Many health care systems include programs that allow patients in exceptional circumstances to access medical interventions of as yet unproven benefit. In this article we consider the ethical justifications for—and demands on—these special access programs (SAPs). SAPs have a compassionate basis: They give patients with limited options the opportunity to try interventions that are not yet approved by standard regulatory processes. But while they signal that health care systems can and will respond to individual suffering, SAPs have several disadvantages, including (...) the potential to undermine regulatory and knowledge-generation structures that constitute significant public goods. The “balance” between these considerations depends in part on how broadly SAPs are used, but also on whether SAPs can be made to contribute to the generation of knowledge about the effects of health interventions. We argue that patients should usually be required to contribute outcome data while using SAPs. (shrink)

This article reports the findings of a qualitative study that explored the organizational influences on moral distress for health professionals working in pediatric intensive care units across Canada. Participants were recruited to the study from PICUs across Canada. The PICU is a high-tech, fast-paced, high-pressure environment where caregivers frequently face conflict and ethical tension in the care of critically ill children. A number of themes including relationships with management, organizational structure and processes, workload and resources, and team dynamics were identified. (...) This study provides a rare and important multi-disciplinary perspective on this topic and the findings have implications for administrators and leaders who seek to improve the moral climate of healthcare delivery. (shrink)

Recently, concerns have been raised about the phenomenon of ‘overdiagnosis’, the diagnosis of a condition that is not causing harm, and will not come to cause harm. Along with practical, ethical, and scientific questions, overdiagnosis raises questions about our concept of disease. In this paper, we analyse overdiagnosis as an epistemic problem and show how it challenges many existing accounts of disease. In particular, it raises ques- tions about conceptual links drawn between disease and dysfunction, harm, and risk. We argue (...) that ‘disease’ should be considered a vague concept with a non-classical structure. On this view, overdiagnosed cases are ‘borderline’ cases of disease, falling in the zone between cases that are clearly disease, and cases that are clearly not disease. We then develop a pre ́cising definition of disease designed to provide practical help in preventing and limiting overdiagnosis. We argue that for this purpose, we can define disease as dysfunction that has a significant risk of causing severe harm to the patient. (shrink)

An increasing number of patients receive diagnoses of disease without having any symptoms. These include diseases detected through screening programs, as incidental findings from unrelated investigations, or via routine checks of various biological variables like blood pressure or cholesterol. In this article, we draw on narrative identity theory to examine how the process of making sense of being diagnosed with asymptomatic disease can trigger certain overlooked forms of harm for patients. We show that the experience of asymptomatic disease can involve (...) ‘mismatches’ between one’s beliefs about one’s health status on the one hand, and bodily sensations or past experience on the other. Patients’ attempts to integrate these diagnoses into their self-narratives often involve either forming inaccurate beliefs about bodily sensations and/or past experience, or coming to believe that feelings and experience do not necessarily track or predict health status, leading to an ongoing sense of vulnerability to ill health. These resulting alterations in self-understanding can sometimes be considered harmful, in view of their implications for ascriptions of responsibility and ongoing anxiety. (shrink)

Although health and disease occupy opposite ends of a spectrum, distinguishing between them can be difficult. This is the “line-drawing” problem. The papers in this special issue engage with this challenge of delineating the boundaries of disease. The authors explore different views as to where the boundary between disease and nondisease lies, and related questions, such as how we can identify, or decide, what counts as a disease and what does not; the nature of the boundary between the two categories; (...) and what sorts of considerations could justify the location of that boundary. In exploring these questions, the papers draw on detailed clinical examples, provide theoretical critiques of existing approaches to disease definition, and offer new ways to conceptualize key features in debates about disease, including harm and biological dysfunction. (shrink)

Catharine Macaulay's first political pamphlet, “Loose remarks on certain positions to be found in Mr. Hobbes's philosophical rudiments of government and society with a short sketch for a democratical form of government in a letter to Signor Paoli,” published in London in 1769, has received no significant scholarly attention in over two hundred years. It is of primary interest because of the light it sheds on Macaulay's critique of patriarchal politics, which helps to establish a new line of thinking about (...) the historian as an early feminist writer. It appears she was working from an unauthorized edition of the Thomas Hobbes'sDe Cive entitledPhilosophicall Rudiments of Government and Society, printed by a royalist bookseller in London 1651. Some errors in this translation may explain Macaulay's skewed understanding of Hobbess argument in support of the premises of monarchy. Her intriguing analysis of paternal authority in “Loose Remarks” anticipates recent feminist explorations of Hobbesian political thought. (shrink)

Positive claims about narrative approaches to healthcare suggest they could have many benefits, including supporting person-centred healthcare (PCH). Narrative approaches have also been criticised, however, on both theoretical and practical grounds. In this paper we draw on epistemological work on narrative and knowledge to develop a conception of narrative that responds to these concerns. We make a case for understanding narratives as accounts of events in which the way each event is described as influenced by the ways other events in (...) the narrative are described. This view of narratives recognises that they can contribute knowledge of different kinds of connections between events: not just causal, and not just of patient’s perspectives. Additionally, narratives can add further epistemic value by suggesting potentially useful lines of inquiry. We take narrative approaches to healthcare to include clinicians considering both patients’ informational offerings and their own professional understandings as narratives. On this understanding, our account is able to overcome the major theoretical and practical criticisms that have been levelled against the use of narrative approaches in healthcare, and can help to explain why and how narrative approaches are consistent with PCH. (shrink)

Surgery is an important part of contemporary health care, but currently much of surgery lacks a strong evidence base. Uptake of evidence-based medicine (EBM) methods within surgical research and among practitioners has been slow compared with other areas of medicine. Although this is often viewed as arising from practical and cultural barriers, it also reflects a lack of epistemic fit between EBM research methods and surgical practice. In this paper we discuss some epistemic challenges in surgery relating to this lack (...) of fit, and investigate how resources from feminist epistemology can help to characterize them. We point to ways in which these epistemic challenges may be addressed by gathering and disseminating evidence about what works in surgery using methods that are contextual, pluralistic, and sensitive to hierarchies. (shrink)

The second of five commentaries on “Bloomberg's Health Legacy: Urban Innovator or Meddling Nanny?” from the September‐October 2013.

Evidence in medicine can come from more or less trustworthy sources and be produced by more or less reliable methods, and its interpretation can be disputed. As such, it can be unclear when disagreements in medicine result from different, but reasonable, interpretations of the available evidence and when they result from unreasonable refusals to consider legitimate evidence. In this article, we seek to show how assessments of the relevance and implications of evidence are typically affected by factors beyond that evidence (...) itself, such as our beliefs about the credibility of the speaker or source of the evidence. In evaluating evidence, there is thus a need for reflective awareness about why we accept or dismiss particular claims. (shrink)

I offer here an analysis of contemporary foundation garments while exploring the ways in which these garments encourage, reinforce and protect normative femininity. In examining the performatives of contemporary normative, ideal femininity as they perpetuate inhibited intentionality, ambiguous transcendence, and discontinuous unity, I look to the possibility for subversive performativity vis-à-vis the strengths of women in order to proliferate categories of gender and to potentially displace current notions of what it means to become woman.

A Citizen Public Debt Audit is an emancipatory praxis that can mobilize citizens to make legible public debt that has been accrued in their name. Ideally, it should hold creditors accountable for debt that is determined to be odious. This study examines the public debt crisis in Puerto Rico to illustrate the historically unjust circumstances under which public debt was accumulated on the island in the context of US federal taxation and economic policies. It explains how citizens are mobilizing via (...) a CPDA to make these circumstances legible and argues that citizens should not be obliged to service debt that was accrued contrary to their own welfare, especially if conditions of repayment threaten their current and future well-being. (shrink)

I argue for a Wittgensteinian reading of Judith Butler's performative conception of identity in light of Marilyn Frye's analysis of lesbian as nonexistent and Butler's analysis of abject. I suggest that the attempt to articulate a performative lesbian identity must take seriously the contexts within which abjection is vital to maintaining gender, exposing the intimate link between context and the formulation of intention, and shedding light on possible lesbian identities irreducible to abjection.

Much recent feminist theory tacitly subscribes to some version of what cognitive and evolutionary scientists are successfully undermining as untenably Cartesian, namely, the view that moral agency is achieved through the transcendence of physical causality guaranteed by self-consciousness. Appealing to Wittgenstein's insights concerning self-reference, I argue that abandoning Cartesian dualism implies abandoning neither subject nor moral agency but rather opens up nonandrocentric possibilities unavailable to the traditional model of mind.

Reply to a commentary by Felicitas Holzer and Ignacio Mastroleoon “Models of Consent to Return of Incidental Findings in Genomic Research.”.

Lloyd (2009) contends that climate models are confirmed by various instances of fit between their output and observational data. The present paper argues that what these instances of fit might confirm are not climate models themselves, but rather hypotheses about the adequacy of climate models for particular purposes. This required shift in thinking—from confirming climate models to confirming their adequacy-for-purpose—may sound trivial, but it is shown to complicate the evaluation of climate models considerably, both in principle and in practice.

Informed choice is increasingly recognised as important in supporting patient autonomy and ensuring that people are neither deceived nor coerced. In cancer screening the emphasis has shifted away from just promoting the benefits of screening to providing comprehensive information to enable people to make an informed choice. Cancer screening programmes in the UK now have policies in place which state that it is their responsibility to ensure that individuals are making an individual informed choice. There is a need to evaluate (...) whether such policies mean that those people invited for screening are making informed choices, and how comprehensive information affects other variables such as uptake, cost effectiveness, and satisfaction. At the present time, there is no validated measure of informed choice in cancer screening. Such a measure could be used to evaluate the effectiveness of interventions to increase informed choice and levels of informed choice in a population invited for screening. It could encourage health professionals to be accountable. Factors important when measuring informed choice in cancer screening include an individual’s understanding of the limitations of screening, the ability to make an autonomous choice, and the difference between choice and behaviour. (shrink)

Human attitudes about killing nonhuman animals are complex, ambivalent, and contradictory. This study attempts to elucidate those attitudes through a linguistic analysis of the terms used to refer to the killing of animals. Whereas terms used for killing human beings are highly specific and differentiated on the basis of the motivation for the killing, the nature of the participants, and evaluative and emotional content, terms used for killing animals are vague and interchangeable. Terms for animal-killing often background aspects of the (...) act, making it more palatable to humans. When a term is extended from use with humans to use with animals, it lends a connotation of compassion and mercy to the killing. When a term is extended from use with animals to use with humans, it gives the killing a connotation of brutality. These findings reflect assumptions about the human "right" to take animals' lives while serving to ameliorate the negative feelings such killings evoke. (shrink)

This article summarizes the April 5–6, 2002 conference on Conflict of Interest and Its Significance in Science and Medicine. Several themes are identified and addressed, including the globalization of science, the widespread presence of conflicts, the increased interest and involvement in conflict of interest by a number of organizations, the difference between academic research and research conducted by industry, and the tension between science and medicine. At the heart of the matter lies objectivity in research and the need for transparency (...) to ensure objectivity. Several future activities were discussed, including the need to share specific examples of how conflict has been managed, and the need for behavioral research to provide a sound empirical understanding of the best ways to provide informed consent for research subjects. (shrink)

The aim of this article is to analyze the moral dimensions of teachers’ experiences of working with unaccompanied refugee students in language introduction in Swedish upper secondary school. Theoretically, the analysis uses Bauman’s postmodern ethics, focusing on the tension between the social and the moral space in teachers’ encounters with unaccompanied students. The empirical material is derived from interviews with three teachers, and a reflexive interview approach was used. The outcome of the analysis shows that balancing professional and moral responsibilities (...) is a challenge, and also that while teachers strive to see their students as Other in a moral sense, the demands of the profession might get in the way. This aporia of proximity – the insoluble conflict between the social and the moral space – is faced by the teacher as a moral subject, adding complex moral dimensions to teachers’ work with unaccompanied students. (shrink)

Wendy Brown's work commands widespread attention and respect, and there has been considerable interest as to how it would develop after "States of Injury." This book will not disappoint.

To study Earth’s climate, scientists now use a variety of computer simulation models. These models disagree in some of their assumptions about the climate system, yet they are used together as complementary resources for investigating future climatic change. This paper examines and defends this use of incompatible models. I argue that climate model pluralism results both from uncertainty concerning how to best represent the climate system and from difficulties faced in evaluating the relative merits of complex models. I describe how (...) incompatible climate models are used together in ‘multi-model ensembles’ and explain why this practice is reasonable, given scientists’ inability to identify a ‘best’ model for predicting future climate. Finally, I characterize climate model pluralism as involving both an ontic competitive pluralism and a pragmatic integrative pluralism. (shrink)

In 1946, after an eight-year debate with the New Critics, Charles Morris doggedly maintained that "an education which gave due place to semiotic would destroy at its foundations the cleavage and opposition of science and the humanities."1 This insistence on the unity of disciplines—the hallmark of the logical empiricist movement and its brainchild, The International Encyclopedia of Unified Science —effectively silenced semiotics as a force in American literary studies. For the New Critics' point of departure—and one of the few tenets (...) that they held in common—was the belief that art creates a mode of knowledge different in kind from that of practical or scientific discourse and that a criticism modeled on the latter would miss the essence of its subject matter. The quarrel, which continued unresolved during the polemics of the war years, now fuels the controversy between structuralism and post-structuralism. It lies at the very heart of the question of the relevance of semiotics to the humanities. · 1. Charles Morris, Signs, Language, and Behavior, in Writings on the General Theory of Signs , p. 327. Wendy Steiner, assistant professor of English at the University of Pennsylvania, is the author of Exact Resemblance to Exact Resemblance: The Literary Portraiture of Gertrude Stein. She has written a book on the relations between modern painting and literature and edited the proceedings of the 1978 Ann Arbor Conference on the Semiotics of Art. (shrink)

According to an adequacy-for-purpose view, models should be assessed with respect to their adequacy or fitness for particular purposes. Such a view has been advocated by scientists and philosophers...

Whether in characterizing Catharine MacKinnon's theory of gender as itself pornographic or in identifying liberalism as unable to make good on its promises, Wendy Brown pursues a central question: how does a sense of woundedness become the basis for a sense of identity? Brown argues that efforts to outlaw hate speech and pornography powerfully legitimize the state: such apparently well-intentioned attempts harm victims further by portraying them as so helpless as to be in continuing need of governmental protection. "Whether (...) one is dealing with the state, the Mafia, parents, pimps, police, or husbands," writes Brown, "the heavy price of institutionalized protection is always a measure of dependence and agreement to abide by the protector's rules." True democracy, she insists, requires sharing power, not regulation by it; freedom, not protection.Refusing any facile identification with one political position or another, Brown applies her argument to a panoply of topics, from the basis of litigiousness in political life to the appearance on the academic Left of themes of revenge and a thwarted will to power. These and other provocations in contemporary political thought and political life provide an occasion for rethinking the value of several of the last two centuries' most compelling theoretical critiques of modern political life, including the positions of Nietzsche, Marx, Weber, and Foucault. (shrink)

Low-income women and, disproportionately low-income women of color seeking reproductive and pregnancy care are increasingly subject to what this article terms carceral care – care compromised by its’ proximity to punishment systems. This article identifies the legal and health care practice mechanisms leading to carceral care and proposes solutions designed to stop criminalization at the bedside.