Here is a selection of articles published in February. Enjoy!
Cultural Anthropology (Open Access)
Vital Labors: Transacting Oocytes across Borders in the Post-Soviet Space (open access)
Anthropological accounts of labor mobility in the post-Soviet region have tended to focus on the commoditization, securitization, and illegalization of migrant wage labor, rather than on the generation of surplus through the harnessing of mobile life itself. Bringing together discussions of “clinical labor” (Cooper and Waldby 2014) with analysis of migrant wage work, the essay explores strategies of transnational recruitment for supposed Asian oocyte vendors by Russian, Georgian, and Ukrainian fertility clinics seeking to meet a growing demand for donor eggs for Chinese commissioning couples. In this bioeconomy, value is generated from the differential mobility and transactional value of human and nonhuman bodies, body parts, and genetic material across territorial, administrative, and juridical borders. The essay investigates how the recruitment of oocyte vendors intersects with other unequal circuits of movement to argue for an expanded account of labor migration in the post-Soviet space.
Ontological Collateral: The Entanglement of “Cancer Pain” and “Chronic Non-Cancer Pain” in Thailand (open access)
Social scientists have long argued that medical objects (categories, bodily processes, and experiences) emerge in historically contingent ways. Based on ethnographic fieldwork in Thailand, I describe a special case of this: ontological collateral, the emergence of one medical object due to its entanglement with another. “Cancer pain” recently became a widely accepted category in Thailand to permit the administration of opioid pain medications for cancer patients dying at home. But the category has proven porous, leading many to claim that they now must treat “chronic non-cancer pain” with opioids as well. Others characterize chronic pain as a Western invention, claiming that recognizing it will harm Thai bodies and minds. The result has been an anti-ontological choreography, a dance of becoming and resistance based on a collective understanding that categories, bodies, and experiences are so intertwined that they risk cascading into one another.
From Hoping to Expecting: Cochlear Implantation and Habilitation in India (open access)
Michele Ilana Friedner
While scholars have attended to disability as a new normal that is increasingly present as a category and experience in public spheres, this essay argues that technologies such as cochlear implants and accompanying therapeutics make it possible for children to “become normal.” Parents come to expect, rather than hope, that interventions will work. An analysis of habilitating children with cochlear implants in India—and habilitation as a process and practice in general—foregrounds the ways that potentiality attaches to certain kinds of devices, therapeutic methods, and people because of the presumed existence of malleability. Habilitation in the case of cochlear implants means developing a hearing brain and becoming a listening and speaking person. Potentiality and ideal habilitative trajectories wane with age and families must negotiate expectations in relation to sharply etched ideas of what is normal. This essay stresses that just as scholars have critically attended to rehabilitation, habilitation too is an important process of activating what is perceived to be latent and has future-oriented stakes.
The social life of biomedical data: Capturing, obscuring, and envisioning care in the digital safety-net (open access)
Taylor Marion Cruz
Biomedical investment in digital technologies has flooded society with staggering volumes of data, spurring high-tech innovations such as performance metrics, clinical algorithms, and public data dashboards. In examining the social life of data artifacts, scholars draw from actor-network theory to emphasize data’s ability to represent social reality while circulating within it, while others suggest formal data models fail to account for invisible relations on the ground. Yet little work has examined the role of human reflexivity in crafting complex human-data configurations in practice, such as how situated human actors relate to data representations within the social reality they intimately know themselves. Drawing on ethnographic fieldwork of Electronic Health Records (EHRs) and data analytics integration from inside the digital safety-net, this article shows how health care workers recognize data simultaneously capture, obscure, and envision their everyday work of caring for the marginalized. By demonstrating how the same data point may in one context demonstrate good care while in another obscure it, these findings suggest need to broaden attention to the social life of data beyond delimited focus on standards and their travels. Digital technologies do not simply capture the social, but multiply it. Biomedical data then do not have one social life, but many.
“Land is everything, land is us”: Exploring the connections between climate change, land, and health in Fort William First Nation (open access)
Lindsay P. Galway, Elizabeth Esquega, Kelsey Jones-Casey
The myriad and cumulative impacts of climate change on land, communities, and health are increasingly evident worldwide. Throughout 2019 and 2020, Fort William First Nation and researchers at Lakehead University conducted a project to document and understand connections among climate change, land, and health from the perspective of Elders, knowledge keepers, and community members with close ties to the land. Fort William First Nation is an Anishinaabe community located on the shores of Lake Superior/Kitchigami in Northern Ontario and within Robinson-Superior Treaty territory. This paper describes the analysis of interviews with 22 community members. Two-Eyed Seeing, an approach that centers the working together of Indigenous and non-Indigenous knowledges and peoples and demands respectful relationship building, guided our project and analysis. Our analysis identified five themes: 1) observations and experiences of changes on the land, 2) lack of care and respect for Mother Earth as the root cause of climate change, 3) healthy land, healthy people, 4) youth and future generations, and 5) (re-)connecting with land and culture. ‘All our Relations’ is a thread woven across these themes emphasizing that climate change is understood and experienced through relationships and relationality. As concluding thoughts and reflections, we share three specific offerings of particular relevance to those engaging in climate change and health research and action with Indigenous peoples and communities. First, this research has highlighted the importance of explicitly centering land when exploring the links between climate change and health. Second, we reflect on the value of both the Two-Eyed Seeing approach and the Medicine Wheel in guiding climate change and health research. Third, we argue for an explicit focus on relationships and relationality in efforts aimed at understanding and addressing climate change.
Patient participation in priority setting: Co-existing participant roles (open access)
Mette B. Steffensen, Christina L. Matzen, Sarah Wadmann
Reflecting a ‘participatory turn’ in healthcare, a variety of activities have been adopted in many countries to harness the views of patients, relatives and service users. While celebrated as a way of empowering patients and increasing the legitimacy of decisions that impact on patient care, critics contend that practices of patient participation often fall short of the ideals they purport to implement. In this article, we investigate how patients’ participation in medical priority setting corresponds with the regulative ideals of deliberation and how the practices of participation influence the ability of patients to make their voices heard. Building on document analysis and semi-structured interviews with 12 patient representatives and four scientific officers in the Danish Medicines Council, the analysis demonstrates that conflicting notions of valid knowledge constituted a main challenge for patient participation. The study contributes to the literature on patient participation through a conceptualization of four co-existing participant roles: 1) compliant keepers of experiential knowledge, 2) lay experts investing in evidence production, 3) knowledge translators engaged in alliance building, and 4) demonstrators promoting public contestation. We suggest that a main challenge for PP initiatives is to take into account this variation in patients’ engagement.
The passivists: Managing risk through institutionalized ignorance in genomic medicine (open access)
As the era of big data transforms modern medicine, clinicians have access to more health data than ever. How do medical providers determine which data are relevant to patient care, which are irrelevant, and which may be inappropriately used to justify potentially harmful interventions? One of the most prominent medical fields to address these questions head on – clinical genomics – is actively debating how to assess the value of genomic data. In-depth interviews with clinicians and a content analysis of policy documents demonstrate that while many clinicians believe that collecting as much patient data as possible will lead to better patient care, a sizeable minority of clinicians preferred to collect less data. These clinicians worried that large genomic tests provided too much data, leading to confusion and inappropriate treatment. Clinical geneticists have also started developing the concept of “actionability” to assess which types of genomic data are worth collecting and interpreting. By classifying data as useful when it can or should lead to action, clinicians can formalize and institutionalize what types of data should be ignored. But achieving consensus about what counts as “actionable” has proven difficult and highlights the different values and risk philosophies of clinicians. At the same time, many clinicians are fighting against the ignorance arising from genomic databases predominantly filled with samples from European ancestry populations. Debates about how and when to institutionalize ignorance of health data are not unique to clinical genomics, but have spread throughout many fields of medicine. As the amount of health data available to clinicians and patients grows, social science research on the politics of knowledge and ignorance should inform debates about the value of data in medicine.
Embracing and rejecting the medicalization of autism in Italy
Alice Scavarda, M. Ariel Cascio
Medicalization is increasingly recognized as a bidirectional process, with patients and their families as agents. The paper considers the specific case of the medicalization of autism in Italy, from the point of view of parents of autistic people with different levels of support needs. Through reporting and comparing results of two independently conducted qualitative studies, this paper aims to analyze how parents embrace and resist the medicalization of autism in their everyday lives and in healthcare contexts. Both studies involved participant-observation with services that targeted autistic people and interviews with parents, professionals, and autistic people. Results show that parents of autistic people both embrace and resist medicalization. While parents (sometimes ambivalently) accept the responsibilization inherent in their engagement with interventions (a sort of “therapeutization” of life) and reject lay expertise by deferring to experts’ knowledge, they also resist the application of medical labels, language and practices in various ways in their everyday lives. Both embracing and resisting medicalization can be useful for achieving overarching social goals of being a good parent, helping their children, and pursuing respect and social harmony. Medicalization derives not only from the cultural dominance of medical discourses, which seems to incorporate resistance to medicalization stances, but also from the absence of continuity and coordination of services, particularly in the Italian context of public (but increasingly privatizing) health and welfare services.
Syndemic theory, methods, and data (open access)
Emily Mendenhall, Timothy Newfield, Alexander C. Tsai
[…] The theory of syndemics is relevant for understanding the pandemic because COVID-19 demonstrates affliction due to both disease concentration and disease interaction driven by harmful social conditions—the central tenets of Singer’s (1996) original theory. In his initial proposal, syndemics are stitched together by three rules: two or more diseases cluster together in time or space; these diseases interact in meaningful ways, whether social, psychological, or biological; and harmful social conditions drive these interactions. We designed this Special Issue specifically to address the need for innovative scholarship around how syndemics are measured and therefore understood as locally driven.
[…] This Special Issue puts some innovative epistemologies and methodologies on the table. The methodological and theoretical responses to the critiques that have been raised will be imperative to moving our understanding of syndemics (and hence the utility of the concept) forward. This agenda will require transdisciplinary teams of scholars working together to understand where, when, how, and why conditions move together within one population, region, or area more virulently than another. This phenomenon was exemplified by COVID-19 and will only intensify with changes in climate and emerging infectious diseases.
The papers in this Special Issue share a common theme in their empirical research: the importance of understanding how diseases emerge, interact, and change through time. While each paper makes a contribution to its own discipline, perhaps more importantly, this collection of articles represents the most diverse set of methodologically and analytically varied thinking about how syndemics produce disparate health problems in some populations and not others. Taken together, these studies provide a comprehensive view of how syndemics emerge, converge, and change, and what are the best methods to measure these interactions.
Intersectionality and syndemics: A commentary
Thurka Sangaramoorthy, Adia Benton
This commentary addresses the possibilities and pitfalls of putting intersectionality and syndemics into conversation with each other. We engage with two studies published in this issue: the first on the health-related vulnerabilities among LGBTQ + Latinx men in Orlando after the Pulse nightclub shooting, and the other on syndemic health issues brought about by social and structural inequities among young Black gay, bisexual, and other men who have sex with men (GBM). Both manuscripts suggest that intersectionality and sydemics can be integrated or possibly merged to build effective health equity focused interventions for marginalized populations. We, however, argue that there are several methodological, ontological, and epistemological challenges in bringing together intersectionality and syndemics. Our argument coalesces around three key points. First, we contend that while it is feasible to think of their integration as useful to the study of health disparities, syndemics offers no added benefit to health scholarship grounded in intersectional analysis. Second, we argue that assumptions of common ground between intersectionality and syndemics rest on equating theories of interaction and additivity with critiques of mutual configurations of ideology, power structures, and social categories. Finally, we maintain that if intersectionality and syndemics are to be in conversation with each other, it must be done with the recognition and examination of where each framework situates itself relative to methodology, praxis, and power. Using our own work and those of intersectional feminist scholars, we demonstrate how the stakes of intersectionality diverge radically from those of syndemics, and how syndemics has the potential to undermine the significance of intersectionality for addressing issues of health equity.
Suicide in cultural context: An ecosocial approach (open access)
Laurence J. Kirmayer
This article introduces a thematic issue of Transcultural Psychiatry on suicide in cultural context. Developmental and social structural factors including exposure to violence, childhood abuse and privation, as well as intractable social problems that create psychic pain and a sense of entrapment have been shown to increase the risk of suicidal behavior. However, all of the major social determinants identified in suicide research are influenced or mediated by particular cultural meanings and contexts. To move beyond crude generalizations about suicide based on psychological theories developed mainly in Western contexts and culture-specific prototypes or exemplars, we need more fine-grained analysis of the experience of diverse populations. The articles in this issue provide clear illustrations of the impact of cultural and contextual factors in the causes of suicide, with implications for psychiatric research, theory, and practice. Cross-cultural research points to the possibility of developing a typology of social predicaments affecting specific sociodemographic groups and populations. This typology could be elaborated and applied in clinical and public health practice through an ecosocial approach that considers the ways that suicide is embodied and enacted in social systemic contexts.
SAGE advice and political decision-making: ‘Following the science’ in times of epistemic uncertainty
This article presents a preliminary analysis of the advice provided by the UK government’s Scientific Advisory Group for Emergencies (SAGE) held between 22 January and 23 March 2020 in response to the emerging coronavirus pandemic. Drawing on the published minutes of the group’s meetings, the article examines what was known and not known, the assumptions and working practices that shaped their work, and how this knowledge was reflected in the decisions made by the government. In doing so, the article critically examines what it means for policy making to be ‘led by the science’ when the best available science is provisional and uncertain. Using ideas of ‘externality’ and ‘evidential significance’, the article argues that the apparent desire for high levels of certainty by both scientists and political decision-makers made early action impossible as the data needed were not, and could not be, available in time. This leads to an argument for changes to the institutions that provide scientific advice based on sociologically informed expectations of science in which expert judgement plays a more significant role.
‘A woman and now a man’: The legitimation of sex-assignment surgery in the United States (1849–1886) (open access)
Throughout much of recorded history, societies that assigned rights and duties based on sex were confounded by people with unclear sex. For the sake of maintaining social and legal order in those contexts, legal systems assigned these people to what they figured was the ‘most dominant’ sex. Then, in mid-19th century United States, a new classification mechanism emerged: sex-assignment surgery, which was imagined by some surgeons to ‘fix’ one’s physical and legal sex status permanently. Other surgeons, however, fiercely opposed the new practice. This article traces the controversy around sex-assignment surgery through three high-profile cases published in US medical journals from 1849 to 1886. Its central argument is that the more general effort to transform surgery into a scientific field helped legitimate the practice of sex-assignment surgery. Although such surgery was subject to intense moral criticism because it was thought to breach the laws of men and nature, over time, these concerns were abandoned or transformed into technical or professional disagreements. In a secondary argument, which helps explain that transformation, this article shows that surgeons gradually became comfortable occupying the epistemic role of sex-classifiers and even sex-makers. That is, whereas sex classification was traditionally a legal task, the new ability to surgically construct one’s genitals engendered the notion that sex could be determined and fixed in the clinic in a legally binding manner. Accordingly, I suggest that surgery became an epistemic act of fact-making. This evolution of the consensus around sex-assignment surgery also provides an early origin story for the idea of sex as plastic and malleable by surgeons, thus offering another aspect to the history of plastic sex.
Precision patients: Selection practices and moral pathfinding in experimental oncology (open access)
Mie S. Dam, Sara Green, Ivana Bogicevic, Line Hillersdal, Iben Spanggaard, Kristoffer S. Rohrberg, Mette N. Svendsen
This paper addresses selection practices in a Danish phase 1 unit specialised in precision medicine in the field of oncology. Where precision medicine holds the ambition of selecting genetically fit medicine for the patient, we find that precision medicine in the early trial setting is oriented towards selecting clinically and genetically fit patients for available treatment protocols. Investigating how phase 1 oncologists experience and respond to the moral challenges of selecting patients for early clinical trials, we show that inclusion criteria and patient categories are not always transparent to patients. Lack of transparency about inclusion criteria has been interpreted as morally problematic. Yet drawing on social science studies of ‘unknowing’, we argue that silence and non-transparency in interactions between oncologists and patients are crucial to respect the moral agency of patients at the edge of life and recognise them as belonging to the public of Danish health care. In the discussion, we consider the practice of placing ‘unfit’ patients on a waiting list for trial participation. Rather than representing an ethical and political problem, we argue, the waiting list can act as a valve enabling oncologists to navigate the scientific and as well as the moral uncertainties in phase 1 oncology.