the project eventually failed in the late 1970s. The standardization procedures amounted to a comprehensive scheme, standardizing not only the materials used, but also the methods and the interpretation of the results. Focusing on Sweden and Norway in particular, the article shows how this comprehensive standardization procedure accounted for several co-dependent factors and demanded collaboration within and across laboratories. Whereas literature on standardization has focused mostly on how facts and artefacts move within and across laboratories, I argue for the importance of also attending to regions and territories. More particularly, while arguing that the practices, ideals, and politics related to what have been called the “Nordic welfare state” were contributing to the design of the standardized procedure in the laboratory, I also argue that Scandinavia was drawn together as a unified region with and by these very same practices.
The Uppsala school in separation science, under the leadership of Nobel laureates, The (Theodor) Svedberg and Arne Tiselius, was by all counts a half-century-long success story. Chemists at the departments for physical chemistry and biochemistry produced a number of separation techniques that were widely adopted by the scientific community and in various technological applications. Success was also commercial and separation techniques, such as gel filtration, were an important factor behind the meteoric rise of the drug company Pharmacia from the 1950s. The paper focuses on the story behind the invention of gel filtration and the product Sephadex in the 1950s and the emergence of streamlined commercially oriented separation science as a main activity at the department of biochemistry in the 1960s. The dynamics of this development is analyzed from the perspectives of moral economy and storytelling framed by the larger question of the social construction of innovation. The latter point is addressed in a brief discussion about the uses of stories like the one about Sephadex in current research policy.
The Scandinavian countries share a solid reputation as longstanding contributors to top level Arctic research. This received view, however, veils some deep-seated contrasts in the ways that Sweden, Norway, and Denmark have conducted research in the Arctic and the North Atlantic. In this paper it is argued that instead of focusing on the geographical determinism of science – the fact that the Arctic is close to, indeed part of, Scandinavian territories – we should look more closely at the geopolitics of science to understand the differences and similarities between these three Nordic countries. Through case studies of, mainly, Swedish Arctic and North Atlantic glaciology in the 1920s through to the 1940s, and of Norwegian preparations in the 1950s for the International Geophysical Year 1957/58, the paper demonstrates how different styles of research – research agendas, methodological choices, collaborative patterns, international networks, availability of infrastructure, relations to politics and power – are conditioned on economic interests and strategic and geopolitical trajectories, either these are explicitly put in the forefront of scientific priorities as in the case of Norway in the 1950s, or when they are manifestly disregarded in the name of scientific internationalism, as in the case of Swedish glaciology. The case of Danish colonial science in Greenland is only cursorily drawn into this analysis but corroborates the overall thesis. The analysis of this wider science politics of Scandinavian circumpolar science is exercised against a brief introductory backdrop of Arctic science historiography. Its chief message is that the analysis of polar science applying modern theory and method of the social studies of science is comparatively recent and that the full potential of merging the literature of Arctic science and exploration with those of security, geopolitics, indigenous voices, and the politics of nationalism is yet to be realized.
At the turn of the twentieth century the Norwegian market flourished with milk products intended for infants. But medical doctors argued in favor of “going back to nature”: Women ought to breastfeed their children. This paper explores how a re-naturalization of mother’s milk emerged within experimental medicine. The prescribed “natural way” did not develop within medicine alone. The paper demonstrates how the natural developed within a relational space of different versions of milk: the free-market milk, the dirty and decaying milk, and the non-nutritional milk. But why did Norwegian mothers, in contrast to the development in for instance the US, continue to breastfeed their infants? Drawing on the work of the leading pediatrician Theodor Frølich, the paper suggests that this may in part be explained by the development of a distinct version of care: A matter-of-fact, pragmatic and flexible version of care that nevertheless came to enact mother’s milk as the supreme form of nutrition to which there was hardly a competing or healthy alternative. “The natural way” became a thought style and was made integral to everyday culture.
Building Transnational Bodies: Norway and the International Development of Laboratory Animal Science, ca. 1956–1980
Tone Druglitrø and Robert G. W. Kirk
This article adopts a historical perspective to examine the development of Laboratory Animal Science and Medicine, an auxiliary field which formed to facilitate the work of the biomedical sciences by systematically improving laboratory animal production, provision, and maintenance in the post Second World War period. We investigate how Laboratory Animal Science and Medicine co-developed at the local level (responding to national needs and concerns) yet was simultaneously transnational in orientation (responding to the scientific need that knowledge, practices, objects and animals circulate freely). Adapting the work of Tsing (2004), we argue that national differences provided the creative “friction” that helped drive the formation of Laboratory Animal Science and Medicine as a transnational endeavor. Our analysis engages with the themes of this special issue by focusing on the development of Laboratory Animal Science and Medicine in Norway, which both informed wider transnational developments and was formed by them. We show that Laboratory Animal Science and Medicine can only be properly understood from a spatial perspective; whilst it developed and was structured through national “centers,” its orientation was transnational necessitating international networks through which knowledge, practice, technologies, and animals circulated.
In the 1920s there were still very few fossil human remains to support an evolutionary explanation of human origins. Nonetheless, evolution as an explanatory framework was widely accepted. This led to a search for ancestors in several continents with fierce international competition. With so little fossil evidence available and the idea of a Missing Link as a crucial piece of evidence in human evolution still intact, many actors participated in the scientific race to identify the human ancestor. The curious case of Homo gardarensis serves as an example of how personal ambitions and national pride were deeply interconnected as scientific concerns were sometimes slighted in interwar palaeoanthropology.
This month’s web roundup will be the opportunity to talk about Narrative Medicine: the article The Art of Narrative Medicine, published by the blog of The AmericanResident Project states that “Over the past six years, narrative medicine and the physicians who have worked to enhance and promote its efficacy have gained traction within the mainstream health care system.”
Back in 2001, Dr Rita Charon of the Columbia University School of Medicine, maintained in an article in the Journal of the American Medical Association that “sick people need physicians who can understand their diseases, treat their medical problems and accompany them through their illnesses”. Dr Rita Charon strongly believed that “with narrative competence, physicians can reach and join their patients in illness, recognize their own personal journeys through medicine, acknowledge kinship with and duties toward other health care professionals, and inaugurate consequential discourse with the public about health care”. That’s why, according to The New York Times she proposed a Master of Science in Narrative Medicine at Columbia University in New York. The Master now exists and the answer to the question “Should physicians be encouraged to study narrative medicine in medical school? Is this a real benefit?” seems to be “yes“.
But what’s happening outside the U.S.? Narrative Based Medicine isn’t yet part of the regular medical practices, and it is still in quest of a legitimation; an important step has been the Second International Congress “Narrative Medicine and Rare Diseases” hosted in Rome from the 11th to the 13th of June.
At the end of the congress, the Jury states that “The narrative medicine (NBM) should be integrated with the Evidence Based Medicine (EBM): it is the integration of the patient narrations in the clinical practice - explains Sandro Spinsanti, major figure of medical humanities in Italy (biography, italian) – It is the element which allows the personalisation of the diagnosis and of the treatment and it improves the efficacy and the therapeutic adhesion; narrative medicine is a ‘tailored medicine’‘. The narration is a fundamental method to purchase, understand and integrate the different points of view of all the people involved in the illness and the treatment. The final goal is to co-build a personalised and shared path (story of treatment)”.
The program STORE is the next step in Europe to raise awareness on the importance of Narrative Based Medicine. The program wants to identify the effective practices of NBM and aims at forming a case history of th patients with their own story, so that patients will no longer be regarded as a “collection of symptoms and body parts, but as fully fledged human beings.”
This new approach implies that the healthcare provider should accompany the patient in the journey. The physician and writer Robert Coles states “The people who come to see us bring us their stories. They hope they tell them well enough so that we understand the truth of their lives. They hope we know how to interpret their stories correctly. We have to remember that what we hear is their story.”
In his article, “Creative Writing as a MedicalInstrument” he proposes that healthcare professionals should become story experts: they must think creatively, through the mind’s eye of a writer: “Story becomes the ground that patients and healthcare professionals travel together: an unpaved road, potholed and puddled, that often lacks signposts, that makes no great rescue promises. But it’s a meaningful journey where we will get muddy together”.
On the same subject :
Souchon, (Fiona) « L’approche narrative avec la personne atteinte du cancer » , (French)
DasGupta, (Sayantani) « Narrative Medicine, Narrative Humility – Listening to theStreams of Stories »
For this installment of Top of the heap we spoke to Elizabeth Watkins, Dean of the Graduate Division and Professor of the History of Health Sciences at the University of California, San Francisco.Elizabeth Watkins
David Healy, Pharmageddon (University of California Press, 2012)
Pharmageddon is a searing indictment of the pharmaceuticalization of American health care. David Healy decries the practices of the pharmaceutical industry, American laws and policies that encouraged the growth of Big Pharma, and the medical profession that allowed itself to be duped and co-opted by Big Pharma. He attributes the current state of affairs to three developments since the 1950s: changes in the system of drug patenting, which gave rise to blockbuster drug production and marketing; the classification of certain medications as prescription-only, making doctors the initial consumers to whom massive amounts of advertising are directed; and the appropriation of controlled trials by the pharmaceutical industry, resulting in the debasement of so-called evidence-based medicine. While there have been dozens of books published in the past decade on the problems caused by the pharmaceutical industry, Pharmageddon tackles broader issues of the medical-industrial-academic complex. While others have railed against ghostwriting of medical journal articles and the free pens, lunches, and golf vacations provided to doctors by drug companies, Healy exposes the defects in the foundation of the whole system of drug development, approval, marketing, prescription, and usage. His explanation of the flawed system of evidence-based medicine – from the concealment of raw data, to the publication of skewed interpretations of selected data, to the issuance of treatment guidelines by professional organizations that hamstring the practice of medicine by individual doctors – is masterful.
Dominique A. Tobbell, Pills, Power, and Policy: The Struggle for Drug Reform in Cold War America and Its Consequences (University of California Press, 2011)
Pills, Power, and Policy locates the history of pharmaceutical politics in the larger context of American society during the Cold War, especially the history of business, the history of higher education, and the history of medicine. More specifically, it examines the history of government efforts, dating back to the 1950s, to regulate drug development, drug distribution, and drug pricing and the pharmaceutical industry’s mostly successful efforts to resist these reforms or to influence them to suit its own interests. The book describes how the pharmaceutical industry forged intellectual and economic alliances with physicians and researchers at academic medical centers and how this industrial-academic complex wielded its influence over pharmaceutical policy in the second half of the 20th and into the 21st century. Dominique Tobbell argues that the industry’s co-optation of physicians, scientists, and government officials was “mutually conceived and mutually beneficial” in that the common intellectual, political, and financial interests of drug companies, academic institutions, and the medical profession structured the drug industry’s relationship with the federal government and restricted legislative reform of pharmaceutical policy.
Robert N. Proctor, Golden Holocaust: Origins of the Cigarette Catastrophe and the Case for Abolition (University of California Press, 2011)
Golden Holocaust is an exposé of how the tobacco industry and its partners (e.g., advertising agencies, public relations firm, lawyers) made smoking an integral part of human culture, society, economics, and politics, how they conspired to deny the dangers of smoking, and how they perpetuated this fraud and deception for half a century. Based on the on-line archive of more than 60 million pages of documents released by the tobacco industry in response to subpoenas, the book is truly a tour de force. Robert Proctor has marshaled his immense talents as a historian of science and as a writer, so that in spite of its daunting length (over 700 pages), the book is a convincing polemic and a compelling read. To describe Golden Holocaust as comprehensive and thorough would almost be an understatement. Proctor leaves no stone unturned, no list incomplete, no argument unsubstantiated. The wealth of detail serves to reinforce his thesis; it also provides a fascinating historical tour through the material culture of American and European life in the 20th century.
Nancy Langston, Toxic Bodies: Hormone Disruptors and the Legacy of DES (Yale University Press, 2010)
Toxic Bodies tells the compelling story of the development and uses of diethylstilbestrol (DES) and other hormone disruptors in medicine and agriculture, their wide distribution throughout the ecosystem, and their devastating effects on human bodies. Drawing on a wealth of primary documents and secondary sources, Nancy Langston argues that important lessons must be learned from the DES story. First, the parallels between DES and other endocrine disruptors lay bare the importance of acknowledging the significance of animal experiments for human health, the porosity of boundaries between the natural and the synthetic, the risks of low levels of exposure to chemicals, and the influence of the environment on the developing fetus. Second, and more generally, DES reveals the danger of using scientific uncertainty to justify regulatory inaction. Industry-sponsored research was designed to communicate controversy and contributed to the failure of the FDA to appropriately regulate the use of DES. Finally, progress must not be allowed to trump precaution; enthusiasm for medical and agricultural application of technologies must be tempered by regulations to protect public health and the environment. Langston wields history as a tool for advocacy and encourages fellow scholars to provide counter narratives to those told by powerful industries. Toxic Bodies presents a powerful argument against unrestrained market forces and in favor of strong and effective federal regulation of American industry. Although neoliberals might not be persuaded, I certainly was.
Elizabeth Watkins, PhD, is Dean of the Graduate Division, Vice Chancellor of Student Academic Affairs, and Professor of History of Health Sciences at the University of California, San Francisco. She earned her BA degree in biology and her PhD degree in history of science, both at Harvard University. She is the author of On the Pill: A Social History of Oral Contraceptives and The Estrogen Elixir: A History of Hormone Replacement Therapy in America and co-editor of Medicating Modern America: A History of Prescription Drugs and Prescribed: Writing, Filling, Using, and Abusing the Prescription in Modern America. She has also published articles on the history of birth control, the history of male menopause and testosterone, and the history of stress. Her work has been funded by the National Endowment for the Humanities, the NIH/National Library of Medicine, the National Academy of Education, the National Science Foundation, and the University of California President’s Research Fellowship in the Humanities. She continues to supervise PhD students who are writing dissertations on the history of health sciences at UCSF.
Image: Thorazine advertisement, 1962; Psychosomatics, Vol. 3, No. 2. Source.
University of California Press, 2014, paperback, 236 pages.
The Transplant Imaginary continues Lesley Sharp’s project on the anthropology of organ transplantation, building from her two previous monographs Strange Harvest (2006) and Bodies Commodities, and Biotechnologies (2007). This latest work spans five Anglophone countries (U.S. Canada, New Zealand, U.K., and Australia) and relays her cumulative findings from years of field research. It highlights two major areas of transplant science: xenotransplantation (or xeno) and biomechanical engineering (or bioengineering). Xeno entails the transfer of cells/organs from one species to another with the future goal of making animal to human transfer possible, whereas bioengineering’s primary goal is fashioning artificial organs or devices that serve as substitutes for organ function. Sharp describes these arenas of transplant medicine as shot through with the “experimental ethos” (2014: 3). At the same time they are informed by “moral convictions” that come to the fore in the pursuit of scientific creativity and invention (2014: 4). In other words, they are rife with imagination and unpredictability, invested in future possibilities for technological innovations that may only be realized long after present scientists’ lifetimes. This interplay between feasibility and imagination is characteristic of highly experimental realms, not only in medicine. In this respect, the book functions in conversation with other works on laboratory settings.
Sharp’s approach is resonant with Karen Knorr-Cetina’s Epistemic Cultures, a study of knowledge production in high energy physics and molecular biology labs, in its teasing out of epistemic particularities through comparison (1999). Likewise, Sharp juxtaposes two different domains of scientific experimentation (Xeno and bioengineering). She outlines how different trajectories of moral thinking develop. She also demonstrates how these two domains overlap in their shared concerns—namely in the hope to eliminate the problem of organ scarcity in transplant medicine. These experimental scientists believe their work represents a move toward bypassing the present shortage of human donors. From their position, this work avoids the problems associated with public reluctance to using cadaveric donors, including next-of-kin fears related to violating the dead or other ideological objections. They also see the possibility of breeding animals on a large scale for transplant purposes, or the easily personalized production of artificial devices as ways to the cut through health care access differentials that vex the current organ transplantation system. Such changes would lower prohibitive costs and rectify the inequalities particular to factors like age, race, and organ size. Drawing from these potentialities, xeno and bioengineering scientists often view the intended products of their work as “value free” and “morally superior”(14). In order to unpack this moral positioning, Sharp’s analysis remains squarely focused on the activities of scientists. The aim in doing so is to “encourage a fresh sensitivity to the significance of experimental work” (18). Yet the bigger question that she seeks to tackle is: “How might we shift the frame of reference such that discussions become less about how we must pursue these experimental forms of body repair and more about why we insist this must be so?” (18).
Through the introduction and Chapter 1, Sharp situates her analysis amidst four major strands of thought: (1) an examination of negotiations of knowledge-making and tinkering, a staple of science and technology studies (STS); (2) a growing interdisciplinary interest in multi-species studies and hybrid subjectivity; (3) medical anthropology’s engagements with the “biotechnical embrace” (DelVecchio-Good 2007) and (4) the “ethical turn” in anthropology more broadly. Sharp deftly weaves these conceptual strands together, managing to convey the rich detail of the scientific work while retaining legibility for those less-versed in its technical language. Incorporating these four major areas of scholarship enables Sharp to contextualize the central issues that haunt moral thinking in these two foci of experimental transplant science. These include the distinction between (bio)ethics and morality, especially in relation to suffering (both human and animal) and the negotiation of bodily integrity. She also devotes considerable thought to how imagined futures and the temporal frame of the longue durée inform the moral thinking of xeno scientists and bioengineers who work in anticipatory science.
Chapter 2 traces the particularities of xenotransplantation. Sharp examines how scientists gauge proximity to the species they are using (e.g. how closely a pig’s organ approximates a human’s). This gauging affects the clinical applicability of using porcine parts for human patients, for instance. This chapter also shows the tension between two competing time frames: the slow methodical development of experimental science versus the quick turnaround that venture capitalist investors expect. In one notable example, Sharp recounts an incident in 1995 at XenoLife, an experimental lab based in the U.K. After showing signs of good results using primates as test recipients for xeno, there was an increase in financial pressure from investors to move to human trials. This eventually drove XenoLife scientists to run through the entire available supply of laboratory rhesus macaques in the U.K., and they proceeded to exhaust the European supply afterwards. Ultimately, this even lead to company attempts at obtaining baboons from East Africa, locally viewed as disposable “pests.” These desperate measures taken to achieve profitable results at huge animal expense met with public backlash. The incident was a crucial factor that led to a shift in the parameters in which xeno scientists are able to do their work (2014: 76-77). As such, the current trend is to do xeno work at the molecular level rather than using scores of animal test subjects. Such moral valences about animals’ lives have also affected the ways that certain species become “naturalized.” Sharp builds on prior understandings of naturalization in terms of citizenship, looking at the ways that species have taken on different valences with respect to how other (mostly porcine and simian) species serve as suitable proxies for natural or natal organs. Via the lab, they are fashioned in such a way as to no longer be seen as foreign to the human body. As this chapter demonstrates, the determination of which species undergo naturalization processes directly relates to the particular goals of experimentation as well as the moral thinking that undergirds it.
Chapter 3 opens with a description of bioengineering’s own tendency to honor pioneering heroes in the field. Bioengineers often tell stories of their scientific forbearers and can trace their scientific genealogies. Paralleling this biographic aesthetic, this chapter contains the richest ethnographic detail with respect to specific people who populate Sharp’s multi-sited research. She lays out an illustrative slate of personal stories. It is also where she most attends to the generational, gendered, and ethnic differences of those in the bioengineering field (and science and engineering more generally). These differences inform the work that they do and grounds some of the principles that guide them. She also includes a discussion of how bioengineers have interspecies interactions that differ from xeno, notably in forging more sentimental attachments to the animals often giving playful names to their test subjects. Affectionate monikers like “Blimpy” or “The Champ” highlight another way in which bioengineering is inflected with elements of personalization. This makes it a particularly useful chapter for understanding how the circulation of biographies (as well as their elisions) affect the agendas of experimentation. Sharp also compellingly draws this in contrast to the ways that patient suffering and certain bodies, especially women’s bodies (123-125), are often erased or absent from bioengineering (132).
Returning to a more theoretical focus, Chapter 4 deals with temporality. One of Sharp’s crucial points is how scientists in both domains employ the strategy of bringing both human and animal bodies and/or suffering to the fore at some moments, while at others they completely fall out of the picture. In both domains, scientists have very little contact with patients. This limited interaction makes the consideration of suffering (or altered post-procedure subjectivity) all the more notable when it arises. The range of moral considerations are, as Sharp asserts throughout the book, informed by the “temporal gymnastics” they perform. Emphasis on the longue durée of experimentation and eventual alleviation of suffering (especially in eliminating organ scarcity) exemplify the sort of moral thinking that highly experimental transplant science exhibits. Bioethical standards set the boundaries of what should and should not be done in the lab. In contrast, moral thinking incites the imagination of what is possible, and it is this futuristic hope that drives ingenuity and invention. Sharp demonstrates the paradox that the scientists themselves shy away from explicit discussions of morality even though moral reasoning greatly informs their work. The harsh realities of biocapital and profit-making, public perceptions, and available resources also temper the kinds of moral thinking that shape the aspirations and desires of transplant scientists.
Sharp’s insistence on ethnography as the best method for tracing the open-ended processes of moral thinking puts the spotlight on the importance of understanding the ways that morality unfolds in everyday practices. This allows for scientists to hold seemingly contradictory tenets. They deal with the present suffering of experimental human and animal subjects, and the failures of experimental procedures in relation to the hope in the potentially widespread alleviation of suffering that experimental success may yield. In their day-to-day uses they cobble together these different temporal frames and incongruent moral values; a means for navigating moral confusion that arises in a multitude of imagined possibilities. This kind of disarray actually offers us the most fruitful instances of seeing moral thinking in process before it crystallizes.
The Transplant Imaginary is an important contribution for those who follow anthropological literature on transplantation from one of the most eminent scholars working on the topic. It also encourages an in-depth look at the processes of moral thinking, extending beyond staid conceptions of (bio)ethics that are tied to legal frameworks. The book serves as a powerful reminder of the value of describing and analyzing experimental scientific endeavors. The analysis opens up discussions about how morality develops and is creatively shaped. This work also shows how different parties clash and collaborate in experimental science — scientists, activists and venture capitalists, among other medical stakeholders – to profoundly influence research agendas and the lives of humans and other species.
Emily Avera is a graduate student in the doctoral program in Anthropology at Brown University and an IGERT fellow in the Graduate Program in Development at the Watson Institute for International Studies. Her current research is on bone marrow stem cell transplantation, its related advocacy, and donor outreach in South Africa. She has also conducted research on transplant medical professionals and bioethics in the Netherlands. Her other interests include global health, immunology, race and ethnicity, and science and technology studies (STS).
DelVecchio Good, Mary-Jo. 2007. “The Biotechnical Embrace and the Medical Imaginary.” In Subjectivity: Ethnographic Investigations, edited by J. Biehl, B. Good, and A. Kleinman, 362-80. Berkeley: University of California Press.
Knorr Cetina, Karen. 1999. Epistemic Cultures: How the Sciences Make Knowledge. Cambridge: Harvard University Press.
Sharp, Lesley A. 2006 Strange Harvest: Organ Transplants, Denatured Bodies, and the Transformed Self. Berkeley and Los Angeles: University of California Press.
_____. 2007. Bodies Commodities, and Biotechnologies: Death Mourning, and Scientific Desire in the Realm of Human Organ Transfer. New York: Columbia University Press.
_____. 2014. The Transplant Imaginary: Mechanical Heats, Animal Parts, and Moral Thinking in Highly Experimental Science. Berkeley and Los Angeles: University of California Press.
In a special section of their newest issue, entitled “Epidemic Events and Processes,” the journal Cambridge Anthropology presents a series of articles and commentary arising from the 2013 conference ‘Epidemic Crisis: Dialectics of Event and Process,’ which was held at the Centre for Research in the Arts, Social Sciences and Humanities (CRASSH), Cambridge. In his introduction, conference organizer Christos Lynteris writes:
This special section of the journal hosts five anthropological articles on epidemics and epidemiology and a response by a world-leading epidemiologist. Rather than simply providing more case studies of infectious disease outbreaks or prevention and containment measures, however, these articles respond to an analytical question that has remained neglected in medical anthropology and the medical humanities as a whole: what is the relation between the epidemiological reality of outbreaks as conditioned by long-term social, political, economic, demographic and ecological factors, and the empirical reality of outbreaks as ruptures of the social, political and economic continuum?
Introduction: The Time of Epidemics
The introduction to this special section of the journal argues that while it is widely accepted today that infectious disease epidemics are the result of long-term and complex social, ecological, economic and political processes, outbreaks are, more often than not, experienced on the ground as unexpected eruptions. This introduction defends the position that the dialectics between the evental and processual aspects of epidemics are good to think with anthropologically, and points to the consequences of this for an analysis of epidemic temporality in the context of emergent infectious disease discourse and intensifying biopolitical surveillance aimed at averting the ‘next pandemic’.
The main concern of this article is with the ways in which technologies of data-mining and crowd-sourcing have made it possible for citizens to contribute to the expansion of infectious disease surveillance as both a concrete practice and a compelling fantasy. But I am less interested in participation as such, and more concerned with the epistemological effects that this technological mediation might have for the possibility of epidemic events to become shared objects of knowledge. What happens with epidemic events when they become targets of data-mining and crowd-sourcing technologies?
This article discusses Paul Rabinow’s notion of ‘form/event’ in the light of the current management of Avian Influenza in Hong Kong. While this notion allows the study of how life sciences produce events by turning scarcity of material into abundance of information, Paul Rabinow applied it to the scene of biotechnologies where values about life are suspended in what he calls purgatory. I suggest that, for the anticipation of epidemics from the animal reservoir, the form/event is not a suspension of values but a communication by signs in what I call, following Hong Kong microbiologists, a sentinel. Moving from purgatory to sentinel in the field of biosecurity opens a plurality of scales at which events happen, and transforms the model of subjectivity, from pastoral care to hunting relationships. This theoretical shift sheds light on the ethnography of Avian Flu in Hong Kong, where birdwatchers have allied with microbiologists to practise animal surveillance.
This article draws on Alain Badiou’s notion of the event and on Michel Foucault’s critique of the notion of crisis in comparing two pneumonic plague outbreaks in Manchuria. It is argued that the two epidemics, although apparently involving the same pathogen and geographical region, cannot be treated as analogous. The article approaches the Manchurian pneumonic plague epidemic of 1910–11 as an event, and the Manchurian pneumonic plague epidemic of 1920–21 as a crisis, stressing that the crucial difference between the two lies with the way in which they produced and reproduced biopolitical subjects.
Epidemic Projectification: AIDS Responses in Uganda as Event and Process
Lotte Meinert and Susan Reynolds Whyte
This article explores the responses to the AIDS epidemic in Uganda as events and processes of projectification. AIDS projects became epidemic. Prevention and treatment projects supported by outside donors spread to an extent that made it hard for some to see the role of the Ugandan state and health-care system. We describe the projectified AIDS landscape in Uganda as projects make themselves present in the life of our interlocutors. We argue that the response in Uganda was syndemic; many different factors worked together to make an effect, and the epidemic of responses did not undermine the Ugandan state but played a crucial part in rebuilding the nation after decades of civil war. A problematic consequence of the projectified emergency response to epidemics such as HIV/AIDS, which is a long-wave event, is that projects have a limited time frame, and can be scaled down or withdrawn depending on political commitment.
Directly Observed Treatment – Short-course (DOTS) has been promoted by the WHO globally as the preferred standard approach to tuberculosis control and treatment since the mid 1990s. In India, DOTS has been gradually implemented as a national programme since 1997, covering the entire country by 2006. DOTS is a highly complex healthcare intervention that involves universal monitoring of all patients, access to high quality drugs and the adoption of an individually supervised drug intake by patients through a system of DOT-providers. This article discusses the gradual implementation of DOTS in India as an intervention based on politically agreed ‘truths’ that create ‘successful treatment stories’ and ‘defaulters’, and it explores dimensions of temporality linked to the understanding of ‘event’ at different ontological scales from the perspectives of ‘defaulters’ and the health care system respectively.
Evidence-based Activism: Patients’, Users’ and Activists’ Groups in Knowledge Society
Vololona Rabeharisoa, Tiago Moreira, and Madeleine Akrich
This article proposes the notion of ‘evidence-based activism’ to capture patients’ and health activists’ groups’ focus on knowledge production and knowledge mobilisation in the governance of health issues. It introduces empirical data and analysis on groups active in four countries (France, Ireland, Portugal and the United Kingdom), and in four condition-areas (rare diseases, Alzheimer’s disease, ADHD – Attention Deficit Hyperactivity Disorder and childbirth). It shows how these groups engage with, and articulate a variety of credentialed knowledge and ‘experiential knowledge’ with a view to explore concerned people’s situations, to make themselves part and parcel of the networks of expertise on their conditions in their national contexts, and to elaborate evidence on the issues they deem important to address both at an individual and at a collective level. This article argues that in contrast to health movements which contest institutions from the outside, patients’ and activists’ groups which embrace ‘evidence-based activism’ work ‘from within’ to imagine new epistemic and political appraisal of their causes and conditions. ‘Evidence-based activism’ entails a collective inquiry associating patients/activists and specialists/professionals in the conjoint fabrics of scientific statements and political claims. From a conceptual standpoint, ‘evidence-based activism’ sheds light on the ongoing co-production of matters of fact and matters of concern in contemporary technological democracies.
Attention Deficit Hyperactivity Disorder in France and Ireland: Parents’ Groups’ Scientific and Political Framing of an Unsettled Condition
Claire Edwards, Etaoine Howlett, Madeleine Akrich, and Vololona Rabeharisoa
Attention Deficit Hyperactivity Disorder (ADHD) is an unsettled condition whose history is characterised by controversy among medical professionals. Its emergence has frequently been interpreted as an example of the growing ‘medicalisation’ of society and the individualisation of social issues. This article examines how groups representing children with ADHD in France and Ireland engage within this contested medical domain to develop different politics of knowledge around the disorder which become visible in their ‘epistemic efforts’. These efforts emerge from, and enact, groups’ understandings of ADHD as a condition, and frame their development of a politics of healthcare as a basis for articulating claims to appropriate services and treatment. We show how, in Ireland, organisations remain committed to a biomedical approach to ADHD, although their practical efforts are oriented towards complementing medication with non-pharmaceutical treatments. In France, the key parents’ group opposes any paradigm that focuses exclusively on one aspect of the disorder, be it social, psychological or neurological; rather, it struggles to ‘open up’ the scientific domain of ADHD. Our empirical material therefore enables us to demonstrate patients’ organisations’ politics of knowledge as situated practices which aim to reshape the different networks of expertise on ADHD that exist in each country, and to explore medicalisation as a complex set of processes which is neither a solution to parents’ problems, nor an end point for their actions.
Assembling Dementia Care: Patient Organisations and Social Research
Riago Moreira, Orla O’Donovan, and Etaoine Howlett
In this article, we take the concept of evidence-based activism as a point of departure to understand how Alzheimer’s disease (AD) associations have mobilised knowledge to re-articulate their role in the public sphere. We are specifically interested in political initiatives deployed by these organisations to shape the field of dementia care research, policy and practice in the last 5 years in the United Kingdom and Ireland. In both countries, the campaigns have emphasised the importance of developing and funding services and devices that mediate between the formal and the informal sectors of dementia care in order to support people living with dementia to stay at home for longer. Drawing on our analysis of documentary and interview data, our suggestion is that the transformation of dementia care into a ‘matter of concern’ is underpinned by AD organisations’ harnessing, fostering, sponsoring and circulating of social research conventions and methodologies such as the survey or the interview. Our main claim is that social scientific techniques and ways of reasoning have been key in the production and maintenance of boundary relations between informal and formal care in dementia. Our work can thus be seen as integrated in a renewed interest in understanding the epistemic cultures of social research and its relationship with political institutions of contemporary societies.
From ‘Politics of Numbers’ to ‘Politics of Singularisation’: Patients’ Activism and Engagement in Research on Rare Diseases in France and Portugal
Vololona Rabeharisoa, Michel Callon, Angela Marques Filipe, João Arriscado Nunes, Florence Paterson, and Frédéric Vergnaud
This article investigates how the engagement of patients’ organisations (POs) in research relates to the dynamics of their activism in the area of rare diseases. It traces back how certain concerned families and groups elaborated rareness as an issue of equity and social justice, gave shape to what we call a ‘politics of numbers’ for stating the fact of rare diseases as a major public health problem, and promoted patients’ critical involvement in biomedical and therapeutic research as a solution for mainstreaming rare diseases in regular health systems. It then studies three Portuguese and three French POs, which point to the limits of the epidemiological notion of rareness for capturing the compounded and intersecting nature of the bio-psycho-social make-up of their conditions. It finally shows how these critics progressively lead to the emergence of an alternative politics, which we call a ‘politics of singularisation’. At the core of this politics stands a collective and ongoing profiling of conditions and patients, whose similarities and differences relates to the ubiquity of biological pathways and diseases categories. Our contention is that this ‘politics of singularisation’ not only pictures a politics of illnesses which questions the rationale for nosological classifications, but also, and consequently, affects the making of social links by suggesting the simultaneous identification of individual patients and constitution of collectives to which they partake while asserting their specificities.
I use the collection of “carnal ethnographies” of martial arts and combat sports assembled by Raul Sanchez and Dale Spencer under the title Fighting Scholars to spotlight the fruitfulness of deploying habitus as both empirical object (explanandum) and method of inquiry (modus cognitionis). The incarnate study of incarnation supports five propositions that clear up tenacious misconceptions about habitus and bolster Bourdieu’s dispositional theory of action: (1) far from being a “black box,” habitus is fully amenable to empirical inquiry; (2) the distinction between primary (generic) and secondary (specific) habitus enables us to capture the malleability of dispositions; (3) habitus is composed of cognitive, conative and affective elements: categories, skills, and desires; (4) habitus allows us to turn carnality from problem to resource for the production of sociological knowledge; and (5) thus to realize that all social agents are, like martial artists, suffering beings collectively engaged in embodied activities staged inside circles of shared commitments.
Embodied Relationality and Caring after Death
Jane Ribbens McCarthy and Raia Prokhovnik
We explore contested meanings around care and relationality through the under-explored case of caring after death, throwing the relational significance of ‘bodies’ into sharp relief. While the dominant social imaginary and forms of knowledge production in many affluent western societies take death to signify an absolute loss of the other in the demise of their physical body, important implications follow from recognising that embodied relational experience can continue after death. Drawing on a model of embodied relational care encompassing a ‘me’, a ‘you’ and an ‘us’, we argue that after death ‘me’ and ‘us’ remain (though changed) while crucial dimensions of ‘you’ persist too. In unravelling the binary divide between living and dead bodies, other related dichotomies of mind/body, self/other, internal/external, and nature/social are also called into question, extending debates concerning relationality and openness between living bodies. Through an exploration of autobiographical accounts and empirical research, we argue that embodied relationality expresses how connectedness is lived out after death in material practices and felt experiences.
Masturbation is a neglected topic in debates around biopower and biopolitics. This article takes Michel Foucault’s recasting of the idea of a regulatory, population-level form of biopower in terms of ‘mechanisms of security’ as its starting point for an investigation into the ways in which bodies enter into and are reshaped by biopolitical discourses on masturbation. While the notion of security faded from view in favour of Foucault’s better known focus on governmentality, this article argues that there is value in recovering the concept of security in the context of a genealogy of modern bodies. Specifically, it explores the possibility that a biopolitical perspective on security operates not only above, but also below the disciplining of individual masturbating bodies. The article proceeds, initially, via an examination of contemporary studies of masturbation, arguing that they largely neglect the material dynamism of bodies. The main focus, however, is on rereading some of the key works in the historical anti-masturbation literature from a complexity perspective. It is shown that these texts engage with a ‘population’ of vital forces and affects that must be regulated if life is to remain secure, and which circulate below the level of individual bodies in relation to a complex milieu. Finally, the article claims that men’s bodies appear as crucial sites of biopolitics, and that normative forms of masculinity can be regarded as interventions into embodiment that are designed to nullify or regulate complexity.
Corporeality, Sadomasochism and Sexual Trauma
Work in body studies and theories of affect challenge the mind/body dualism where human action/behavior is shown to be an embodied, lived event. More specifically, bodily practices not only inform/shape human subjectivity but convey what language—words—often cannot. BDSM is one such practice that illuminates embodied subjectivities, where the flesh proves pivotal to one’s orientation to/with the world. In this article I explore women BDSMers who, as survivors of sexual violence, engage in BDSM rape play. BDSM rape play foregrounds the flesh, exemplifying quite powerfully “bodily capacity,” one where bodily disintegration that occurred with the sexual assault is disrupted through bodily recuperation. This felt experience—the body as the source of insight—carries considerable weight, and should inform our thinking when it comes to feminist explorations of sexuality and those contentious and controversial practices such as BDSM.
This issue also included a special section of responses to Loïc Wacquant’s piece, Homines in Extremes, which included pieces by Hélène Mialet, Elise Paradis, Nick Crossley, and Greg Downey, as well as a final commentary by Wacquant.
Both written under pseudonym, Constance Newland’s My Self and I (1962) and Jane Dunlap’s Exploring Inner Space (1961) are firsthand accounts of psychedelic drug use taken in therapeutic research settings that demonstrate how women’s access to discursive legitimacy was negotiated in mid-twentieth-century life-writing. Newland and Dunlap use realism to connect readers to their psychedelic subjects, while estranging readers’ familiar worldviews through metaphor. Through reader recognition and estrangement, Newland and Dunlap develop readers’ empathy as a reformist tool to challenge standard narratives of literature and science and carve out new representational space for alternative states of consciousness.
This essay argues that breast cancer prognosis potentially produces a dialectic in which the subject is compelled to perceive the body as vulnerable and separate (alien) to the self and that the treatments required make the body more vulnerable and more alien, and that this is held in tension with the fact that the very alienation and heightened vulnerability of the body in breast cancer treatment are productive. Such alienation and vulnerability collapse the boundaries through which the body and self are understood, often demand a conscious intimacy of/with the body, and point to critical enactments and understandings of embodied subjectivity.
This month’s Culture, Medicine, and Psyciatry is a special issue on Humanness and Modern Psychotropy, featured by Somatoshere here.
Focusing on the changing relationships among the state, civil society, and science and technology (S&T) in contemporary Korean history, this article reviews the literature of science and technology studies on the politics of technoscience in South Korea. Arguing that the active role of the state in developing S&T is a defining characteristic of Korean S&T, this article first reviews the statist approaches to S&T, where the politics of technoscience involves mainly policy decisions. Then, by reviewing work on the role of nationalism in Korean technoscience, this article discusses the literature with attention to the reciprocal relationships between technoscience and political power mediated by the nationalist view of S&T. Next, this article evaluates the literature on the Biosafety and Bioethics Act, with emphasis on the interactions among diverse actors, nongovernmental organization activists in particular, in the legislative process. Finally, the literature on public participation and social movements in technoscience is discussed.
From Politics to Academics: Political Activism and the Emergence of Science and Technology Studies in South Korea
Mathieu Quet and Marianne Noel
Science and technology studies (STS) is now a mature field in many countries, and it is important to understand its historical and political roots in a wide variety of national contexts. The present contribution to such a vast project links a number of South Korean activist groups involved in a critical reflection upon science and technology in the 1970s and the 1980s to the academic developments of the STS field in the 1990s. A focus on the activist roots of South Korea’s STS counterbalances more institutional and less politicized histories of the field; it also enlightens the specificity of critical approaches to science in the context of an emerging power that was a military dictatorship. The authors describe how a group of students and professors, most of whom had been trained as scientists and engineers, created a discussion circle to foster a critical and political discourse on science. They then trace the emergence of the new field through the dissemination of texts and their reception. The academic aspects of Korean STS are then compared, over three periods, with similar currents in Europe and the United States. The conclusion shows that the critique of science that emerged in South Korea took a form substantially different from critiques elsewhere, linking this difference to political and institutional causes.
Toward an Anthropology of the Imaginary: Specters of Disability in Vietnam
Tine M. Gammeltoft
In this article, I discuss the analytical potential that the notion of the imaginary holds for anthropology as a concept that may capture some of the more subdued, yet socially vigorous, moods and sensations that hover where personal experience and socially salient forms of power merge. The ethnographic occasion for my inquiry is the eager uptake of new technologies for selective reproduction in Vietnam; technologies that are actively promoted by the party-state as an element in efforts to enhance “population quality.” Drawing on nearly three years of fieldwork conducted in Vietnam’s capital Hanoi, I frame selective reproduction as an issue of power and politics, investigating how people’s fantasies, fears, and imaginings blend with the workings of state power in this realm. Attention to imaginary constructions of self and society, I argue, can further anthropological understanding of the ways in which state policies are shaped, implemented, justified, and received.
In this article, I use the retelling of a dream experience from a Toraja elder to illustrate how cultural and psychodynamic factors combine and intertwine to mediate self-other and intraself relationships. I use the concept of “selfscapes” to suggest how dynamic, fluid, and contingent self-other distinctions often are but also to capture the perduring aspects of memory and self-organization that are sometimes lost or underemphasized by the strong focus on intersubjectivity in the social sciences today. My analysis builds on some of A. Irving Hallowell’s seminal ideas about how psychodynamic theories and concepts might be used to enrich and extend cultural phenomenological analysis.
Changing Cultural Pathways through Gender Role and Sexual Development: A Theoretical Framework
Adriana M. Manago, Patricia M. Greenfield, Janna L. Kim, and Monique Ward
Greenfield’s (2009) theory linking sociodemographic change to dynamic cultural values for family interdependence versus individual independence is applied to sexual and gender role socialization and development. The theory explains how cultural pathways for sexual and gender-role development transform in concert with sociodemographic changes: urbanization, formal schooling, capitalism, and communication technologies. As environments become more urban, commercial, and technological, with more opportunities for formal education, sexual development moves away from the ideals of procreation and family responsibility and toward the ideals of personal pleasure and personal responsibility. At the same time, gender-role development moves away from the ideals of complementary and ascribed gender roles and toward chosen and equal gender roles. We present psychological, anthropological, and sociological evidence for these trends in a variety of communities undergoing social and ecological change.
Cannabis, Risk and Normalisation: Evidence from a Canadian Study of Socially Integrated, Adult Cannabis Users
Cameron Duff and Patricia G. Erickson
Howard Parker’s ‘normalisation thesis’ has made a significant contribution to youth drug studies in many countries. Parker’s thesis has been less investigated, however, for its application across the life course, and few scholars have considered its utility for assessments of the meaning and experience of drug-related health risks. This article adds to discussions of drugs, normalisation and risk by analysing qualitative data collected from 165 long-term cannabis users aged 20–49 years in four Canadian provinces between 2008 and 2010. We focus on participants’ assessments of the risks and harms associated with persistent cannabis use and the strategies they employed to mitigate these risks. Our findings indicate important distinctions between culturally mediated conceptions of cannabis-related risks and the more narrowly grounded perception of cannabis harms based on personal or peer experience. These distinctions correspond with participants’ reports of a significant shift in cannabis’ risk profile in Canada. Participants attributed this shift to three factors: the growing prevalence of cannabis use; the rise of ‘medical marijuana’ and renewed attention to the drug’s therapeutic benefits and what they perceived to be the low incidence of cannabis-related harms in Canada. We conclude that understanding how health risks are assessed and managed by cannabis users should help to clarify how and why more tolerant attitudes about cannabis have emerged in Canada and how this change may impact on non-users’ expectations about any future initiation of use. We close by reflecting on the implications of our findings for cannabis-related public health, education and harm reduction initiatives.
In this article, we examine the ‘risk of knowing’ talk (Sarangi, S., et al., 2003. ‘Relatively speaking’: relativisation of genetic risk in counselling for predictive testing. Health, risk & society, 5 (2), 155–170, p. 155) in prenatal screening for Down’s syndrome in Hong Kong. The ‘risk of knowing’ talk refers to the consequences of learning about a health condition, such as the psychosocial and interpersonal implications of testing, and the subsequent management of the condition. The stigma of eugenics and that the termination of pregnancy is the only available ‘medical intervention’ imply that the risk talk and decision-making in prenatal screening carry serious ethical, moral and social implications (Pilnick, A. and Zayts, O.A, 2012. ‘Let’s have it tested first’: choice and circumstances in decision-making following positive antenatal screening in Hong Kong. Sociology of health and illness, 34 (2), 266–282). This issue has not attracted much attention in the previous literature. This study is part of a larger project on prenatal screening conducted in one Prenatal Diagnostics and Counselling Department of a Hong Kong hospital in 2006–2013. It draws on 20 video-recorded consultations with pregnant women who had received a ‘positive’ (high risk) screening result and were invited to consider further diagnostic testing. Using theme-oriented discourse analysis (Roberts, C. and Sarangi, S., 2005. Theme-oriented discourse analysis of medical encounters. Medical education, 39 (6), 632–640), we show that in these consultations, the ‘risk of knowing’ talk was not initiated by the health care professionals. It might, however, be evoked by the women. We examine the impact of the ‘risk of knowing’ on decision-making, and discuss specific discourse (linguistic and rhetorical) devices that the participants employed to negotiate three competing agendas: the health care professionals’ preference of diagnostic testing, clients’ concerns of having a baby with Down’s syndrome and the overarching professional goal of these encounters of facilitating the clients’ informed choice regarding further testing.
This article compares funeral laments in a Tibeto-Burman-speaking community in Yunnan, China, from two periods: the early 1990s, after ritual revitalization was thoroughly underway, and 2011, after this community had come into more intimate contact with the modernity-obsessed cultures of urban and semi-urban China. Laments fashion grief in a public setting by conceptualizing the dead and their relations with the living in vivid poetic language. Laments from the early 1990s described these relations as a circuit of suffering, in which children returned a debt of suffering they owed their parents after the latter’s deaths. By 2011, innovative lamenters had reorientated their understanding of suffering to be personal, internal, and intimate. The dead became more ‘modern’, allowing the living, defined largely by their relations with the dead, to participate in ‘modernized’ forms of authentic, sincere emotional expression.
The concept of ‘relation’ has been central to the anthropological reworking of the nature/culture and nature/society dichotomies. However, ecology is relational in a way that has often been ignored or dismissed in contemporary socio-cultural anthropology. This article shows that there is more to ethnoecology than an ethnocentric form of analysis representing other people’s understandings of the natural world through the prejudiced lens of Western scientific classifications. Three ‘fieldwork on fieldwork’ experiments involving encounters between natural scientists and indigenous communities in Amazonian Ecuador and Southern Guyana are discussed to illustrate the heterogeneity of human knowledge, the role of expert knowledge in intercultural communication, and the need to differentiate ecological reasoning from moral reasoning.
There are, I believe, a few reasons to suppose that autism is a particularly fascinating area to be studying at the moment. What are those reasons? Firstly, prevalence rates of autism have soared in recent decades, from 1:2,500 in 1978 to around 1:100 today: a staggering 25-fold increase. Secondly, and simultaneously, the nature of those receiving a diagnosis of autism has changed considerably. To give just one example, in the 1980s no more than twenty percent of individuals diagnosed with autism had an I.Q. above 80. Today, by contrast, it is widely argued that “intellectual disability is not part of the broader autism phenotype…[and] the association between extreme autistic traits and intellectual disability is only modest” (Hoekstra et al. 2009: 534). Whatever you make of I.Q. scores, this changing profile means that it is reasonable to assume that when you meet somebody with autism today they are quite unlikely to be similar to someone you would’ve met with the same diagnosis just thirty years ago. Thirdly, as the number of people diagnosed with autism has increased, and as the capabilities of those individuals has increased, a (self-)advocacy network of enormous importance and influence has arisen, perhaps on a scale hitherto unseen. When woven together, these dynamic elements have led Ian Hacking to claim that, in autism, “we are participating in a living experiment in concept formation of a sort that does not come more than once in a dozen lifetimes” (Hacking 2009: 506). This, I think, is quite exciting.
Finally, and perhaps differently, over the past thirty years autism has become an all pervasive cultural experience. ‘Autistic fiction’, for example, has become a recognised genre. And when I talk of ‘autism fiction’, think not only of Rain Man and The Curious Incident of the Dog in the Night-Time but of all those times that autism is used as a ‘prop’ or ‘prosthetic device’ to explore humanity in toto (Murray 2008: 163). Just last week I found myself watching The Machine, a dystopian film in which badly brain damaged war veterans have computer chips implanted into their brains with the aim of allowing them to return to ‘normal functioning’ (read: become super-soldiers). As you might imagine, this experiment does not end well. What I find particularly interesting, however, is the manner in which these scientists come to realise that these militarised cyborgs are less than human: they fail the Sally-Anne Test, one of the oldest psychological tests for autism. “Facts are just facts” says Paul the cyborg, unable to grasp that the world could appear different to a second person. And so it is within The Machine: as with a great deal of fiction (and, as I’ll argue below, within particular academic disciplines) what is missing in autism is taken to reveal something fundamental about what needs to be present in order to be human.
How did this situation occur? How did autism which, until quite recently, was an unusual diagnosis of little broader concern, come to hold a central place in debates over human nature? That’s what I’d like to think about in this essay. My argument, in short, is that the thing which is ‘missing’ in autism, crudely put, is assumed to be social functioning and this is crucial when it comes to understanding why autism is taken to be so important for the human.
Re-constructing the social
Those working in disciplines such as science and technology studies and anthropology are used to debates over the nature of ‘the social’. It is perhaps more surprising, however, to find that the experimental human sciences have engaged in similar debates (see, Danziger (2000) for an overview). Consider someone praying, alone, in front of an altar. Is this a social behaviour? Most psychologists working before 1950, certainly 1920, would probably have answered ‘yes’; the activity is demonstrably being shaped by, and takes the form it does, because of that person’s previous social experiences and group membership. It seems exceedingly unlikely that someone who had never been immersed in the traditions of the church would find themselves praying at this alter, in this physical position. When the social is understood in this way, it is not that some behaviours (or cognitions, or attitudes, or emotions…) are always social and others are always non-social, rather, individual background and context is crucial to making a judgement. John Greenwood gives the example of a pro-life stance on abortion – this could be a social belief if it is held because of, for example, membership of the Catholic Church, and it could be a non-social belief if that belief has been arrived at ‘individually’ and ‘rationally’ (Greenwood 2004: 21).
If you were to ask experimental social psychologists and neuroscientists the same question today, we would find the opposite answer most frequently given: praying is not a social behaviour. The reason for this is that, within today’s experimental psychology and neuroscience, the social is characterised by two features. Firstly, within contemporary thinking, the social refers to objects of cognition (the things which our cognitions are directed towards) and not forms of cognition (the particular shape of those cognitions). Cognitions, or behaviours, which are present, or altered, by group membership (such as praying) are not social under this framework. Instead, a social cognition is simply one related to the understanding of other people in the immediate vicinity. Similarly, a social emotion is something like empathy or sympathy: an emotion whose object is another person. The social is, therefore, now primarily about interpersonal engagement. Kurt Danziger has called this construction ‘a social in the shape of a crowd’, a concept that captures the idea eloquently; immediate, interpersonal behaviour is always social, while nothing else ever is. A second feature of this novel understanding of the social is that the cognitive processes responsible for social behaviours (like mimicry or empathy) are also responsible for various non-social behaviours. To give a famous example, cognitive psychologist Alan Leslie (1987) proposed that the ‘innate cognitive module’ which allows us to understand other people’s minds (i.e. to empathise with other people) also allows us to engage in pretend play (e.g. to pretend that a banana is a telephone). Thus, the social ceases to be a qualitatively distinct from the non-social, relying upon the same cognitive and neurological process.
Within the experimental human sciences this is a really significant shift in understandings of the social. Under this new regime the social is individualised, essentialised, and biologised, becoming a property of individual persons outside of context, individual or institutional history. I have an innate, biological capacity to feel empathy and this capacity lies at the heart of my social being. In other words, ‘the social’ is not something that shapes us throughout one’s lifetime, it is something that we are inherently and naturally.
Giving autism its form
An exception to the rule that we are inherently social creatures is believed to be found in autism. As described in the introduction, social abnormally is taken to be a, or even the, primary symptom in autistic spectrum conditions. At the most general level, I think we can easily show that the description of autism as social disorder is reliant upon the contemporary construction of the social, outlined above. In psychology’s first sense of the social, where praying is social, individuals with autism are demonstrably able: as noted earlier in this essay, many individuals with autism take part in one of the most significant self-advocacy movements of all time. People with autism are clearly able to join groups, have their behaviours shaped by membership of those groups, and so forth. It is only when the social is understood as being related to interpersonal conduct that autism becomes conceivable as social disorder residing within an individual who has difficulty with, for example, feeling empathy.
What I’ve argued elsewhere (Hollin 2014) is that as cognitive theories of autism began to dominate the field of research during the 1980s, autism became dependent upon this contemporary construction of the social in a more profound way, and this dependence marked a definite break from previously dominant psychoanalytic conceptions of the condition. In a sense, and attempting to follow Mary Douglas, I think that the nature of autism has been made to conform to this idea of the social.
To take the most obvious example of autism cohering to this new construction of the social: autism symptomology has come to increasing place cognitive capacity alongside overtly interpersonal behaviour. This is exactly what one would expect given that, as outlined above, the modules which allow us to be social and interact with other people are also taken to govern other cognitive capacities. Take the theory of Weak Central Coherence (WCC), for example, first articulated in the late 1980s (Frith 1989) and still popular today. At least in its initial guise, the theory of WCC suggests that one cognitive mechanism, which integrates disparate pieces of incoming information (think here of the skill to ‘read for context’ – you know that ‘the minute speck of dust’ and ‘the minute past the hour’ should be pronounced differently because you’ve integrated the words’ surrounding context) is responsible for both interpersonal impairment and exceptional or savant abilities on various jig-saw like tasks. This linkage, I suggest, has been made possible by the belief that the cognitive processes responsible for social behaviours are also responsible for various non-social behaviours, something basically unimaginable in other frameworks. Within this framework some behaviours (like puzzle solving skills) are drawn closer to the centre of autism as order and coherence is seen where previously there was none. Meanwhile, the threads linking autism and other behaviours are cut; Bonnie Evans has written, for example, on disappearance of ‘autistic fantasy’ from within the contemporary scientific literature (Evans 2013).
Autism and human nature
For those of us interested in autism I think these changes are both interesting and important. However, they do not explain, to return to a point made in the introduction, how what is missing in autism is now taken to reveal something fundamental about what needs to be present in order to be human. This change, too, can also be related to the shifting conception of what it means to be social.
From around the middle of the twentieth century, psychology, neuroscience, and evolutionary biology have begun to coalesce around the idea that being social, and in particular being able to emphasise with other people, lies at the core of human nature. There is not space here to investigate this trend within the bio- and human sciences more fully (Vincent Duclos’ interview with Allan Young in Somatosphere is a good place to start; Duclos 2013), but the point can be made rather simply. It is increasingly believed that human evolution has not only been shaped by ancient physical environments but also ancient social environments – and by social environments we very much mean social in the contemporary sense, the presence of other people. Our ‘social brain’ has evolved and now functions specifically to understand those around us. Given that autism is so often characterised in terms of a lack of empathy, an inability to comprehend those around us, it is unsurprising that the condition has begun to take on importance within narratives of the social brain. Continuing a long standing tradition within the psy-disciplines of examining ‘normal’ cognitive functioning in those cases where that function is perceived to be lacking, autism offers a pure case of human-minus-social. The individual with autism has thus become an example of what Will Viney has called inherently useful humans, useful “not for what they do, simply for what they are” (Viney 2013). Thus, the social hole in autism is actually a window to the soul. This, I believe, is how autism has come to stand at the centre of what it means to be human.
From what I can see, there is no reason to suppose that these relations between the social, the human, and autism have stabilised. Indeed, this recent belief that autism is key to understanding human nature hints at an avenue of potential change. For, while I’ve argued above that autism has been made to ‘conform to an idea of the social’, I think one could legitimately claim that, increasingly, the social is made to conform to the idea of autism. If your logic stresses that autism is a form of social dysfunction and, therefore, anything functioning in autism cannot be social, then the concept of autism has become very powerful indeed. I would (very tentatively) suggest that autism research which found mirror neurons to be functioning in individuals with autism contributed significantly to the declining status of those neurons when it comes to understanding ‘normal’ social functioning. For these reasons, and many more besides, I think an understanding of ongoing autism research within the bio- and human sciences will be one of the key tasks of the medical humanities in the coming decade.
Gregory Hollin is based at the Institute for Science and Society, University of Nottingham, and is supported by a Mildred Blaxter Post-Doctoral Fellowship from the Foundation for the Sociology of Health and Illness. Entitled “Locating autism: Diagnosing a social disorder” this post-doctoral project continues work commenced under an ESRC funded PhD and attempts to understand both how autism emerged as a disorder of social functioning and how that diagnosis is maintained in practice. Greg can be contacted at gregory.hollin [at] nottingham.ac.uk or @GregHollin.
Danziger, K., 2000. Making social psychology experimental: A conceptual history, 1920-1970. Journal of the History of the Behavioral Sciences, 36(4), pp.329–347.
Duclos, V., 2013. When anthropology meets science: An interview with Allan Young. Somatosphere. Available at: http://somatosphere.net/2013/10/when-anthropology-meets-science-an-interview-with-allan-young.html [Accessed June 18, 2014].
Evans, B., 2013. How autism became autism: The radical transformation of a central concept of child development in Britain. History of the Human Sciences, 26(3), pp.3–31.
Frith, U., 1989. Autism: Explaining the Enigma 1st ed., Cambridge, MA: Blackwell.
Greenwood, J.D., 2004. The Disappearance of the Social in American Social Psychology, Cambridge, UK: Cambridge University Press.
Hacking, I., 2009. How we have been learning to talk about autism: A role for stories. Metaphilosophy, 40(3-4), pp.499–516.
Hoekstra, R.A. et al., 2009. Association between extreme autistic traits and intellectual disability: Insights from a general population twin study. The British Journal of Psychiatry, 195(6), pp.531–536.
Hollin, G.J., 2014. Constructing a social subject: Autism and human sociality in the 1980s. History of the Human Sciences.
Leslie, A.M., 1987. Pretense and representation: The origins of “ Theory of Mind .” Psychological Review, 94(4), pp.412–426.
Murray, S., 2008. Representing Autism: Culture, Narrative, Fascination, Liverpool: Liverpool University Press.
Viney, W., 2013. Useful humans. The Wonder of Twins. Available at: http://thewonderoftwins.wordpress.com/2013/03/15/useful-humans-twins-research-and-the-question-of-use/ [Accessed May 14, 2013].
Disability Studies Quarterly (DSQ) recently published a special issue examining the present state and future possibilities of disability studies. In their introduction, “Growing Disability Studies: Politics of Access, Politics of Collaboration,” guest editors Michelle Jarman and Alison Kafer, explain:
How does one—how do we—grow a field? In developing this special issue, we invited contributors to share answers to that question; we asked them, in other words, to reflect upon, to grapple with, and to imagine possible futures of the field. As their responses attest, considering where and how the field may grow requires wrestling with the past, acknowledging the gaps, tensions, and possibilities of the present, and articulating critical questions for future field development. Part of that work is an acknowledgement that the field is, in fact, already growing: in recent years we have witnessed the development of new programs, an increased demand for courses at the undergraduate and graduate levels, an expansion in online offerings, a rapid proliferation of disability studies publications, and wider recognition of disability studies as a field.
What does it mean to grow disability studies, whether through interdisciplinary efforts to bring disability into classroom discussions and curricula or in the form of standalone research institutes and academic programs? What might the future hold in terms of theory, practice, collaborations, and institutional frameworks?
This issue of DSQ consists of three thematic areas: “Shifts,” “Energies,” and “Locations.” “Shifts” centers on themes of gaps, ruptures, contestations, and openings in disability studies. It includes the following three articles, with original abstracts.
On Being Transminded: Disabling Achievement, Enabling Exchange
Anne Dalke and Clare Mullaney
We write collaboratively, as a recent graduate and long-time faculty member of a small women’s liberal arts college, about the mental health costs of adhering to a feminist narrative of achievement that insists upon independence and resiliency. As we explore the destabilizing potential of an alternative feminist project, one that invites different temporalities in which dis/ability emerges and may be addressed, we work with disability less as an identity than as a generative methodology, a form of relation and exchange. Mapping our own college as a specific, local site for the disabling tradition of “challenging women,” we move to larger disciplinary and undisciplining questions about the stigma of mental disabilities, traversing the tensions between institutionalizing disability studies and the field’s promise of destabilizing the constrictions of normativity.
Thinking with Disability Studies
In this essay, I offer tentative ruminations about the possibilities/challenges of theory and praxis in the field of disability studies. I begin the essay by thinking through my own positionality as a non-disabled woman of color scholar/ally in the field. Cautiously situating myself in a location of outsider-within (Hill-Collins,1998), I explore how disability studies is disruptive of any boundaries that claim to police distinctions between disabled/non-disabled subject positions. Noting the dangers of claiming that everyone is disabled at some historical moment, I propose instead a relational analysis to engage the materiality of disability at the intersections of race, class, gender, nation, and sexual identity within specific historical contexts and discuss the complicated impasses that continue to plague disability studies at these intersections. I conclude the essay by recognizing the labor of scholar/activists in the field who call for a committed politics of accountability and access via disability justice.
Transnationalising Disability Studies: Rights, Justice and Impairment
Karen Soldatic and Shaun Grech
In this paper we aim to explore the realm of impairment in terms of its politicization under transnational claims for justice. The realm of disability rights and justice has been a central theme in disability analytical inquiry and by disability movement actors engaged in struggles of disability affirmative politics. Within this frame, there has been an increasing amount of disability scholarship and activism at the transnational sphere. In fact, since the ratification of the UNCRPD (2006) greater transnational alliances have become a central feature to advancing disability affirmative claims for rights and justice. While welcomed, we argue that within the transnational realm, the focus on disability alone critically marginalizes those groups engaging in repertories of action within the logos of impairment as transnational claims for disability justice tend to naturalise impairment and negate the production of impairment under global structural processes of violence. To address this issue, we suggest that the growing scholarship on transnational theorizing and activism within disability needs to respond to these claims for justice and rights. To conclude we argue that transnational theorizing and praxis is in fact, a double move – an affirmative politics of disability rights and justice and a transformative politics of impairment.
The second section, “Energies,” is devoted to what the editors call a “radical politics of collaboration,” and includes the following pieces.
Growing Rhizomatically: Disability Studies, the Art Gallery and the Consortium
Kristin Anne Lindgren, Amanda Cachia, and Kelly C. George
In this essay, we propose that the Deleuzoguattarian rhizome offers a map and metaphor for the field of disability studies, especially as it develops outside the boundaries of a defined program or curriculum. As an example of rhizomatic growth, we discuss a series of events in the Philadelphia area in fall 2012 that focused on disability studies and disability arts and culture, including an art exhibition entitled What Can A Body Do? and a scholarly residency sponsored by the Greater Philadelphia Women’s Studies Consortium. We suggest that the art gallery offers a generative space for the growth of disability studies, disability aesthetics, and new models of access, and we emphasize the importance of cross-institutional collaboration in the development of disability studies not only as a field but as a field of energy.
Collision and Collusion: Artists, Academics, and Activists in Dialogue with the University of California and Critical Disability Studies
Catherine Kudlick and Susan Schweik
This essay recounts two interconnected collaborative disability studies projects. Because of every person’s complex relationship to their own embodiment and that of others, disability beckons us to a realm beyond abstraction, even as the field becomes ever more theoretical. We describe how disability shaped what we did and how we did it; description is a key term here. Conversations such as the ones we had in 2010 and 2012 pave the way for new ideas by offering concrete examples of disability as a generative force. Through risk taking and creative practice, the best academics and artists challenge the status quo, maybe serving as translators for people not in the habit of giving disability or disabled people much thought. The more people come to associate disability with positive ideas, the more we can imagine changing those hardwired negative, pitying forces that dominate approaches to policy, practices, and encounters in daily life.
Disability Is a Feminist Issue: Bringing Together Women’s and Gender Studies and Disability Studies
Alison Piepmeier, Amber Cantrell, and Ashley Maggio
This paper tracks a series of conversations between a women’s and gender studies professor and two of her undergraduate students, all of whom are interested in disability studies. We explore the links between disability and feminism, and to think through the possibilities of having disability studies become part of the academy. Our primarily positive interactions with the academic institution and our interest in disability studies has led to our argument that disability is in fact a feminist issue. Disability studies has allowed each of us to re-conceptualize our own relationships to feminist theory, and shaped our ability to envision a better academic environment for all students.
Although few colleges and universities offer undergraduate disability studies curricula, our own experiences suggest that higher education settings provide opportunities for students to engage with and act upon disability studies theories and concepts. To learn more about the interactions between undergraduate student groups and disability studies, we interviewed students and faculty on three campuses. We found that students not only access disability studies theory through both formal and informal means, but that they also actively engage with it to develop their understandings of disability and interpret their experiences. Additionally, student groups educate their campus communities by advocating for the inclusion of disability studies in curricula, sharing their perspectives in the classroom, and hosting events related to disability studies. Through these activities, often in collaboration with faculty and staff, students forge reciprocal relationships between their activism and the field of disability studies.
The final section of the special issue, “Locations,” examines some of the diverse trajectories within disability studies thus far. It includes the following five articles, with abstracts.
The Story of My Work: How I Became Disabled
Perhaps the best opening line in disability studies comes from Georgina Kleege: “Writing this book made me blind.” Following this honorable tradition, I begin my explication of disability studies through my own experience with a similar starting point: “Feminism made me disabled.” Honoring as well the tradition of making theory through narrative, I also follow Helen Keller, who like Kleege situates her knowledge in the local. From these exemplary works of feminist disability studies, I develop an explication of how I grew disability studies and how it grew me. Throughout, I consider the categories of disabled and nondisabled and the ways in which they have developed in disability studies literature broadly. I conclude by asserting the importance of both access and identity and community for disabled people.
Exploring major requisites to establish an Iranian disability studies, the aim of this study is to determine how a local literature of disability can be formed in Iran, as well as how the Iranian and global disability studies might interchange disability knowledge. In an analysis of the responses to a qualitative questionnaire, three themes emerged: rudimentary resources, disability literature, and political prerequisites. Accordingly, human and financial resources, a bank of Farsi and English literature on disability, as well as developing academic relations between Iranian and international disability scholars (as an outcome of improving the Iran-USA political affairs) are essential to form a local disability studies in Iran and to engage it in the global discussions of disability studies.
Subversive Status: Disability Studies in Germany, Austria, and Switzerland
Lisa Pfahl and Justin J.W. Powell
What activities facilitate the development of disability studies (DS)? What barriers hinder its (multi)disciplinary flourishing? We address these questions focusing on contemporary DS in Germany, Austria, and Switzerland—vibrant but challenging locales for DS. This multidisciplinary field engages intellectuals, activists, and stakeholders to subversively cross disciplinary, institutional, and political divides. Critical DS scholarship relies on collaboration among members of the disability (rights) movement, advocates, and academics to develop its subversive status. Within the academy, despite general barriers to transdisciplinary fields of study and persistent disability discrimination, more positions have been devoted to research and teaching in DS. Intersectionality debates thrive and further disciplines discover the richness that the complex subject of dis/ability offers. The field, recognizing its subversive status and engaging insights from DS worldwide—across language and disciplinary boundaries—could better focus and unfold its critical powers. The potential of DS in the German-speaking countries continues to grow, with diverse conferences, teaching, and publications bolstering the exchange of ideas.
This article focuses on the Disability Studies in Education (DSE) conference as an example of expanding disability studies (DS). First, the origins, purpose, and history of the DSE conference are described as a valid alternative discipline to special education. Second, the following three questions are posed in relation to DSE scholars: (1) To what degree can we transgress within existing structures of teacher education and doctoral programs without being provided lip-service, coopted, or dismissed as ideological versus practical? (2) To what degree can we engage (and critique) the field of special education within its journals and conferences—and provide a greater plurality of perspectives within them? And, (3) how can we strategize to widely circulate ideas within DSE throughout education and its related fields? Presentations from the 2012 DSE conference are analyzed, described, and used as a collective response to help answer these questions. Fourth, DSE scholars share post-conference thoughts on the future of DSE. Finally, the deep debt of DSE to DS is acknowledged, along with speculation about possible ways in which DSE may help inform the growth of DS.
The View from DSQ
Elizabeth Brewer and Brenda Jo Brueggemann
Analysis of publications in Disability Studies Quarterly between 2000-2012. Data and discussion concerning: the number of articles published; the number of articles collaboratively (or individually) authored; the kind and range of fields/disciplines that DSQ-published authors work in; the kind and range of methodologies generating DSQ-published research; the key terms for DSQ publications during this 13-year period (focusing both on titles and keywords). Conclusion summarizes trends and key points from the analysis and suggests a few points of further engagement for the future of Disability Studies.