Beyond the “Therapeutic Misconceptions”: Research, Care and Moral Friction
Sarah Wadmann and Klaus Hoeyer
In research ethics regulation, health care and research are depicted as serving distinct goals, and policies are in place to prevent what is seen as patients’ misconceived understanding of research as health care. On the basis of ethnographic research in four Danish hospitals in conjunction with a cardiovascular drug trial in patients with chronic disease, we argue that the objectives of health care and research often merge in mutually constitutive practices. We build on observations of trial activities, interviews with physician-investigators, research nurses, patient-participants and trial sponsors and a survey of the patient-participants. We found an organization of clinical drug trials allowing extraordinary care relationships to form, which makes trial participation attractive for patients and allows information to flow more freely. However, the research-care intermingling generates moral concerns for those involved. We conceptualize these concerns as a productive moral friction resulting from research staff caring too much for patients. We identify four situations in which friction arises: when care-giving comes to replace specialist contact, when caring for individuals appears unfair for the collective, when care motives may be doubted and when patients invent their own ways of helping staff in order to reciprocate their care. We conclude that the presentation of the research-care tension as an ethical dilemma is misleading and even part of the problem that must be dealt with by those involved.
Patients’ Attitudes Towards Animal Testing: “To conduct research on animals is, I suppose, a necessary evil”
Malin Masterston, Tobias Renberg, and Sofia Kälvemark Sporrong
A strong argument for the practice of animal testing in medical research is the potential benefit to patients in getting improved pain relief, minimising morbidity and mortality. However, patients’ opinions on the ethics of animal testing are seldom sought, despite their role as principal stakeholders. This study compared the attitudes of patients and researchers on animal testing. Focus-group interviews were held with patients suffering from chronic inflammatory diseases, resulting in a questionnaire that was distributed January–May 2011. The questionnaire was posted to patient members of the Swedish Rheumatism Association (n=1195) and to all scientific experts serving on Ethical Review Boards in Sweden (n=364), with response rates of 65 per cent and 60 per cent, respectively. Results show that patients hold a positive stance towards animal testing, but with many caveats, and the level of support is comparable to those held by the general public found in national surveys. A clear majority of researchers were positive towards animal testing, and large statistical differences between patients and researchers were found regarding their attitudes towards testing animals commonly held as pets (P<0.001). Women were more critical than men regarding which species are used for what purposes (P<0.001). Researchers need to be aware that their more positive attitude towards animal testing is not shared to an equal degree with patients, who are the intended end-users and beneficiaries of medical research. The moral basis for using animals in research needs to be further discussed by all stakeholders.
This article explores the experience of lesbians seeking gestation by means of reproductive technologies involving donor insemination and two biological mothers: one who provides the eggs and the other who carries the embryo in her womb. This model is called Reception of Oocytes from Partner (ROPA). This article considers the processes that are required for this procedure in Brazil. It is a study carried out from in-depth, semi-structured interviews with five lesbian couples in Sao Paulo, in 2011. Cultural changes in the paths to the construction of a family by means of biomedicine can be characterized by the formulation of a reflective style of project that repeatedly reconsiders the data in search of its ultimate feasibility. The study reveals the desire to involve both partners, the importance of donor health history and the connection to the families of origin.
Early Prevention of Antisocial Behavior (ASB): A Comparative Ethical Analysis of Psychosocial and Biomedical Approaches
Dorothee Horstkötter, Ron Berghmans, and Guido de Wert
Scientific research regarding juvenile delinquency increasingly emphasizes the importance of early identification of at-risk children and early preventive interventions. Recent developments in the life sciences give a special boost to this development. The corresponding ethical discussion, however, seems to be characterized by a remarkable discrepancy. Life science approaches toward antisocial behavior (ASB) are frequently confronted by controversial discussions as to their ethical, social and legal implications. By contrast, ethics hardly takes notice of currently existing early ASB prevention practices that largely result from social sciences. This article investigates whether biomedical approaches are indeed ethically more problematic or whether instead this gap in the ethical debate manifests undue “bio-exceptionalism”. To this end, existing ASB prevention practices and potential biomedically informed future developments are presented and discussed. A series of potential drawbacks, as highlighted in bioethics, are reviewed; and whether, when and how far these might also apply to established psychosocial practices will be explored. We conclude that negative ethical implications might result from all kinds of early screening and prevention practices irrespective of their disciplinary origin. Therefore, it is a moral imperative to include not only future biomedical developments in ethical research, but to critically investigate current psychosocial practices as well.
“The Risk of Bioweapons Use: Considering the Evidence Base”
There are some weapons deemed so abhorrent that the international community has agreed to eliminate them completely. The first of these was biological weapons. Their use was banned in 1925; their development, production and stockpiling in 1972. Yet concerns about these weapons have not gone away. Indeed, post 9/11 and the anthrax letters, the political attention to them has increased despite what seems to be a very weak evidence base. This roundtable asks four leading biological disarmament and non-proliferation experts their views on the risk of bioweapons proliferation and use, the strength of the taboo and prohibition against the use of biology to sicken and kill people, and the responsibility of life scientists in this regard.
Body & Society
Having an Anthropocene Body: Hydrocarbons, Biofuels and Metabolism
What does it mean to have an Anthropocene body? The Anthropocene period is putatively defined by flows of hydrocarbons and hydrocarbon derivatives (fuels, plastics, fertilizers, etc.), and the very term ‘Anthropocene’ suggests an increasing awareness of the finitude and contingency of contemporary corporealities. This article explores the idea of modelling an Anthropocene body as a living/non-living metabolic process. While identifying bodies with molecules raises a host of problems, metabolism and hydrocarbon biomolecules display a gamut of forms of possession and ways of having a body. Conversion between living and non-living forms of possession can be traced in contemporary genomic science and particularly in synthetic biology as they engineer microbes to produce next-generation biofuels. In contrast to fossil fuels, these fuels derive from genomically re-engineered microbes that digest biomass or photosynthesize to produce hydrocarbons. The problematic contemporary production of these fuels might help us to articulate what it means to have a body as a metabolic manifold of living and non-living forms of possession.
Our use of artefacts has at different moments been characterised as either replacing or impoverishing our natural human capacities, or a key part of our humanity. This article critically evaluates the conception of the natural invoked by both accounts, and highlights the degree to which engagement with material features of the environment is fundamental to all living things, the closeness of this engagement making any account that seeks to draw a clear boundary between body and artefact problematic. By doing this I seek to clarify the nature of our embodied relationship with various kinds of artefacts; moving from tools to machines to digital interfaces, I consider their differing potentials to be gathered into the body schema, and thus change our embodied horizons of perception and action. While much research currently seeks to facilitate a more ‘natural’ mode of interacting with technology, I argue that such a mode of interaction does not exist outside the particularity of our relationships with specific objects. As a result, rather than trying to cater to supposedly more natural modes of action and perception, future technologies should aim to enrich our experience with new modes, inviting novel relationships that produce new kinds of sensory and other experience.
Making Sense of Domestic Warmth: Affect, Involvement, and Thermoception in Off-grid Homes
Phillip Vannini and Jonathan Taggart
Drawing from ethnographic research conducted in Alberta, as well as across multiple sites in Canada, this article describes and discusses the practices and experiences of heating off the grid with renewable resources (i.e. passive solar and wood). Heating with renewable resources is herein examined in order to apprehend the cultural significance of dynamics of corporeal involvement in the process of creating indoor warmth. A distinction between energy for which corporeal involvement is relatively high (hot energy) and relatively low (cool energy) is then made. Off-grid indoor warmth is therefore understood as a hot energy requiring intense involvement. The authors argue that thermoception is a type of affect with catalytic properties.
Consuming the Lama: Transformations of Tibetan Buddhist Bodies
Tanya Maria Zivkovic
Tibetan understandings about the bodies of spiritual teachers or lamas challenge the idea of a singular and bounded form. Tibetan Buddhists believe that the presence of the lama does not depend on their skin-encapsulated temporal body, or a singular lifespan. After death, it is not uncommon for a lama to materialize in other appearances or to become incorporated into the bodies of others through devotees’ consumption of their bodily remains. In this article, I discuss how the European ingestion of the holy bodies of Tibetan lamas creates new possibilities for embodied intersubjectivity, and also how this practice repositions bodily substance in cannibal discourse.
Culture, Medicine and Psychiatry
Social Vulnerability in Paediatric Dentistry: An Overview of Ethical Considerations of Therapeutic Patient Education
Thomas Trentesaux, Caroline Delfosse, Monique Marie Rousset, Christian Hervê, and Olivier Hamel
Dental caries is a multifactorial condition that remains a major public health issue in high income countries. The prevalence of dental caries in children has markedly declined in most countries over the past 30 years. However, the disease continues to affect a vulnerable population defined as a high-risk group. As many public health policies are inefficient in dealing with this underprivileged group, it is necessary to find other strategies to decrease the incidence and the burden of dental caries. Defining dental caries as a chronic disease enables us to develop the concept of ‘therapeutic patient education.’ It is meant to train patients to self-manage or adapt treatment to their particular chronic disease and to cope with new processes and skills. The purpose of this paper is to propose a new approach to dental caries, in particular to early childhood caries. That should decrease the gravity and prevalence of the disease in this specific population. As a result, this new approach could increase the quality of life of many children both in terms of function and aesthetics.
Parenthood in Migration: How to Face Vulnerability
Marie Rose Moro
Whether they are African or Asian, the children of immigrant families live in situations in which they may be exposed to serious trauma. Immigrant families themselves often live in extreme conditions. Although research has described these conditions, intervention is still inadequate. These families need not only medical or psychological treatment but also basic needs for survival such as food, shelter, a place to sleep, a place to bury their dead. However, the psychological care of immigrant children and their families has much to teach us. We set out here to share what we have learned about immigrant families with infants.
Specificities of situation of individuals with multiple disabilities and pediatric neurological pathologies call for specialized and multi-field competences that are commonly allowed and disallowed in contemporary clinical contexts. However what must be questioned in this matter is not only the meaning of the clinical, social, and human approach that is implemented, but also its spirit. The aim of medicine is double: to offer a technoscientific capacity (to cure as much as it is possible and always relieve suffering) and guarantee the meaning and value of the child’s human and social capacities. We suggest the importance of a medicine always as care-giving whose aim(s) can be either curative or palliative, or even both at the same time with possibilities for moving back and forth between each one, is easily understandable by all professional groups and patients. It is not at the time of the death, at the last moments, that we will be able to introduce what could have given meaning, spirit and comfort in life. It is very early in the life, in the approach of care, to precisely preserve a meaning of life and to take adapted and shared care as a precious tool that we will propose to the patients, to the parents, and to the professionals. Palliative medicine can support a caring and human approach that takes account of the handicapped child’s vulnerabilities not only at the end of his life, but throughout his/her life. The palliative approach and reasoning approach requires a specific, adapted training and the development of shared knowledge. Without giving up the indisputable contributions of the Evidence-Based Medicine (EBM), it is necessary to develop, in a scientific way, what we could call Human-Based Medicine (HBM).
Considering Ethics, Aesthetics and the Dignity of the Individual
Aline Strebler and Claude Valentin
There are variations on vulnerability that are often based on opposing authorities. In his book Parcours de la reconnaissance, Paul Ricœur offers a reflection grounded in a survey from Aristotle to Levinas, with way stations in phenomenology, from Hegel to Husserl. He sketches the silhouette of capable man. In a reversal of thinking and positioning, weakness, which could be considered the hallmark of disability in all its forms, becomes a source of mutual wealth and an argument in favour of reciprocity and dialogue. Relying on clinical examples, we propose art as a mediator of the doctor–patient relationship, which in its present unique form forces us to question the dynamics of empathy.
The Aphasic Patient: Vulnerability and/or Exclusion
The aim of this article is to account for the vulnerability of the patient/subject affected by aphasia, the loss of acquired language in adults. In the case of a sudden onset of aphasia, the patient is often aware of his/her disorder from the very onset of the impairment. Vulnerability also affects patients suffering from progressive aphasia, mainly due to a collapse of the various components of memory. After describing the main types of aphasia in broad outline, the study focuses on the isolation and exclusion that they generate, starting from a brief study of the emotional impact of the impairment on the language-deprived subject. This will be related to the patient’s awareness of the disorder and the notion of awareness in structuring and using language, considered as the expression of thought. Finally, given that aphasia leads to the loss of employment, patients enter a phase of social vulnerability. Their speech is perceived as strange or even “foreign” by others in ordinary communicative contexts. What solutions can be proposed to overcome this state of vulnerability and exclusion, which is often felt to be insoluble by the patients themselves?
The Poetics of Therapeutic Practice: Motivational Interviewing and the Powers of Pause
E. Summerson Carr and Yvonne Smith
Motivational interviewing (MI) is an increasingly prominent behavioral therapy that draws from and claims to synthesize two American therapeutic traditions long thought to be antithetical—“client-centered” and “directive” approaches. This paper proposes that MI achieves its hallmark “client-centered directiveness” through the aesthetic management of the therapeutic encounter, and more particularly, through MI practitioners’ marked use of silence. Drawing on data collected during the ethnographic study of MI trainings and the formal analysis of video-recorded MI sessions that are commonly used as models in such trainings, we identify three patterns of pause that regularly fall at specific grammatical junctures within seasoned MI practitioners’ turns-at-talk. We demonstrate how these pauses allow MI practitioners to subtly direct the conversation while simultaneously displaying unequivocal signs of client-centeredness. In other words, we show how and explain why the poetics of pause matter to MI. In presenting this case, we more generally highlight practice poetics—that is, the aesthetic management of the style and delivery of a professional message with a particular practical aim in mind—suggesting that this is a central if under-appreciated aspect of therapeutic practices.
In June 2012, the news of a Chinese woman’s forced late-term abortion quickly spread across the internet in China. Graphic photos of the woman with the aborted fetus provoked public outrage and widespread condemnation on social media sites. In the aftermath, local authorities apologized, seven officials were given demerits, and the couple received monetary compensation. This case was put under the spotlight mainly because of the exposure of the story by family members of the woman through social media and the resulting public outcry in cyberspace. Following the disclosure of this story and public reactions online, this article explores the complex interplays among different layers of state power, the individual, and the public in reproductive politics, and discusses the ways in which social media has been utilized to resist state control of reproduction. By delving into the nuanced interactions among layers of state authorities, this article sheds light on the study of state–society relations in reproductive politics. It also calls attention to the role that social media plays in reproductive issues.
This study examines how Muslim religious leaders (imams) introduce the liberal notion of disability to their communities in Israel. The project described, initiated and supported by an American NGO, provides a case for exploring how the secular notion of disability rights is cast and recast in a Muslim world of meaning. It focuses on the mediation strategy that I call modular translation, employed by imams in sermons delivered for the purpose of altering or improving the status and conditions of people with disabilities. This strategy, as it emerged from the analysis, entails decoupling norms of conduct from their underlying justifications. It thus suggests that norms of conduct are open to change so long as the believers’ cosmology remains intact. As such, this turn may offer new avenues of thinking and acting about globalizing human rights within the arena of health and disability.
East Asian Science, Technology, & Society
Opening with a contrast between the pulse-reading practices of traditional Chinese medicine doctors in clinics and the objective data on pulses provided by the electronic pulsometer, this discussion analyzes the qualitative judgments involved in medical diagnosis and therapy. Working clinicians who discern and classify pathological processes employ a semiotics of qualities to establish the value, or practical and ethical significance, of bodily signs. The embodied perceptiveness of pulse reading in Chinese medicine is thus understood as an engagement with qualities. As such, it narrows the field of qualities available to the touch in conventional and historically authorized ways, while still relying on a qualitative excess. In spite of a widespread interest in providing objectively proven, evidence-based medicine both in China and in North America, this article suggests that it is in the nature of clinical work everywhere ultimately to prefer a qualitative semiotics that exceeds standardized classification and quantification.
Various attempts at language standardization have been central in efforts to integrate Chinese medicine into a global, mainstream medical framework. At the same time, language has also proven critical in efforts to integrate Chinese medicine into personal frameworks of meaning as students around the globe grapple with multiple translations. In an effort to convey some of these diverse experiences of standardization and plurality of translations, this article offers four “snapshots” in the life of language standardization in Chinese medicine. These snapshots are derived from extensive, multisited ethnographic research conducted over four years in diverse settings in both China and the United States. The article thus offers an appreciation of standardization as an ongoing series of human encounters, a complex web of human networks shaping the always changing answers to seemingly simple questions about the motivations behind standardization, the methods used to create standards, and the implications of standards in an increasingly “global” Chinese medicine. As such, it contributes to an emerging “anthropology of translation” that underscores the role of human relationships, power, understanding, and interaction in translation.
This article examines the making of a national medicine in Vietnam. How can it be that the medical traditions in Vietnam came to be described as Vietnamese during the course of the twentieth century? In this article, I suggest that historical contingencies in Vietnam have facilitated what might be thought of as a “doctrine of combination,” somewhat in contrast to the institutionalized and contentious separation of, for example, Chinese and Korean medicine from modern medicine. In particular, I show how when it came to traditional medicine, Hồ Chí Minh and the people around him responsible for health-care-related issues were on the “offensive” from the very outset of their nation-building efforts.
The Reformulation Regime in Drug Discovery: Revising Polyherbals and Property Rights in the Ayurvedic Industry
Laurent Pordié and Jean-Paul Gaudillière
In so-called traditional medicine in South Asia, substances have not ordinarily been prescribed or consumed in isolation, yet the transformations of compound formulations have been comparatively little studied from any position within anthropology or history. Since the early twentieth century, ayurvedic formulations have often been redesigned to address the biomedical disorders of a new global clientele. This has involved overlapping medical cultures and the creation of heterodox epistemologies, which have then allowed the creation of new “traditional” products that suit the demands of the market. In India, these new formulations fall under the category of “Ayurvedic Proprietary Medicines,” which are distinct from classical, textual (shastric) formulations already in the public domain. Proprietary medicines are the object of specific systems of appropriation and protection, which have not only gained central stage in the country but also influenced international regulatory bodies. This article seeks to explore the way in which the “reformulation regime” has fostered the emergence of alternative models of property rights, and their global acceptance, as well as how, in turn, these new forms of property have today come to drive pharmaceutical innovation itself. By analyzing this “looping effect,” this article sets out prospective avenues to study the industrialization of traditional medicine and the complex interface between regulatory systems, innovation processes, and the market.
In the normative health care discourse, safety is represented as a concept that is at once universal, irrefutable, and inherently beneficent. Yet, research at local levels in the Philippines challenges these assumptions embedded in the biomedical construction of safety. This article examines how the imposition of a biomedical construction of safety onto a given local group, which does not share this construction of safety, can affect the local group. Specifically, this article examines the application of the biomedical construction of safety to the regulation and control of local nonbiomedical practices and practitioners in the rural Philippines. This twenty-two-month field research was carried out through interviews, focus groups, and participant observation within communities of four rural municipalities in the Philippines and with stakeholders at state and multilateral levels. The case study of the implementation of safe delivery through the insistence on in-facility birthing with “skilled birth attendants” and the cessation of training for traditional birth attendants provides an illustrative example of the need for more nuanced and complex understandings of safety and risk within any given context. This research identifies that the enforcement of an etic conception of safety onto any given group can, ultimately, compromise the safety of that group.
During the first decade of the twenty-first century, a network composed of politicians, regulators, bioscientists, clinical researchers, and Chinese medicine specialists has emerged that seeks to bridge an imagined gulf between the modern West and ancient China in order to create a new type of personalized medicine. The central building block of this bridge is the Chinese medical concept of zheng 證/証, variously translated into English as syndrome, pattern, or type. My paper places side by side two different genealogies of how zheng assumed this central role. The first genealogy examines the process by means of which zheng came to be considered as something shared by both ancient China and cutting-edge biological science and, by extension, how it manages to hold together the entire institutional, political, and economic framework into which this bridge is embedded and which it co-creates. The second genealogy shows zheng to be central to a much older series of redefinitions of Chinese medicine and Chinese medical practice that extend from the eleventh century to the present. Read together, these two genealogies—neither of which should be seen as exhaustive—raise three important issues that are further discussed in the conclusion of the paper. First, I explore how the concept of zheng has come to tie a medical tradition derided by its adversaries for being a pseudoscience to one of the most cutting-edge fields of bioscience research. I ask what is at stake in this synthesis, for whom, and why, and how it transforms Chinese medicine and/or systems biology along the way. Second, I am interested in finding out how and why the very same concept can be at the heart of two apparently agonistic visions of Chinese medicine’s future as it is popularly imagined in China today. Finally, I insist that the medical humanities need to become actively involved in the construction of emergent articulations such as the ones I am exploring. Merely writing a history of the present will not be productive unless its critique can somehow be articulated into the very processes of emergence that historians or anthropologists seek to examine.
Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine
Drawing on evidence from the Framingham Heart Study, Christakis and Fowler in their 2007 article published in the New England Journal of Medicine make the claim that obesity spreads in social networks. Whether they are correct in this assertion is neither the concern nor focus of this article. Rather, what is of interest is the subsequent mobilisation of ‘contagion’ to describe this spread and to account for the emergence of an ‘obesity epidemic’ in contemporary society. Contrary to the argument that there is less stigma attached to obesity, the reporting of the Christakis and Fowler article suggests that being ‘fat’ remains a signifier of moral and physical decay; if we add to this the suggestion that obesity is spread within social networks, it is possible that the stigma associated with body size will begin to mirror that which is attached to other infectious bodies. In order to consider the potential implications of this, the article develops in three directions: it explores the application of contagion as a metaphor for understanding the spread of obesity; it sets this understanding within the context of scholarship on contagion and it draws on critical obesity studies literature to call for a more cautionary approach to be taken when deploying a term that when combined with pre-emptive public health discourse would add significantly to the pathologising of the corpulent, fat or obese body.
The Management of Situated Risk: A Parental Perspective on Child Food Allergy
Marie-Louise Stjerna, Mirja Vetander, Magnus Wickman, and Sonja Olin Lauritzen
Food allergy is an illness that requires constant risk management in everyday life. To date, there is no cure or preventive treatment, and the only way to manage the condition is therefore careful avoidance of the offending foodstuff and treatment of reactions when they occur. This article draws on a socio-cultural approach to explore parents’ understandings and management of child food allergy in the context of everyday life, as ‘situated’ risk. A focus group study was carried out with 31 parents of children diagnosed with food allergy at two children’s hospitals. The analysis of the focus group material reveals how the management of allergy risk seems to permeate most aspects of everyday life as well as how the parents draw on a dominant norm of risk avoidance as well as a counter-discourse of calculated risk taking. The patterns of risk management found in this study are discussed in terms of how risk avoidance and risk taking are intertwined and balanced in the context of moral parenthood.
This article, based on qualitative research with working-class men, explores men’s perceptions and experiences regarding gender differences in health. It demonstrates how men put forward a range of behavioural/cultural, materialist/structural and psychosocial factors, which were believed to differently impact men’s health compared to women. A common theme underpinning their explanations was the ways in which men and women were located within two distinct gender categories. These characterisations were used to explain why health-damaging beliefs and behaviours were more prevalent among men and also why men were better suited for certain kinds of jobs, albeit with potential costs to their health. Men also believed that women were protected from the damaging physical and emotional impact of manual employment because of their primary role within the home and because they were less emotionally robust, which required men to shield women from the stresses they experienced. However, men’s emotional withdrawal can also be viewed as another example of how men use whatever resources are available to achieve and maintain dominance over women. Finally, the article demonstrates how a gender- and class-based approach can capture the impact of men’s health-related practices alongside the broader cultural and structural influences on men’s health.
In this article, I am concerned with doctors’ negotiations of the temporal dimension of the diagnostic criteria of depressive disorders during the first psychiatric interview. The data come from 16 initial psychiatric interviews recorded by doctors in three psychiatric hospitals in Poland. Taking a constructionist view of discourse and psychiatric practices, I shall argue that the discursive practice related to temporal information about patients’ illnesses serves in gaining information, which is useful in the medical model of psychiatric diagnosis. The doctors positioned the patients’ experiences on the timeline when the illness history was taken and temporal information authenticated the information. Conversely, the patients’ current conditions were constructed in a limitless present, which allowed the psychiatrists to remove the relativity.
This article considers the fate of Asperger’s disorder in the light of proposals for the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) to collapse Asperger’s disorder along with other pervasive developmental disorders into a general spectrum of autism. It is argued that a powerful lay and scientific culture has evolved around the concept of Asperger’s disorder, which has found a particularly compelling voice over the last decade in the online Asperger community, with websites such as Wrong Planet recruiting tens of thousands of members. In order to assess the impact of these proposed changes on the online Asperger community, 19 threads on the topic of Diagnostic and Statistical Manual of Mental Disorders (5th ed.) are analysed according to the arguments that community members put forward in favour of, or in opposition to, the proposals. Many members embrace the notion of the spectrum and have already coined a new identity – ‘spectrumite’ – to adapt to the diagnostic shift. Others, however, are suspicious of the motives behind the absorption of Asperger’s disorder, and potential threats to the provision of services as well as the strong ‘aspie’ identity that reflects the large literature and the online public sphere around Asperger’s disorder. To what extent this culture poses a challenge to the authority of the Diagnostic and Statistical Manual of Mental Disorders is uncertain at present.
Engineering the Fitness of Older Patients for Chemotherapy: An Exploration of Comprehensive Geriatric Assessment in Practice
Alexandra McCarthy, Peta Cook, and Patsy Yates
Clinicians often report that currently available methods to assess older patients, including standard clinical consultations, do not elicit the information necessary to make an appropriate cancer treatment recommendation for older cancer patients. An increasingly popular way of assessing the potential of older patients to cope with chemotherapy is a Comprehensive Geriatric Assessment. What constitutes Comprehensive Geriatric Assessment, however, is open to interpretation and varies from one setting to another. Furthermore, Comprehensive Geriatric Assessment’s usefulness as a predictor of fitness for chemotherapy and as a determinant of actual treatment is not well understood. In this article, we analyse how Comprehensive Geriatric Assessment was developed for use in a large cancer service in an Australian capital city. Drawing upon Actor–Network Theory, our findings reveal how, during its development, Comprehensive Geriatric Assessment was made both a tool and a science. Furthermore, we briefly explore the tensions that we experienced as scholars who analyse medico-scientific practices and as practitioner–designers charged with improving the very tools we critique. Our study contributes towards geriatric oncology by scrutinising the medicalisation of ageing, unravelling the practices of standardisation and illuminating the multiplicity of ‘fitness for chemotherapy’.
Health and Place
Hot Spots in Mortality from Drug Poisoning in the United States, 2007-2009
Lauren Rossen, Diba Khan, and Margaret Warner
Over the past several years, the death rate associated with drug poisoning has increased by over 300% in the U.S. Drug poisoning mortality varies widely by state, but geographic variation at the substate level has largely not been explored. National mortality data (2007–2009) and small area estimation methods were used to predict age-adjusted death rates due to drug poisoning at the county level, which were then mapped in order to explore: whether drug poisoning mortality clusters by county, and where hot and cold spots occur (i.e., groups of counties that evidence extremely high or low age-adjusted death rates due to drug poisoning). Results highlight several regions of the U.S. where the burden of drug poisoning mortality is especially high. Findings may help inform efforts to address the growing problem of drug poisoning mortality by indicating where the epidemic is concentrated geographically.
Blood, Sex and Trust: The Limits of the Population-Based Risk Management Paradigm
Mike Kesby and Matt Sothern
Blood screening is imperfect so Donor Health Check questionnaires (DHC) are used to defer those whose ‘behaviour’ suggests disproportionate risk of Blood Borne Infection (BBI). Taking the UK case, we compare deferment of three sub-populations with different HIV prevalence; Men-who-have-Sex-with-Men (4.7%), black-Africans (3.7%) and ‘the-general-(heterosexual)-population’ (c.0.09%) arguing that, with respect to STIs, DHC assesses risk based on broad population-level risk-groups not behaviour. This approach relies on an imaginative geography that distances heterosexual risk from the domestic population. Most DHCs knowingly commit the ecological fallacy allowing population-level statistics to obscure within-group diversity, inadequately identifying the risk posed by ‘low-risk-groups’. The disjuncture between ontological risk phenomenon (diverse sexual practice) and the epistemological grid used to map risk (homogenised risk-groups) needs examination. Unpacking the category ‘heterosexual’ would both better differentiate risk within this group and change the relative-risk calculated for ‘high-risk groups’. We call for piloting of practice-based questions and a mixed-method approach to DHCs to more accurately assess all potential donors.
The association between place and poor health, such as chronic disease, is well documented and in recent years has given rise to public health strategies such as place-based initiatives (PBIs). This article reports on the emergence of one such initiative in Australia, in regions identified as culturally diverse and socially disadvantaged. The study draws on the intellectual resources provided by governmentality and actor-network theory to provide insights into the reasons why community actors were excluded from a new governance body established to represent their interests. Risk-thinking and representational politics determined who represented whom in the PBI partnership. Paradoxically, actors representing ‘community’, identified as being ‘at risk’, were excluded from the partnership during its translation because they were also identified as being ‘a risk’. As a consequence, contrary to federal government health and social policy in Australia, it was state government interests rather than the interests of community actors that influenced decisions made in relation to local health planning and the allocation of resources.
Online Social Networking Sites – A Novel Setting for Health Promotion?
Julika Loss, Verena Lindacher, and Janina Curbach
Among adolescents, online social networking sites (SNS) such as Facebook are popular platforms for social interaction and may therefore be considered as ‘novel settings’ that could be exploited for health promotion. In this article, we examine the relevant definitions in health promotion and literature in order to analyze whether key characteristics of ‘settings for health promotion’ and the socio-ecological settings approach can be transferred to SNS. As many of our daily activities have shifted to cyberspace, we argue that online social interaction may gain more importance than geographic closeness for defining a ‘setting’. While exposition to positive references to risk behavior by peers may render the SNS environment detrimental to health, SNS may allow people to create their own content and therefore foster participation. However, those health promotion projects delivered on SNS up until today solely relied on health education directed at end users. It remains unclear how health promotion on SNS can meet other requirements of the settings approach (e.g. building partnerships, changing the environment). As yet, one should be cautious in terming SNS a ‘setting’.
Health, Risk & Society
“I can choose”: The Reflected Prominence of Personal Control in Representations of Health Risk in Canada
Jennifer Lee, Christine Dallaire, Marie-Pierre Markon, Louise Lemyre, Daniel Krewski, and Michelle Turner
Multidisciplinary research has contributed to a better understanding of the personal and societal correlates of risk perception. However, representations of ‘health risk’ remain to be characterised more fully. Drawing on a Canadian study conducted in 2004, an analysis was conducted to develop better characterisations of individual representations of health risk. The study involved a national telephone survey (N = 1503) and face-to-face semi-structured interviews with individuals across Canada (N = 73) in which participants’ representations of health, risk and health risk were elicited using a word association technique. In the telephone survey, it was found that representations of health risk were most frequently negative, with many participants referring to disease and illness. The concept of health risk was also associated with lifestyle, individual control and personal agency, suggesting that individual health behaviour and personal responsibility for health were prominent features of public discourse on health risk in Canada. However, subtle variations in representations of health risk were observed in analyses of semi-structured interviews, pointing to important differences according to age and gender in this specific discourse. There was agreement among participants that health risks were associated with individual vulnerability and menace to life or health, and that such vulnerability increased with age. However, women were less likely to focus on the idea of actively making choices to control health risks and less frequently made references to the positive aspects of health risks.
One-Week Recall of Health Risk Information and Individual Differences in Attention to Bar Charts
Dan Mason, Sue Boase, Theresa Marteau, Ann Louise Kinmouth, Theresa Dahm, Nami Minorikawa, and Stephen Sutton
Presenting personalised health risk information can support lifestyle decisions and help patients make informed choices about treatments. The way such information is presented can influence how well it is understood, and supplementary graphical representations have been shown to be helpful. However, there are little data on longer term recall of risk-related messages presented graphically and on the attention paid to graphics by those trying to interpret risk-related messages. This article draws on two studies in the United Kingdom of risk information recall. In study 1, participants aged 40–65 (N = 570) were given hypothetical personal cardiac risk information via a website, either numerically or supplemented with different types of bar chart. Participants’ recall of the key messages of the communication was assessed 1 week later. Bar charts led to greater recall of a key risk message only among the most numerate participants. Study 2 examined the extent to which participants made use of the graphics in interpreting the numerical information using concurrent verbal protocols. Expert (N = 16 practice nurses) and non-expert (N = 16 general public) participants who read numerical information from the graphics were also more likely to make direct interpretations of the numerical information. The 1-week recall findings from study 1 contrasted with recent empirical findings that graphics aid understanding in lesser numerate individuals. The observational data from study 2 indicated the presence of individual differences in the ways people used graphics to interpret risk information. A closer examination is required of the ways people use descriptive graphical tools when interpreting risk information, and the effect this has on recall of key messages.
‘Thirdhand smoke’, the designated term for the cigarette smoke toxicants that linger on room and car surfaces long after the smoke itself dissipates, is a concept that has gained increasing prominence in tobacco control policy and research over the past six years. In this paper, I track the emergence of thirdhand smoke as a social and scientific concept, conducting a critical analysis of newspaper reports and references to the term in the academic and policy literature. Demonstrating that claims about the health effects of thirdhand smoke occurred in the absence of evidence of harm, I examine the broader sociopolitical conditions that enabled the concept to become meaningful (and useful). I show that some of the concept’s legitimacy came from its presentation as a natural extension of secondhand smoke, and its framing as a particular threat to babies and children. However, I argue that the experiential, embodied dimension of thirdhand smoke itself was crucial to its success.
Counselling Uncertainty: Genetics Professionals’ Accounts of (Non)Directiveness and Trust/Distrust
Michael Arribas-Ayllon and Srikant Sarangi
In genetic counselling, uncertainty is central to the client–professional relationship where decisions are made on the basis of risk information/assessment. For various historical reasons, genetic counsellors adopt an ethos of ‘nondirectiveness’ to communicate risk and offer support without advising their clients on what decisions to reach. However, nondirectiveness remains an ambiguous and contested concept that has acquired a negative meaning of ‘not influencing clients’ or ‘adopting an indifferent stance’. We argue that nondirectiveness also implies a positive sense of acknowledging genetic counselling as a process of influence. Drawing on interview data (n = 25) involving professionals from England and South Wales (UK), accounts of genetic testing indicate a dynamic relationship between managing uncertainty on the one hand and negotiating trust and distrust on the other. In the counselling process, trusting and distrusting are coexisting techniques of assessing clients’ motivations, expectations and reasons for genetic testing. Using rhetorical discourse analysis as our analytical approach, we identify a pattern of accounting whereby professionals justify a directive stance when they are not confident whether clients have considered the uncertainty of the situation. More than a veneer of neutrality and indifference, we argue that nondirectiveness is a technique by which genetics professionals explore whether clients can be trusted to make autonomous decisions within a climate of uncertainty. Eliciting confidence and establishing trust within the context of genetic counselling are enabling, pastoral strategies for configuring risk and emotion.
Australian Mothers’ Notions of Risk and Uncertainty in Relation to Their Pre-Teen Children
Jan Wright, Christine Halse, Gary Levi, Catherine Hartung
In this article we examine the ways discourses of risk manifested and played out within and across two groups of Australian mothers living in two large urban centres in Australia: the first comprised of mothers who had a pre-teen child diagnosed with an eating disorder (n = 13); the second of mothers who had a pre-teen child without the symptoms or diagnosis of an eating disorder (n = 13). In 2011 and 2012, we conducted in-depth interviews with the mothers in their homes on their ideas about health and their relationships with their children. An analysis of the data collected from these interviews indicated that having a pre-teen child diagnosed with an eating disorder had a decisive impact on how the mothers constituted and responded to risk. For mothers, who had a pre-teen child with an eating disorder, risk was intensified by bio-medical discourses. The particular intensifications of risk limited the ways in which mothers could act and often threatened to undermine their abilities as competent carers. By contrast, the mothers who did not have a pre-teen child with an eating disorder spoke about risk less directly, and with less sense of immediacy. Where these mothers acknowledged risk discourses particularly in regard to health, they were in a stronger position to negotiate them. Our analysis indicates that the ways in which mothers responded to risk is contingent on circumstances and contexts. Mothers’ responses to risk were related to the calculability of the risk and their perceived capacity to manage it.