In the Journals

In the Journals, December (Part 2)

December welcomed a wide array of articles of interest to Somatosphere readers.  Key themes included disability, mental health, medical infrastructures, reproduction, care, and the globalization of health and illness.  Of particular note were special issues of Culture, Medicine, and Psychiatry and Science as Culture, as well as a section on epidemics featured in Social History of Medicine.  In addition to surveying these three issues, this installment of “In the Journals” includes relevant pieces (with original abstracts) from the following: American AnthropologistMedical Humanities; Philosophy, Ethics, and Humanities in Medicine; Social Studies of Science; and Sociology of Health & Illness.  Happy reading!

The December issue of Culture, Medicine, and Psychiatry features a special issue edited by Atwood Gaines and Brandy Schillace.   Their editorial introduction, “Meaning and Medicine in a New Key: Trauma, Disability, and Embodied Discourse Through Cross-Cultural Narrative Modes,” will be of interest to scholars of disability and embodiment.  This special issue includes the following articles:

Curing ‘Moral Disability’: Brain Trauma and Self-Control in Victorian Science and Fiction” (Brandy Schillace)

While, historically, the disabled body has appeared in literature as ‘‘monstrous,’’ burgeoning psychological theories of the Victorian period predicated an unusual shift. In a culture of sexual anxiety and fears of devolution and moral decay, the physically disabled and ‘‘weak’’ are portrayed as strangely free from moral corruption. Unlike the cultural link between deviance and disability witnessed in the medical literature and eugenic approach to generation, authors of narrative fiction—particularly Charles Dickens, but Wilkie Collins, Charlotte Yonge, and others as well—portray disabled characters as ‘‘purified,’’ and trauma itself as potentially sanitizing. This present paper argues that such constructions were made possible by developments in the treatment of insanity. ‘‘Curing ‘Moral Disability’: Brain Trauma and Self-Control in Victorian Fiction,’’ examines the concept of trauma-as-cure. Throughout the Victorian period, case studies on brain trauma appeared in widely circulated journals like the Lancet, concurrently with burgeoning theories about psychological disturbance and ‘‘moral insanity.’’ While not widely practiced until the early twentieth century, attempts at surgical ‘‘cures’’ aroused curiosity and speculation—the traumatic event that could free sufferers from deviance. This work provides a unique perspective on representations of disability as cure in the nineteenth century as a means of giving voice to the marginalized, disabled, and disempowered.

Disability and Deviance: Dario Argento’s Phenomena and the Maintenance of Abledness as a Critical Framework” (Jamie McDaniel)

This exploration of disability directly applies Campbell’s understanding of “abledness” to the film Phenomena by Italian director Dario Argento. Phenomena (1985) explores, through the diegetic response to protagonist Jennifer Corvino’s ability to communicate with insects, the shifting cultural association between disability and deviance. The film begins with the traditional response to disability, what education psychologist Kaoru Yamamoto considers the cultural importance of classifying and interpreting disabled bodies by fitting them into a narrative of deviance for surveillance and control. Throughout Argento’s film, characters attempt to classify Jennifer; scientists seek to diagnose her “affliction” through the medical model of disability, while Jennifer’s schoolmistresses interpret Jennifer’s behavior as a disciplinary problem based in environmental factors. This represents the structural model of disability, but in each instance, the attempt to classify Jennifer fails to diagnose or discipline the supposed “deviant, disabled body.” Through this failure, the film dramatizes contemporary critiques of traditional models that examine disability, moving beyond to explore what Fiona Kumari Campbell has called “the maintenance of abledness” in sexed, raced, and modified bodies. By normalizing Jennifer’s ability, then, Phenomena offers a framework for examining the process through which elements of “abledness” become normalized, a concept which many theorists now argue should maintain the focus of disability studies.

Drawing Disability in Japanese Manga: Visual Politics, Embodied Masculinity, and Wheelchair Basketball in Inoue Takehiko’s REAL” (Andrea Wood)

This work explores disability in the cultural context of contemporary Japanese comics. In contrast to Western comics, Japanese manga have permeated the social fabric of Japan to the extent that vast numbers of people read manga on a daily basis. It has, in fact, become such a popular medium for visual communication that the Japanese government and education systems utilize manga as a social acculturation and teaching tool. This multibillion dollar industry is incredibly diverse, and one particularly popular genre is sports manga. However, Inoue Takehiko’s award-winning manga series REAL departs from more conventional sports manga, which typically focus on able-bodied characters with sometimes exaggerated superhuman physical abilities, by adopting a more realistic approach to the world of wheelchair basketball and the people who play it. At the same time REAL explores cultural attitudes toward disability in Japanese culture—where disability is at times rendered “invisible” either through accessibility problems or lingering associations of disability and shame. It is therefore extremely significant that manga, a visual medium, is rendering disability visible—the ultimate movement from margin to center. REAL devotes considerable attention to realistically illustrating the lived experiences of its characters both on and off the court. Consequently, the series not only educates readers about wheelchair basketball but also provides compelling insight into Japanese cultural notions about masculinity, family, responsibility, and identity. The basketball players—at first marginalized by their disability—join together in the unity of a sport typically characterized by its “abledness.”

From Victim to Victor: ‘Breaking Bad’ and the Dark Potential of the Terminally Empowered” (Mark Lewis)

As treatments for malignancies have improved incrementally over the preceding decades, patients with cancer have been encouraged to reject an attitude of hopelessness and to choose instead the role of fighters. The recasting of the cancer patient as warrior and winner, upheld through the Livestrong movement, reaches its monstrous apotheosis in the form of Walter White, the central figure in the AMC television series “Breaking Bad.” The story begins with Walt as the protagonist, but the arc of this conversion narrative transforms him into the antagonist, exploring the darkest potential of his post-diagnosis empowerment. His awareness of his own mortality enables him to take risks that his more rational, pre-cancer self would have avoided. Rather than being rendered impotent by fear of an impending death, he finds himself emboldened, liberated from behavioral norms, capable of heretofore-unthinkable violence and even murder. As Walt moves from victim to victor, the viewer realizes the perils of a survive-at-all-costs mentality and is forced to question their own, initially sympathetic perception of Walt. The series subverts the notion of the cancer patient made noble through struggle by portraying a man betrayed by his own body who then becomes willing to betray everything else in the amoral service of his pride.

Sleepwalking, Violence and Desire in the Middle Ages” (William MacLehose)

This study discusses the phenomenon of medieval sleepwalking as a disorder of body and soul. In the thirteenth and early fourteenth centuries, medical and natural philosophical writers began to identify the category of the sleepwalker with unusual precision: the most common example of the disorder involved an aristocrat who rose, armed himself, and mounted his horse, all the while imagining that he was fighting enemies or hunting deer. Explanations for this extraordinary behaviour involved the physiology of sleep and the functioning of the brain. In particular, theorists believed that the imagination, a storehouse of images located towards the front of the brain, took control because reason and sensation had been disabled during sleep. As a consequence, daytime fears and traumas could come to the fore for some sleepers, causing them to act and react in their sleep in ways they could not, or were not willing to do, in their waking, rational state. As such, medieval medical writers viewed sleepwalking as a dangerous, disordered state which called into question the Aristotelian divide between waking and sleeping as well as the categories of reason, sensation and voluntary motion.

The Practical Application of Narrative Medicine at Mayo Clinic: Imagining the Scaffold of a Worthy House” (Johanna Rian and Rachel Hammer)

American health care institutions increasingly recognize narrative medicine as a means to developing quality patient care. More commonly applied in health care professional development settings, narrative medicine is less overtly employed with patient populations. In this article, we describe the application of various narrative practices in the patient care and medical education programs of a major health care center in Minnesota. We discuss the impact of these programs on their participants in relation to the evidence based in current scholarship. Further, we examine narrative externalization of illness in Katherine Butler Hathaway’s disability memoir The Little Locksmith, a text which implicates the work of metaphor-making as a transformative step in healing. While several reports demonstrate that patients can find creative writing during times of illness to be therapeutic, there are many for whom the practice is problematic or unattractive, obstacles to practice implementation that the authors discuss. However, based on the experience of our institution, for health care institutions seeking to build a legacy of leadership in empathic patient care, narrative—employed in mentoring physicians in training and in establishing strong, dialogic relationships with patients and colleagues—should serve as a central strategy, or scaffold.

“‘Now he walks and walks, as if he didn’t have a home where he could eat’: Food, Healing, and Hunger in Quechua Narratives of Madness” (David Orr)

 In the Quechua-speaking peasant communities of southern Peru, mental disorder is understood less as individualized pathology and more as a disturbance in family and social relationships. For many Andeans, food and feeding are ontologically fundamental to such relationships. This paper uses data from interviews and participant observation in a rural province of Cuzco to explore the significance of food and hunger in local discussions of madness. Carers’ narratives, explanatory models, and theories of healing all draw heavily from idioms of food sharing and consumption in making sense of affliction, and these concepts structure understandings of madness that differ significantly from those assumed by formal mental health services. Greater awareness of the salience of these themes could strengthen the input of psychiatric and psychological care with this population and enhance knowledge of the alternative treatments that they use. Moreover, this case provides lessons for the global mental health movement on the importance of openness to the ways in which indigenous cultures may construct health, madness, and sociality. Such local meanings should be considered by mental health workers delivering services in order to provide care that can adjust to the alternative ontologies of sufferers and carers.

In addition, this issue of CMP includes commentaries from Daniel Goldberg (“Querying Inter-Disciplinary Approaches“) and Helen King (“Fighting Through Fiction“), as well as an editorial piece by Atwood Gaines honoring the life and work of renowned medical sociologist and bioethicist Renée Claire Fox.

Science as Culture devoted its final issue of 2013 to the theme “Publics of Bioscience,” featuring an introduction by Maureen McNeil and Joan Haran.  This exciting collection includes the following:

The Contested Publics of the UK GM Controversy: A Tale of Entanglement and Purification” (Larry Reynolds)

Ten years ago the UK held one of the largest, most complex and politically charged exercises in the turn towards public engagement in the governance of the biosciences. Called ‘GM Nation’ this experiment arose as an attempt to mediate public concerns in the run-up to a government decision on whether to allow some varieties of GM crops to be commercially cultivated in the UK. Formed to mediate a controversy, ‘GM Nation’ itself became a focus of controversy, with claims that many of its public participants were already engaged in the GM issue and were thus not representative of a general public. In this way, the category of the public became a contested category, with at least two different versions of the public featuring in the GM controversy. Particularly important was the contrast between engaged or issue publics that emerged entangled in and increasingly familiar with the objects and issues of the controversy, and a general public, identified through its distance and disengagement from the GM issue. These different forms of public were articulated through different modes of engagement ranging from engaged publics found in hybrid forums such as local village meetings, to versions of the general public brought into being in some of the closed parts of ‘GM Nation’. Throughout all this, a wider public institutional architecture, improvised to govern the controversy, became the site of complex boundary work that attempted to separate science from politics, a feature that conditioned how these different versions of public would be articulated and received.

From Validating to Verifying: Public Appeals in Synthetic Biology” (Adrian Mackenzie)

Synthetic biology provides a vivid and richly entangled contemporary example of a science being made public. A science, however, can be made public in different ways. A public could validate, legitimate, de-legimate, object to, verify, confirm or dissent from science. Practically, scientists could publicise science—in the mass media—or they could make science public. The contrast between high-profile, media scientists such as J. Craig Venter, and community-based participatory mechanisms such as OpenWetWare allows us to see how these alternatives play out in practice. While it is easy to criticise and dismiss the public-relations oriented promotion of synthetic biology by figures such as Venter, how should we evaluate the open participatory mechanisms of a social media effort such as OpenWetWare? I suggest, drawing on the work of Isabelle Stengers and Michael Warner, that the case of synthetic biology is interesting because many synthetic biologists commit themselves to making it public, and making its public-ness part of how it is done. They place hope in publics to make the science viable. At the same time, however, the publics who are welcomed into OpenWetWare are largely confined to validating the coordination mechanisms on which the claim to public-ness rests. Whether publics can do more than validate synthetic biology, then, remains a question both for publics outside and inside this emerging scientific field. And whether the alternatives of validation or participation themselves adequately frame what is at stake in the emergence of fields such as synthetic biology remains debatable.

Institutional Imaginaries of Publics in Stem Cell Banking: The Cases of the UK and Spain” (Neil Stephens, Paul Atkinson, and Peter Glasner)

The UK and Spanish Stem Cell Banks hold politically controversial—but potentially therapeutically beneficial—human embryonic stem cells for distribution to research laboratories globally. The UK bank was the first of its type in the world, opening in 2004, and the Spanish bank used it as a role model in its own development. Both banks structure their operations in response to how their staffs imagine the publics in their nation make trust judgements about their work. Differences between the workings of each bank can be traced to differences in the collective imaginings operating at each bank—termed ‘institutional imaginaries’—about how publics think. The UK bank sustains an imaginary in which distance lends legitimacy and disengagement signifies correct moral practice. It conjures a public that values a steady, safe and reliable institution—free from potential conflict of interest—about which the less news the better. This stands in contrast to the Spanish bank that conjures a public that retains an interest in legitimate, ethical guardianship of stem cell material, but which is less worried about conflict of interest in attaining this. Instead, for the Spanish institution, engagement with science and the media through the projection of the bank as cutting edge is deemed crucial for maintaining public support.

Biodigital Publics: Personal Genomes as Digital Media Artefacts” (Kate O’Riordan)

The recent proliferation of personal genomics and direct-to-consumer (DTC) genomics has attracted much attention and publicity. Concern around these developments has mainly focused on issues of biomedical regulation and hinged on questions of how people understand genomic information as biomedical and what meaning they make of it. However, this publicity amplifies genome sequences which are also made as internet texts and, as such, they generate new reading publics. The practices around the generation, circulation and reading of genome scans do not just raise questions about biomedical regulation, they also provide the focus for an exploration of how contemporary public participation in genomics works. These issues around the public features of DTC genomic testing can be pursued through a close examination of the modes of one of the best known providers—23andMe. In fact, genome sequences circulate as digital artefacts and, hence, people are addressed by them. They are read as texts, annotated and written about in browsers, blogs and wikis. This activity also yields content for media coverage which addresses an indefinite public in line with Michael Warner’s conceptualisation of publics. Digital genomic texts promise empowerment, personalisation and community, but this promise may obscure the compliance and proscription associated with these forms. The kinds of interaction here can be compared to those analysed by Andrew Barry. Direct-to-consumer genetics companies are part of a network providing an infrastructure for genomic reading publics and this network can be mapped and examined to demonstrate the ways in which this formation both exacerbates inequalities and offers possibilities for participation in biodigital culture.

Science, Scientism and Imaginaries of Publics in the UK: Passive Objects, Incipient Threats” (Ian Welsh and Brian Wynne)

Two-way public engagement with science is an important modern democratic practice that paradoxically coincides with the intensifications of state surveillance and policing of publics and social movements engaging with issues involving science. This raises important questions about the contemporary anatomies of publics, and what count as legitimate expressions of public concern over scientific stakes within the knowledge economy. Implicit in the tension between inclusion and surveillance are concerns over the social meaning and authority of science amongst both scientific practitioners and publics. Bringing science and technology studies (STS) and social movement studies (SMS) into dialogue offers a means to explore the neglected ontological stakes in the framing of scientific imaginaries of publics, and public imaginaries of science. Post-WWII UK science–publics relations have emerged in three significant modalities, with publics imagined: as passive non-entities, circa 1950–1990 (continuing); as incipient threats due to presumed deficits in their grasp of science 1990–2000 (continuing); and, since circa 2000, as politicised threats requiring state control. Each modality is shaped by elite denial of the normative commitments embedded within science as surrogate politics—scientism. In each mode, scientistic elite emphasis on epistemic issues forecloses engagement with broader public meanings expressing legitimate normative and ontological differences. Fusing the more epistemic focus of STS with SMS’s emphasis on meaning and democratic process offers a route to deeper democratic forms of public engagement with what is called science, which would also precipitate more accountability in elite discourses around science and technology.

The UK Hybrid Embryo Controversy: Delegitimising Counterpublics” (Joan Haran)

The UK Human Fertilisation and Embryology Act of 1990 was revised in 2008 in response to legal challenges, societal changes and clinical advances since 1990. A provision permitting the creation of animal–human hybrid embryos was the subject of an extremely effective public relations (PR) campaign by embryo scientists and other supporters of such experimentation. In response, science correspondents of the ‘serious’ or ‘quality’ press commented favourably on these PR activities; this validation supplemented key messages in their press releases. The approval conferred on attempts to shape public opinion was explicitly contrasted with the public consultation exercise conducted by the UK Department of Health in 2005. Press coverage of the campaign demonstrated asymmetrical framings of the representativeness of public opinion and scientists’ accounts of their proposed research. Scientists’ views were represented as objective and therefore a legitimate basis for policymaking, in contrast with subjective views of putatively uninformed or opposed publics. Such opponents were cast as a counterpublic. The public interest was limited to evaluating the science on its own terms, thus pre-empting consideration of the possibility that public interests and scientists’ interests may not coincide.

Between a Rock and a Hard Place: The Deficit Model, the Diffusion Model and Publics in STS” (Maureen McNeil)

The start of the twenty-first century witnessed the flourishing of both the biosciences (particularly genomics) and initiatives around public engagement in science, particularly in the UK and USA. STS researchers have both followed and fuelled this latter trend. Hence, it may be helpful to review the genealogy of these recent developments and of STS concern for the publics of science. This provides a way of assessing whether STS activities have been contributing to making the sciences more open and accountable to their publics. One trail returns to the institutionalisation of Public Understanding of Science (PUS) in the mid-1980s. The critique of this movement by STS scholars through reference to the deficit model (of public understanding of science) also figures here. However, less attention has been given to other modes of conceptualising science and publics, including what Cooter and Pumfrey label as the ‘diffusionist’ or ‘diffusion’ model (of scientific knowledge), which they contend entrenched traditional views of scientific knowledge and of publics as receivers of such knowledge. More recently, investigations of the making of science in diverse locations, attention to multiplicity and co-production have taken STS in new directions. Nevertheless, the legacies of both the deficit and diffusion models of science and publics continue to influence STS and its ‘regimes of truth’. Questions remain around STS researchers’ persistent failure to acknowledge the diffusion model, in particular, and the consequent retrenchment of traditional views of how science works, limiting prospects for substantial public engagement and more open, democratic modes of science.

The November issue of Social History of Medicine included a collection of reviews on recent books about epidemics, particularly influenza, tuberculosis, and plague.  In addition, the following articles relate to the broad themes of mental health, epidemics, and treatment:

More than Meets the Eye: Revealing the Therapeutic Potential of ‘Light’, 1896-1910” (Annie Jamieson)

The X-ray is frequently presented as a classic case of technological innovation in medicine. Histories have presented the enthusiastic adoption and use of the new matter-penetrating radiation by the medical community as driven by diagnostic possibilities. However, this view obscures the complete story. Considering X-rays as one component of a technological configuration developed for ‘light’ treatment of a specific disease, this article expands our understanding of the reception and adoption of X-rays, and medical technologies in general. The article focuses on the relationship between X-rays and another much less well known, but Nobel Prize-winning light therapy: the Finsen Lamp. By viewing these two simultaneously competing and complementary technologies through the lens of a specific skin disease—lupus vulgaris—I show that there was much more to early X-rays than diagnosis and that they were far from the only, or even the most useful, novel medical technology at the time.

Rethinking Post-war Mental Health Care: Industrial Therapy and the Chronic Mental Patient in Britain” (Vicky Long)

The article argues that we need to examine how the transformations of psychiatric practice in the post-war era affected individuals suffering from chronic mental disorder, via an analysis which encompasses the biomedical and social dimensions of intra- and extra-mural care. It focuses upon the development of industrial therapy units in British psychiatric hospitals, in which patients undertook industrial sub-contract work. Industrial therapy disregarded research undertaken by industrial psychologists in the interwar years which asserted that repetitive, monotonous factory work had a detrimental impact on mental health. Instead, psychiatrists drew inspiration from systems of rehabilitation inaugurated by the Ministry of Labour to help people with disabilities re-enter the workforce. This article explores how economic constraints shaped the design and delivery of industrial therapy, and suggests that industrial therapy helped entrench the stigma attached to chronic mental illness by assessing long-stay patients according to their productivity.

Balancing Risks: Childhood Inoculations and America’s Response to the Provocation of Paralytic Polio” (Stephen Mawdsley)

Polio provocation has concerned health professionals for nearly a century. Before an effective polio vaccine was licensed in 1955, evidence that certain paediatric injections could precipitate a polio infection and severe forms of paralysis informed medical debates, experiments and shifts in public health policy. This article explores how the theory was received and approached in the United States and the consequences of its protracted resolution. It contends that although medical professionals sought to maximise health benefits for American citizens, varying conceptions of what constituted an appropriate balance of risk inspired diverse health policy outcomes.

The December issue of Philosophy, Ethics and Humanities in Medicine included 15 articles (see partial abstracts, below), as well as a commentary on Foucault’s Technology of the Self and two meeting reports, one on the European Union WHO 2012 conference and another on the 2012 Varsity Medical Debate in London.  Original articles relating to psychiatry and mental health included:

Culture, Salience, and Psychiatric Diagnosis: Exploring the Concept of Cultural Congruence and its Practical Applications” (Mohammed Rashed)

Cultural congruence is the idea that to the extent a belief or experience is culturally shared it is not to feature in a diagnostic judgement, irrespective of its resemblance to psychiatric pathology. This rests on the argument that since deviation from norms is central to diagnosis, and since what counts as deviation is relative to context, assessing the degree of fit between mental states and cultural norms is crucial. Various problems beset the cultural congruence construct including impoverished definitions of culture as religious, national or ethnic group and of congruence as validation by that group. This article attempts to address these shortcomings to arrive at a cogent construct.

The Place of Words and Numbers in Psychiatric Research” (Bruno Falissard, Anne Révah, Suzanne Yang, and Anne Fagot-Largeault)

In recent decades, there has been widespread debate in the human and social sciences regarding the compatibility and the relative merits of quantitative and qualitative approaches in research. In psychiatry, depending on disciplines and traditions, objects of study can be represented either in words or using two types of mathematization. In the latter case, the use of mathematics in psychiatry is most often only local, as opposed to global as in the case of classical mechanics. Relationships between these objects of study can in turn be explored in three different ways: 1/ by a hermeneutic process, 2/ using statistics, the most frequent method in psychiatric research today, 3/ using equations, i.e. using mathematical relationships that are formal and deterministic. The 3 ways of representing entities (with language, locally with mathematics or globally with mathematics) and the 3 ways of expressing the relationships between entities (using hermeneutics, statistics or equations) can be combined in a cross-tabulation, and nearly all nine combinations can be described using examples. A typology of this nature may be useful in assessing which epistemological perspectives are currently dominant in a constantly evolving field such as psychiatry, and which other perspectives still need to be developed. It also contributes to undermining the overly simplistic and counterproductive beliefs that accompany the assumption of a Manichean “quantitative/qualitative” dichotomy. Systematic examination of this set of typologies could be useful in indicating new directions for future research beyond the quantitative/qualitative divide.

Rethinking Psychiatry with OMICS Science in the Age of Personalized P5 Medicine: Ready for Psychiatome?” (Nicola Bragazzi)

 The Diagnostic and Statistical Manual of Mental Disorders (DSM) is universally acknowledged as the prominent reference textbook for the diagnosis and assessment of psychiatric diseases. However, since the publication of its first version in 1952, controversies have been raised concerning its reliability and validity and the need for other novel clinical tools has emerged. Currently the DSM is in its fourth edition and a new fifth edition is expected for release in 2013, in an intense intellectual debate and in a call for new proposals.

Since 1952, psychiatry has undergone many changes and is emerging as unique field in the medical area in which a novel approach is being demanded for properly treating patients: not the classical “one-size-fits-all” approach, but a more targeted and tailored diagnosis and therapeutics, taking into account the complex interactions among genes and their products, environment, culture and the psychological apparatus of the subject.

OMICS sciences, being based on high-throughput technologies, are systems biology related fields (like genomics, proteomics, transcriptomics and so on). In the frame of the P5 medicine (personalized, participatory, predictive, preventive, psycho-cognitive), they could establish links between psychiatric diseases, which are disorders with a final common symptomatology with vastly heterogeneous biological, environmental and sociological underpinnings, and by understanding the psychiatric diseases beyond their classic symptomatic or syndromal definitions using OMICS research, one can have a broader picture and unprecedented links and reclassification of psychiatric nosology. Importantly, by understanding the basis of heterogeneity in diseases through OMICS research, one could also personalize treatment of psychiatric illnesses.

In this manuscript, we discuss a gap in the current psychiatric research, namely the missing logical link among OMICS, personalized medicine and reclassification of diseases. Moreover, we explore the importance of incorporating OMICS-based quantitative dimensional criteria, besides the classical qualitative and categorical approach.

Is Acting on Delusions Autonomous?” (Jann Schlimme)

In this paper the question of autonomy in delusional disorders is investigated using a phenomenological approach. I refer to the distinction between freedom of intentional action, and freedom of the will, and develop phenomenological descriptions of lived autonomy, taking into account the distinction between a pre-reflective and a reflective type. Drawing on a case report, I deliver finely-grained phenomenological descriptions of lived autonomy and experienced self-determination when acting on delusions. This analysis seeks to demonstrate that a person with delusions can be described as responsible for her behaviour on a ‘framed’ level (level of freedom of intentional action), even though she is not autonomous on a higher (‘framing’) level (level of freedom of the will), if, and only if, the goods of agency for herself and others are respected. In these cases the person with delusions is very nearly comparable to people in love, who are also not free to choose their convictions, and who could also be rightly held responsible for the behaviour flowing from their convictions.

 This issue of PEH also included two pieces on medical tourism:

Promoting Social Responsibility Amongst Health Care Users: Medical Tourists’ Perspectives on an Information Sheet Regarding Ethical Concerns in Medical Tourism” (Krystyna Adams, Jeremy Snyder, Valorie Crooks, and Rory Johnston)

Medical tourists, persons that travel across international borders with the intention to access non-emergency medical care, may not be adequately informed of safety and ethical concerns related to the practice of medical tourism. Researchers indicate that the sources of information frequently used by medical tourists during their decision-making process may be biased and/or lack comprehensive information regarding individual safety and treatment outcomes, as well as potential impacts of the medical tourism industry on third parties. This paper explores the feedback from former Canadian medical tourists regarding the use of an information sheet to address this knowledge gap and raise awareness of the safety and ethical concerns related to medical tourism.

Honeymoon, Medical Treatment or Big Business?  An Analysis of the Meanings of the Term ‘Reproductive Tourism” in German and Israeli Public Media Discourses” (Sharon Bassan and Merle Michaelsen)

Infertile couples that travel to another country for reproductive treatment do not refer to themselves as “reproductive tourists”. They might even be offended by this term. “Tourism” is a metaphor with hidden connotations. We will analyze these connotations in public media discourses on “reproductive tourism” in Israel and Germany. We chose to focus on these two countries since legal, ethical and religious restrictions give couples a similar motivation to travel for reproductive care, while the cultural backgrounds and conceptions of reproduction are different.

Additional relevant articles covered such diverse themes as autism, Alzheimer’s, reproduction, clinical practice, and public health, including:

The Autism Puzzle: Challenging a Mechanistic Model on Conceptual and Historical Grounds” (Berend Verhoeff)

Although clinicians and researchers working in the field of autism are generally not concerned with philosophical categories of kinds, a model for understanding the nature of autism is important for guiding research and clinical practice. Contemporary research in the field of autism is guided by the depiction of autism as a scientific object that can be identified with systematic neuroscientific investigation. This image of autism is compatible with a permissive account of natural kinds: the mechanistic property cluster (MPC) account of natural kinds, recently proposed as the model for understanding psychiatric disorders. Despite the heterogeneity, multicausality and fuzzy boundaries that complicate autism research, a permissive account of natural kinds (MPC kinds) provides prescriptive guidance for the investigation of objective causal mechanisms that should inform nosologists in their attempt to carve autism’s boundaries at its natural joints. However, this essay will argue that a mechanistic model of autism is limited since it disregards the way in which autism relates to ideas about what kind of behavior is abnormal. As historical studies and definitions of autism show, normative issues concerning disability, impairment and societal needs have been and still are inextricably linked to how we recognize and understand autism. The current search for autism’s unity in neurobiological mechanisms ignores the values, social norms and various perspectives on mental pathology that play a significant role in ‘the thing called autism’. Autism research needs to engage with these issues in order to achieve more success in the effort to become clinically valuable.

Neuroethics, Confidentiality, and a Cultural Imperative in Early Onset Alzheimer Disease: A Case Study with a First Nation Population” (Shaun Stevenson, B. Lynn Beattie, Richard Vedan, Emily Dwosh, Lindsey Bruce, and Judy Ills)

The meaningful consideration of cultural practices, values and beliefs is a necessary component in the effective translation of advancements in neuroscience to clinical practice and public discourse. Society’s immense investment in biomedical science and technology, in conjunction with an increasingly diverse socio-cultural landscape, necessitates the study of how potential discoveries in neurodegenerative diseases such as Alzheimer disease are perceived and utilized across cultures. Building on the work of neuroscientists, ethicists and philosophers, we argue that the growing field of neuroethics provides a pragmatic and constructive pathway to guide advancements in neuroscience in a manner that is culturally nuanced and relevant. Here we review a case study of one issue in culturally oriented neuroscience research where it is evident that traditional research ethics must be broadened and the values and needs of diverse populations considered for meaningful and relevant research practices. A global approach to neuroethics has the potential to furnish critical engagement with cultural considerations of advancements in neuroscience.

The Moral Psychology of Rationing Among Physicians: The Role of Harm and Fairness Intuitions in Physician Objections to Cost-Effectiveness and Cost-Containment” (Ryan Antiel, Farr Curlin, Katherine James, and Jon Filbert)

Physicians vary in their moral judgments about health care costs. Social intuitionism posits that moral judgments arise from gut instincts, called “moral foundations.” The objective of this study was to determine if “harm” and “fairness” intuitions can explain physicians’ judgments about cost-containment in U.S. health care and using cost-effectiveness data in practice, as well as the relative importance of those intuitions compared to “purity”, “authority” and “ingroup” in cost-related judgments.

At the Borders of Medical Reasoning: Aetiological and Ontological Challenges of Medically Unexplained Symptoms” (Thor Eriksen, Roger Kerry, Stephen Mumford, Svwin Lie, and Rani Anjum)

Medically unexplained symptoms (MUS) remain recalcitrant to the medical profession, proving less suitable for homogenic treatment with respect to their aetiology, taxonomy and diagnosis. While the majority of existing medical research methods are designed for large scale population data and sufficiently homogenous groups, MUS are characterised by their heterogenic and complex nature. As a result, MUS seem to resist medical scrutiny in a way that other conditions do not. This paper approaches the problem of MUS from a philosophical point of view. The aim is to first consider the epistemological problem of MUS in a wider ontological and phenomenological context, particularly in relation to causation. Second, the paper links current medical practice to certain ontological assumptions. Finally, the outlines of an alternative ontology of causation are offered which place characteristic features of MUS, such as genuine complexity, context-sensitivity, holism and medical uniqueness at the centre of any causal set-up, and not only for MUS. This alternative ontology provides a framework in which to better understand complex medical conditions in relation to both their nature and their associated research activity.

An Ethnomethodological Approach to Examine Exploitation in the Context of Capacity, Trust and Experience of Commercial Surrogacy in India” (Sheela Saravanan)

 The socio-ethical concerns regarding exploitation in commercial surrogacy are premised on asymmetric vulnerability and the commercialization of women’s reproductive capacity to suit individualistic motives. In examining the exploitation argument, this article reviews the social contract theory that describes an individual as an ‘economic man’ with moral and/or political motivations to satisfy individual desires. This study considers the critique by feminists, who argue that patriarchal and medical control prevails in the surrogacy contracts. It also explores the exploitative dynamics amongst actors in the light of Baier’s conceptualization of trust and human relationship, within which both justice and exploitation thrive, and Foucault’s concept of bio-power. Drawing on these concepts, this paper aims to investigate the manifestations of exploitation in commercial surrogacy in the context of trust, power and experiences of actors, using a case study of one clinic in India. The actors’ experiences are evaluated at different stages of the surrogacy process: recruitment, medical procedures, living in the surrogate home, bonding with the child and amongst actors, financial dealings, relinquishment and post-relinquishment.

This study applies ethnomethodology to identify phenomena as perceived by the actors in a situation, giving importance to their interpretations of the rules that make collective activity possible. The methods include semi-structured interviews, discussions, participant observation and explanation of the phenomena from the actors’ perspectives. Between August 2009 and April 2010, 13 surrogate mothers (SMs), 4 intended parents (IPs) and 2 medical practitioners (MPs) from one clinic in Western India were interviewed.

This study reveals that asymmetries of capacity amongst the MPs, SMs, IPs and surrogate agents (SAs) lead to a network of trust and designation of powers through rules, bringing out the relevance of Baier’s conceptualization of asymmetric vulnerability, trust and potential exploitation in human relationships. The IPs are exploited, especially in monetary terms. The SMs are relatively the most exploited, given their vulnerability. Their remuneration through surrogacy is significant for them, and their acquired knowledge as ex-surrogates is used for their own benefit and for exploiting others. Foucault’s conceptualization of power is hence relevant, since the ex-SMs re-invest the power of their exploitative experience in exploiting others.

Further articles of interest in the December issue of PEH include studies of avian influenza, antiretroviral treatment and public health in Chad, and cardiovascular medical practice.

December’s issue of Medical Humanities featured the first in a series of the journal’s future collaborations with Sexually Transmitted Infections and Journal of Medical Ethics.  Hannah Quirk’s introduction to this special section on criminalizing contagion laid out the theoretical and practical intersections of law and disease, which were elaborated in Daniel Grace’s “Legislative Epidemics: The Role of Model Law in the Transnational Trend to Criminalise HIV transmission” and in Patrick O’Byrne, Alyssa Bryan, and Marie Roy’s “HIV Criminal Prosecutions and Public Health: An Examination of the Empirical Research.”  Additional articles of interest to Somatosphere readers include:

“‘Miscarriage or abortion?’  Understanding the Medical Language of Pregnancy Loss in Britain; A Historical Perspective” (Andrew Moscrop)

Clinical language applied to early pregnancy loss changed in late twentieth century Britain when doctors consciously began using the term ‘miscarriage’ instead of ‘abortion’ to refer to this subject. Medical professionals at the time and since have claimed this change as an intuitive empathic response to women’s experiences. However, a reading of medical journals and textbooks from the era reveals how the change in clinical language reflected legal, technological, professional and social developments. The shift in language is better understood in the context of these historical developments, rather than as the consequence of more empathic medical care for women who experience miscarriage.

Virtual Plagues and Real-World Pandemics: Reflecting on the Potential for Online Computer Role-Playing Games to Inform Real World Epidemic Research” (Stuart Outlearn)

In the wake of the Corrupted Blood incident, which afflicted the massively multiplayer online computer role-playing game World of Warcraft in 2005, it has been suggested that both, the incident itself and massively multiplayer online computer role-playing games in general, can be utilised to inform and assist real-world epidemic and public health research. In this paper, I engage critically with these claims.

Madness, Childhood Adversity and Narrative Psychiatry: Caring and the Moral Imagination” (Philip Thomas and Eleanor Longden)

The dominance of technological paradigms within psychiatry creates moral and ethical tensions over how to engage with the interpersonal narratives of those experiencing mental distress. This paper argues that such paradigms are poorly suited for fostering principled responses to human suffering, and proposes an alternative approach that considers a view of relationships based in feminist theories about the nature of caring. Four primary characteristics are presented which distinguish caring from technological paradigms: (1) a concern with the particular nature of contexts, (2) embodied practice, (3) the dialogical basis of caring and (4) the existential basis of caring. From this we explore the role of the moral imagination and our ability, through narrative, to acknowledge, engage with and bear witness to the injustices that shape the lives of those who suffer. This, we argue, is at the heart of caring. Clinical implications are discussed, including an exposition of the importance of narrative in recovery from trauma and distress. Narrative Psychiatry, The Sanctuary Model of care, and Soteria, are outlined as examples of this type of practice.

In keeping with some of the primary themes in this installment of “In the Journals,” the November issue of Sociology of Health & Illness included several pieces relating to disability, ethics, and risk, such as:

Neuroscientists’ Everyday Experiences of Ethics: The Interplay of Regulatory, Professional, Personal and Tangible Ethical Spheres” (Caragh Brosnan, Alan Cribb, Steven Wainwright, and Clare Williams)

The ethical issues neuroscience raises are subject to increasing attention, exemplified in the emergence of the discipline neuroethics. While the moral implications of neurotechnological developments are often discussed, less is known about how ethics intersects with everyday work in neuroscience and how scientists themselves perceive the ethics of their research. Drawing on observation and interviews with members of one UK group conducting neuroscience research at both the laboratory bench and in the clinic, this article examines what ethics meant to these researchers and delineates four specific types of ethics that shaped their day-to-day work: regulatory, professional, personal and tangible. While the first three categories are similar to those identified elsewhere in sociological work on scientific and clinical ethics, the notion of ‘tangible ethics’ emerged by attending to everyday practice, in which these scientists’ discursive distinctions between right and wrong were sometimes challenged. The findings shed light on how ethical positions produce and are, in turn, produced by scientific practice. Informing sociological understandings of neuroscience, they also throw the category of neuroscience and its ethical specificity into question, given that members of this group did not experience their work as raising issues that were distinctly neuro-ethical.

Politics of Love: Narrative Structures, Intertextuality and Social Agency in the Narratives of Parents with Disabled Children” (Halvor Hanisch)

Recent research has highlighted how parental narratives can be important in the resistance against disabling processes. This article contains analyses of enabling language in narratives published by Scandinavian disability rights organizations. First, drawing on the work of Fisher and Goodley, I point out that the material constitute a threefold: normality narratives, resistance narratives, and narratives that demonstrate an appreciation of the present and the child’s individual alterity. Second, I demonstrate that the last narrative draws on Romanticism rather than linguistic resources from disability culture. Third, I show that these narratives are hyperboles – texts that strengthen and emphasise the valuation to the point where the narrative structure transcends narrative consistency. Fourth, drawing on the work of Kristeva, I argue that this form of narration constitutes an intimate politics of love.

The Innovation Journey of Genomics and Asthma Research” (Lise Bitsch and Dirk Stemerding)

This article concerns the transformative potential of medical genomics for common disease research. We analysed 13 review articles in asthma research in the period 1999 to 2008. Our aim was to understand how genomics has emerged in this research field, and the attendant changes. Motivated by Lippman’s geneticisation thesis, we use the concept of an ‘innovation journey’ to trace how expectations of improved understanding, prevention, diagnosis and treatment structure a dynamic co-evolutionary process through which a genome-based discourse emerges. We show how the asthma researchers involved continuously struggle to define their contribution to asthma research, as well as to clinical practice. Along the way, the researchers propose changes to both the definition and the aetiological model of asthma, thus highlighting gene–gene and gene–environment interactions. It is, however, difficult to characterise this discourse as one of geneticisation. With increasing attention being given to epigenetics, metabolomics, proteomics and systems biology, the emerging picture suggests an important, but much less deterministic, role for genes.

Kinscapes, Timescapes and Genescapes: Families Living with Genetic Risk” (Paul Atkinson, Katie Featherstone, and Maggie Gregory)

This article synthesises recent research examining how families live with genetic risk and the processes of genetic decision-making and disclosure among family members who have been or are at risk of transmitting a familial genetic condition. Its aim is to generate substantive theory that can inform our understanding of the interactional processes at work in the distribution of mutual knowledge and awareness of genetic risk in families. The article is structured around three interrelated concepts. Kinscape refers to the constellation of relations and relatedness that are recognised practically; timescape to the multiple temporal frames of social relations and their transformation and genescape to the constellation of knowledge, belief and practice surrounding genetic inheritance. All three concepts are simultaneously natural and cultural. Their intersections create the conditions of kinship and genetics.

Overeducation and Depressive Symptoms: Diminishing Mental Health Returns to Education” (Piet Bracke, Elise Pattyn, and Olaf von dem Knesebeck)

In general, well-educated people enjoy better mental health than those with less education. As a result, some wonder whether there are limits to the mental health benefits of education. Inspired by the literature on the expansion of tertiary education, this article explores marginal mental health returns to education and studies the mental health status of overeducated people. To enhance the validity of the findings we use two indicators of educational attainment – years of education and ISCED97 categories – and two objective indicators of overeducation (the realised matches method and the job analyst method) in a sample of the working population of 25 European countries (unweighted sample N = 19,089). Depression is measured using an eight-item version of the CES-D scale. We find diminishing mental health returns to education. In addition, overeducated people report more depression symptoms. Both findings hold irrespective of the indicators used. The results must be interpreted in the light of the enduring expansion of education, as our findings show that the discussion of the relevance of the human capital perspective, and the diploma disease view on the relationship between education and modern society, is not obsolete.

Additional articles included Michael Coffey’s piece on time and discharge in forensic psychiatry, Mathieu Savage, Alex Dumas, and Stephen Stuart’s piece on cardiac rehabilitation and socioeconomic status in Canada, and Robert Wyrod’s “Dialectics of Gender and Health: The Case of HIV Serodiscordance.”

Relevant articles from December’s Social Studies of Science include:

When the Spread of Disease Becomes a Global Event: The Classification of Pandemics” (Sudeepa Abeysinghe)

The classification of novel disease events is central to public health action surrounding them. Drawing upon the sociology of scientific classification, this article examines the role and contestation of the World Health Organization’s Pandemic Alert Phases, as applied to the spread of 2009/10 H1N1 Influenza. The analysis of World Health Organization texts, including policy documents, public statements and epidemiological documents, has been utilized to examine the Organization’s actions and public narratives around the event of H1N1. Analytically, the functional role of such classificatory schemes and the social construction of scientific classifications are examined. It is argued that in understanding the World Health Organization’s 2009/10 application of the Pandemic Alert Phases, the critical limitation of the functions served by the classificatory scheme led to the breakdown of its construction. This case study highlights the importance of classification for the successful production of scientific ‘facts’, the constructed nature of classificatory systems and the potential for contestation that arises when such classifications do not adequately fulfill their functional roles.

Straight from the Source: Accounting for Scientific Success” (Erin Leahey and Cindy Cain)

How do highly cited scientists account for their success? A number of approaches have been used to explain scientific success, but none incorporates scientists’ own understandings, which are critical to a complete, process-oriented explanation. We remedy this oversight by incorporating scientists’ own descriptions of the value of their work, as reflected in essays written by authors of highly cited articles (‘Citation Classics’). As cultural objects, these essays reveal not only factors perceived to be associated with success but also reflect narrative conventions, and thereby elucidate the culture surrounding success. We enlist Charles Ragin’s Qualitative Comparative Analysis to analyze how factors mentioned in these accounts work in conjunction. Our results show that three ingredients – relationships, usefulness to others, and overcoming challenges – are found in a large majority of scientific success stories.

Finally, American Anthropologist rounded out December’s collection of fantastic articles with Vania Smith-Oka’s “Managing Labor and Delivery among Impoverished Populations in Mexico: Cervical Examinations as Bureaucratic Practice,” as described in the abstract below:

Birthing experiences for low-income and marginalized women have frequently been framed within explanatory models of authoritative knowledge and power dynamics. Many of these explanatory models have pointed out the structural violence inherent in the biomedical model of birth. The research on which this article is based suggests that clinicians’ stressful work environment and class-based stereotypes of low-income women resulted in the routinizing of inhumane medical practices. Hospital overcrowding due to health reforms led to clinicians being primarily concerned with moving patients swiftly through the system. Clinicians increasingly relied on the cervical examination as a marker for labor’s progress and a shorthand method to track cervical dilation. Using ethnographic data collected in the obstetrics ward of a public hospital in Mexico, in this article I explore the emergence of a bureaucratic routinizing of obstetricians’ everyday practice. I provide a new understanding of the encoding and entrenching of everyday medical practices and their effect on the reproductive rights of women.

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