Here are some highlights from last month’s journals. Enjoy!
Contractual dependencies: Disability and the bureaucracy of begging in Kinshasa, Democratic Republic of Congo (open access)
One of the most conspicuous livelihood strategies for physically disabled people in Kinshasa, Democratic Republic of Congo, is a particular style of begging known locally as “doing documents.” Confronted with the stigma of begging, disabled beggars create documents in an attempt to legitimize and regulate begging through formalization and bureaucracy, presenting their relationship with donors as NGO fund‐raising and government tax‐collecting. The dynamics of petitioning for these “contractual dependencies” provide a nuanced perspective on desired dependencies: dependencies can be presented in multiple ways, and people consider some dependencies more legitimate and valuable than others. Recipients are not passive but play a defining role in shaping these relationships, seeking a balance between proximity and desired distance to patrons.
Cultural Anthropology (open access)
Directing the Future of Gene Therapy in Cyprus: Breakthroughs, Subjunctivities, and the Pragmatics of Narrative (open access)
Gene therapy is a technology that involves the introduction of therapeutic genes into humans for the replacement of mutations causing disorders. This article stems from research conducted with a thalassemia patients’ association in Cyprus and explores how political and epistemic uncertainty surrounding the promise of breakthrough in gene therapy is harnessed to particular objectives and narratives for the future. Anthropologists who survey the future largely address the manner in which people orient themselves in conditions of uncertainty through concepts of hope, waiting, patience, and endurance. Less attention has been paid to how people construct and deploy narratives and images of the future in a way that can bridge present immediacy and abstract futurity—a process I call directing the future. The concept I use to elucidate the connections between breakthrough and narrative is that of subjunctivity. In juxtaposing different positionalities that thalassemia patients in Cyprus adopt with regard to the promise of gene therapy, I show that subjunctivity is not only the ability to be receptive to transformation and the possibility of a world otherwise. The intersubjective and political processes out of which subjunctivity and narrative emerge are also the processes by which an otherwise undefined future becomes ordered, and certain images of the future attain more gravity and reality than others.
Special Issue: Mental Health in Domestic Worlds (open access)
Tine M. Gammeltoft & Pauline Oosterhoff
Excerpt: “This special issue of Medical Anthropology calls for more sustained anthropological attention to the ways in which mental health conditions are embedded in domestic worlds. We use the term ‘domestic worlds’ in a heuristic manner, referring to both families and households and treating these units as open structures that are fundamentally shaped by social and political economies.”
Negotiating the Interpretation of Depression Shared Among Kin
Claire Snell-Rood, Richard Merkel & Nancy Schoenberg
Kinship processes contribute to the experience and interpretation of depression—generating empathy as well as silencing. We explore intersubjective experiences of depression among kin with the aim of understanding how depression can reveal kinship expectations and evolving concepts of distress. In interviews with 28 low-income rural Appalachian women about their depression, participants articulated depression as a social process that neither starts nor ends in themselves. Yet kinship obligations to recognize family members’ depression limited women’s ability to admit distress, let alone request care. The intersubjective experience of depression among kin can challenge the individual expression of distress.
Drawing on ethnographic fieldwork in Denmark, primarily among Iraqi women and secondarily among Iraqi men who are either direct or indirect victims of torture, I explore how the memories of torture are distributed in the everyday lives of Danish families originating from Iraq. I argue that torture is folded into kin histories and the everyday work of bearing and resisting painful memories. Consequently, torture affects not only the mental and physical health of the singular survivor, but also the entire texture of kin relatedness around him or her, to the extent that kinship normativity may be disrupted. Leaning on the metaphor of a rugged cloth, I conclude by arguing that the way in which torture makes and unmakes kin relatedness congeals in what I term tattered textures of kinship.
Disentangling Family Life and Hair Pulling: Trichotillomania and Relatedness
Bridget Bradley & Stefan Ecks
Trichotillomania (hair pulling) remains a relatively unknown form of body-focused repetitive behavior (BFRB). Sufferers tend to conceal both the action and its effects from others because of stigmatization, which is strong in both public and domestic spheres. Negative responses from close family members can add significantly to the suffering. Based on fieldwork in the United Kingdom and United States, we explore how hair pulling troubles ties even among close family members. We show why ethnographic methods reveal impacts of hair pulling that structured assessments do not yet capture and argue for a more nuanced study of BFRBs through anthropologies of relatedness.
Domestic Moods: Maternal Mental Health in Northern Vietnam
Tine M. Gammeltoft
In this article I propose the notion of domestic mood as an important concept for mental health research. Drawing on ethnographic fieldwork conducted among women living in Hanoi, Vietnam, I explore the maternal mental health problems that the women reported, focusing particularly on the household tensions and conflicts that made the entry into motherhood a distressful experience. To develop the concept of domestic mood, I draw on Martin Heidegger’s work, particularly his claim that human being is always a being-with. Comprehending maternal mental health problems, I argue, requires that we pay attention not only to individual states of mind, but also to the ways that domestic environments shape people’s moods. Taking this analytical approach, I show how the mental health states of pregnant women and new mothers in Vietnam were inseparable from their husbands’ structural vulnerabilities within kin groups.
Mental Health and the Maintenance of Kinship in South Africa
At the turn of the millennium, people with mental disturbance often lived in circumstances of economic marginalization in South Africa. The historical material of one low-income urban area reveals the place of kin relations and reciprocity in enabling negotiation of a more fluid set of responses to mental illness. In this sociocultural context, “stigma” was not an inevitable reaction to mental illness, and a more complex set of social dynamics could mitigate marginalization. Research on how changing informal care practices relate to state-based community care continues to be important to inform contemporary health reforms.
Who or what has agency in the discussion of antimicrobial resistance in UK news media (2010–2015)? A transitivity analysis
Luke Curtis Collins, Rusi Jaspal, Brigitte Nerlich
The increase in infections resistant to the existing antimicrobial medicines has become a topic of concern for health professionals, policy makers and publics across the globe; however, among the public there is a sense that this is an issue beyond their control. Research has shown that the news media can have a significant role to play in the public’s understanding of science and medicine. In this article, we respond to a call by research councils in the United Kingdom to study antibiotic or antimicrobial resistance as a social phenomenon by providing a linguistic analysis of reporting on this issue in the UK press. We combine transitivity analysis with a social representations framework to determine who and what the social actors are in discussions of antimicrobial resistance in the UK press (2010–2015), as well as which of those social actors are characterised as having agency in the processes around antimicrobial resistance. Findings show that antibiotics and the infections they are designed to treat are instilled with agency, that there is a tension between allocating responsibility to either doctors-as-prescribers or patients-as-users and collectivisation of the general public as an unspecified ‘we’: marginalising livestock farming and pharmaceutical industry responsibilities.
Eating disorders are now often approached as biopsychosocial problems, because they are widely recognised as multifactorial in origin. However, it has been suggested that there is a substantial and unwarranted imbalance within this biopsychosocial framework, with the ‘social’ aspects of the equation relegated to secondary or facilitating factors within treatment contexts. Drawing on data from 12 qualitative interviews with health professionals in a UK region, this article examines the extent to which sociocultural perspectives on eating disorders are valued and explored in eating disorder treatment, with a particular focus on the relationship between eating disorders and gender. As girls/women are widely acknowledged to be disproportionately affected by eating problems, the article draws on feminist perspectives on eating disorders to explore whether the relationships between cultural constructions of femininity and experiences of body/eating distress are actively addressed within treatment. The study reveals high levels of inconsistency in this regard, as while some participants see such issues as central to treatment, others have ‘never really considered’ them before. In addition, the study examines the potential limitations of how such sociocultural issues are conceptualised and addressed, as well as why they might be marginalised in the current climate of evidence-based eating disorder treatment. The article then considers the implications of the findings for thinking about feminist perspectives on eating disorders – and the significance of gender in treatment – at the level of both research and practice.
Understanding each other in the medical encounter: Exploring therapists’ and patients’ understanding of each other’s experiential knowledge through the Imitation Game (open access)
Rik Wehrens, Bethany Hipple Walters
The ability of health-care professionals to understand the lived experiences of their patients has become increasingly important but has been a difficult topic to investigate empirically because it involves two distinctive research strands: interpretative phenomenological analysis and patient–provider communication. While interpretative phenomenological analysis focuses on experiences and illness narratives of patients, but not on therapist’s understanding of those, patient–provider communication surveys focus primarily on effective forms of communication without addressing the actual illness experiences of patients. There is a need for empirical research that combines both strands to investigate not only the experiences of patients but also whether professionals are able to understand these. This study combined both strands by means of a novel research method called the Imitation Game (combined with other qualitative methods). This sociological method was developed to investigate what different social groups know of each other’s lifeworld. It focused on the important domain of eating disorder treatment to investigate whether therapists were able to understand the experiences of their patients and vice versa. This study provides insights into the domains in which therapists and patients were able to develop insights into each other’s experiential knowledge (and where they had difficulties in doing so). The findings also implicate the high potential of the Imitation Game as an interdisciplinary research method. We propose that the Imitation Game may be particularly valuable as a ‘can opener’ that enables the development of in-depth, qualitative insights into the substantive themes that matter in the lifeworlds of patients and therapists.
‘It’s sometimes hard to tell what patients are playing at’: How healthcare professionals make sense of why patients and families complain about care (open access)
Mary Adams, Jill Maben, Glenn Robert
This article draws from sociological and socio-legal studies of dispute between patients and doctors to examine how healthcare professionals made sense of patients’ complaints about healthcare. We analyse 41 discursive interviews with professional healthcare staff working in eight different English National Health Service settings to explore how they made sense of events of complaint and of patients’ (including families’) motives for complaining. We find that for our interviewees, events of patients’ complaining about care were perceived as a breach in fundamental relationships involving patients’ trust or patients’ recognition of their work efforts. We find that interviewees rationalised patients’ motives for complaining in ways that marginalised the content of their concerns. Complaints were most often discussed as coming from patients who were inexpert, distressed or advantage-seeking; accordingly, care professionals hearing their concerns about care positioned themselves as informed decision-makers, empathic listeners or service gate-keepers. We find differences in our interviewees’ rationalisation of patients’ complaining about care to be related to local service contingences rather than to fixed professional differences. We note that it was rare for interviewees to describe complaints raised by patients as grounds for improving the quality of care. Our findings indicate that recent health policy directives promoting a view of complaints as learning opportunities from critical patient/consumers must account for sociological factors that inform both how the agency of patients is envisaged and how professionalism exercised contemporary healthcare work.
Parallel worlds: An ethnography of care in an Afghan maternity hospital
Rachel Arnold, Edwin van Teijlingen, Kath Ryan, Immy Holloway
Aspirations of quality, equitable and respectful care for all women in childbirth have, so far, been unrealised. Sub-optimal care remains the norm in many settings despite decades of substantial investment, the introduction of evidence-based policies, procedures and training programmes. Improving the standard of facility-based care for childbearing women in Afghanistan is an example. This ethnography of a large public Afghan maternity hospital explored the experiences, motivations and constraints of healthcare providers. The aim was to identify barriers and facilitators in the delivery of care. Participant observation, semi-structured interviews, and focus group discussions were used to gather diverse perspectives on childbirth and care between 2010 and 2012. The influences of the sociocultural setting and political economy on facility-based care are discussed in this paper. Under the surface of this maternity hospital, social norms were in conflict with the principles of biomedicine. Contested areas included the control of knowledge, equity and the primary goal of work. The institutional culture was further complicated by pressure from powerful elites. These unseen values and pressures explain much of the disconnection between policy and implementation, education and the everyday behaviours of healthcare providers. Improving the quality of care and equity in Afghan public maternity hospitals will require political will from all stakeholders to acknowledge these issues and find culturally attuned ways to address them. Furthermore, the notion of competing world-views on healthcare has relevance beyond Afghanistan.
Public/private ownership and quality of care: Evidence from Danish nursing homes
Ulf Hjelmara, Yosef Bhatti, Ole Helby, Petersen, Tine Rostgaard, Karsten Vrangbæk
The involvement of private for-profit (FP) and not-for-profit (NFP) providers in the otherwise public delivery of welfare services is gradually changing the Nordic welfare state towards a more market-oriented mode of service delivery. This article examines the relationship between ownership and quality of care in public and private FP and NFP nursing homes in Denmark. The analysis draws on original survey data and administrative registry data (quality inspection reports) for the full population of almost 1000 nursing homes in Denmark. Quality is measured in terms of structural quality, process quality and outcome quality. We find that public nursing homes have a higher structural quality (in terms of, for instance, staffing), while FP providers perform better in terms of process quality (e.g. in the form of individualised care). NFP providers perform well in terms of structural criteria such as employment of full-time staff and receive fewer critical comments in the inspection reports. However, the results depend to some extent upon the method of data collection, which underlines the benefits of using multiple data sources to examine the relationship between ownership and the quality of care.
Narratives of recovery after floods: Mental health, institutions, and intervention
Catherine Butler, Kate Walker-Springett, W. Neil Adge
There is increasing evidence that flood events affect the mental health of those experiencing them, with recognition that the period of recovery after the event is particularly important to outcomes. Previous research on flooding has argued that there is a recovery gap that occurs during the long process of recovery at the point when the support provision from public authorities and agencies diminishes, and less well-defined interactions with private actors, such as insurers, begin. This concept highlights the importance of the support and intervention from authorities and other institutions for recovery processes. To date, little research has focused specifically on these relationships and their consequences for people’s mental wellbeing through recovery. This study examines the processes of individuals’ recovery from flood events, focusing on the role of interaction with agencies in the trajectories of mental health journeys. The analysis applies a narrative approach to in-depth repeated interviews carried out over a fifteen-month period with nine individuals whose homes were inundated by floods in 2013/14 in Somerset, UK. The results suggest strong evidence for institutional support having an important role in how individuals experience their post-flood mental health recovery journeys. The data reveal strategies to maintain psychological and emotional resilience at distinct periods during recovery, and show that both institutional actions and the perceived absence of support in specific circumstances affect the mental health burden of flood events.
‘Recurrent losers unite’: Online forums, evidence-based activism, and pregnancy loss
Olga Kuchinskaya, Lisa S. Parker
Women with recurrent pregnancy loss face unique challenges associated with the social invisibility of their condition, patchy medical knowledge about it, and often intransigent positions of doctors. We approach online forums as sites of knowledge production and examine discussions among women with recurrent miscarriages. We observe that some forum participants gather, summarize, and share experience-based and research-based information in order to challenge certain medical conceptions. We describe these efforts as an example of individual patients’ evidence-based activism enabled by new media platforms and other technoscientific tools available to the public.
Patient safety and quality of care are increasing concerns for healthcare internationally. This paper examines the spatial achievement of safety and wellbeing by healthcare staff, patients and their carers within UK primary care and Australian palliative care contexts. Two key socio-spatial modes of safety and wellbeing were found across these healthcare contexts. The technical mode was spatially managed by staff and driven by formal approaches to safety with a limited focus on wellbeing. In contrast, the relational mode was driven by attentiveness to the wellbeing and spatial engagement of staff, patients and carers that drew on informal elements of safety. Both modes extended across public, private, biomedical and administrative spaces, with technical and relational safety-wellbeing configurations often inhabiting the same spaces. Differences also existed across primary and palliative care contexts that reflected the unique pressures present within each context, and the ability of people and places to adapt to these demands. In the context of increasing workloads in healthcare internationally, this study highlights the benefits of attending as much to the relational dimensions of safety and quality of care as to the technical ones through increased focus on the safety and wellbeing of healthcare staff, patients and carers within and beyond traditional sites of care.
Sociologists have done much to show that the education system, whatever its meritocratic rationale, is associated with the generation and reproduction of fundamental inequalities. This paper explores how the recent epidemic of mental illness amongst undergraduate students can be seen as part of this dynamic. Reflecting on the dearth of sociological work in this area, the paper draws together the sociologies of inequality, education, and health and illness and explores the value of Bourdieusian framework for understanding the rise of mental health disorders in the undergraduate population. The suggestion is that whilst widening participation has extended educational opportunities, it has simultaneously created a context in which a state of hysteresis (Bourdieu in Outline of a theory of practice. Cambridge University Press, Cambridge, 1977) can emerge which, when combined with social congestion in the workplace (Brown in Br J Sociol Educ 34(5–6):678–700, 2013) and high levels of debt, serves to elevate rates of depression and anxiety.
Revisiting Goffman: frames of mental health in the interactions of mental healthcare professionals with diasporic Muslims
Elise Rondelez, Sarah Bracke, Griet Roets, Caroline Vandekinderen, Piet Bracke
Despite indications that the mental health of diasporic Muslims is under pressure, some evidence suggests that they are under-represented in established mental healthcare services. Studies indicate that, although diasporic migrants are at higher risk for mental health problems, they do not find their way to established mental healthcare services. This issue has been identified, conceptualised, and approached from a variety of perspectives. Existing scholarship nevertheless provides no in-depth, dynamic understanding of what happens in the interactions between mental healthcare professionals and diasporic Muslims. In this contribution, we discuss and analyse the perspective of professionals providing mental healthcare services in Flanders (the Dutch-speaking part of Belgium). Based on snowball sampling, we conducted 31 in-depth qualitative interviews. We analysed our data according to a directed approach to content-analysis. Inspired by the work of Goffman, and with the objective of revisiting Goffman’s theory on frames in the light of several theoretical sensibilities that inform our empirical material, we attempt to disentangle the frames that professionals use when approaching diasporic Muslims with mental health problems. We discuss the most prevalent frames and identify a biomedical, a resocialisation, and a cultural-difference frame.
The Emergence of Individual Research Programs in the Early Career Phase of Academics
Grit Laudel, Jana Bielick
Scientific communities expect early career researchers (ECRs) to become intellectually independent and to develop longer-term research plans (individual research programs [IRPs]). How such programs emerge during the early career phase is still poorly understood. Drawing on semistructured interviews with German ECRs in plant biology, experimental physics, and early modern history, we show that the development of such a plan is a research process in itself. The processes leading to IRPs are conditioned by the fields’ epistemic practices for producing new knowledge. By linking the conditions under which ECRs work to the epistemic properties of their IRPs, we identify mechanisms that produce these programs and conditions facilitating or hindering the operation of these mechanisms.
Quantitative information is one of the means used to interface science with policy. As a consequence, much effort is invested in producing quantitative information for policy and much criticism is directed toward the use of numbers in policy. In this paper, I analyze five approaches drawn from such criticisms and propose alternative uses of quantitative information for governance: (i) valuation of ecosystem services, (ii) social multicriteria evaluation, (iii) quantification of uncertainty through the Numeral, Unit, Spread, Assessment, Pedigree approach, (iv) Quantitative Story-Telling, and (v) the heuristic use of statistics. The analysis shows the varied ways that numbers are conceptualized and how different conceptualizations matter for the science–policy interface. Alternative conceptualizations of numbers are used to challenge the model of science-speaking truth to power. Uncertainty, complexity, pluralism, malpractice, and values are mobilized to redefine the relations between science and policy. Alternative quantification may produce alternative facts, but reflexive approaches that use numbers to discuss the relevance of equity, positionality, and quality in science for policy may offer a remedy.
Crediting scientific discovery for prolonging life is pervasive in biomedical histories of the genetic blood disorder, sickle cell disease. This includes the preventive strategies, such as newborn screening, that have underwritten the success of its life-extending interventions. Newborn screening is a technology that relies not only upon intact health infrastructures but also expertise and enhanced vigilance on the part of caregivers to anticipate complications while they are still open to circumvention. This paper posits that even after overcoming institutional barriers to make newborn screening equitably available, care and vigilance are resources that are themselves subject to what I term anticipatory politics, where structural conditions also stratify expectations for the future, including the affective appeal of medical innovations. This paper elaborates the paradigm of anticipatory politics through an ethnographic examination of newborn screening to connect the comprehensive care practices that have improved survival for sickle cell disease, and as the burden of mortality shifts to young adulthood, to expose how those who are resourced to care for these futures preferentially stand to benefit from preventive interventions.
Special Issue: Pharmaceutical Industry in the Global South (open access)
The Creation and Evolution of the Donor Funded Market for Antimalarials and the Growing Role of Southern Firms
Fabienne Orsi, Sauman Singh, Luis Sagaon-Teyssier
Since the early 2000s, the question of access to medicines at affordable prices for Southern populations has appeared as one of the major challenges for the international governance of health. But what is at stake is the creation of market for medicines in the global South, particularly countries in the Sub-Saharan Africa. These markets are new in nature in the sense that they are driven by international organisations where Southern firms, especially from India, occupy an increasingly important position. However, the specificity of these markets and the way they are constituted have been little analysed. In this article, we suggest focusing the attention on the constitution of the market of antimalarial drugs and highlighting the role played by Southern firms in this market. Our study focuses on the public sector market of antimalarial drugs. We provide an institutional and quantitative analysis of the creation of this public market. We then discuss the growing importance of the Southern firms, mainly Indian and Chinese, in this market.
Therapies Out of Reach: Anticancer Drugs and Global Trade Regimes
Dwaipayan Banerjee, James Sargent
Medical policy analysts and oncologists have cautioned against the high price of anticancer drugs. They argue that the current drug development model that relies on patents and short-term shareholder value is proving unsustainable, since the cost of the new generation of drugs puts many of them out of reach for the average consumer. The high price of cancer drugs is especially troubling in the context of middle- and low-income countries, where the burden of cancer carries disproportionate impact. To analyse the pricing of anticancer drugs, we examined legal controversies, regulatory treaties and documents, as well as the history of pricing data in India. We also conducted interviews with policy consultants and surveyed financial data filings of major global and Indian pharmaceutical corporations. Our research revealed that global trade agreements have become key barriers to lowering anticancer drug prices. This article argues that in the shadow of the World Trade Organization (WTO) and with Trans-Pacific Partnership (TPP) imminent, serious policy changes are necessary to ensure the survival of generic production in the market for anticancer drugs.
Why is Growth More Difficult to Achieve for Biopharmaceutical Latecomer Firms? Evidence from Taiwan
Mei-Chih Hu, Wen-Ching Hsu, Ching-Yan Wu
This study examines why the growth of biopharmaceutical firms in latecomer countries such as Taiwan has been slower than that of information and communication technology (ICT) firms. Unlike prior studies which have focused on the industry-level driving forces, this study offers a firm-level perspective to examine factors driving industry growth. By utilising the DEcision-MAking Trial and Evaluation Laboratory (DEMATEL) method, we analyse data collected in questionnaires with the top managers of biopharmaceutical and ICT firms in Taiwan, both public and non-public. We then compared and contrasted our empirical findings to capture theoretical and practical insights. Our empirical results demonstrate that the entrepreneurial activities of Taiwan’s biopharmaceutical firms are weak in terms of adaptation to external institutions and the utilisation of resources while the primary drivers of growth in Taiwan’s biopharmaceutical firms are rather (internal) institutional factors than resource-based factors, especially in the emerging and early growth stages. We conclude that the challenge for the latecomers lies on the institutional entrepreneurship to enable and affect the circulation of strategic resources so as to bring the firms onto the growth and mature stages.
Seizing Opportunities for Markets of Discovery: The Reconfigurations of Value Chains in Pharmaceutical Industry in the Global South
Muriela Hinard De Pádua, Margarida Fontes, Cristina Sousa
This article investigates whether Asian countries are becoming more active at the discovery stage, a higher stage of the drug development value chain. We conduct the first quantitative study to investigate these countries positioning in drug discovery activities. For this purpose, we draw on a database containing historical information on more than 61,000 drugs, for the period 1994–2015, and extract and analyse data on the drug discovery events in which a selected group of Asian countries were involved.
The results show that these countries are increasingly involved in activities of discovery and that, in some of them, these activities are predominantly conducted on drugs owned by local organisations. Along with this process, markets for discovery are being created, both through sub-contracting and through partnerships among local organisations (for their own drugs) and between local and non-local ones. Second, drawing on the strategies and organisational set-ups adopted in each country, we distinguish a number of profiles regarding the ways competences for markets for discovery are being built. Third, we identify the existence of a strong regional centre of competences, acting as a local–global articulation locus for markets of discovery.
These results provide new insights into the ways Asian countries are moving up the drug development value chain and contribute to our understanding of the learning processes underway in different contexts and the variety of configurations resulting from these processes, supporting a discussion on the potential role of policies to further expand markets for discovery.
‘New Drugs’ Approvals in India: An Institutional Perspective
Saradindu Bhaduri, Thangminlen Kipgen
The approval mechanism for new drugs in India has in recent years been a subject of scrutiny and controversy in both the public sphere and academics. Frequent rollbacks in the guidelines have attracted criticisms from the industry as well. All this happens at a time, when the country aspires to catch up and keep pace with the fast-changing global regulatory norms. This article draws upon the scholarships on regulatory science and institutional theories to understand the regulatory processes of new drugs approval in India. Both strands of scholarships highlight the multidisciplinary, context-specific character of regulatory knowledge. We find that Indian regulation-making process relies heavily on regulatory knowledge built up elsewhere, potentially limiting the scope of generating its own, context-specific, regulatory knowledge through learning and capacity building. Inadequate level of deliberations in the decision-making process, dearth of documentation and a lack of connections with the larger institutional settings appear to be two other features of it. All this might explain the reasons for frequent changes, and lack of continuity, in regulation for new drugs approval in the country in recent years.
Recent history of clinical trials in India has been mired in avoidable controversies. Negative public perception and consequent reactions by government and judiciary have led to a virtual blockade of clinical trials in the country. This article dispassionately analyses the fiascos that happened in the past few years, describes how folklore disseminated by media, civil society and experts created a myth about ‘liberalisation’ of regulations and presents facts about regulatory amendments. The causes of recent non-compliances are discussed and real fault-lines are identified. The article posits that territorial laws must remain harmonised with contemporary international standards for regulating global activities like clinical trials. Fixing what was not broken has already caused substantial harm and Indian regulators have done well by reversing the unnecessary tinkering recommended by some quasi-experts. Professional self-regulation along with implementation of existing regulations are proposed as the best solutions for gaining India’s place on the global clinical trials’ growth curve.
Regulation Multiple: Pharmaceutical Trajectories and Modes of Control in the ASEAN
Mathieu Quet, Laurent Pordié, Audrey Bochaton, Supang Chantavanich, Niyada Kiatying-Angsulee, Marie Lamy, Premjai Vungsiriphisal
This article revisits the conceptualisation of pharmaceutical regulation. While States and multilateral organisations play a central part in devising rules, regulation as a social practice extends beyond their role. Domestic and international interests, geopolitics and spatial configurations, commercial and health considerations, governmental policies and individual behaviours and legal and illegal transactions all contribute to regulating the pharmaceutical milieu. This consideration expands the epistemological range of pharmaceutical regulation, which then appears as the assemblage of heterogeneous laws, rules and codes of conducts. The way in which these layers are connected forms what regulation actually is in practice. Regulation multiple thus appears as the product of tensions between harmonisation efforts and persistent diversity, as well as the result of interactions and overlaps between official regulation and unofficial regulatory practices. This article explores these tensions in the Southeast Asian pharmaceutical market along three themes: circuits and logistic regimes; control and attention to quality; bridges and harmonisations.
Traditional Health Knowledge (THK) has been a resource for modern pharmacology and the pharma-ceutical industry since its inception. Until the 2000s, there was little obligation to acknowledge the use of THK by the pharmaceutical industry. Now, with the intellectual property regime becoming a prominent mode of regulating use of pharmaceutical inventions and innovations, and attempts by the pharmaceutical industry to patent products based on THK, rights of THK holders are being fore-grounded. The World Intellectual Property Organization (WIPO) is seeking to protect the rights of THK holders through international legal instruments under the Intellectual Property Rights (IPR) framework. This article discusses dilemmas arising from this attempt at bringing together two diverse knowledge frameworks. It draws upon existing literature on the nature of THK and upon the debates of the WIPO’s Inter-Governmental Committee on Genetic Resources, Traditional Knowledge and Traditional Cultural Expression (WIPO-IGC), and analyses them from the standpoint of a holistic health systems approach (HHSA) in an era of Sustainable Development Goals (SDGs). The approach leads to the conclusion that deliberations and promulgations of the WIPO-IGC will have long-lasting implications for the survival of diversity and context-specificity in healthcare. Therein lies the significance of thinking through the policy and legal measures to be adopted nationally and internationally.
The transformative role of interaction rituals within therapeutic communities (open access)
Jenelle M. Clarke, Justin Waring
Mental health settings are fraught with emotion as clients address difficult life experiences and relational patterns. Clients spend a substantial amount of time together outside of structured therapy, but little is known about how these moments are potentially therapeutic, especially as sites of emotional change. We draw on interaction ritual chain theory to explore how negative emotions in situations outside of formal therapy can be transformed into positive emotions and facilitate personal change. The research is based upon a narrative ethnography of two therapeutic communities for individuals with a diagnosis of personality disorder. Despite the presence of negative transient emotions in these rituals, clients experienced positive feelings of solidarity and belonging, and the majority of clients reported increased feelings of confidence and positive change. Conversely, dynamics between clients showed clients were not always supportive of one another and at times, could exclude others, resulting in isolation and alienation. We argue interactions that generate feelings of inclusion or exclusion over time are a key component in whether clients gain positive or negative emotional feeling and experience personal change.
‘Who does this patient belong to?’ boundary work and the re/making of (NSTEMI) heart attack patients (open access)
Helen Cramer, Jacki Hughes, Rachel Johnson, Maggie Evans, Christi Deaton, Adam Timmis, Harry Hemingway, Gene Feder, Katie Featherstone
This ethnography within ten English and Welsh hospitals explores the significance of boundary work and the impacts of this work on the quality of care experienced by heart attack patients who have suspected non‐ST segment elevation myocardial infarction (NSTEMI) /non‐ST elevation acute coronary syndrome. Beginning with the initial identification and prioritisation of patients, boundary work informed negotiations over responsibility for patients, their transfer and admission to different wards, and their access to specific domains in order to receive diagnostic tests and treatment. In order to navigate boundaries successfully and for their clinical needs to be more easily recognised by staff, a patient needed to become a stable boundary object. Ongoing uncertainty in fixing their clinical classification, was a key reason why many NSTEMI patients faltered as boundary objects. Viewing NSTEMI patients as boundary objects helps to articulate the critical and ongoing process of classification and categorisation in the creation and maintenance of boundary objects. We show the essential, but hidden, role of boundary actors in making and re‐making patients into boundary objects. Physical location was critical and the parallel processes of exclusion and restriction of boundary object status can lead to marginalisation of some patients and inequalities of care (A virtual abstract of this paper can be viewed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA).
This article argues that commercial digital health platforms and devices commodify participatory features of the digital creating a new medical cosmology. Drawing on sociology on medical cosmologies, research on digital media and marketing and an analysis of the 23andMe online genetic testing platform, I identify three features of this cosmology. First, digital health seeks to foment ‘flow’ or enjoyable, continuous immersion in health. Second, digital health configures its consumers as ‘co‐creators’ of health data and knowledge together with companies and other consumers. Third, digital health frames medical knowledge as tentative, up for revision and scepticism by expert and lay science. The way in which digital health configures consumers as immersed, creative and sceptical gives it an open‐ended and participatory air. However, the conceptual discussion and the analysis of the 23andMe platform highlight that these features represent commercial capture of the lifeworld, even if they appear radical against classical medical cosmologies.