What are the social consequences of the recent expansion of newborn screening in the United States? The adoption of new screening technologies has generated diagnostic uncertainty about the nature of ...screening targets, making it unclear not only whether a newborn will develop a disease but also what the condition actually is. Based on observations in a genetics clinic and in-depth interviews with parents and geneticists, we examine how parents and clinical staff work out the social significance of uncertain newborn screening results. We find that some newborns will experience a specific trajectory of prolonged liminality between a state of normal health and pathology. Based on a review of related literatures, we suggest "patients-in-waiting" as an umbrella concept for those under medical surveillance between health and disease.
Sociologists have tended to frame medical gatekeeping as an exclusionary social practice, delineating how practitioners and clerical staff police the moral boundaries of medicine by keeping out ...patients who are categorised as ‘bad’, ‘deviant’, or otherwise problematic. Yet medical gatekeeping, understood more broadly, can include not only keeping patients out of particular clinical settings, but also redirecting them to alternative sources of care. In this article, I draw on qualitative analysis of audio‐recorded patient‐provider interactions in a United States emergency department (ED) to illustrate medical gatekeeping as a two‐step process of, first, categorising certain patient complaints as unsuitable for treatment within a particular setting, and second, diverting patients to alternative sites for care. I refer to these as the restrictive and facilitative components of medical gatekeeping to denote how each relates to patients’ access to care, recognising that both components of medical gatekeeping are part of a coordinated organisational strategy for managing resource scarcity. By illustrating how ED providers reveal intimate knowledge of structural vulnerabilities in diverting socioeconomically disadvantaged patients with chronic back pain to clinical sites that are better equipped to provide care, I suggest that we rethink the emphasis on restrictive practices in sociological accounts of medical gatekeeping.
On 19 July 2016, three medical organisations filed a federal lawsuit against representatives from several Vermont agencies over the Patient Choice and Control at End of Life Act. The law is similar ...to aid-in-dying (AID) laws in four other US states, but the lawsuit hinges on a distinctive aspect of Vermont's law pertaining to patients' rights to information. The lawsuit raises questions about whether, and under what circumstances, there is an ethical obligation to inform terminally ill patients about AID as an end-of-life option. Much of the literature on clinical communication about AID addresses how physicians should respond to patient requests for assisted dying, but neglects the question of how physicians should approach patients who may not know enough about AID to request it. In this article, I examine the possibility of an affirmative duty to inform terminally ill patients about AID in light of ethical concerns about professional responsibilities to patients and the maintenance of the patient–provider relationship. I suggest that we should not take for granted that communication about AID ought to be patient-initiated, and that there may be circumstances in which physicians have good reasons to introduce the topic themselves. By identifying ethical considerations that ought to inform such discussions, I aim to set an agenda for future bioethical research that adopts a broader perspective on clinical communication about AID.
ABSTRACT
Abortion laws offer a point of entry for “the state” to intervene in intimate clinical matters. In this article, I explore the various uses of scripts and scripting in state‐mandated ...abortion counseling following the implementation of North Carolina's (2011) Woman's “Right to Know” Act. The law mandates that women receive counseling with specific, state‐prescribed information at least 24 hours prior to an abortion. Drawing on interviews with abortion providers in North Carolina, I analyze how the meaning of scripting shifts across different clinical and bureaucratic contexts and show that abortion providers perceived themselves to be scripted by “the state” even though their words were not explicitly chosen by lawmakers. Thus, rather than viewing the law merely as a product of North Carolina legislative activity, I argue that abortion providers also help to create the law, and its social and moral power, by interpreting and enacting it. However, abortion providers also revealed creative strategies for “scripting dissent” from the law—that is, rejecting, challenging, or otherwise subverting the state's ideological message. This demonstrates that the linguistic force of the script stretches beyond its textual meaning to encompass the way it is performed within a particular context and how it is sometimes used for unexpected ends. abortion, reproduction, biopolitics, the state, law, medicine, United States
RESUMEN
Las leyes sobre el aborto ofrecen un punto de entrada para la intervención del “Estado” en temas clínicos de la intimidad. En este artículo exploro los varios usos de las guías y escritura de las mismas en el asesoramiento mandado por el Estado para los casos de aborto siguiendo la implementación de la Ley “del Derecho a Saber” de la Mujer (2011) en Carolina del Norte. La ley determina que las mujeres reciban asesoramiento con información especifica, prescrita por el Estado al menos 24 horas antes del aborto. Basada en entrevistas con los que practican abortos en Carolina del Norte, analizo cómo el significado de la escritura de las guías varía a través de los diferentes contextos clínicos y burocráticos y muestro que los que practican abortos se perciben así mismos como instruidos por “el Estado” aunque sus palabras no fueron explícitamente seleccionadas por los legisladores. Por consiguiente, en vez de mirar la ley meramente como un producto de la actividad legislativa de Carolina del Norte, argumento que los que practican abortos también ayudan a crear la ley, y su poder social y moral, al interpretarla y promulgarla. Sin embargo, los que practican abortos también revelaron estrategias creativas para el “disentimiento en la escritura de las guías” de la ley—esto es, rechazando, retando o de otra manera subvirtiendo el mensaje ideológico del Estado. Esto demuestra que la fuerza lingüística de las guías se extiende más allá de sus significados textuales para incluir la manera en que son representadas dentro un contexto particular y cómo son algunas veces usadas para fines imprevistos. aborto, reproducción, biopolítica, el Estado, ley, medicina, Estados Unidos
The social work of brain images has taken center stage in recent theorizing of the intersections between neuroscience and society. However, neuroimaging is only one of the discursive modes through ...which public representations of neurobiology travel. This article adopts an expanded view toward the social implications of neuroscientific thinking to examine how neural imaginaries are constructed in the absence of visual evidence. Drawing on ethnographic fieldwork conducted over 18 months (2008–2009) in a United States multidisciplinary pediatric pain clinic, I examine the pragmatic clinical work undertaken to represent ambiguous symptoms in neurobiological form. Focusing on one physician, I illustrate how, by rhetorically mapping the brain as a therapeutic tool, she engaged in a distinctive form of representation that I call neural imagining. In shifting my focus away from the purely material dimensions of brain images, I juxtapose the cultural work of brain scanning technologies with clinical neural imaginaries in which the teenage brain becomes a space of possibility, not to map things as they are, but rather, things as we hope they might be. These neural imaginaries rely upon a distinctive clinical epistemology that privileges the creative work of the imagination over visualization technologies in revealing the truths of the body. By creating a therapeutic space for adolescents to exercise their imaginative faculties and a discursive template for doing so, neural imagining relocates adolescents' agency with respect to epistemologies of bodily knowledge and the role of visualization practices therein. In doing so, it provides a more hopeful alternative to the dominant popular and scientific representations of the teenage brain that view it primarily through the lens of pathology.
•Social studies of neuroscience have focused on brain images.•“Neural imagining” represents brains through language rather than images.•Privileging the imagination opens new possibilities for knowledge of the body.•These possibilities affirm adolescent agency vis-à-vis neurobiology.•This, in turn, challenges dominant views of the teenage brain as pathological site.
The need for informed analyses of health policy is now greater than ever. The twelve essays in this volume show that public debates routinely bypass complex ethical, sociocultural, historical, and ...political questions about how we should address ideals of justice and equality in health care. Integrating perspectives from the humanities, social sciences, medicine, and public health, this volume illuminates the relationships between justice and health inequalities to enrich debates.Understanding Health Inequalities and Justiceexplores three questions: How do scholars approach relations between health inequalities and ideals of justice? When do justice considerations inform solutions to health inequalities, and how do specific health inequalities affect perceptions of injustice? And how can diverse scholarly approaches contribute to better health policy? From addressing patient agency in an inequitable health care environment to examining how scholars of social justice and health care amass evidence, this volume promotes a richer understanding of health and justice and how to achieve both.The contributors are Judith C. Barker, Paula Braveman, Paul Brodwin, Jami Suki Chang, Debra DeBruin, Leslie A. Dubbin, Sarah Horton, Carla C. Keirns, J. Paul Kelleher, Nicholas B. King, Eva Feder Kittay, Joan Liaschenko, Anne Drapkin Lyerly, Mary Faith Marshall, Carolyn Moxley Rouse, Jennifer Prah Ruger, and Janet K. Shim.
This essay considers how we are to understand the decision to end one’s life under medical aid-in-dying (MAID) statutes and the role of influencing others. Bioethical concerns about the potential for ...abuse in MAID have focused predominantly on the risk of coercion and other forms of undue influence. Most bioethical analyses of relational influences in MAID have been made by opponents of MAID, who argue that MAID is unethical, in part, because it cannot cleanly accommodate relational influences. In contrast, proponents of MAID have downplayed the role of relational influences because they may threaten the pillars of autonomy and voluntariness on which the ethics of MAID rest. Drawing on a case study collected as part of an ethnographic study of MAID in Vermont, we show how relations of care are central to MAID decision-making. Such relations may muddle motives for assisted death, exposing the limits of conventional bioethics thinking on MAID and relational influence. Here, we argue that ethical frameworks for MAID should account for the role of relational influences in decision-making, and acknowledge that relational influences may support, as well as undermine, a decision for MAID. We then outline an evaluative framework for determining whether relational influences are undue that identifies six key domains for consideration: mental competence, authenticity, relationship context, having an adequate range options, financial considerations and irremediability. We conclude by suggesting that social relationships may constitute an important source of value in end-of-life decision-making and not only a liability.
This essay looks closely at metaphors and other figures of speech that often feature in how Americans talk about dementia, becoming part of cultural narratives: shared stories that convey ideas and ...values, and also worries and fears. It uses approaches from literary studies to analyze how cultural narratives about dementia may surface in conversations with family members or health care professionals. This essay also draws on research on a notable social effect of legalizing medical aid in dying: patients may find it easier to bring up a range of concerns, regardless of whether they have any interest in hastening their own death. The essay proposes that health care professionals rethink an idea prominent within their own culture: that conversations about the end of a person's life are inherently difficult. This framing may make it hard for people facing dementia to bring up their concerns about what lies ahead. We suggest a different way to think about these conversations, using the metaphor of "opening the door" to represent inviting a patient to bring up issues of deepest concern.
AbstractThe ethical allocation of scarce medical resources has received significant attention, yet a key question remains unaddressed: how should scarce, divisible resources be allocated? We present ...a case from the COVID-19 pandemic in which scarce resources were divided among patients rather than allocated to some patients over others. We assess how widely accepted allocation principles could be applied to this case, and we show how these principles provide insufficient guidance. We then propose alternatives that may help guide decision-making in such cases, and we evaluate the possibility of treating patients equally by dividing resources equally. Resource scarcity is not limited to pandemic situations, and many healthcare resources are divisible. This question-how to allocate these divisible resources-deserves greater attention from bioethics.
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