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)

In this paper, we examine recent critiques of the debate about defining disease, which claim that its use of conceptual analysis embeds the problematic assumption that the concept is classically structured. These critiques suggest, instead, developing plural stipulative definitions. Although we substantially agree with these critiques, we resist their implication that no general definition of “disease” is possible. We offer an alternative, inductive argument that disease cannot be classically defined and that the best explanation for this is that the concept (...) is structured as a cluster. We further argue that we do not need to reject the possibility of defining the general concept “disease” to legitimate developing stipulative definitions of disease that are relative to particular purposes. A cluster definition of disease is compatible with contextually motivated definitions, which may be considered précisifications of the more general cluster concept. (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)

Background: Limited knowledge of the experiences of conflicts of conscience found in nursing literature. Objectives: To explore the individual experiences of a conflict of conscience for neonatal nurses in Alberta. Research design: Interpretive description was selected to help situate the findings in a meaningful clinical context. Participants and research context: Five interviews with neonatal nurses working in Neonatal Intensive Care Units throughout Alberta. Ethical consideration: Ethics approval from the Health Research Ethics Board at the University of Alberta. Findings: Three common (...) themes emerged from the interviews: the unforgettable conflict with pain and suffering, finding the nurse’s voice, and the unique proximity of nurses. Discussion and conclusion: The nurses described a conflict of conscience when the neonate in their care experienced undermanaged pain and unnecessary suffering. During these experiences, they felt guilty, sad, hopeless, and powerless when they were unable to follow their conscience. Informal ways to follow their conscience were employed before declaration of conscientious objection was considered. This study highlights the vital importance of respecting a conflict of conscience to maintain the moral integrity of neonatal nurses and exposes the complexities of conscientious objection. (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)

Peer review of manuscripts has recently become a subject of academic research and ethical debate. Critics of the review process argue that it is a means by which powerful members of the scientific community maintain their power, and achieve their personal and communal aspirations, often at others' expense. This qualitative study aimed to generate a rich, empirically‐grounded understanding of the process of manuscript review, with a view to informing strategies to improve the review process. Open‐ended interviews were carried out with (...) 35 journal editors and peer reviewers in the United Kingdom, the USA and Australia. It is clear from this research that relations of power and epistemic authority in manuscript review are complex and dynamic, and may have positive and negative features, and that even where power is experienced as controlling, restrictive and illegitimate, it can also be resisted. In conclusion, the manuscript review process is best thought of not in terms of simple dominance of reviewers and editors over authors, but rather as a shifting “net” of power relations. These complex power relations need to be understood if reviewers are to be encouraged to participate in the process and to do so in the the most ethical and effective manner. (shrink)

Ethical sourcing and socially responsible purchasing is increasingly on the business agenda, but developing and implementing policy and practice across a global network of suppliers is challenging. The purpose of this paper is to expand theory on the nature of linkages between firms in a social network, specifically postulating how ties between organizations can be configured to facilitate development, diffusion, and adoption of sustainability initiatives. The theory development provides a lens with which to view the influence of a firm’s structural (...) embeddedness in its organizational social network on developing, diffusing and adopting sustainability initiatives. The focus is on brokers who in various structural alignments help bridge the focal firm’s sustainability initiatives with distant or disconnected stakeholders the focal firm is trying to reach. The brokers help the focal firm engage these stakeholders by sharing knowledge and information regarding sustainability initiatives and by incorporating localized needs into the development of the initiatives to facilitate better diffusion and adoption. The theoretical contribution of this manuscript is a novel perspective on sustainability in organizational networks. This perspective allows for greater explanatory power regarding how organizations can achieve sustainable outcomes that meet a broad base of stakeholder needs and better facilitate sustainability initiatives across a diverse and expansive network. (shrink)

Forms of Artificial Intelligence (AI) are already being deployed into clinical settings and research into its future healthcare uses is accelerating. Despite this trajectory, more research is needed regarding the impacts on patients of increasing AI decision making. In particular, the impersonal nature of AI means that its deployment in highly sensitive contexts-of-use, such as in healthcare, raises issues associated with patients’ perceptions of (un) dignified treatment. We explore this issue through an experimental vignette study comparing individuals’ perceptions of being (...) treated in a dignified and respectful way in various healthcare decision contexts. Participants were subject to a 2 (human or AI decision maker) x 2 (positive or negative decision outcome) x 2 (diagnostic or resource allocation healthcare scenario) factorial design. We found evidence of a “human bias” (i.e., a preference for human over AI decision makers) and an “outcome bias” (i.e., a preference for positive over negative outcomes). However, we found that for perceptions of respectful and dignified interpersonal treatment, it matters more who makes the decisions in diagnostic cases and it matters more what the outcomes are for resource allocation cases. We also found that humans were consistently viewed as appropriate decision makers and AI was viewed as dehumanizing, and that participants perceived they were treated better when subject to diagnostic as opposed to resource allocation decisions. Thematic coding of open-ended text responses supported these results. We also outline the theoretical and practical implications of these findings. (shrink)

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)

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)

Children's rights, lone motherhood and the breakdown of families are all issues at the forefront of current social debate in the West, with little agreement on what constitutes good parenting, or how the needs of both mother and child are best met. The feminist contribution to this debate is particularly important in keeping in view the diverse identities of all those who provide mothering. The psychoanalytic contribution is often undervalued and misunderstood. _Mothering and Ambivalence_ brings together authors from therapeutic, academic (...) and social work backgrounds to discuss dependency, anxiety and gender relations within families. Drawing on extensive professional experience the contributors combine a psychoanalytic and feminist approach to mothering which transcends the polarized and simplistic political debate about women's and children's needs. They also show how such an approach can inform and improve professional practice. (shrink)

While earlier research considered Simone de Beauvoir in the perspectives of Existentialism or Feminism, this work is the first to emphasize her reflective and descriptive approach and the full range of issues she addresses. There are valuable chapters and sections that are historical and/or comparative, but most of the contents of this work critically examine Beauvoir's views on old age (whereon she is the first phenomenologist to work), biology, gender, ethics, ethnicity (where she is among the first), and politics (again (...) among the first). Besides their systematic as well as historical significance, these chapters show her philosophy as on a par with those of Merleau-Ponty and Jean-Paul Sartre in quality, richness and distinctiveness of problematics, and the penetration of her insight into collective as well as individual human life within the socio-historical world. (shrink)

Each of us has written about the importance of reframing the debate over public health paternalism. Our individual explorations of the many and varied paths forward from libertarian “nanny state” objections to the “new public health” have been intimately informed by collaboration. This article represents a summary of our current thinking — reflecting the ground gained through many fruitful exchanges and charting future collaborative efforts.Our starting point is that law is a vitally important determinant of population health, and the interplay (...) among law, social norms, cultural beliefs, health behaviors, and healthy living conditions is complex. Anti-paternalists’ efforts to limit the scope of public health law to controlling only the proximal determinants of infectious diseases are utterly unjustifiable in the face of so much preventable death, disability, and disparity. Equally important, the anti-paternalism push is deeply counter-majoritarian and undemocratic, threatening to disable communities from undertaking measures to improve their own well-being. (shrink)

From the mid nineteenth to mid twentieth century sanatoria loomed large in the popular consciousness as the space for the treatment of tuberculosis (TB). A review of the historiography of sanatoria at the beginning of this paper shows that the nursing contribution to the care of TB patients is at best ignored and at worst attracts negative comment. Added to this TB nursing was not viewed as prestigious by contemporaries, leading to problems attracting recruits. Using a case study approach based (...) on surviving archival material, this paper sets out to provide a glimpse of the work of TB nurses in a rural sanatorium at Westwood, Queensland, Australia. For the nurses geographical isolation was compounded by professional stagnation, which created a working environment influenced by friction and discord among the staff. It reveals how despite this, nurses coped with working in hostile conditions, to make the long stay of their patients, separated from their families and familiar life style more bearable. (shrink)

Understanding Computers and Cognition presents an important and controversial new approach to understanding what computers do and how their functioning is related to human language, thought, and action. While it is a book about computers, Understanding Computers and Cognition goes beyond the specific issues of what computers can or can't do. It is a broad-ranging discussion exploring the background of understanding in which the discourse about computers and technology takes place. Understanding Computers and Cognition is written for a wide audience, (...) not just those professionals involved in computer design or artificial intelligence. It represents an important contribution to the ongoing discussion about what it means to be a machine, and what it means to be human. Book jacket. (shrink)

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.

ABSTRACT:In a world filled with poverty, environmental degradation, and moral injustice, social enterprises offer a ray of hope. These organizations seek to achieve social missions through business ventures. Yet social missions and business ventures are associated with divergent goals, values, norms, and identities. Attending to them simultaneously creates tensions, competing demands, and ethical dilemmas. Effectively understanding social enterprises therefore depends on insight into the nature and management of these tensions. While existing research recognizes tensions between social missions and business ventures, (...) we lack any systematic analysis. Our paper addresses this issue. We first categorize the types of tensions that arise between social missions and business ventures, emphasizing their prevalence and variety. We then explore how four different organizational theories offer insight into these tensions, and we develop an agenda for future research. We end by arguing that a focus on social-business tensions not only expands insight into social enterprises, but also provides an opportunity for research on social enterprises to inform traditional organizational theories. Taken together, our analysis of tensions in social enterprises integrates and seeks to energize research on this expanding phenomenon. (shrink)

ABSTRACT:In a world filled with poverty, environmental degradation, and moral injustice, social enterprises offer a ray of hope. These organizations seek to achieve social missions through business ventures. Yet social missions and business ventures are associated with divergent goals, values, norms, and identities. Attending to them simultaneously creates tensions, competing demands, and ethical dilemmas. Effectively understanding social enterprises therefore depends on insight into the nature and management of these tensions. While existing research recognizes tensions between social missions and business ventures, (...) we lack any systematic analysis. Our paper addresses this issue. We first categorize the types of tensions that arise between social missions and business ventures, emphasizing their prevalence and variety. We then explore how four different organizational theories offer insight into these tensions, and we develop an agenda for future research. We end by arguing that a focus on social-business tensions not only expands insight into social enterprises, but also provides an opportunity for research on social enterprises to inform traditional organizational theories. Taken together, our analysis of tensions in social enterprises integrates and seeks to energize research on this expanding phenomenon. (shrink)

On the 24th June 2015, Feminist Legal Studies and the London School of Economics Law Department hosted an afternoon event with Professor Wendy Brown, Class of 1936 First Professor of Political Science, University of California. Professor Brown kindly agreed to discuss her scholarship on feminist theory, and its relationship to both the law and neoliberalism. The event included an interview by Dr Katie Cruz and a Q&A session, which are presented here in an edited version of the transcript. Sumi (...) Madhock, Professor of Gender Studies, LSE chaired the interview and discussion and introduced Professor Brown’s work. Katie Cruz asked Wendy Brown to reflect upon topics that span her scholarship and activism, including the state of critical, feminist, and Left approaches to rights, neoliberalism, despair and utopianism, and the future of feminist theory and practice in the context of neoliberalism and current debates about intersectionality. Participants in the discussion asked questions on a wide range of issues, including the limits of feminist engagement with law as a tool for social change, the dominance of neoliberalism, imperialist feminism, Islamophobia, secularism, and our attachment to the figure of homo politicus. (shrink)

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)