In the Journals

In the Journals, June 2020, Part 2

American Anthropologist (Open Access)

Machine Sky: Social and Terrestrial Engineering in a Chinese Weather System
Jerry C. Zee

This article explores Chinese environmental politics as a complex strategy for engineering weather and climate at national and then planetary scales. It argues that in times of meteorological insecurity, we can explore diverse sites in China’s state environmental political apparatus as attempts at coordinating diverse physical, natural, and social processes into components of manipulable weather systems. Through considering two programs of state environmental intervention, the article explores “infrastructure” as a political practice and opportunity. First, in considering aerial seeding and ecological migration programs in the context of anti‐dust storm programs spearheaded by state forestry agencies, I show how environmental engineering involves the continual retooling of wind flows, local ecologies, and ex‐herder precarity into a variegated strategy of atmospheric control for downwind places in the path of dust storms. Then, I explore how the recent ascendance of the Chinese state in international climate accords builds on a decade‐long theorization of “socialist ecological civilization” by Party theorists. In aligning the longevity of state socialism with the sustaining of planetary climate systems, I argue that Chinese international politics increasingly rely on a vision of China as infrastructural to the political and climatic apparatus of the planet as such.

Infrastructural Incorporations: Toxic Storage, Corporate Indemnity, and Ethical Deferral in Peru’s Neoextractive Era
Stefanie Graeter

How much is a body with minerals worth? Through the lens of lead‐exposure politics, this article analyzes how people living near the mineral‐storage yards of Peru’s seaport of El Callao enact a response to this question. El Callao’s port serves as a transport and storage hub for metal particulates awaiting foreign markets. The infrastructure required for this undertaking—trucks, roads, and repositories—also generate conditions of metal leakage and human exposure. Over the decades, low‐income port residents have effectively acted as human infrastructures of toxic storage, a service for which they are selectively paid through ad hoc indemnification practices by multinational metal‐trading corporations. While arguing that such infrastructural incorporations materialize the racialized ethics of Peru’s extractive economy, the article also shows how denouncing lead exposure has generated new political means for port residents to access previously unavailable infrastructure (water, electricity, building materials) for their formalizing or informal settlements as well as other basic necessities of life. Decades after the “discovery” of lead at the port, these isolated gift exchanges and infrastructural improvements provide corporations a palliative approach to lead remediation and indemnification, producing a state of ongoing ethical deferral of complete lead eradication, which keeps minerals moving swiftly through the port and inside the bodies of residents.

Assembling “Effective Archaeologies” toward Equitable Futures
Ann Brower Stahl

An urgency compels us to engage how archaeology relates to contemporary situations and future dilemmas as citizens anxiously contemplate their futures. We see “crowd‐sourced” efforts to define pressing questions. A welter of theoretical approaches promises new insight into our relationally configured worlds. We couple awareness of the situated character of knowledge with a commitment to its empirical grounding. In light of this contemporary frame, I explore principles of an “effective archaeology” that imagines its “impacts” beyond narrow “uses.” By attending to how we make facts, archives, and narratives; by placing Western knowledge in productive dialogue with knowledge grounded in other epistemologies; and by embracing a disciplinary responsibility to expand and enlarge imaginings of futures through evidentially robust and critically engaged practice, effective archaeologies hold promise to build toward more equitable futures.

Allostasis and Adaptation: Biocultural Processes Integrating Lifestyle, Life History, and Blood Pressure Variation
Gary D. James

Allostasis (literally “stability through change”) is a key concept for understanding how human behavior and physiological adaptation are related. The continuous variation in arterial blood pressure is an exemplar of allostasis. The purpose of this article is to describe theoretical and methodological developments that have led to an improved biocultural understanding of arterial blood pressure responses to everyday life in humans using allostasis as a paradigm. Arterial pressure variation is directly related to lifestyle, or more specifically, the things that people do, think, and experience in their daily lives. Allostatic patterns of arterial pressure variation also change with life‐history events. Patterns are altered as people age and take on differing social roles, and patterns vary between men and women. The cumulative effects of allostasis is the development of allostatic load, or a “wearing out” of the system. Studies have linked allostatic load to the development of cardiovascular diseases (CVD). However, the rate and trajectory of allostatic load through adult life is effectively dictated by developmental and evolutionary processes that impact allostasis and will vary among populations as a consequence of developmental, heritable, environmental, and cultural differences. Allostasis is the paradigm for biocultural studies of arterial blood pressure.

BioSocieties

Fight for our health: Activism in the face of health insurance precarity
Beza Merid

The Affordable Care Act, which expanded health insurance coverage to millions of Americans and federally mandated the provision of health insurance to individuals with “pre-existing conditions,” is a politically divisive law facing an ongoing ‘repeal and replace’ effort in Congress. As patients, caregivers, and health activists fight to resist the repeal of the ACA, they are sharing intimate illness narratives in an effort to frame the repeal effort as a looting of their insurance benefits and an attack on the investment in equity and justice they say the ACA represents. Drawing on a discourse analysis of primary documents from the U.S. Department of Health and Human Services and illness narratives shared by the Service Employees International Union’s Fight For Our Health activist campaign, this article examines how the illness narrative is deployed here as a political call to action. I consider how this resistance effort frames the inevitability of illness and the emotional burdens of what I call ‘health insurance precarity,’ or the uncertainty that defines the experience of being uninsured, as a justification for positioning health activism as a cultural and political obligation shared by all.

Microbes, chemicals and the health of homes: integrating theories to account for more-than-human entanglements
Rachael Wakefield-Rann, Dena Fam, Susan Stewart

In the post-war period, the health risks posed by indoor environments have both transformed and challenged notions of environmental health centred on pathogenic germs. The composition of home spaces, particularly in developed nations, has been fundamentally altered by the introduction of formerly industrial chemicals to everyday products and building materials. Further, the changing nature of building design, cleaning practices and urban life have altered the ‘microbiomes’ of homes, contributing to a rise in certain immune system conditions. This paper contends that to begin to address these concerns, the microscopic elements of ‘indoor ecosystems’, and how they are created and maintained, must become a focal point for research. It proposes an approach that integrates social practice theories and multispecies ethnography to investigate the cumulative composition of indoor spaces. Findings detail the application of this approach to research into the domestic hygiene practices of parents with young children in Sydney, Australia. This approach highlights crucial assumptions about the ways micro-scale agency is embedded in everyday domestic practices that are contributing to sub-optimal indoor environments.

Shall we stop talking about egg donation? Transference of reproductive capacity in the Spanish Bioeconomy
Sara Lafuente-Funes

More than 8% of babies born in Spain in 2014 were conceived through assisted reproductive techniques (ARTs); almost four out of every 10 babies born that year after direct-IVF depended on egg donation according to data from the Spanish Fertility Association. Drawing on qualitative fieldwork with 25 professionals linked either to researching reproduction or practicing reproduction using IVF (five researchers from universities and 20 professionals from 10 reproductive clinics), this paper suggests that the complex role of eggs, indeed what they actually are today within these bioeconomies, cannot be completely understood by relying solely on the concept of egg donation. Their roles are understood to be much better apprehended and visualized using the broader idea of transference of reproductive capacity, a concept that facilitates our understanding of the socio-technical practices in which eggs are currently entangled, signified, and made sense of. Thus, I argue that we ought to stop talking about egg donation (particularly when identifying it as a “technique”) and talk instead about the socio-technical practices of transference of reproductive capacity.

The micropolitics of behavioural interventions: a new materialist analysis
Nick J. Fox, Elise Klein

Behavioural approaches are increasingly used in both the global North and South as means to effect government policy. These interventions aim to encourage preferred behaviours by subtly shaping choices, applying incentives or employing punitive measures. Recent digital technology developments extend the reach of these behavioural approaches. While these approaches have been criticised from political science perspectives, in this paper we apply an innovative mode of analysis of behavioural policy approaches founded in a ‘new materialist’ ontology of affects, assemblages and capacities. This perspective enables us to explore their ‘micropolitical’ impact—on those who are their subjects, but also upon the wider sociocultural contexts within which they have been implemented. We examine two different behavioural interventions: the use of vouchers to incentivise new mothers to breastfeed their infants (a practice associated with improved health outcomes in both childhood and later life), and uses of debit card technologies in Australia to limit welfare recipients’ spending on alcohol, drugs and gambling. In each case, we employ a materialist methodology to analyse precisely what these interventions do, and what (in)capacities they produce in their targeted groups. From these we draw out a more generalised critique of behavioural approaches to policy implementation.

Intersections of health and gender imperatives: stratified decision-making among women with a BRCA mutation
Amy A. Ross Arguedas, Courtney L. Scherr, Marleah Dean, Hannah Getachew-Smith, Mereditch Clements

Receiving a positive test result for a BRCA mutation is a life-altering event. Thrust into a biomedical category of “high-risk” for developing breast and ovarian cancer, unaffected BRCA-positive women confront decisions about how to manage their risk. The knowledge provided through the use of genetic testing burdens women with having to make crucial decisions in a context of great uncertainty. Using 25 semi-structured interviews, this paper examines how women make decisions about how to manage their health after learning about a BRCA mutation. We situate the biographies of these women in the context of neoliberal expectations about personal responsibility for health and gender norms, and argue that the intersection of these imperatives plays out in unique ways depending on an individual’s life-stage, resulting in stratified decision-making. For older women who are married and have children, gender and health expectations neatly align. However, for younger, single women without children, the normative expectations about gender and health management often conflict, resulting in the prioritization of gender imperatives over health expectations, albeit temporarily. The analysis concludes with a discussion of the implications of BRCA testing for women and their experiences of choice and decision-making as well as their resistance to preventative surgeries.

Before Laboratory Life: Perry, Sullivan and the missed encounter between psychoanalysis and STS
Masato Fukushima

This article explores the potential fruitfulness of an encounter between psychoanalysis and science and technology studies (STS) by examining Perry’s (The Human Nature of Science: Researchers at Work in Psychiatry, The Free Press, New York, 1966) book, and its intellectual and socio-cultural background. From his close observation of experimental LSD therapy in a psychiatric research center in the USA, Perry seminally claimed—a decade ahead of similar claims in STS—the social construction of scientific theory. His work, being idiosyncratic as a hybrid of STS and psychoanalysis in terms of both his research subject and research framework, later sank into complete oblivion. Examined here, first, is the parallel development of the reflexivity concept in both STS and psychoanalysis: Harry S. Sullivan’s pivotal role in introducing sociological reflexivity into the latter is detailed. Second, the predicament of mental institutions in the post-war USA is identified as the important milieu that allowed such diverse approaches as Erving Goffman’s Asylums. The highlighted potential of Perry’s work vis-à-vis contemporary STS is its reflexive ethnography that combines research ethics with emotional dynamics in situ. This contribution is contrasted with its limited applicability to large-scale social issues, another lesson we learn from this historical reflection.

Patents and the challenge of ‘open source’ in an emergent biological commons or … the strange case of Betty Crocker and the mouse
Bronwyn Parry

Patent has long been presumed to be an essential mechanism for realising the value of intellectual labour invested in the manufacture of biological inventions. By examining how the creators of engineered mice strains deposited at the Jackson Laboratory have utilised patent, I here explore the paradoxical matter of why they have not asserted their rights in the way anticipated by patent advocates. The emergence of new open source economies in mammalian genetic resources (the Mouse Academic Commons) has served to valorise collaborative working and iterative forms of experimentation. Engineered mouse strains are, in this context, best conceived of as an experimental space or biological commons open to re-invention by all. The key issue of how individual donors can protect the integrity of their donated ‘works’ and capitalize on the intellectual labour invested in their creation remains, however, largely unexplored. Here I argue that value lies not in the model mouse or strain itself, but rather in the experimental techniques that assure its continued genetic integrity; and demonstrate how process patents and trademark are together deployed to assure the reliability of the personality, identity, and reputation of the protected strains; and with it the economic viability of a biotechnological commons.

Contemporary Drug Problems

Where the Fault Lies: Representations of Addiction in Audience Reactions to Media Coverage of the Opioid Epidemic
David Russell, Kelly M. Thames, Naomi J. Spence, Callie M. Koeval

The unprecedented number of deaths in the U.S. attributed to opioids has been referred to as an “epidemic of addiction.” Media coverage of the epidemic has stoked public discussion of addiction on social media platforms. This article describes how addiction is represented in comments on media coverage of the “opioid epidemic” and examines the relationship between media framing and audience representations of addiction. Content analysis methods were applied to data obtained from news posts (n = 397) and comments (n = 2,836) on the Facebook pages of 42 newspapers in Ohio, where overdose deaths are among the highest in the U.S. Eleven percent of comments were identified as referencing addiction (n = 319). These comments were classified into two overarching categories: (1) support, disease, and contributing factors expressed support for persons affected by the epidemic, represented addiction as a disease requiring treatment, and highlighted social and structural factors seen as contributing to the epidemic (61.1% of comments referencing addiction); and (2) misdirected attention and individual blame questioned the media focus on addiction and overdose deaths, highlighted individual choices to misuse opioids, and suggested that media coverage of the epidemic diverts attention away from other social problems viewed as being more worthy of public attention (38.9% of comments). Representations of addiction in comments were found to be independent of (not associated with) frames in media coverage (p = .945). Together, these results suggest that while a majority of commenters represent addiction as a legitimate social problem that warrants intervention and support, a substantial minority are dismissive of the epidemic, express anger and disdain for persons who use opioids, and seek to counter popular narratives of social and structural factors contributing to addiction.

The Socio-Spatial Contexts of HIV Risk for People Who Inject Drugs in Public Spaces in Nigeria
Ediomo-Ubong Ekpo Nelson

This article explores the socio-spatial factors shaping HIV risk for people who inject in public settings in Nigeria. It draws on thematic coding and analysis of qualitative interview accounts of people who inject drugs (PWID) in public spaces (n = 29) recruited via snowball sampling. Drug injecting took place in diverse spaces (“bunks,” uncompleted buildings, motor parks, and night life environments) that enabled PWID to conceal illicit drug use in public settings. Public injecting resulted from intersecting socio-structural factors, including housing instability, resource constraints, and marginalized forms of drug use. Conversely, the practice was preferred as a beneficial and socially meaningful experience. Although PWID recognized the risks associated with public injecting and enacted risk reduction practices (e.g., using sterile syringes, rinsing syringes), risk reduction was undermined by socio-spatial factors including social discrimination, lack of essential amenities to enable safe injecting, poor access to sterile injecting equipment, and fear of disclosure and police arrests. These factors reproduced an environment of pervasive risk that compromised risk reduction and fostered risky practices such as rushing injection and sharing injecting equipment. There exists a need to create enabling environments for health by enabling access to secure accommodation, implementing safe injecting environment interventions, and exercising discretion in policing to enable access to essential harm reduction services for PWID.

Motives and Correlates of Anabolic-Androgenic Steroid Use With Stimulant Polypharmacy
Renee Zahnow, Jim McVeigh, Geoff Bates, Adam R. Winstock

Individuals who use anabolic-androgenic steroids (AAS) may engage in concurrent psychoactive drug use recreationally and/or as an additional training aid. Aside from cannabis, individuals who use AAS most commonly report concurrent use of stimulants such as amphetamines and cocaine. In this study, we examine demographic characteristics, frequency of heavy drinking, and nightclubbing in a sample of 993 men from the Global Drug Survey 2015 who reported both AAS and psychoactive drug use before exploring the relationship between motivation for AAS use and the propensity to concurrently engage with stimulant-type substances. Results of a logistic regression analysis suggest that the propensity for concurrent use of AAS and stimulants is greater when AAS use is motivated by weight loss goals, while performance goals are associated with reduced odds of concurrent stimulant use. Identifying individuals who are at risk of polydrug use and associated harms can inform targeted harm reduction strategies.

Trends and Variations in Concurrent Dispensing of Prescription Opioids and Benzodiazepines in Australia: A Retrospective Analysis
M. Mofizul Islam, Dennis Wollersheim

Concurrent use of opioids and benzodiazepines may cause a range of adverse health outcomes including fatal overdose. However, little is known about levels of concurrent use and its variation across jurisdictions. This study examined the population-level prevalence of concurrent use in Australia. We analyzed a 10% sample of unit record data of prescription opioids and benzodiazepines dispensed between January 2013 and December 2016. Using dispensing dates and days of supply in terms of defined daily dose (DDD), the concurrent users were identified as those for whom the supply in DDD quantity for one medicine overlapped with the supply day of the other. Multivariable and multilevel regression models were developed. During the 4 years, almost a million (12.41% of 7.96 million) individuals were identified as concurrent users. Significantly more women were concurrent users than men across all age groups. On average, 1,750 per 100,000 people were concurrent users per year. There was substantial variation in the yearly average of concurrent users across jurisdictions, ranging from less than 1 to 5,400 per 100,000 people (standardized). Much of this variation was attributed to individual-level circumstances rather than structural factors. Concurrent use of opioid and benzodiazepine was common in Australia. There was considerable variation across jurisdictions in terms of the number of concurrent users. Women, older people, or those living in socioeconomically disadvantaged areas were dominant groups of concurrent users. Further research is needed to examine the precise reasons for concurrent use.

County-Level Differences in Support for Recreational Cannabis on the Ballot
Lindsey Beltz, Clayton Mosher, Jennifer Schwartz

Cannabis is traversing an extraordinary journey from an illicit substance to a legal one, due in part to an unprecedented wave of bottom-up law reform through successful citizen ballot initiatives. Yet, even in states that have legalized recreational cannabis, there is substantial geographic variability in support of cannabis legalization. Geographic variability in voter support for cannabis legalization is impactful (e.g., county moratoriums/bans) yet poorly understood. This paper demonstrates the consequences of county-level population demographics, sociopolitical factors, and community differences in experience with criminalization of cannabis possession for understanding county-level variation in support of recreational cannabis law reform on (un)successful ballot measures in California (2010), Colorado (2012), Washington (2012), and Oregon (2014). OLS regression analyses of nearly 200 counties indicate that differences in racial and ethnic composition (% Black, Hispanic), political affiliation (% Republican), past criminalization, gender composition, and higher education level of residents all predict county-level variation in support for liberalization of cannabis law. Stronger Republican political leanings and/or higher percentages of Black or Hispanic residents were associated with reduced support, whereas higher education, male sex composition, and greater past criminalization were associated with increased support for cannabis legalization across counties. Religiosity and rurality were inconsequential as predictors of county-level voting patterns favoring recreational cannabis. The substantial geographic variability in voter support for cannabis legalization has significant implications for policy implementation and effectiveness.

Journal of the Royal Anthropological Institute

Spectres of Seppo: the afterlives of Finland’s nuclear waste experts
Vincent Ialenti

This article examines how Finland’s nuclear waste repository safety assessment experts summoned memories of Seppo: a deceased colleague whose ‘spectre’ was said to still ‘haunt’ their workplace. First, it tracks how Seppo appeared in predecessor parables: cautionary tales told about his death, which conveyed value judgements about how experts ought to act, engage, and aspire. Second, it explores how Seppo’s long‐time ‘right‐hand man’ Gustav still felt haunted by his colleague’s affective intensities, scientific vision, and sharp tongue. This led Gustav to prod his workmates to reconsider how they modelled Finland’s ecosystems many millennia into the future. Studying this ethnographically revealed how traces of Seppo’s past life infused living experts with emotions, opened them to alternative futures, and spurred them to rethink their professional values. This article concludes by introducing expert afterlives as a temporal, epistemic, and affective nexus that can shape how technocratic projects are organized and how expert knowledge is made.

In the red: substances and materials in the Australian Western Desert
Diana Young

This article discusses the diversity, distribution, and qualities of materials and substances categorized as red among Pitjantjatjara‐ and Yankunytjatjara‐speaking Western Desert Aboriginal people: Anangu. Valued red materials and substances include elements of the encultured landscape – country – such as ochre, timber, food, blood, and fire, alongside cloth and other industrially produced materials. Previous scholarship defines reds among central Australian Aboriginal cultures only in static symbolic terms as representing blood. Based on long‐term fieldwork, this article discusses how Anangu employ a system of analogy across domains which connects together red materials and substances with particular affordances. I argue that Anangu conceptualize these red materials and substances as making visible kurunpa /spirit. This has implications for concepts of health and for constructing the local cultural value of consumer goods and substances found in country. Reds connect the mental and the material. The article contributes to studies of how contemporary Anangu mediate relationships between kin and country and participate in a wider market economy. It addresses anthropological knowledge about, and the importance of, the materiality of colours and the role of coloured materials and substances in shaping local ontologies and epistemologies.

Roadwork: expertise at work building roads in the Maldives (open access)
Luke Heslop, Laura Jeffery

This article engages critically with concepts of ‘skill’, ‘expertise’, and ‘capacity’ as they operate as markers of distinction and domination and shape migratory labour relations among road construction workers from across South Asia in the Maldives archipelago. The article examines roadwork at three levels: the professional biographies leading to ‘flexible specialization’ rather than technical expertise amongst Maldivian managers; the technical expertise and social incorporation of ‘skilled’ Sri Lankan supervisors; and the key material expertise of ‘non‐skilled’ Bangladeshi labourers in precarious employment. Whilst discussions of South Asian labour migration have been dominated by caste and class, this article argues that it is important to consider how the cultural production and understanding of concepts such as ‘expertise’, ‘capacity’, and ‘exposure’ at worksites can (also) become distinguishing factors in (hierarchical) migratory labour relations.

The paradox of the long term: human evolution and entanglement (open access)
Ian Hodder

Over recent decades, many archaeologists have eschewed evolutionary theories, and in doing so they have turned away from the identification of long‐term trends that are of great relevance to present‐day matters of concern. In particular, there is clear evidence for an overall long‐term increase in the amount of human‐made material and associated human‐thing entanglements, an increase tied up with environmental impact and global inequalities. The directionality of these long‐term changes is clear and yet evolutionary theory largely shuns notions of overall directional change. This paradox and its implications are the subject of this article, with the suggestion made that, for human evolution at least, notions of directionality and path dependence need to be embraced, with concomitant changes in human evolutionary theory, and with implications for responses to environmental change. Adding to earlier accounts of entanglement, emphases are placed on the self‐amplifying processes that lead to change and on irreversibility in the place of teleology.

Medical Anthropology Quarterly

Care in Trouble: Ecologies of Support from Below and Beyond
Vincent Duclos, Tomás Sánchez Criado

Over the last decades, care has proliferated as a notion aimed at capturing a vast array of practices, conditions, and sentiments. In this article, we argue that the analytics of care may benefit from being troubled, as it too often reduces the reproduction of life to matters of palliation and repair, fueling a politics of nationalism and identitarianism. Picking up the threads of insight from STS, “new materialisms,” and postcolonial feminist and indigenous scholarship, we discuss care from “below” and “beyond,” thus exposing tensions between the enveloping and the diverging, the enduring and the engendering, that play out in care practices. We propose “ecologies of support” as an analytic that attends to how humans are grounded in, traversed by, and undermined by more‐than‐human and often opaque, speculative, subterranean elements. Our proposal is for anthropology to not simply map life‐sustaining ecologies, but to experimentally engage with troubling modes of inquiry and intervention.

Sowa Rigpa Humanitarianism: Local Logics of Care within a Global Politics of Compassion
Sienne R. Craig, Barbara Gerke, Victoria Sheldon

This article examines the circulation of humanitarian ideas, materials, and actions in a non‐biomedical and non‐Judeo–Christian context: Sowa Rigpa or Tibetan medical camps in India and Nepal. Through these camps, practitioners and patients alike often overtly articulate Sowa Rigpa medicine as part of a broader humanitarian “good” motivated by a Buddhist‐inflected ethics of compassion and a moral economy of care, diverging from mainstream public health and conventional humanitarian projects. Three ethnographic case studies demonstrate how micro‐political interactions at camps engage with ethical and religious imaginaries. We show how the ordinary ethics of Sowa Rigpa humanitarianism gain distinct political meaning in contrast to non‐Tibetan forms of aid, reconfiguring the relationship between Buddhism, essential medicines, moral economies, and politics. While Sowa Rigpa as a medical system operates transnationally, these camps are organized around local logics of emergent care, employing narratives of “charity” and Buddhist compassion when addressing health needs.

Identified Patient: Apartheid Syndrome, Political Therapeutics, and Generational Care in South Africa
Stephen McIsaac

In contemporary South Africa, racism, economic exclusion, and spatial segregation remain trenchant features of everyday life 25 years after the end of apartheid. In this article, I show how therapeutic practices by black South Africans in one of the country’s largest townships address the ongoing legacies of this history. Rather than treat individual psyches, therapists’ practices are oriented toward the relational space between generations, a political therapeutic driven by the affective force of the therapists’ own history of struggle toward a different future for black youth, who continue to be marked by the legacies of colonialism and apartheid. In the process, I track how this political therapeutic confronts the normative demands of psychiatric knowledge. Overall, I argue that rather than solely focusing on the violence of care in clinical settings, we should interrogate political generation and embodied history as forms of expertise and their constitutive potentialities.

Inequalities in the Age of Universal Health Coverage: Young Chileans with Diabetes Negotiating for Their Right to Health
Marcela Gonález-Agüero, Richard Chenhall, Prabhati Basnayake, Cathy Vaughan

While universal health coverage (UHC) has been praised as a powerful means to reduce inequalities and improve access to health globally, little has been said about how patients experience and understand its implementation locally. In this article, we explore the experiences of young Chileans with type 1 diabetes when seeking care in Santiago, within Chile’s UHC program, which sought to improve people’s access to health care. We argue that the implementation of UHC, within a structurally fragmented health system, did not lead to the promised equitable health care delivery. Although UHC aimed to equitably provide universal care, locally it materialized in heterogeneous configurations forcing individuals into positions of precarity and generating new inequalities. Furthermore, for the young people in the study, UHC intersected with their health insurance and socioeconomic status, impacting on the health care they could access, consequently making diabetes care and management a difficult challenge.

Caregiving in Crisis: Fatherhood Refashioned by Sierra Leone’s Ebola Epidemic
Kristen E. McLean

In much of the literature on Sierra Leone, young men have been recognized for perpetrating violence or resisting authority. This characterization extended into the Ebola crisis, as young men were depicted as “resisting” public health measures. In contrast, little scholarship has focused on men’s roles as caregivers during the epidemic. This article draws on ethnographic research conducted between 2014 and 2016 in eastern Sierra Leone to demonstrate how men contributed to caregiving. Findings reveal that when men were unable to care via established means, they improvised new ways to care for their families, which included: paid labor in Ebola treatment facilities; protecting their families from risk of infection; and hands‐on nurturing. By focusing on these diverse types of male caregiving, this article challenges the ways in which “care” and “women” are often neatly linked and calls for a rethinking of stereotypes associating African men with violence.

Performing Pimâtisiwin : The Expression of Indigenous Wellness Identities through Community‐based Theater
Andrew R. Hatala, Kelley Bird-Naytowhow

The performing arts can be a powerful means of wellness, identity exploration, and positive social representation for Indigenous young people. In this article, we outline the results of a year‐long collaborative study that explored Indigenous young peoples’ relationships between the performing arts, wellness, and resilience. Twenty in‐depth interviews were conducted with 10 Cree and Métis youth about their participation in the Circle of Voices theater program at the Gordon Tootoosis Nik̄an̄iw̄in Theatre in Saskatoon, Saskatchewan, Canada. A strength‐based analysis focused on performing pimâtisiwin , that is, how young people learn to enact, protest, and play with a wide range of social identities, while also challenging racially stereotyped identities often imposed on them within inner‐city environments. This research critically engages performative theory to more readily understand aspects of Indigenous youth identity and wellness and offers new empirical and methodological directions for advancing Indigenous youth wellness in urban settings.

The Corruption Game: Health Systems, International Agencies, and the State in South Asia
Svea Closser

Drawing on ethnographic material collected in Pakistan, India, and Nepal, this article analyzes patterns of corruption in vaccination programs in South Asia. Corrupt practices—which required substantial work—were deeply shaped by both the money and systems of accountability of the global health system. Bilateral and multilateral donors provided substantial funding for immunization programs across South Asia. International agencies and governments instituted systems of accountability, including documentation requirements and a parallel UN bureaucracy in problematic districts, to try to ensure that health workers did what they wanted. Some immunization program staff skillfully bent these systems of accountability to their own ends, diverting vaccination funding into their own pockets. Corruption operates not in opposition to the official rules, but in spaces opened up by them. These practices sometimes transform Weber’s rational bureaucracy into a sophisticated game with many players, whose aims are more complex than the stated goals of the bureaucracy.

You Are the Future: Embodied History in China’s Psy‐boom (open access)
Barclay Bram Shoemaker

Ms. Zhou, Ms. Liu, and Ms. Wen represent three generations of psychological counselors in China. They all work in Chengdu, the provincial capital of Sichuan province. China is in the midst of what scholars call the “psy‐boom.” This is generally defined as the rapid rise in psychological services in the country. Rather than understanding this rise as a linear phenomenon or one in which the understanding of psychology and its uses are universally shared by all practitioners, these three therapists show how haphazard and staggered the uptake in psychological services has been. They also show how the different historical contexts and shifting qualification standards that defined their generation of the psy‐boom in turn shaped their therapeutic practice. The study uses Bourdieu’s concept of the habitus to show how the embodied history of China’s psy‐boom impacts the practice of counselling and understanding of psychology.

Journal of Medical Humanities

Suturing the Nation in South Korean Historical Television Medical Dramas
Kai Khiun Liew

Using the 2000-2010 South Korean historical medical dramas Heo Jun (The Way of Medicine), Dae Jang Geum (Jewel in the Palace), and Jejoongwon (The Hospital) as case studies, this article examines televisual reimaginations of Korean medical modernity as (re)interpretative popular culture texts. Particularly in the areas of the anatomical sciences and surgery, modern medicine’s emancipatory potentials in these productions are set semi-fictitiously in pre-modern Joseon historical contexts. Dramaturgically challenging entrenched social hierarchies and ossified cultural taboos of Institutionalized Confucianism, these dramas’ progressive physician-protagonists emphasize the universality and impartiality of medical knowledge in what is herein termed as Generative Confucianism.

“The Facts in the Case of M. Valdemar”: Undead Bodies and Medical Technology (open access)
Sarah O’Dell

This paper examines the relationship between medical technology and liminal states of “undeath” as presented in “The Facts in the Case of M. Valdemar” and the real-life case of Jahi McMath, who was maintained on life support for over four years following a diagnosis of brain death. Through this juxtaposition, “Valdemar” comes to function as a modern fable, an uneasy herald of medical technology’s potential to create liminal states between life and death. The ability to transgress these boundaries bears a cost, however: both Valdemar and Jahi McMath lose the autonomy to direct their respective narratives. Yet, their utterances “from beyond the grave” highlight the precarious nature of their position and the ethical concerns therein. Poe’s literary performance of “undeath” therefore serves to caution real-life cases in which life support is used to sustain an individual reported to be brain-dead. Such application of life-sustaining technology complicates the fundamental binary of life/death, allowing its subjects to resist textual closure. Even as Poe’s work represents an imaginative interrogation of the scientific enterprise, this nineteenth-century story holds a mirror to contemporary medical practice, inviting a reconsideration of the ethics, language, and power relations surrounding the fraught relationship between death and medical technology.

Desegregation and the retreat of clinical psychoanalysis
Christopher Chamberlin

This article examines the racial politics that reshaped psychoanalytic psychotherapy and ushered in a community mental health paradigm during the U.S. Civil Rights Era. Policymakers in the 1960s adopted the language of social justice to condemn psychoanalysis for its inability to treat psychotics and its unwillingness to treat black patients; yet the community psychiatry model of treatment that replaced it compounded the denial of the black subject’s clinical needs. Challenging the extant historiography that appraises psychoanalysis as a victim of neoliberalism and psychopharmacology, this paper examines how and why Freudian practitioners beat their own retreat from the specter of desegregation.

“May all Be Shattered into God”: Mary Barnes and Her Journey through Madness in Kingsley Hall (open access)
Adrian Chapman

Contributing to renewed scholarly interest in R. D. Laing and his circle, and in the radical therapeutic community of Kingsley Hall, London (1965-1970), this article offers the first article-length reading of Mary Barnes’ and Joseph Berke’s Mary Barnes: Two Accounts of a Journey through Madness. This text offers views of anti-psychiatry ‘on the ground’ that critique the 1960s utopianism of Laing’s championing of madness as a metanoic, quasi-psychedelic voyage. Barnes’ story, too, reveals tensions within the anti-psychiatric movement. Moving beyond existing criticism of the text, Barnes, it is argued here, emerges as far more than an exemplary patient, victim or anti-psychiatric puppet. Particular attention is paid in this reading of Two Accounts to the following: the ways in which the spiritually inclined Barnes and the psychoanalytic Berke differ in this dual narrative text; the ways in which each differs from Laing; the metaphor of the journey; and the setting of Barnes’ story in the often conflicted, experimental household of Kingsley Hall.

From Girlhood to Motherhood: Rituals of Childbirth and Obstetrical Medicine Re-Examined through John Milton
Ashleigh Frayne

This article considers how seventeenth-century writer John Milton engages in modes of thinking that register the obstetric revolution occurring during the period. During a time when physicians were gaining entry to the birthing room, a medical rhetoric of childbirth was developing that cast childbirth in new pathological terms. Milton’s A Masque Presented at Ludlow Castle demonstrates how childbirth was influenced by emerging obstetrical language and practice, as well as the ways in which a writer might question such influence. Finally, this article also draws links between disrupted historical rituals of childbirth and modern anxieties about medically-centred birthing practices.

The Voices that Accompany Me
Arthur W. Frank

This essay begins with a metaphor describing who enters the field of humanities in medicine and healthcare and the types of work they do. The role of witness is discussed, underscoring tensions between witnessing and analyzing. The essay then turns to my own background as an example of how each professional in this field brings something distinct. I briefly describe the three basic principles of my work with narrative: the injunction to keep the stories in the foreground, the work of amplifying and connecting stories, and the need for generous interpretation. The second half of the essay tells three illness stories, describing their importance to me over several decades. These stories are by Audre Lorde, Reynolds Price, and Stewart Alsop, dealing with problems of silences imposed on ill people, problems caused by physicians’ perceived lack of time, and dilemmas of the end of life, respectively.

New Genetics & Society

Reflections on the practice of Responsible (Research and) Innovation in synthetic biology (open access)
Ken Taylor, Simon Woods

This paper is a critical reflection on the concepts of Responsible Innovation (RI) and Responsible Research and Innovation (RRI). We offer an account of the emergence of these related but different accounts of responsible innovation that have recently been adopted by funders. We further report on our exploration of the knowledge and understanding of these concepts through the views of senior scientists involved in synthetic biology research projects. Though most of our respondents struggled to provide a clear account of RI/RRI we identified that existing “practices of responsibility” include many aspects of RI/RRI but that this often went unrecognized as such. Most respondents associated RI/RRI with risk avoidance. While some visions of RI/RRI see scientists as taking an active role in shaping the future of innovation, we suggest that it is not for such individuals to take decisions alone on the types of futures a society should have available to it.

Citizens under the umbrella: citizenship projects and the development of genetic umbrella organizations in the USA and the UK (open access)
Koichi Mikami

Social scientists have observed previously that patient support groups began to have significant influence over both research and clinical services of medical genetics in the early 2000s. This observation led to the idea of genetic citizenship, suggesting that the active participation and intervention of patient support groups in the rapidly growing field of medicine marked the emergence of a new form of citizenship. To understand how this citizenship emerged, this paper examines the development of umbrella organizations of genetic support groups in the USA and the UK. The historical analysis demonstrates that the ways in which these organizations developed differ considerably, and that their visions and activities reflected the different structural and cultural organizations of medical genetics in their respective countries. By recognizing the early work of these organizations as citizenship projects, this article argues that they helped rather different forms of genetic citizenship to emerge in the two countries.

Anchoring hopes in a regime of truth. The legitimizing use of cord blood-derived products in Italy
Lorenzo Beltrame

Public Umbilical Cord Blood (UCB) banking is defined by the dominant bioethics and biomedical literature as working in a regime of valuation that connects the social value of solidarity and the clinical value of collected quality UCB. Adopting the notion of registers of valuing (Heuts, F., and A. Mol. 2013. “What Is a Good Tomato? A Case of Valuing in Practice.” Valuation Studies 1 (2): 125–146), this paper challenges the aforementioned view. By exploring the Italian public system of UCB banking, it discusses disputes around the organization of the logistic of UCB donation, inspired by divergent registers of valuing enacted by involved actors. This paper focuses on the Italian public UCB banks’ involvement in experimental clinical protocols, using cells derived from UCB. It demonstrates how these experimental applications are deployed by Italian UCB bank practitioners to legitimize their work and to advance claims of jurisdictional monopoly over UCB banking and donation. It concludes that concrete arrangements of UCB banking are the outcome of negotiations among involved actors.

Commercialization of the gene-edited crop and morality: challenges from the liberal patent law and the strict GMO law in the EU
Li Jiang

The EU aspires to utilize the economic advantages of gene-editing technology on one hand and ensure human health and environmental safety on the other. Surrounding the fierce debates over emerging gene-edited plant, the current debate focused on the issue of whether the gene-edited crop should be within or outside the GMO law and its implication for innovation. It should not be forgotten that it is also involved in the complex patentability issues pertaining to the legal interpretation of the patent law. The gene-edited crop is governed by GMO regulations due to its potential risk to human health and environmental safety. But it is heavily patented, as patent regulations ignore its potential risk. This article examines the discrepancy of the gene-edited crop between the existing GMO law and the patent law and reveals the challenges to current EU jurisdiction, including the international trade impediment challenge, the patent monopoly challenge, the market confusion challenge, and the agricultural economy suspension challenge. In the end, this article argues that EU GMO regulations should be bridged with a patent system in facing the regulatory challenges from the gene-edited crop.

Genome editing: the dynamics of continuity, convergence, and change in the engineering of life (open access)
Paul Martin, Michael Morrison, Ilke Turkmendag, Brigitte Nerlich, Aisling McMahon, Stevienna de Saille, Andrew Bartlett

Genome editing enables very accurate alterations to DNA. It promises profound and potentially disruptive changes in healthcare, agriculture, industry, and the environment. This paper presents a multidisciplinary analysis of the contemporary development of genome editing and the tension between continuity and change. It draws on the idea that actors involved in innovation are guided by “sociotechnical regimes” composed of practices, institutions, norms, and cultural beliefs. The analysis focuses on how genome editing is emerging in different domains and whether this marks continuity or disruption of the established biotechnology regime. In conclusion, it will be argued that genome editing is best understood as a technology platform that is being powerfully shaped by this existing regime but is starting to disrupt the governance of biotechnology. In the longer term is it set to converge with other powerful technology platforms, which together will fundamentally transform the capacity to engineer life.

Social Science & Medicine

A disconnected policy network: The UK’s response to the Sierra Leone Ebola epidemic (open access)
James Georgalakis

This paper investigates whether the inclusion of social scientists in the UK policy network that responded to the Ebola crisis in Sierra Leone (2013–16) was a transformational moment in the use of interdisciplinary research. In contrast to the existing literature, that relies heavily on qualitative accounts of the epidemic and ethnography, this study tests the dynamics of the connections between critical actors with quantitative network analysis. This novel approach explores how individuals are embedded in social relationships and how this may affect the production and use of evidence. The meso-level analysis, conducted between March and June 2019, is based on the traces of individuals’ engagement found in secondary sources. Source material includes policy and strategy documents, committee papers, meeting minutes and personal correspondence. Social network analysis software, UCINet, was used to analyse the data and Netdraw for the visualisation of the network. Far from being one cohesive community of experts and government officials, the network of 134 people was weakly held together by a handful of super-connectors. Social scientists’ poor connections to the government embedded biomedical community may explain why they were most successful when they framed their expertise in terms of widely accepted concepts. The whole network was geographically and racially almost entirely isolated from those affected by or directly responding to the crisis in West Africa. Nonetheless, the case was made for interdisciplinarity and the value of social science in emergency preparedness and response. The challenge now is moving from the rhetoric to action on complex infectious disease outbreaks in ways that value all perspectives equally.

“It was my obligation as mother”: 18-Month completion of Early Infant Diagnosis as identity control for mothers living with HIV in Kenya
Emily A. Hurley, Beryne Odeny, Catherine Wexler, Melinda Brown, Alexander MacKenzie, Kathy Goggin, May Maloba, Brad Gautney, Sarah Finocchario-Kessler

Early Infant Diagnosis (EID) is critical to timely identification of HIV and rapid treatment initiation for infants found to be infected. Completing the EID cascade involves a series of age-specific tests between birth and 18 months and can be challenging for mother- infant pairs in low-resource settings. Even prior to recent increases in Kenya’s testing recommendations, approximately 22% of mother-infant pairs enrolled in EID were lost to follow-up. As EID cascades become increasingly complex, identifying strategies to maximize retention becomes even more essential. Despite ongoing health system improvements, we still lack a framework for understanding the individual-level, psychosocial processes underlying EID completion—insight that could be essential for shaping strategies to support patients and close gaps in retention. Our objective was to explain individual-level processes that lead to EID completion among mothers who successfully completed the EID cascade. Using qualitative methods informed by grounded theory, we conducted 65 interviews with Kenyan mothers who completed EID. We identified three themes related to completion: (1) Negative motivation, from the consequences of infant infection, fear of postnatal transmission, and burden of maternal failure; (2) Positive motivation, from achieving a final goal, responding to provider support, and maximizing infant health; and (3) Overcoming challenges, through resolve/resiliency, planning/privatizing and rejecting stigma/leveraging support. Overall, the EID cascade served as a framing process for women to secure an identity as a good mother. Successful EID completion was the product of a strong motivational foundation channeled into strategies to surmount persistent challenges. Participant accounts of overcoming challenges highlight their resiliency as well as the outstanding need to address financial, logistical, and social barriers to care. Future EID programs may capitalize on these findings by affirming patients’ quest for identity control, leveraging positive motivators, and expanding peer support structures to help mothers feel connected throughout the cascade.

Clinical empathy as emotional labor in medical work
Alexandra H. Vinson, Kelly Underman

The ongoing social transformation of the American healthcare system brings both structural and interpersonal changes to the delivery of healthcare. Some of these changes have been motivated by patients, who increasingly desire emotionally warm interactions with physicians. This is a departure from the detached concern that characterized physician-patient interactions in the mid-twentieth century. Concurrently, medical training continually adapts to trends in medical practice so that future physicians are prepared to enter practice. In this paper, we examine the rise of clinical skills training courses and assessments in medical school, highlighting the changing role of emotion in training about communication in the doctor – patient relationship. Drawing on an interpretive analysis of interviews with and ethnographic observations of medical students and residents from two United States medical schools, we elaborate the concept of clinical empathy to describe the character of emotional engagement in the contemporary clinical encounter. In the analysis we show how standards of emotional conduct are taught in medical school, how clinical empathy is operationalized in the patient encounter, and how clinical empathy may be used instrumentally to smooth the physician’s work. Finally, we position the consistent performance of clinical empathy as a form of emotional labor, expanding the reach of studies of emotional labor in professions.

Beyond the orthodox/CAM dichotomy: Exploring therapeutic decision making, reasoning and practice in the therapeutic landscapes of elite sports medicine (open access)
Catherine Coveney, Alex Faulkner, Jonathan Gabe, Michael McNamee

Elite athletes face extreme challenges to perform at peak levels. Acute and chronic musculoskeletal injuries are an occupational hazard while pressures to return to play post-injury are commonplace. Therapeutic options available to elite athletes range from novel ‘cutting edge’ biomedical therapies, established biomedical and surgical techniques, and physiotherapy, to a variety of non-orthodox therapies. Little is known about how different treatment options are selected, evaluated, nor how their uses are negotiated in practice. We draw on data from interviews with 27 leading sports medicine physicians working in professional football and cycling in the UK, collected 2014–16. Using idea of the ‘therapeutic landscape’ as a conceptual frame, we discuss how non-orthodox tools, technologies and/or techniques enter the therapeutic landscape of elite sports medicine, and how the boundaries between orthodox and non-orthodox therapy are conceptualised and navigated by sports medicine practitioners. The data provide a detailed and nuanced examination of heterogenous therapeutic decision –making, reasoning and practice. Our data show that although the biomedical paradigm remains dominant, a wide range of non-orthodox therapies are frequently used, or authorised for use, by sports medicine practitioners, and this is achieved in complex and contested ways. Moreover, we situate debates around nonorthodox medicine practices in elite sports in ways that critically inform current theories on Complementary and Alternative Medicine (CAM)/biomedicine. We argue that existing theoretical concepts of medical pluralism, integration, diversity and hybridisation, which are used to explain CAMs through their relationships with biomedicine, do not adequately account for the multiplicity, complexity and contestation that characterise contemporary forms of CAM use in elite sport.

What effect do local political elites have on infant and child death? Elected and chiefly authority in South Africa
Carlo Mershon

Under what conditions do local political elites in new democracies promote citizen health? To address the question, this paper advances hypotheses grounded in prominent political science debates and assesses them against comprehensive, granular data from the most recent South African national census. The evidence rejects the hypotheses that relatively great partisan competition and relatively great popular participation boost local population health. The evidence provides conditional support for the hypotheses that local health outcomes are enhanced in municipalities where the national ruling party commands relatively great citizen backing and where hereditary chiefs are strong. In particular, where local strongholds of the national ruling party coincide with strong chiefly authority, the predicted probability of infant and under-five death over all households is reduced, as is the predicted probability of infant and under-five death among majority Black African households, holding other things equal. In these nuanced ways, the actors holding power at the local level matter for the survival of babies and children in South Africa. The paper contributes to scholarship on institutions in new democracies, chiefly authority, the conditions for infant and under-five survival, and the political determinants of health. In doing so, it demonstrates the value of drilling down to the local level to probe the political determinants of population health.

Silent politics and unknown numbers: Rural health bureaucrats and Zambian abortion policy (open access)
Marte E.S. Haaland, Haldis Haukanes, Joseph Mumba Zulu, Marie Moland, Astrid Blystad

This article addresses the gaps between knowledge, policy and practice in reproductive health by exploring the processes involved in translating Zambian abortion policy from paperwork to practice in a predominantly rural province. Central to these processes are rural health bureaucrats, who are tasked with administering and monitoring a myriad of reproductive health policies and programmes. The articles is based on eleven months of ethnographic fieldwork in Zambia from September 2017 to August 2018, including in-depth interviews with rural health bureaucrats and participant observation in health management and policy meetings. It examines how health bureaucrats deal with the abortion-related challenges they face. Our findings reveal a complex landscape of reproductive health politics and moral double-binds and give insight into the gap between Zambia’s seemingly liberal abortion policy and the lack of access to abortion services in rural areas. Despite the bureaucrats’ knowledge about abortion policy, none of the hospitals in the study province offer legal abortion services. While many bureaucrats consider abortion to be a public health issue and see the need to offer legal services to abortion-seeking women, they often bypass abortion-related issues and treat them with silence in policy meetings and public settings. The silence corresponds with the lack of data on abortion and post-abortion care in district and provincial health offices and should be understood in relation to both the dominant moral regime of the Zambian state and global pressure towards specific reproductive health targets. This article calls for increased focus on politics and power dynamics in the state apparatus in order to understand the gaps between knowledge, policy and practice in sexual and reproductive health.

Individual and community-level impact of infertility-related stigma in Malawi
Marta Bornstein, Jessica D. Gipson, Gates Failing, Venson Banda, Alison Norris

Infertility, a common experience among women and men worldwide, remains on the margins of public health and medicine in low-resource settings. Previous studies identified associations between individual experiences of infertility and negative outcomes, particularly in contexts where childbearing is imperative, but few have examined broader implications of infertility and infertility-related stigma on communities. To understand the production and impact of infertility-related stigma, this study analyzes 12 focus group discussions (FGDs) conducted with 104 women and men in rural Malawi. FGDs, conducted July–September 2018, were used to elicit the range of community norms around family formation, pregnancy, fertility, and infertility. Data were analyzed through memo-ing during and after data collection and collaborative, thematic coding. We found that stigma manifested within existing systems of gender and power. Aligning with Link and Phelan’s stigma framework (2001) there were three primary mechanisms by which infertility-related stigma was produced and reinforced: labeling of a person perceived to be infertile (i.e., establishing ‘other’), perpetuating negative stereotypes associated with suspected causes of infertility (e.g., abortion, multiple sexual partners, weak sperm), and consequences of infertility that reinforced stigma (e.g., social ridicule and distancing, divorce). Labels, presumed causes, and consequences of infertility were entrenched within gender and sexuality norms. Women perceived as infertile were unable to follow a normative path to achieving adult status, presumed to be sexually transgressive, and considered “useless.” Men’s masculinity was questioned. Both women’s and men’s identities, as well as social positions within relationships and communities, were threatened by perceptions of infertility. Ultimately, the manifestation of infertility-related stigma contributed to an environment wherein the risk of being perceived as infertile was highly consequential and unrelenting. Pervasive stigma, at the community-level, impacts decisions around contraceptive use and timing of childbearing, as women and men not only wanted to avoid infertility, but also the appearance of infertility. 

Power, powerlessness and the politics of mobility: Reconsidering mental health geographies
James Lowe, Geoffrey DeVerteuil

We use a qualitative, longitudinal study of 25 individuals with mental illness in the UK to better understand the relationships among mental health, power/lessness and im/mobility. Framed by the rise of the new mobilities paradigm and more specifically Cresswell’s (2010) politics of mobility, we find that the extent to which the respective mobilities were expressions of internal free will or were undertaken as a result of external compulsion is a key demarcator of mental health. A key contribution is understanding the involuntary nature of (forced) immobility, or what we call entrapment. Entrapment is a punishing phenomenon, which causes distress to those unfortunate to experience it, and which can often be deepened rather than alleviated by those statutory bodies charged with providing care and support. The results speak to the need to recognize that (1) mobility is always relational and contextual, (2) (im)mobility is as much involuntary as voluntary, and that this has crucial implications for (mental) health, and (3) that the experience of individuals suffering from mental illness very much overlaps with what Philo (2017) called ‘less-than-human geographies’, providing a much-needed rebalance to the over-emphasis on well-being within health geography and (mental) health policy.

Negotiating risk and choice in multifetal pregnancies
Navjotpal Kaur, Rosemary Ricciardelli

Today, across all aspects of societal living, risk assessment is an ever-present exercise. Pervasiveness of technology in the everyday life has caused the world of ‘risk’ to change tremendously, and this is particularly true for childbearing females. The social construction of pregnancy and childbirth as, arguably, medical events that necessitate medical intervention – ever more so for multifetal pregnancies – makes it almost impossible to avoid the notions of risk that surround the events. Drawing on semi-structured interviews with 41 mothers of twins or triplets, we investigate how understandings of risk, combined with the ideology of good motherhood and information provided by physicians impact perceptions of fetal reduction or termination. We have discussed and theorized empirical findings within the framework of risk, discourses of the responsibilization of females, and the potential ‘sacred child’ in a context where selective reduction becomes a potentiality.

Neighbourhoods as relational places for people living with dementia (open access)
Andrew Clark, Sarah Campbell, John Keady, Agneta Kullberg, Kainde Manji, Kirstein Rummery, Richard Ward

An increase in the number of people living independently with dementia across the developed world has focused attention on the relevance of neighbourhood spaces for enabling or facilitating good social health and wellbeing. Taking the lived experiences and daily realities of people living with dementia as a starting point, this paper contributes new understanding about the relevance of local places for supporting those living with the condition. The paper outlines findings from a study of the neighbourhood experiences, drawing on new data collected from a creative blend of qualitatively-driven mixed methods with people living in a diverse array of settings across three international settings. The paper details some of the implications of neighbourhoods as sites of social connection based on material from 67 people living with dementia and 62 nominated care-partners. It demonstrates how neighbourhoods are experienced as relational places and considers how people living with dementia contribute to the production of such places through engagement and interaction, and in ways that may be beneficial to social health. We contend that research has rarely focused on the subjective, experiential and ‘everyday’ social practices that contextualise neighbourhood life for people living with dementia. In doing so, the paper extends empirical and conceptual understanding of the relevance of neighbourhoods as relational sites of connection, interaction, and social engagement for people living with dementia.

“Red is not the only color of a rainbow”: The making and resistance of the “MSM” subject among gay men in China
Chuncheng Liu

Public health scholars classify gay men as “men who have sex with men (MSM)” in their studies and interventions. Debates have been raised about the MSM classification for decades. However, we know little about how people who are classified as MSM perceive and respond to this classification, particularly in the authoritarian context where the biopower interacts with the repressive state power. Drawing upon Ian Hacking’s dynamic nominalism theory, this study tries to fill these gaps with interviews of 40 gay men in three Chinese cities about their interactions with public health education materials. I examined their perceptions of MSM knowledge and discourses associated with the classification, as well as their identifications to the MSM subject. I found that, on the one hand, many gay men had internalized the MSM subjectivity and considered themselves essentially at high risk of HIV infection. This compliance was constructed through various biopower techniques with the support of the state’s repressive power, as the Chinese state censored almost all public representations of gay men except the HIV/AIDS subject MSM. On the other hand, some of my interviewees were resistant to be part of the MSM classification. I showed how this failure is an unintended consequence of the hegemonic MSM discourse and the authoritarian regime’s institutional exclusion of the gay men’s community’s engagement in the expertise network that develops intervention materials and strategies. At last, I proposed to move beyond the debate around the name and representational character of the MSM by moving toward a more reflexive public health.

“You see, we women, we can’t talk, we can’t have an opinion…”. The coloniality of gender and childbirth practices in Indigenous Wixárika families (open access)
Jennie B. Gamlin

How women make decisions about care-seeking during pregnancy and childbirth, is a key determinant of maternal and child health (MCH) outcomes. Indigenous communities continue to display the highest levels of maternal and infant mortality in Mexico, a fact often accounted for by reference to inadequate access to quality services. A growing body of research has identified gender inequality as a major determinant of MCH, although this has rarely been situated historically in the context of major social and epistemological shifts, that occurred under colonialism. I used a feminist ethnography to understand the structural determinants of Indigenous maternal health. I drew on research about the colonial and post-colonial origins of ethnic and gender inequality in Mexico and specifically the Wixárika Indigenous region, in order to identify the different ways in which women have historically been disadvantaged, and the processes, situations and interaction dynamics that emerged from this. Sixty-four Wixárika women were interviewed while pregnant, and followed up after the birth of their child between January 2015 and April 2017. These data were triangulated with structured observations and key informant interviews with healthcare providers, teachers, community representatives and family members. The findings suggest that gender inequalities were introduced with the colonial system for governing Indigenous regions, and became naturalised as Wixárika communities were increasingly integrated into the Mexican nation. The associated structures of marriage, community and interpersonal relationships now operate as forms of institutionalised gender oppression, to increase Indigenous women’s vulnerability, and influence decisions made about care and childbirth. Ethnographic data analysed in historical context evidence the continuity of colonial forms of inequality, and their impact on wellbeing. While welfare and health programmes increasingly aim to address gender inequality on social and relational levels, by rebalancing gendered household dynamics or empowering women, the historical and colonial roots of these inequalities remain unchallenged.

Accomplishing an adaptive clinical trial for cancer: Valuation practices and care work across the laboratory and the clinic (open access)
Julia Swallow, Anne Kerr, Choon Key Chekar, Sarah Cunningham-Burley

A new generation of adaptive, multi-arm clinical trials has been developed in cancer research including those offering experimental treatments to patients based on the genomic analysis of their cancer. Depending on the molecular changes found in patients’ cancer cells, it is anticipated that targeted and personalised therapies will be made available for those who have reached the end of standard treatment options, potentially extending survival time. Results from these trials are also expected to advance genomic knowledge for patients in the future. Drawing on data from a qualitative study of one such trial in the UK, comprising observations of out-patient clinic appointments, out-patient biopsy procedures, laboratory work, and interviews with practitioners, this paper explores how the clinical and research value of one such trial was accomplished in everyday practice by focussing on the work of clinical trials and laboratory staff across recruitment, laboratory analysis, and results management. In the face of numerous potential set-backs, disappointments and failure, we explore how practitioners worked to balance the need to meet established measures of value such as numbers of patients recruited into the trial, alongside cultivating the value of positive affects for patients by managing their expectations and emotions. This care work was performed primarily by practitioners whose roles have historically been devalued in healthcare practice and yet, as we show, were critical to this process. We conclude by arguing that as complex multi-arm adaptive trials become more commonplace, we need to attend to, and render visible, the dynamic and care-full valuation practices of backstage practitioners through which experimental biomedicine is accomplished, and in doing so show that care both achieves clinical and research value, and is also a series of practices and processes that tends to tissue, patients and staff in the context of ever-present possibility of failure.

Morality in sugar talk: Presenting blood glucose levels in routine diabetes medical visits
Roberto E. Montenegro, Gonen Dori-Hacohen

Diabetes is a chronic illness with individual, social, and structural-level factors that contribute to its successful management. This paper utilizes conversation analysis to analyze a corpus of 60 audiotaped adult doctor-patient interactions. We examine how patients with diabetes and their physicians discuss blood glucose level management, including how physicians present patients with their test results and how patients respond to these presentations given the possible moral orientation around these activities. We show that physicians are more likely to present “good” blood sugar levels using assessments that explicitly evaluate the patients’ condition. Contrastingly, physicians present “bad” glucose levels using report formats of numerical values alone. Interactionally, this requires that patients respond to these numbers by making sense of or accounting for their glucose level. The different practices of discussing blood glucose levels suggests that physicians approach this topic cautiously. This sensitivity balances epistemic asymmetry and may help physicians avoid direct moral characterizations of their patients. Our analysis connects interactional practices to the continuous negotiation of both medical epistemic responsibility and morality between physicians and patients with diabetes as well as the implications this may have in the medical management of this illness.

Atmospheres of engagement within a German drug consumption room
Tristan Duncan, Bernadette Sebar, Jessica Lee, Cameron Duff

Drug consumption rooms directly attempt to intervene in and govern the place and time of drug use. Whilst the risk-reducing potentials of these interventions have been thoroughly evaluated, the consumption room literature offers fewer insights into the embodied, affective and situated dynamics that underscore service delivery. In this paper, we take up the notion of atmosphere to explore these dynamics in greater depth. Drawing on 12 months of ethnographic research in a German drug consumption room, we describe the manner in which atmospheres came to pervade and condition service encounters. More than simply providing texture to activities within the consumption room, we show how atmospheres gave rise to a distinct range of bodily capacities and therapeutic effects. Critically, these atmospheric affordances exceeded the risk-reducing objectives of the consumption room to encompass an emergent capacity to find repose, enact respite and foster modes of sociality and care. Our analysis further highlights the contextual contingencies through which the atmospheres of the consumption room emerged, including the efforts of both staff and clients to cultivate and control particular atmospheric qualities. We conclude by considering how closer attention to the atmospheric and affective dimensions of service delivery may challenge how consumption room interventions are enacted, valued and researched. This is to gesture towards a novel, atmospheric mode of harm reduction that has effects by transforming embodied potentials for both staff and clients.

Resisting governance and the production of trust in early psychosis intervention
Elaine Stasiulis, Barbara E. Gibson, Fiona Webster, Katherine M. Boydell

Trust is vital in mental healthcare where uncertainty and risk prevail and where relationship building is central to effective service delivery. Despite its significance, research on trust, particularly among multi-disciplinary healthcare teams and between service providers and users is limited and explored only tangentially within early psychosis intervention (EPI) programs. An institutional ethnographic approach is used to examine how trust within an EPI setting is produced and operates. Drawing on participant observation, textual analysis of clinic documents and in-depth interviews with 27 participants (staff, young people and family members), our analysis outlines how the clinic manager’s and staff’s resistance to hospital rulings that impeded EPI policy principles were part of the extended sequence of activities that produced trust. These acts of resistance, alongside the clinic manager’s reflective leadership practices, cultivated spaces for staff to take risks, share their ideas and build consensus – culminating in staff-designed protocols that produced trust among one another, and between service providers and young people and their families. Drawing from Brown and Calnan’s framework of “vicious” and “virtuous” cycles of (dis)trust, we highlight how management and staff responses to vulnerability and uncertainty generated trust through their communication practices and knowledge sharing. We also suggest that protocols to manage the risk of medication non-adherence and treatment dis-engagement among young people contained regulatory functions, pointing to the complex interplay of trust, control and risk. Study implications suggest shifting the emphasis from risk management and quality governance as an organizing framework in mental health to a framework based on trust.

Missing Mayberry: How whiteness shapes perceptions of health among white Americans in a rural Southern community
Caroline R. Efird, Alexandra F. Lightfoot

Elucidating how the racialized social system of whiteness affects the health of white Americans is critically important given current trends. Mirroring the nation, whites in rural North Carolina are currently experiencing increases in early mortality at greater levels than any other racial group in the state. Health focused oral history interviews conducted with whites (n = 13) in an economically distressed, rural community provide insight into potential determinants of this trend. Interview transcripts were coded and analyzed using a modified grounded theory approach. Analysis was guided by the whiteness and health framework, which considers how structural racism is both health promoting and health harmful for whites. Analysis highlighted three key themes: color-blind ideology, belief in the American Creed, and resistance to change. Whiteness influenced these rural whites’ beliefs such that they were blind to the experiences of people of color in their community. Their explicit and figurative nostalgia for The Andy Griffith Show‘s idyllic town of Mayberry (a fictional Southern community devoid of Black American characters and racial tension during the 1960s) exposed color-blind expectations of what it means to have a healthy community. Additionally, interviewees attributed health status to individual effort and health behaviors, rather than considering how macro-level social determinants impact health. Individual level blame and resistance to change influenced interviewees’ political views and suspicion of some social programs that could benefit the health of their community. These meritocratic beliefs about hard-work and self-sufficiency have implications for individual and community level health outcomes.

Social, ethical, and other value judgments in health economics modelling (open access)
Stephanie Harvard, Gregory R. Werker, Diego S. Silva

Modelling is a major method of inquiry in health economics. In other modelling-intensive fields, such as climate science, recent scholarship has described how social and ethical values influence model development. However, no similar work has been done in health economics. This study explored the role of social, ethical, and other values in health economics modelling using philosophical theory and qualitative interviews in British Columbia, Canada. Twenty-two professionals working in health economics modelling were interviewed between February and May, 2019. The study findings provide support for four philosophical arguments positing an essential role for social and ethical values throughout scientific inquiry and demonstrate how these arguments apply to health economics modelling. It highlights the role of social values in informing early modelling decisions, shaping model assumptions, making trade-offs between desirable model features, and setting standards of evidence. These results point to several decisions in the modelling process that warrant focus in future health economics research, particularly that which aims to incorporate patient and public values.

Abrahamic traditions and egg freezing: Religious Women’s experiences in local moral worlds
Marcia C. Inhorn, Daphna Birenbaum-Carmeli, Mira D. Vale, Pasquale Patrizio

In this article, we elucidate how elective egg freezing (EEF) has been received within the three Abrahamic traditions—Judaism, Christianity, and Islam—and how these religion-specific standpoints have affected the EEF experiences of women who self-identify as religiously observant. Through an analysis of religious women’s narratives, the study explores the “local moral worlds” of religious women who chose to freeze their eggs for non-medical reasons. It draws on ethnographic interviews with 14 women in the United States and Israel who had completed at least one EEF cycle, and who were part of a large, binational study that interviewed, between 2014 and 2016, 150 women who pursued EEF. These religious women, who were all highly educated, faced a particular challenge in finding appropriate marriage partners. Feeling pressured but still hopeful to marry and create large families, the women used EEF to extend their reproductive timelines and reduce their anxieties. As the study showed, the women reinterpreted or reconciled religious restrictions on the use of EEF in various ways, believing that their ultimate pursuit of religiously sanctioned reproduction justified the means. This study, which is the first to compare Jewish, Christian, and Muslim women’s experiences of EEF, illustrates how this novel technology is now shaping the local moral worlds of religious women.

Care organising technologies and the post-phenomenology of care: An ethnographic case study (open access)
Sara E. Shaw, Gemma Hughes, Sue Hinder, Stephany Carolan, Trisha Greenhalgh

Care organising technologies are software applications that are intended primarily for informal carers, to help organise, document and coordinate caring work. These may be purchased privately or provided as part of state support. Take-up to date remains low. Based on empirical case studies of three such technologies and drawing on post-phenomenology and political science, we examined people’s experience of caring when caring technologies find a way into their lives. Our findings show how care organising technologies have evolved in a political context that assumes informal support will supplement and sometimes substitute for state support. Technologies were largely designed to foreground the technical and organisational aspects of care such as planning meals, coordinating medication, and allocating and monitoring tasks among carers. For carers, the result was often a flattening of the landscape of care such that the socio-emotional work of caring was rendered invisible and relations between cared-for and caregiver were configured in narrow transactional terms. For a small number of carers, the focus on tasks was out of tune with their (often emotionally charged) experiences of care and led to active rejection of the technology. However, we also found examples of caregivers and the individuals they cared for using technologies adaptively to facilitate and embed existing care relationships. In these examples, the material/technical, socio-emotional and bodily aspects of caring were interwoven with the situated context of close, unique and evolving relationships. We conclude that the design and development of caring technologies would benefit by being informed by a broader orientation of caring as a relational practice.

Neural imaginaries at work: Exploring Australian addiction treatment providers’ selective representations of the brain in clinical practice (open access)
Anthony I. Barnett, Martyn Pickersgill, Ella Dilkes-Frayne, Adrian Carter

Although addiction neuroscience hopes to uncover the neural basis of addiction and deliver a wide range of novel neuro-interventions to improve the treatment of addiction, the translation of addiction neuroscience to practice has been widely viewed as a ‘bench to bedside’ failure. Importantly, though, this linear ‘bench to bedside’ conceptualisation of knowledge translation has not been attentive to the role addiction treatment providers play in reproducing, translating, or resisting neuroscientific knowledge. This study explores how, to what extent, and for what purpose addiction treatment providers deploy neuroscientific representations and discuss the brain in practice. It draws upon interviews with 20 Australian treatment providers, ranging from addiction psychiatrists in clinics to case-workers in therapeutic communities. Our findings elucidate how different treatment providers: (1) invoke the authority and make use of neuroscience in practice (2) make reference to neuroscientific concepts (e.g., neuroplasticity); and sometimes represent the brain using vivid neurobiological language, metaphors, and stories; and, (3) question the therapeutic benefits of discussing neuroscience and the use of neuroimages with clients. We argue that neurological ontologies of addiction, whilst shown to be selectively and strategically invoked in certain circumstances, may also at times be positioned as lacking centrality and salience within clinical work. In doing so, we render problematic any straightforward assumption about the universal import of neuroscience to practice that underpins narratives of ‘bench to bedside’ translation.

The socio-material self-care practices of children living with hemophilia or juvenile idiopathic arthritis in Denmark
C.M. Bagge-Petersen, M. Skovdal, H. Langstrup

Growing up with a chronic disease can take its toll on children and their families, and if poorly managed, be disruptive to children’s long-term health and wellbeing. While parents and health service providers do play a central role in disease management, children’s own self-care practices often go unnoticed. In existing literature, children’s self-care practices only tend to emerge in research with adolescents who “transition” from pediatric to adult clinical care services. This study was conducted in December 2017 to May 2018 and explores ethnographically the self-care practices of children affected by hemophilia or juvenile idiopathic arthritis in Denmark, with a particular interest in how social relations and material context affect their pre-transition self-care practices. A total number of 16 children and adolescents aged 7–17 years and 39 family members participated in the study. We find that the children participate in three socio-material self-care practices. Firstly, the children actively engage in home treatment of their bodies by changing the setup of medical equipment and incorporating everyday materialities to make treatment more comfortable. Secondly, they play games imitating their own treatment, using medical equipment on dolls or teddy bears to seek out experience and learning. Thirdly, they seek a sense of normality by tactically hiding material signifiers of their disease in online and offline encounters with peers. Our findings suggest that children living with a chronic disease establish and participate in a range of different self-care practices, and actively mobilize people and things around them to achieve precisely this. We conclude that these socio-material self-care practices are central to helping children make sense of living with chronic disease, both to maintain health and wellbeing, but also to gain greater independence. We encourage others to recognize children’s pre-transition self-care practices, and the implications of these agentic capabilities.


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