In 2010, randomized controlled trials (RCTs) of two different biomedical strategies to prevent HIV infection had positive findings. However, despite ongoing very high levels of HIV infection in some countries and population groups, it has been made clear by regulatory authorities that the evidence remains insufficient to support either product being made available outside of research contexts in the developing world for at least two years. In addition, prevention trials in endemic areas will continue to test new interventions against placebo. (...) But the judgments of evidentiary standards are never value-neutral. Using the recent trials and their contexts as case studies, we examine the basis for these decisions, which will potentially delay access to scientific innovation to the people who are most urgently in need of it. (shrink)

Miles Little is an Australian surgeon, poet, and philosopher whose published work spans diverse topics in surgery, medicine, philosophy, and bioethics. In 1974 he co-authored a survey that included an analysis of interviews conducted with amputees. This was his first foray into qualitative research. Twenty years later he established a research centre at the University of Sydney that initiated a programme of qualitative research in cancer medicine. For twenty years after that, the centre acted as a hub for research that (...) applied qualitative methods from the social sciences to study the experiences of people who endure illness and onerous treatments and to reveal their evaluations of what medicine does to and for them. This essay explains why Little turned to qualitative research instead of pursuing two other research paradigms that were better established in the 1990s, namely, evidence-based medicine and quality-of-life research. It also notes a development in qualitative research methods that Little’s legacy helps to explain, one which can augment the symbolic power of socially marginalized individuals and groups. With reference to a current controversy in surgery, I argue that Little’s survey of amputees models a laudable response to criticism, and in this respect, it is still relevant today. (shrink)

Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of the presence or absence (...) of persistent or recurrent disease; a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call “liminality”. We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient’s life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments. (shrink)

We applaud and support the call by Mithani et al. for “a proactive form of bioethics that actively resists and denounces i...

High-dose chemotherapy and autologous stem cell transplantation is used to treat some advanced malignancies. It is a traumatic procedure, with a high complication rate and significant mortality. ASCT patients and their carers draw on many sources of information as they seek to understand the procedure and its consequences. Some seek information from beyond orthodox medicine. Alternative beliefs and practices may conflict with conventional understanding of the theory and practice of ASCT, and ‘contested understandings’ might interfere with patient adherence to the (...) strict and demanding protocols required for successful ASCT.The present study, conducted in Sydney, Australia, examines narrative-style interviews with 10 sequentially recruited ASCT patients and nine of their carers conducted at the time of transplant and three months later. Transcripts were read for instances of mention of alternative advice, and for instances of contested understanding of information relevant to the transplant.Patients and carer pairs expressed closely concordant views about alternative advice. Five pairs were consulting alternative practitioners. Contested understanding was expressed in four domains—understandings of the transplant itself and its underlying theory, of the relationship between the components of the ‘transplant’, of the nature and role of stem cells, and of beliefs about bodily function and life-style. Contested understandings of the transplant treatment were expressed as predominantly personal interpretations of orthodox informationPatients and carers seemed to recognise that alternative and conventional systems were discordant, yet they were able to separate the two, and adhere to each practice without prejudicing their medical treatment. A single case of late, post-transplant repudiation of Western medicine is discussed to emphasise some of the possible determinants of dissonance when it does occur. (shrink)

Various models have been used to “emplot” our collective experience of the COVID-19 pandemic, including the epidemiological curve, threshold models, and narrative. Drawing on a threshold model that was designed to frame resource-allocation decisions in clinical care, I offer an ethical justification for taking caring responsibilities into consideration in such decisions during pandemics. My basic argument is that we should prioritize the survival of patients with caring responsibilities for similar reasons we should prioritize the survival of healthcare professionals. More generally, (...) the pandemic reveals the fundamental importance of informal care and affords an opportunity to raise questions of justice relating to it. (shrink)

The JBI (Journal of Bioethical Inquiry) is currently re-organising the editorial positions so as to distribute responsibility over a larger team of specialist associate editors. This is necessary due to the increasing workload that comes with a rapidly growing journal, and also due to changes in bioethics itself. Bioethics is becoming more diverse in terms of the disciplines and perspectives it engages. Combined with the international distribution that is enabled by our new publisher, this will help the JBI become a (...) more international journal on all fronts. (PsycINFO Database Record (c) 2012 APA, all rights reserved). (shrink)

Psychedelic-assisted Psychotherapy combines the use of psychedelic compounds, such as psilocybin, with psychotherapy. PAP has shown some promise as a novel treatment for Major Depressive Disorder, and empirical research suggests that its efficacy turns on the altered states induced by psychedelic compounds. In this paper we draw on the literature of phenomenology to explain the therapeutic potential of psychedelic experiences. Svenaeus characterises mental illness as a form of suffering that entails three distinct but related experiences of alienation or “unhomelike being-in-the-world”: (...) illness suffering, which relates to embodiment; existential suffering, which relates to self-narratives, and political suffering, which relates to social relationships. Ratcliffe further characterises the experience of MDD in phenomenological terms as a loss of pre-intentional possibility that manifests as excessive noematic feeling in the experience of embodiment, restrictive narratives in the construction of self, and disconnectedness in experience of the social world. We contend that PAP ameliorates the suffering associated with MDD by inducing and consolidating a state of broadened pre-intentional possibility—one that entails sudden, profound and enduring changes in embodiment, self-narratives, and social experience. We argue further that this phenomenological account is consistent with a bio-psycho-social model of mental health and illness, and we frame it as an argument supporting the plausibility of recent claims about treatment success. This helps to justify ongoing future empirical research in this setting. (shrink)

Discourse communities are groups of people who share common ideologies, and common ways of speaking about things. They can be sharply or loosely defined. We are each members of multiple discourse communities. Discourse can colonize the members of discourse communities, taking over domains of thought by means of ideology. The development of new discourse communities can serve positive ends, but discourse communities create risks as well. In our own work on the narratives of people with interests in health care, for (...) example, we find that patients speak of their illness experiences as victims of circumstance; policy makers construct adverse experiences and challenges as opportunities to be taken; health care workers speak from a mixed perspective, seeing themselves as both victims and opportunists depending on context. To be trapped within the discourse of a particular community is to put at risk the ability to communicate across discourses. Membership of a discourse community can impair the habit of critique, and deny opportunities for heteroglossic discourse. Privileging critique as a mode of discourse perhaps might define the ethical community, suggesting that ethical community may be an antidote to the constraining effects of conventional discourse community. (shrink)

The principle of providing post-trial access for research participants to successful products of that research is widely accepted and has been enshrined in various declarations and guidelines. While recent ethical guidelines recognise that the responsibility to provide post-trial access extends to sponsors, regulators and government bodies as well as to researchers, it is the researchers who have the direct duty of care to participants. Researchers may thus need to act as advocates for trial participants, especially where government bodies, sponsors, and (...) regulatory bodies have complex interests vested in decisions about whether or not new interventions are made available, how, and to whom. This paper provides an empirical account of post-trial access in the context of HIV prevention research. It describes both access to the successful products of research and the provision antiretroviral drugs for trial participants who acquire HIV. First, we provide evidence that, in the current system, there is considerable variation in the duration and timeliness of access. We then argue that by analysing the difficulties faced by researchers to this point, and their efforts to meet this obligation, much can be learned about how to secure post-trial access in HIV biomedical preventions trials. While researchers alone have a limited obligation, their advocacy on behalf of trial participants may be necessary to call the other parties to account. (shrink)

Health care is provided in many contexts—not just hospitals, clinics, and community health settings. Different institutional settings may significantly influence the design and delivery of health care and the ethical obligations and practices of health care practitioners working within them. This is particularly true in institutions that are established to constrain freedom, ensure security and authority, and restrict movement and choice. We describe the results of a qualitative study of the experiences of doctors and nurses working within two women’s prisons (...) in the state of New South Wales (NSW), Australia. Their accounts make clear how the provision and ethics of health care may be compromised by the physical design of the prison, the institutional policies and practices restricting movement of prisoners and practitioners, the focus on maintaining control and security, and the very purpose of the prison and prison system itself. The results of this study make clear the impact that context has on professional practice and illustrate the importance of sociology and anthropology to bioethics and to the development of a more nuanced account of professional ethics. (shrink)

The success of assisted reproductive technologies (ARTs) worldwide has led to an accumulation of frozen embryos that are surplus to the reproductive needs of those for whom they were created. In these situations, couples must decide whether to discard them or donate them for scientific research or for use by other infertile couples. While legislation and regulation may limit the decisions that couples make, their decisions are often shaped by their religious beliefs. Unfortunately, health professionals, scientists and policy-makers are often (...) unaware of the way in which faith traditions view ART and decisions concerning the ‘fate’ of surplus embryos. In this paper scholars representing six major religious traditions provide a commentary on a hypothetical case concerning the donation or destruction of excess ART embryos. These commentaries provide a rich account of religious perspectives on the status of the human embryo and an insight into the relevance of faith to health and policy decisions, particularly in reproductive medicine, ART and embryo research. (shrink)

Does reading poetry make you a better clinician?Can euthanasia be understood in terms of the meaning of a life?What is the moral and existential significance of ...

Illness narratives from patients with colorectal cancer commonly record patterns of change in social relationships that follow the diagnosis and treatment of the condition. We believe that these changes are best explained as a process of facework, which reflects losses of face on the part of the patient, and which assists in the creation of new faces that convey new senses of identity. Facework is familiar in the work by E. Goffman (1955) and has been extensively reworked since his time. (...) There is considerable agreement that face is a pervasive and universal constituent of all social interaction, and that it expresses the subject's view of the way he or she would like to be considered by others in interactions. Ho's concept of multiple faces negotiated dynamically according to social context is particularly useful in understanding the purpose and techniques of facework (D. Y.-F. Ho, 1994). We propose a model of face that uses dignity as the face-expression of personal attributes and acquisitions, and honor as the face-expression of systemic capabilities and attainments. This model can be used to examine individual variations in response and adaptation to colon cancer and its treatment, and it provides a useful means of teaching health care workers about the experience of illness. (shrink)

Concerns are frequently raised about the extent to which formal consent procedures actually lead to “informed” consent. As part of a study of consent to high-risk medical procedures, we analyzed in-depth interviews with 16 health care professionals working in bone-marrow transplantation in Sydney, Australia. We find that these professionals recognize and act on their responsibility to inform and educate patients and that they expect patients to reciprocate these efforts by demonstrably engaging in the education process. This expectation is largely implicit, (...) however, and when it is not met, this can give rise to trouble that can have adverse consequences for patients, physicians, and relationships within the clinic. We revisit the concept of the sick role to formalize this new role expectation, and we argue that “informed” consent is a process that is usually incomplete, despite trappings and assumptions that help to create the illusion of completeness. (shrink)

On March, 24, 2020, 818 cases of COVID-19 had been reported in New South Wales, Australia, and new cases were increasing at an exponential rate. In anticipation of resource constraints arising in clinical settings as a result of the COVID-19 pandemic, a working party of ten ethicists was convened at the University of Sydney to draft an ethics framework to support resource allocation decisions. The framework guides decision-makers using a question-and-answer format, in language that avoids philosophical and medical technicality. The (...) working party met five times over the following week and then submitted a draft Framework for consideration by two groups of intensivists and one group of academic ethicists. It was also presented to a panel on a national current affairs programme. The Framework was then revised on the basis of feedback from these sources and made publicly available online on April 3, ten days after the initial meeting. The framework is published here in full to stimulate ongoing discussion about rapid development of user-friendly clinical ethics resources in ongoing and future pandemics. (shrink)

The mass media is a major source of health information for the public, and as such the quality and independence of health news reporting is an important concern. Concerns have been expressed that journalists reporting on health are increasingly dependent on their sources—including representatives of industries responsible for manufacturing health-related products—for story ideas and content. Many critics perceive an imbalance of power between journalists and industry sources, with industry being in a position of relative power, however the empirical evidence to (...) support this view is limited. The analysis presented here—which is part of a larger study of industry-journalist relationships—draws on in-depth, semi-structured interviews with representatives of health-related industries in Australia to inductively examine their perceptions of power relations between industry and journalists. Participants painted a picture in which journalists, rather than themselves, were in a position to control the nature, extent, and outcome of their interactions with industry sources. Our results resonate with the concept of “mediatisation” as it has been applied in the domain of political reporting. It appears that, from the perspective of industry representatives, the imposition of media logic on health-related industries may inappropriately influence the information that the public receives about health-related products. (shrink)

Health industries attempt to influence the public through the news media and through their relationships with expert academics and opinion leaders. This study reports journalists' perceptions of their professional roles and responsibilities regarding the relationships between industry and academia and research results. Journalists believe that responsibility for the scientific validity of their reports rests with academics and systems of peer review. However, this approach fails to account for the extent of industry-academy interactions and the flaws of peer review. Health journalists' (...) retention of a critical stance regarding industry-academia relationships will include advocacy for and adoption of mandatory reporting of these relationships. (shrink)

Umbilical cord blood banking is one of many biomedical innovations that confront pregnant women with new choices about what they should do to secure their own and their child’s best interests. Many mothers can now choose to donate their baby’s umbilical cord blood (UCB) to a public cord blood bank or pay to store it in a private cord blood bank. Donation to a public bank is widely regarded as an altruistic act of civic responsibility. Paying to store UCB may (...) be regarded as a “unique opportunity” to provide “insurance” for the child’s future. This paper reports findings from a survey of Australian women that investigated the decision to either donate or store UCB. We conclude that mothers are faced with competing discourses that force them to choose between being a “good mother” and fulfilling their role as a “good citizen.” We discuss this finding with reference to the concept of value pluralism. (shrink)

The phone-hacking scandal that led to the closure of the News of the World newspaper in Britain has prompted international debate about media practices and regulation. It is timely to broaden the discussion about journalistic ethics and conduct to include consideration of the impact of media practices upon the population's health. Many commercial organisations cultivate relationships with journalists and news organisations with the aim of influencing the content of health-related news and information communicated through the media. Given the significant influence (...) of the media on the health of individuals and populations, we should be alert to the potential impact of industry–journalist relationships on health care, health policy and public health. The approach taken by the medical profession to its interactions with the pharmaceutical industry provides a useful model for management of industry influence. (shrink)

I have been invited to reflect on “Discourse communities and the discourses of experience” a paper co-authored by Little, Jordens, and Sayers and discuss how their analysis of discourse communities has influenced the development of bioethics and consider its influence now and potential effects in the future. Their paper examines the way different discourse communities are shaped by different experiences and desires. The shared language and experiences can provide a sense of belonging and familiarity. These can be positive aspects (...) of a discourse community, but there are also risks restricting the voices and experiences that can be heard and recognized. In this essay I hope to weave together three threads: an analysis of Little, Jordens, and Sayer’s research on discourse communities; the narrative interview I conducted with Little about his own experiences in establishing a bioethics centre; and my own experience of the bioethical discourse community established by Little. (shrink)

Between-subject variability in cognitive performance has been related to inter-individual differences in functional brain networks. Targeting the dorsal attention network we questioned whether resting-state functional connectivity within the DAN can predict individual performance in spatial attention tasks and whether there is short-term adaptation of DAN-FC in response to task engagement. Twenty-seven participants first underwent resting-state fMRI, they subsequently performed different tasks of spatial attention [including visual search ] and immediately afterwards received another rs-fMRI. Intra- and inter-hemispheric FC between core hubs (...) of the DAN, bilateral intraparietal sulcus and frontal eye field, was analyzed and compared between PRE and POST. Furthermore, we investigated rs-fMRI-behavior correlations between the DAN-FC in PRE/POST and task performance parameters. The absolute DAN-FC did not change from PRE to POST. However, different significant rs-fMRI-behavior correlations were revealed for intra-/inter-hemispheric connections in the PRE and POST run. The stronger the FC between left FEF and IPS before task engagement, the better was the learning effect in VS. And the faster the VS, the stronger was the FC between right FEF and IPS after task engagement. To conclude, DAN-FC relates to the individual performance in spatial attention tasks supporting the view of functional brain networks as priors for cognitive ability. Despite a high inter- and intra-individual stability of DAN-FC, the change of FC-behavior correlations after task performance possibly indicates task-related adaptation of the DAN, underlining that behavioral experiences may shape intrinsic brain activity. However, spontaneous state fluctuations of the DAN-FC over time cannot be fully ruled out as an alternative explanation. (shrink)

This paper begins an analysis of the real line using an inconsistency-tolerant (paraconsistent) logic. We show that basic field and compactness properties hold, by way of novel proofs that make no use of consistency-reliant inferences; some techniques from constructive analysis are used instead. While no inconsistencies are found in the algebraic operations on the real number field, prospects for other non-trivializing contradictions are left open.

Apresentação Agradecemos à presença dos professores do mestrado em Comunicação da Faculdade de Comunicação Social da Universidade do Estado do Rio de Janeiro, aos alunos da graduação e da pós e aos quatro convidados pela gentileza de estarem no campus da Universidade para tratar de um assunto pouco estudado na área de comunicação. Nos currículos antigos, em especial aqueles na década de 1980, havia uma disciplina intitulada Sistemas Internacionais de Comunicação. Hoje esse é um tema ausente da grade de muitos (...) cursos, daí a importância desta palestra organizada pelos alunos, em 2006, da disciplina de Comunicação Internacional do Programa de Pós-graduação em Comunicação – mestrado – da Uerj, que também encerra as atividades da disciplina no semestre. Este encontro faz parte do Seminário de Produção Acadêmica (SPA), no qual os alunos da graduação e da pós-graduação se encontram em algumas ocasiões para debater assuntos pré-agendados. Participam desta mesa os seguintes correspondentes internacionais: Paula Gobbi, presidente da Associação dos Correspondentes de Imprensa Estrangeira no Rio de Janeiro (ACIE), que reúne praticamente todos os correspondentes estrangeiros sediados na cidade; a brasileira Ivani Flora, que trabalha para a rede de televisão SIC, de Portugal; Ana Maria Geres, diretora no Brasil da agência de notícias espanhola EFE, e Krzysztof Gluchowski, correspondente do jornal The Polish Daily, que circula na Grã-Bretanha. (shrink)

This paper argues that we should replace the common classification of theories of welfare into the categories of hedonism, desire theories, and objective list theories. The tripartite classification is objectionable because it is unduly narrow and it is confusing: it excludes theories of welfare that are worthy of discussion, and it obscures important distinctions. In its place, the paper proposes two independent classifications corresponding to a distinction emphasised by Roger Crisp: a four-category classification of enumerative theories (about which items constitute (...) welfare), and a four-category classification of explanatory theories (about why these items constitute welfare). (shrink)

Are we witnessing progress or regress in the recent increasing popularity and electoral success of populist politicians and parties in consolidated democratic nations? ... Is the innovative use of popular referendum in Great Britain to settle fundamental constitutional questions a progressive or regressive innovation? ... Similarly, is the increasing use of constituent assemblies to change constitutions across the world evidence of progress in democratic constitutionalism, or, a worryingly regressive change back toward unmediated popular majoritarianism? ... This paper reflects on some (...) of the perils and promise of framing such questions with the conceptual couplet of progress and regress. It considers four compelling critiques of the use of ‘progress’ and its cognates in sociopolitical theory, as well as arguing that such concepts are nevertheless ineliminable for our normative theories. The paper concludes by suggesting that we can avoid the most serious problems by employing only conceptions of political progress and regress that are piecemeal, pragmatic, and processual. (shrink)

This chapter surveys hybrid theories of well-being. It also discusses some criticisms, and suggests some new directions that philosophical discussion of hybrid theories might take.

Group-based reasons are reasons to play one’s part in some pattern of action that the members of some group could perform, because of the good features of the pattern. This paper discusses three broad conceptions of such reasons. According to the agency-first conception, there are no group-based reasons in cases where the relevant group is not or would not be itself an agent. According to the behaviour-first conception, what matters is that the other members of the group would play their (...) parts in the relevant pattern, not whether they would have the cooperative intentional states constitutive of group agency in doing so. This paper argues against these conceptions and in favour of the powers-first conception, according to which what matters is that the members of the group have practically relevant powers. (shrink)

Difficult Atheism shows how contemporary French philosophy is rethinking the legacy of the death of God in ways that take the debate beyond the narrow confines of atheism into the much broader domain of post-theological thinking. Christopher Watkin argues that Alain Badiou, Jean-Luc Nancy and Quentin Meillassoux each elaborate a distinctive approach to the post-theological, but that each approach still struggles to do justice to the death of God.

Theorists of public reason such as John Rawls often idealize constitutional courts as exemplars of public reason. This paper raises questions about the seduction and limits of analogies between theorists’ account of public reason and actual constitutional jurisprudence. Examining the work product of the United States Supreme Court, the paper argues that while it does engage in reason-giving to support its decisions—as the public reason strategy suggests— those reasons are (largely) legalistic and specifically juristic reasons—not the theorists’ idealized moral-political reasons (...) on matters of fundamental principle. But if constitutional courts do not engage on matters of fundamental principle, then a public reason strategy for assuaging democratic worries about judicial review would no longer be open: prominent liberal and deliberative democratic theorists could no longer point to the alleged superiority of constitutional courts to speak in the name of, and for, the people’s shared political principles. The paper extends beyond the U.S. case study by pointing to three institutional factors explaining the disanalogy between what some constitutional courts do and what public reason theories require them to do. It concludes with considerations about whether the public reason strategy might be more successfully applied to international courts. (shrink)