Here’s the first part of November’s round-up of new journal articles that may be of interest. Enjoy!
Borderlands of Life: IVF Embryos and the Law in the United States, United Kingdom, and Germany (open access)
Sheila Jasanoff, Ingrid Metzler
Human embryos produced in labs since the 1970s have generated layers of uncertainty for law and policy: ontological, moral, and administrative. Ontologically, these lab-made entities fall into a gray zone between life and not-yet-life. Should in vitro embryos be treated as inanimate matter, like abandoned postsurgical tissue, or as private property? Morally, should they exist largely outside of state control in the zone of free reproductive choice or should they be regarded as autonomous human lives and thus entitled to constitutional protection like full-fledged citizens? Administratively, if they deserve protection, what institutional and policy mechanisms are best suited to carrying out the necessary oversight? Using a method termed comparative problematization, this article traces divergent answers to these questions produced in three countries—the United States, United Kingdom, and Germany—across the last twenty-five years. Comparison reveals distinct bioconstitutional foundations that give rise to systematically different understandings of each state’s responsibilities toward human life and hence its particular treatment of claims on behalf of embryonic lives.
Bioconstitutional Imaginaries and the Comparative Politics of Genetic Self-knowledge
J. Benjamin Hurlbut, Ingrid Metzler, Luca Marelli, Sheila Jasanoff
Genetic testing has become a vehicle through which basic constitutional relationships between citizens and the state are revisited, reaffirmed, or rearticulated. The interplay between the is of genetic knowledge and the ought of government unfolds in the context of diverse imaginaries of the forms of human well-being, freedom, and flourishing that states have a duty to support. This article examines how the United Kingdom, Germany, and the United States governed testing for Alzheimer’s disease, and how they diverged in defining potential harms, benefits, and objects of regulation. Comparison before and after the arrival of direct-to-consumer genetic tests reveals differences in national understandings of what it means to protect life and citizenship: in the United Kingdom, ensuring physical wellness through clinical utility; in the United States, protecting both citizens’ physical well-being and freedom to choose through a framework of consumer protection; and in Germany, emphasizing individual flourishing and an unburdened sense of human development that is expressed in genetic testing law and policy as a commitment to the stewardship of personhood. Operating with their own visions of what it means to protect life and citizenship, these three states arrived at settlements that coproduced substantially different bioconstitutional regimes around Alzheimer’s testing.
Through a Critical Lens: Expertise in Epidemiology for and by Indigenous Peoples (open access)
Epidemiology for and by Indigenous peoples uses quantitative and statistical methods to better document Indigenous health concerns, and is oriented around providing data for use in advocacy to promote Indigenous health equity. This advocacy-oriented, technoscientific work bridges the often distinct social worlds of Indigenous communities, professional public health research, and public policy-making. Using examples from a multisited ethnographic study in three settings (Aotearoa New Zealand, Hawai’i, and the continental United States), this paper examines the forms of expertise that researcher/practitioners enact as they conduct research that simultaneously harnesses epidemiology’s persuasive power in social worlds like public health and public policy, while also critically challenging legacies of colonialist erasures and misrepresentations of Indigenous health in population statistics. By demonstrating how these continual translations across multiple social worlds enact expertise, this analysis offers a new integration of discussions about both coloniality and expertise within science and technology studies (STS). By focusing on the experiences of technoscientific professionals themselves, this study’s findings also pose new questions for broader STS conversations about how activism is shaping the production of knowledge about health in the twenty-first century.
A Sociotechnical History of the Ultralightweight Wheelchair: A Vehicle of Social Change
Hilary Stewart, Nick Watson
The emergence of the ultralightweight wheelchair has transformed the lives of millions of disabled people. It has radically changed the principles and practices of wheelchair design, manufacture, and prescription and redefined wheelchair users and wheelchair use. Designed and built largely by wheelchair users themselves, it was driven initially by a desire to improve sport performance and later by a wish for improved access to the community and built environment. In this paper, we draw on oral histories and documentary sources to reconstruct its sociotechnical history. We employ the analytical concept of “boundary object” to illuminate how the wheelchair as a technological artifact is implicated in relations of social change and show the role of wheelchair users in the development and emergence of the ultralightweight wheelchair. We highlight the tensions and negotiations within this history and the push and pull between different social groups. The emergence of the ultralightweight wheelchair helped to reconfigure ideas about wheelchairs and their users and allowed wheelchairs to gain a foothold within broader social and technological infrastructures. What makes this account powerful is that this is a success story for a group who have historically been excluded from design processes.
Smart Cards for All: Digitalisation of Universal Health Coverage in India
Marine Al Dahdah, Rajiv K. Mishra
In less than ten years, India has launched colossal biometric databases. One among them is related to the first ‘free’ health coverage scheme offered by the government of India: the Rashtriya Swasthya Bima Yojna (RSBY). Based on a public–private partnership between government and private companies, RSBY national scheme was launched in 2008, as a first step towards universal health coverage in a country where households endorse 70% of health expenses. The first phase of RSBY offers to cover ₹30,000 ($600) of inpatient expenses per year for five members of a below poverty line household and is now piloted in several Indian States to include outpatient expenses and above poverty line families too. RSBY relies exclusively on a centralised digital artefact to function, made visible by the ‘RSBY Smart Card’, a chip enabled plastic card containing personal data of individual and their family counting and conditioning the granting of health services to them; thus, no smart card means no health coverage. Till date 120 million Indians have been registered in the RSBY database. This article analyses how health accessibility is crafted under the RSBY scheme by questioning two central dimensions of this data-driven digital health scheme: the smart card technology and the public–private partnership, whereas RSBY scheme promises health coverage for all, its digital infrastructures may complicate access to health services, and reveal new patterns of exclusion of individuals. Thus, we will detail how smartcards technologies and private providers condition access to health care in India.
Using an ethics of care lens to understand the place of community health workers in Rwanda’s maternal healthcare system
Germaine Tuyisenge, Valorie A. Crooks, Nicole S. Berry
This study explores the informal care roles involved in the delivery of maternal health services by Rwanda’s elected maternal community health workers. We conducted semi-structured interviews with 20 such workers in five Rwandan districts to explore their understandings of why they were elected for this voluntary position; what motivates them to fulfill their responsibilities; and their experiences of providing maternal health services in a resource-limited context. Thematically exploring the findings using an ethics of care lens, we highlight how responsibility, vulnerability and mutuality inform the place of these workers’ roles in the maternal care system and their villages. We conclude by acknowledging the significant responsibilities assigned by these works and that the burden that may result from taking on such care may negatively affect the sustainability of this initiative.
Waiting for care: Chronic illness and health system uncertainties in the United States
Amanda A. Lee, Aimee S. James, Jean M. Hunleth
Structures of power and inequality shape day-to-day life for individuals who are poor, imposing waiting in multiple forms and for a variety of services, including for healthcare (Andaya, 2018a; Auyero, 2012; Strathmann and Hay, 2009). Constraints, such as the age requirements for Medicare, losing employer-provided health insurance, or the bureaucracy involved in filing for disability often require people to wait to follow recommendations for medical treatments. In 2016–2017, we conducted 52 narrative interviews in St. Louis, a city with significant racial and economic health inequities and without Medicaid expansion. We interviewed people with one or more chronic illnesses for which they were prescribed medication and who identified as having difficulties affording their prescriptions. Throughout the interviews, participants frequently recounted 1) experiences of waiting for care, along with other services, and 2) the range of strategies they utilized to manage the waiting. In this article, we develop the concept of active waiting to describe both the lived experiences of waiting for care and the responses that people devise to navigate, shorten, or otherwise endure waiting. Waiting is structured into healthcare and other social services at various scales in ways that reinforce feelings of marginalization, and also that require work on the part of those who wait. While much medical and public health research focuses on issues of diagnostic or treatment delay, we conclude that this conceptualization of active waiting provides a far more productive frame for accurately understanding the emotional and physical experiences of individuals who are disproportionately poor and made to wait for their care. Only with such understanding can we hope to build more just and compassionate social systems.
This article explores general practitioners’ (GPs) persuasive efforts in cases where biomedical evidence is absent but expected. Health insurance in Western countries is based on the biomedical ideal that legitimate complaints should have objective causes detectable by medical examination. For GPs responsible for assessing sickness and incapacity for work, the demand for objective evidence can be problematic: what if they as experts deem that a patient is in fact sick and eligible for benefits, but are unable to provide objective evidence to that fact? How can they convince bureaucrats in the insurance system to accept their judgment? Taking ‘medically unexplained symptoms’ as my case, I draw on focus group and follow-up interviews with GPs in Norway to explore how GPs attempt to persuade bureaucrats to accept their professional judgment. Proposing the concept of ‘rhetorical work’, I reconstruct a typology of such work that doctors engage in to influence bureaucratic decision-making and provide long-term health benefits for patients. I then discuss the potential societal implications of GPs’ rhetorical practices and the applications of the concept of rhetorical work in future research.
The experiences of cancer patients within the material hospital environment: Three ways that materiality is affective
Gareth Wiltshire, Emma Pullen, Frankie F. Brown, Mike Osborn, Sarah Wexler, Mark Beresford, Mark Tooley, James E. Turner
Improving the patient experience is widely recognised as an important goal in the delivery of high-quality healthcare. This study contributes to this goal with a particular focus on the role of the material hospital environment for patients being treated for cancer. Extending the burgeoning literature utilising materialist theoretical approaches in social science and medicine, we report on qualitative data with 18 participants who had received cancer treatment from one UK hospital. Our analysis offers a typology of ways in which the material hospital environment is affective: through patients’ direct intra-actions with nonhuman materiality; through providing shared spaces within which human-human assemblages are actualised; and through being the material component of the practices of treatment. Within each process in this typology, the analysis highlights how the affective feeling states which play a critical role in patient wellbeing are in many ways contingent, fluid and context-sensitive. Amidst ambitions to improve the patient experience, these findings underline the significance of materialities of care and offer a broad explanatory typology with analytic and practical potential for healthcare staff, patient groups, architects and designers.
This article analyzes the medicalization of male circumcision in Turkey. In the 1960s, the Turkish state launched its largest network of healthcare services in its history. As part of the network, health officers began to perform circumcisions and introduced medical expertise into male circumcision. They advertised new surgical techniques via mass media and aimed to persuade families of their benefits and replace itinerant circumcisers stigmatized in the new modern, national imaginary. To do so, this article argues, health officers turned themselves into “fenni sünnetçi (scientific circumciser).” By operationalizing the concept of ambivalence, this article investigates how “fenni sünnetçi” came to epitomize a hybrid identity that enabled health officers to differentiate themselves from itinerant circumcisers and maintain their professional status while resonating with families accustomed to the services of itinerant circumcisers. The article enriches our understanding of medicalization by paying attention to the changing subjectivities of medical professionals who initiate the medicalization process.
This article sets out a political economic framework to understand South Africa’s dramatic upsurge in heroin use in the 2000s. Drawing on interviews with users and their families, it shows how the opioid gained influence among men in their twenties living in apartheid-engineered townships marked by chronic unemployment. Giving particular attention to histories of work, it documents the ways that men hustle to generate an income to buy heroin, showing their relationship to families who support them and community members who may employ them. The article challenges the view that heroin users’ income comes primarily from criminal activities, an assumption that feeds into punitive approaches to drugs. Instead, it insists that heroin hustlers must be seen as part of a large group of “laboring poor” who undertake low-paid work that does not enable desirable futures. As such, the article develops a framework that can contribute to understanding the political economy of heroin use in high-unemployment regions of the Global South.