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)

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)

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)

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)

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

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)

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)

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 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 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)

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)

Theorien der "Anerkennung" zeichnen sich durch eine außergewöhnliche Leistungsstärke aus. In den letzten Jahren haben sie die Forschung auf den Gebieten der Moralphilosophie, der Politischen Philosophie und der Sozialphilosophie, aber auch auf denen der Psychologie und der Sozialwissenschaften sowohl thematisch als auch methodisch sehr stark bereichert. Viele dieser Theorien versuchen zudem, Überlegungen, die von klassischen Autoren wie Fichte oder Hegel entwickelt wurden, für die aktuelle Diskussion systematisch fruchtbar zu machen. Dieser Konstellation trägt der vorliegende Band Rechnung. Durch eine Verzahnung von (...) systematischen und philosophiegeschichtlichen Überlegungen leistet er einen wesentlichen Beitrag zur Lösung und Weiterentwicklung aktueller anerkennungstheoretischer Probleme und Fragestellungen sowie zu einer Neuinterpretation klassischer philosophischer Texte. Aufgrund seines thematischen Zuschnitts ist das Buch nicht nur für Philosophen, sondern auch für Sozialwissenschaftler von großem Interesse. Mit Beiträgen von: J. Bernstein, D. Brudney, J.-Ph. Déranty, N. Fraser, A. Honneth, H. Ikäheimo, A. Laitinen, F. Neuhouser, T. Pinkard, M. Quante, E. Renault, H.-C. Schmidt am Busch, L. Siep, A. Wildt und Ch. F. Zurn. (shrink)

The party registration of tenure‐track faculty at 11 California universities, ranging from small, private, religiously affiliated institutions to large, public, elite schools, shows that the “one‐party campus” conjecture does not extend to all institutions or all departments. At one end of the scale, U.C. Berkeley has an adjusted Democrat:Republican ratio of almost 9:1, while Pepperdine University has a ratio of nearly 1:1. Academic field also makes a tremendous difference, with the humanities averaging a 10:1 D:R ratio and business schools averaging (...) 1.3:1, and with departments ranging from sociology (44:1) to management (1.5:1). Across all departments and institutions, the D:R ratio is 5:1, while in the “soft” liberal‐arts fields, the ratio is higher than 8:1. These findings are generally in line with comparable previous studies. (shrink)

Aristotle is often named as the first zoologist or biologist because of his writings on animals. Although Aristotle’s major intention in these books was to illustrate his ideas of how knowledge and understanding might advance, at least one modern biologist (C. Darwin) has recognized Aristotle's depth and breadth as being of surviving merit. Of greater surprise is the ongoing attention that his works continue to receive, including publications in contemporary scientific journals. This review identifies 38 peer-reviewed papers on various topics (...) from Aristotle’s biological writings that have been published during the last 50 years. These papers are described according to content (genetics, population biology, anatomy, brain, movement), specific creatures (fish, scorpions, elephants, insects, birds), publication outlet, distribution over the fifty year period surveyed, and visible trends in the topics studied. It is concluded that, in the highly-competitive field of peer-reviewed scientific publication and citation, Aristotle's biology continues to excite the interest of scientists and remains salient to modern science itself. (shrink)

In Cornford's opinion, the theory of Forms as put forward in theParmenides is identical with the theory as stated in the Pbaedo—both of them expressing thethat concrete things are the bearers, simultaneously, of contrary characters. Christopher Kirwan has recently denied this identity, in a paper which, if hisis accepted, will upset many traditions and greatly alter our understandingLthe middle dialogues.

In Cornford's opinion, the theory of Forms as put forward in theParmenides is identical with the theory as stated in the Pbaedo—both of them expressing thethat concrete things are the bearers, simultaneously, of contrary characters. Christopher Kirwan has recently denied this identity, in a paper which, if hisis accepted, will upset many traditions and greatly alter our understandingLthe middle dialogues.

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)

“Tell me," Wittgenstein once asked a friend, "why do people always say, it was natural for man to assume that the sun went round the earth rather than that the earth was rotating?" His friend replied, "Well, obviously because it just looks as though the Sun is going round the Earth." Wittgenstein replied, "Well, what would it have looked like if it had looked as though the Earth was rotating?” What would it have looked like if we looked at all (...) sciences from the viewpoint of Wittgenstein’s philosophy? Wittgenstein is undoubtedly one of the most influential philosophers of the twentieth century. His complex body of work has been analysed by numerous scholars, from mathematicians and physicists, to philosophers, linguists, and beyond. This volume brings together some of his central perspectives as applied to the modern sciences and studies the influence they may have on the thought processes underlying science and on the world view it engenders. The contributions stem from leading scholars in philosophy, mathematics, physics, economics, psychology and human sciences; all of them have written in an accessible style that demands little specialist knowledge, whilst clearly portraying and discussing the deep issues at hand. (shrink)

Youths with disruptive behavior disorders and psychopathic traits showed reduced amygdala responses to fearful expressions under low attentional load but no indications of increased recruitment of regions implicated in top- down attentional control. These findings suggest that the emotional deficit observed in youths with disruptive behavior disorders and psychopathic traits is primary and not secondary to increased top- down attention to nonemotional stimulus features.

Human neural and behavioral activities have been reported to exhibit fractal dynamics known as 1/f noise, which is more aptly named 1/f scaling. Some argue that 1/f scaling is a general and pervasive property of the dynamical substrate from which cognitive functions are formed. Others argue that it is an idiosyncratic property of domain‐specific processes. An experiment was conducted to investigate whether 1/f scaling pervades the intrinsic fluctuations of a spoken word. Ten participants each repeated the word bucket over 1,000 (...) times, and fluctuations in acoustic measurements across repetitions generally followed the 1/f scaling relation, including numerous parallel yet distinct series of 1/f fluctuations. On the basis of work showing that 1/f scaling is a universal earmark of metastability, it is proposed that the observed pervasiveness of 1/f fluctuations in speech reflects the fact that cognitive functions are formed as metastable patterns of activity in brain, body, and environment. (shrink)

This book is a collection of secondary essays on America's most important philosophic thinkers—statesmen, judges, writers, educators, and activists—from the colonial period to the present. Each essay is a comprehensive introduction to the thought of a noted American on the fundamental meaning of the American regime.

Given its non-invasive nature, there is increasing interest in the use of transcutaneous vagus nerve stimulation across basic, translational and clinical research. Contemporaneously, tVNS can be achieved by stimulating either the auricular branch or the cervical bundle of the vagus nerve, referred to as transcutaneous auricular vagus nerve stimulation and transcutaneous cervical VNS, respectively. In order to advance the field in a systematic manner, studies using these technologies need to adequately report sufficient methodological detail to enable comparison of results between (...) studies, replication of studies, as well as enhancing study participant safety. We systematically reviewed the existing tVNS literature to evaluate current reporting practices. Based on this review, and consensus among participating authors, we propose a set of minimal reporting items to guide future tVNS studies. The suggested items address specific technical aspects of the device and stimulation parameters. We also cover general recommendations including inclusion and exclusion criteria for participants, outcome parameters and the detailed reporting of side effects. Furthermore, we review strategies used to identify the optimal stimulation parameters for a given research setting and summarize ongoing developments in animal research with potential implications for the application of tVNS in humans. Finally, we discuss the potential of tVNS in future research as well as the associated challenges across several disciplines in research and clinical practice. (shrink)

Given its non-invasive nature, there is increasing interest in the use of transcutaneous vagus nerve stimulation across basic, translational and clinical research. Contemporaneously, tVNS can be achieved by stimulating either the auricular branch or the cervical bundle of the vagus nerve, referred to as transcutaneous auricular vagus nerve stimulation and transcutaneous cervical VNS, respectively. In order to advance the field in a systematic manner, studies using these technologies need to adequately report sufficient methodological detail to enable comparison of results between (...) studies, replication of studies, as well as enhancing study participant safety. We systematically reviewed the existing tVNS literature to evaluate current reporting practices. Based on this review, and consensus among participating authors, we propose a set of minimal reporting items to guide future tVNS studies. The suggested items address specific technical aspects of the device and stimulation parameters. We also cover general recommendations including inclusion and exclusion criteria for participants, outcome parameters and the detailed reporting of side effects. Furthermore, we review strategies used to identify the optimal stimulation parameters for a given research setting and summarize ongoing developments in animal research with potential implications for the application of tVNS in humans. Finally, we discuss the potential of tVNS in future research as well as the associated challenges across several disciplines in research and clinical practice. (shrink)

Biological evolution provides a creative fount of complex and subtle adaptations, often surprising the scientists who discover them. However, because evolution is an algorithmic process that transcends the substrate in which it occurs, evolution’s creativity is not limited to nature. Indeed, many researchers in the field of digital evolution have observed their evolving algorithms and organisms subverting their intentions, exposing unrecognized bugs in their code, producing unexpected adaptations, or exhibiting outcomes uncannily convergent with ones in nature. Such stories routinely reveal (...) creativity by evolution in these digital worlds, but they rarely fit into the standard scientific narrative. Instead they are often treated as mere obstacles to be overcome, rather than results that warrant study in their own right. The stories themselves are traded among researchers through oral tradition, but that mode of information transmission is inefficient and prone to error and outright loss. Moreover, the fact that these stories tend to be shared only among practitioners means that many natural scientists do not realize how interesting and lifelike digital organisms are and how natural their evolution can be. To our knowledge, no collection of such anecdotes has been published before. This paper is the crowd-sourced product of researchers in the fields of artificial life and evolutionary computation who have provided first-hand accounts of such cases. It thus serves as a written, fact-checked collection of scientifically important and even entertaining stories. In doing so we also present here substantial evidence that the existence and importance of evolutionary surprises extends beyond the natural world, and may indeed be a universal property of all complex evolving systems. (shrink)

Liver transplantation is the treatment of choice for many forms of liver disease. Unfortunately, the scarcity of cadaveric donor livers limits the availability of this technique. To improve the availability of liver transplantation, surgeons have developed the capability of removing a portion of liver from a live donor and transplanting it into a recipient. A few liver transplants using living donors have been performed worldwide.Our purpose was to analyze the ethics of liver transplants using living donors and to propose guidelines (...) for the procedure before it was introduced in the United States. We used a process of research ethics consultation that involves a collaboration between clinical investigators and clinical ethicists. We concluded that it was ethically appropriate to perform liver transplantation using living donors in a small series of patients on a trial basis, and we published our ethical guidelines in a medical journal before the procedure was introduced. We recommend this prospective, public approach for the introduction of other innovative therapies in medicine and surgery. (shrink)

Airway mucin secretion is important pathophysiologically and as a model of polarized epithelial regulated exocytosis. We find the trafficking protein, SNAP23, selectively expressed in secretory cells compared with ciliated and basal cells of airway epithelium by immunohistochemistry and FACS, suggesting that SNAP23 functions in regulated but not constitutive epithelial secretion. Heterozygous SNAP23 deletant mutant mice show spontaneous accumulation of intracellular mucin, indicating a defect in baseline secretion. However mucins are released from perfused tracheas of mutant and wild-type mice at the (...) same rate, suggesting that increased intracellular stores balance reduced release efficiency to yield a fully compensated baseline steady state. In contrast, acute stimulated release of intracellular mucin from mutant mice is impaired whether measured by a static imaging assay 5 min after exposure to the secretagogue ATP or by kinetic analysis of mucins released from perfused tracheas during the first 10 min of ATP exposure. Together, these data indicate that increased intracellular stores cannot fully compensate for the defect in release efficiency during intense stimulation. The lungs of mutant mice develop normally and clear bacteria and instilled polystyrene beads comparable to WT mice, consistent with these functions depending on baseline secretion that is fully compensated. (shrink)

What does social justice require in contemporary societies? What are the requirements of social democracy? Who and where are the individuals and groups that can carry forward agendas for progressive social transformation? What are we to make of the so-called new social movements of the last thirty years? Is identity politics compatible with egalitarianism? Can cultural misrecognition and economic maldistribution be fought simultaneously? What of the heritage of Western Marxism is alive and dead? And how is current critical social theory (...) to approach these and other questions? Much of the most productive work done in recent social theory has revolved around such issues, in particular, around those concerning the relationship between the politics of recognition and the politics of distribution. After the intense theoretical focus over the last fifteen years or so on the issues of recognition politics—multiculturalism, multi-nationalism, identity politics, group-differentiated rights, the accommodation of difference, and so on—some social theorists have worried that attention has been diverted from important issues of distributive equality—systematic impoverishment, increasing material inequality, ‘structural’ unemployment, the growth of oligarchic power, global economic segmentation, and so on. While some critics seem to have adopted a blunt ‘it’s the economy, stupid’ line of criticism,1 others have attempted to develop an overarching, integrative theoretical framework adequate to the diverse issues concerning both economic and cultural justice. For example, Axel Honneth proposes that a suitably developed and normatively robust theory of intersubjective recognition can adequately integrate an analysis of apparently diverse contemporary struggles: those for a just division of labor and hence, a fair distribution of resources and opportunities, as well as those for a culture free of identity-deforming disrespect and denigration. (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)