Journal of Bioethical Inquiry, Volume 13, Issue 1 (March 2016)
Guest Editors: Paul H. Mason and Chris Degeling
Image: Dinh Thi Nhung interviews a TB patient in Vietnam, Woolcock Institute of Medical Research, University of Sydney (photograph by Paul H. Mason 2014).
Leigh E. Rich
Leigh E. Rich
Letters to the Editor
Jakub Zawiła-Niedźwiecki and Jacek Olender
Paul H. Mason and Chris Degeling
With attention to the experiences, agency, and rights of tuberculosis (TB) patients, this symposium on TB and ethics brings together a range of different voices from the social sciences and humanities. To develop fresh insights and new approaches to TB care and prevention, it is important to incorporate diverse perspectives from outside the strictly biomedical model. In the articles presented in this issue of the Journal of Bioethical Inquiry, clinical experience is married with historical and cultural context, ethical concerns are brought to bear on global health, and structural analyses shed light upon the lived experience of people living with TB. The relational and reciprocal dimensions of care feature strongly in these discussions, which serve as a poignant reminder that behind each of the yearly deaths from TB is a deeply personal story. No single discipline holds a monopoly on how to care for each of these people, but strong cases are made for support from mental health and social workers in addressing the kaleidoscope of needs in TB prevention. As the World Health Organization moves towards the goal of eliminating TB globally by 2050, attending to the needs of TB patients serves global interests to lower disease burden and to develop better integrated communities worldwide.
On TB Vaccines, Patients’ Demands, and Modern Printed Media in Times of Biomedical Uncertainties: Buenos Aires, 1920–1950
Reconstructing some of the experiences of people living with tuberculosis in Argentina in the first half of the twentieth century, as reflected not only in written and oral accounts but also in individual and collective actions, this article explores the ways in which patients came to grips with medical expertise in times of biomedical uncertainty. These negotiations, which inevitably included adaptations as well as confrontations, highlight a much less passive and submissive patient–physician relationship than is often assumed. Though patients were certainly subordinate to medical doctors’ knowledge and practices, that subordination, far from absolute, was limited and often overthrown. The article focuses on patients’ demands to gain access to a vaccine not approved by the medical establishment. By engaging with media organizations, the sick invoked their “right to health” in order to obtain access to experimental treatments when biomedicine was unable to deliver efficient therapies.
In this paper I utilize anthropological insights to illuminate how health professionals and patients navigate and negotiate what for them is social about tuberculosis in order to improve treatment outcomes and support patients as human beings. I draw on ethnographic research about the implementation of the DOTS (Directly Observed Therapy, Short Course) approach in Georgia’s National Tuberculosis Program in the wake of the Soviet healthcare system. Georgia is a particularly unique context for exploring these issues given the country’s rich history of medical professionalism and the insistence that the practice of medicine is a moral commitment to society. I argue for critical attention to the ways in which treatment recipients and providers navigate what, for them, is “social” about therapeutic practices and their significance for avoiding biological and social reductionism.
Seiji Yamada, Sheldon Riklon, and Gregory G. Maskarinec
Approximately one in two hundred persons in the Marshall Islands have active tuberculosis (TB). We examine the historical antecedents of this situation in order to assign ethical responsibility for the present situation. Examining the antecedents in terms of Galtung’s dialectic of personal versus structural violence, we can identify instances in the history of the Marshall Islands when individual subjects made decisions (personal violence) with large-scale ecologic, social, and health consequences. The roles of medical experimenters, military commanders, captains of the weapons industry in particular, and industrial capitalism in general (as the cause of global warming) are examined. In that, together with Lewontin, we also identify industrial capitalism as the cause of tuberculosis, we note that the distinction between personal versus structural violence is difficult to maintain. By identifying the cause of the tuberculosis in the Marshall Islands, we also identify what needs be done to treat and prevent it.
From Exceptional to Liminal Subjects: Reconciling Tensions in the Politics of Tuberculosis and Migration
Controlling the movement of potentially infectious bodies has been central to Australian immigration law. Nowhere is this more evident than in relation to tuberculosis (TB), which is named as a ground for refusal of a visa in the Australian context. In this paper, I critically examine the “will to knowledge” that this gives rise to. Drawing on a critical analysis of texts, including interviews with migrants diagnosed with TB and healthcare professionals engaged in their care (n=19), I argue that this focus on border policing, rather than resettlement and the broader social determinants of health that drive current rates of TB, paradoxically renders migrants diagnosed with TB as liminal subjects in the post-arrival phase. This raises ethical issues about who “matters,” as well dilemmas about what constitutes adequate care for the “Other,” both of which go to the heart of the political economy of migration.
Diego S. Silva, Angus Dawson, and Ross E.G. Upshur
This paper explores the notion of reciprocity in the context of active pulmonary and laryngeal tuberculosis (TB) treatment and related control policies and practices. We seek to do three things: First, we sketch the background to contemporary global TB care and suggest that poverty is a key feature when considering the treatment of TB patients. We use two examples from TB care to explore the role of reciprocity: isolation and the use of novel TB drugs. Second, we explore alternative means of justifying the use of reciprocity through appeal to different moral and political theoretical traditions (i.e., virtue ethics, deontology, and consequentialism). We suggest that each theory can be used to provide reasons to take reciprocity seriously as an independent moral concept, despite any other differences. Third, we explore general meanings and uses of the concept of reciprocity, with the primary intention of demonstrating that it cannot be simply reduced to other more frequently invoked moral concepts such as beneficence or justice. We argue that reciprocity can function as a mid-level principle in public health, and generally, captures a core social obligation arising once an individual or group is burdened as a result of acting for the benefit of others (even if they derive a benefit themselves). We conclude that while more needs to be explored in relation to the theoretical justification and application of reciprocity, sufficient arguments can be made for it to be taken more seriously as a key principle within public health ethics and bioethics more generally.
Why Governments That Fund Elective Abortion Are Obligated to Attempt a Reduction in the Elective Abortion Rate
If elective abortion is publicly funded, then the government is obligated to take active measures designed to reduce its prevalence. I present two arguments for that conclusion. The first argument is directed at those pro-choice thinkers who hold that while some or all elective abortions are morally wrong, they still ought to be legally permitted and publicly subsidized. The second argument is directed at pro-choice thinkers who hold that there is nothing morally wrong with elective abortion and that it should be both legally permitted and publicly subsidized. The second argument employs premises that generalize beyond the abortion debate and that may serve to shed light on broader questions concerning conscience and the requirements of political compromise in a democracy.
Laura Y. Cabrera and Bernice S. Elger
In recent years, discussion around memory modification interventions has gained attention. However, discussion around the use of memory interventions in the criminal justice system has been mostly absent. In this paper we start by highlighting the importance memory has for human well-being and personal identity, as well as its role within the criminal forensic setting; in particular, for claiming and accepting legal responsibility, for moral learning, and for retribution. We provide examples of memory interventions that are currently available for medical purposes, but that in the future could be used in the forensic setting to modify criminal offenders’ memories. In this section we contrast the cases of (1) dampening and (2) enhancing memories of criminal offenders. We then present from a pragmatic approach some pressing ethical issues associated with these types of memory interventions. The paper ends up highlighting how these pragmatic considerations can help establish ethically justified criteria regarding the possibility of interventions aimed at modifying criminal offenders’ memories.
L. Syd M. Johnson
Since its inception in 1968, the concept of whole-brain death has been contentious, and four decades on, controversy concerning the validity and coherence of whole-brain death continues unabated. Although whole-brain death is legally recognized and medically entrenched in the United States and elsewhere, there is reasonable disagreement among physicians, philosophers, and the public concerning whether brain death is really equivalent to death as it has been traditionally understood. A handful of states have acknowledged this plurality of viewpoints and enacted “conscience clauses” that require “reasonable accommodation” of religious and moral objections to the determination of death by neurological criteria. This paper argues for the universal adoption of “reasonable accommodation” policies using the New Jersey statute as a model, in light of both the ongoing controversy and the recent case of Jahi McMath, a child whose family raised religious objections to a declaration of brain death. Public policies that accommodate reasonable, divergent viewpoints concerning death provide a practical and compassionate way to resolve those conflicts that are the most urgent, painful, and difficult to reconcile.
Guidelines for Teaching Cross-Cultural Clinical Ethics: Critiquing Ideology and Confronting Power in the Service of a Principles-Based Pedagogy
This paper presents a pedagogical framework for teaching cross-cultural clinical ethics. The approach, offered at the intersection of anthropology and bioethics, is innovative in that it takes on the “social sciences versus bioethics” debate that has been ongoing in the United States for three decades. The argument is made that this debate is flawed on both sides and, moreover, that the application of cross-cultural thinking to clinical ethics requires using the tools of the social sciences (such as the critique of the universality of the Euro-American construct of “autonomy”) within (rather than in opposition to) a principles-based framework for clinical ethics. This paper introduces the curriculum and provides guidelines for how to teach cross-cultural clinical ethics. The learning points that are introduced emphasize culture in its relation to power and underscore the importance of viewing both biomedicine and bioethics as culturally constructed.
Where ethical or regulatory questions arise about an individual’s interests in accessing bioinformation about herself (such as findings from screening or health research), the value of this information has traditionally been construed in terms of its clinical utility. It is increasingly argued, however, that the “personal utility” of findings should also be taken into account. This article characterizes one particular aspect of personal utility: that derived from the role of personal bioinformation in identity construction. The suggestion that some kinds of information are relevant to identity is not in itself new. However, the account outlined here seeks to advance the debate by proposing a conception of the relationship between bioinformation and identity that does not depend on essentialist assumptions and applies beyond the narrow genetic contexts in which identity is customarily invoked. The proposal is that the identity-value of personal bioinformation may be understood in terms of its instrumental role in the construction of our narrative identities, specifically that its value lies in helping us to develop self-narratives that support us in navigating our embodied existences. I argue that this narrative conception provides useful insights that are pertinent to the ethical governance of personal bioinformation. It illuminates a wider range of ethical considerations in relation to information access; it accounts for variations in the utility of different kinds of information; and it highlights that the context in which information is conveyed can be as important as whether it is disclosed at all. These arguments are illustrated using an example drawn from psychiatric neuroimaging research.
This case study examines the ethical dimensions of isolation for patients diagnosed with tuberculosis (TB) in Australia. It seeks to explore the issues of resource allocation, liberty, and public safety for wider consideration and discussion.
Krista N. Watts
Dinh Thi Nhung
Marian Loveday, Nalini Singh, Iqbal Master, and Ben Marais
Jane Batt, Sarah Brode, and Elisabeth Rea
J.-G. Cho, A. L. Byrne, G. Radford, M. Keller, and C. C. Dobler
Paul H. Mason