BackgroundAmidst expanding roles in education and policy making, questions have been raised about the ability of Clinical Ethics Committees s to carry out effective ethics consultations. However recent reviews of CECs suggest that there is no uniformity to CECons and no effective means of assessing the quality of CECons. To address this gap a systematic scoping review of prevailing tools used to assess CECons was performed to foreground and guide the design of a tool to evaluate the quality of CECons.MethodsGuided (...) by Levac et al’s methodological framework for conducting scoping reviews, the research team performed independent literature reviews of accounts of assessments of CECons published in six databases. The included articles were independently analyzed using content and thematic analysis to enhance the validity of the findings.ResultsNine thousand sixty-six abstracts were identified, 617 full-text articles were reviewed, 104 articles were analyzed and four themes were identified – the purpose of the CECons evaluation, the various domains assessed, the methods of assessment used and the long-term impact of these evaluations.ConclusionThis review found prevailing assessments of CECons to be piecemeal due to variable goals, contextual factors and practical limitations. The diversity in domains assessed and tools used foregrounds the lack of minimum standards upheld to ensure baseline efficacy.To advance a contextually appropriate, culturally sensitive, program specific assessment tool to assess CECons, clear structural and competency guidelines must be established in the curation of CECons programs, to evaluate their true efficacy and maintain clinical, legal and ethical standards. (shrink)

Whether due to simplicity or hypocrisy, the question of access to patient data for biomedical research is widely seen in the public discourse only from the angle of patient privacy. At the same time, the desire to live and to live without disability is of much higher value to the patients. This goal can only be achieved by extracting research insight from patient data in addition to working on model organisms, something that is well understood by many patients. Yet, most (...) biomedical researchers working outside of clinics and hospitals are denied access to patient records when, at the same time, clinicians who guard the patient data are not optimally prepared for the data’s analysis. Medical data collection is a time- and cost-intensive process that is most of all tedious, with few elements of intellectual and emotional satisfaction on its own. In this process, clinicians and bioinformaticians, each group with their own interests, have to join forces with the goal to generate medical data sets both from clinical trials and from routinely collected electronic health records that are, as much as possible, free from errors and obvious inconsistencies. The data cleansing effort as we have learned during curation of Singaporean clinical trial data is not a trivial task. The introduction of omics and sophisticated imaging modalities into clinical practice that are only partially interpreted in terms of diagnosis and therapy with today’s level of knowledge warrant the creation of clinical databases with full patient history. This opens up opportunities for re-analyses and cross-trial studies at future time points with more sophisticated analyses of the same data, the collection of which is very expensive. (shrink)

IntroductionClinical ethics committees support and enhance communication and complex decision making, educate healthcare professionals and the public on ethical matters and maintain standards of care. However, a consistent approach to training members of CECs is lacking. A systematic scoping review was conducted to evaluate prevailing CEC training curricula to guide the design of an evidence-based approach.MethodsArksey and O’Malley’s methodological framework for conducting scoping reviews was used to evaluate prevailing accounts of CEC training published in six databases. Braun and Clarke’s thematic (...) analysis approach was adopted to thematically analyse data across different healthcare and educational settings.Results7370 abstracts were identified, 92 full-text articles were reviewed and 55 articles were thematically analysed to reveal four themes: the design, pedagogy, content and assessment of CEC curricula.ConclusionFew curricula employ consistent approaches to training. Many programmes fail to provide CEC trainees with sufficient knowledge, skills and experience to meet required competencies. Most programmes do not inculcate prevailing sociocultural, research, clinical and educational considerations into training processes nor provide longitudinal support for CEC trainees. Most CEC training programmes are not supported by host institutions threatening the sustainability of the programme and compromising effective assessment and longitudinal support of CEC trainees. While further reviews are required, this review underlines the need for host organisations to support and oversee a socioculturally appropriate ethically sensitive, clinically relevant longitudinal training, assessment and support process for CEC trainees if CECs are to meet their roles effectively. (shrink)

As empathy gains importance within academia, we propose this review as an attempt to bring clarity upon the diverse and widely debated definitions and conceptions of empathy within the medical field. In this paper, we first evaluate the limits of the Western mainstream medical culture and discuss the origins of phenomena such as dehumanization and detached concern as well as their impacts on patient care. We then pass on to a structured overview of the debate surrounding the notion of clinical (...) empathy and its taxonomy in the medical setting. In particular, we present the dichotomous conception of clinical empathy that is articulated in the debate around cognitive empathy and affective empathy. We thus consider the negative impacts that this categorization brings about. Finally, we advocate for a more encompassing, holistic conception of clinical empathy; one that gives value to a genuine interest in welcoming, acknowledging and responding to the emotions of those suffering. Following this line of reasoning, we advance the notion of ‘empathic concern’, a re-conceptualization of clinical empathy that finds its source in Halpern in Med Health Care Philos 17:301–311 engaged curiosity. We ultimately advance Narrative Medicine as an approach to introduce, teach and promote such an attitude among medical trainees and practitioners. (shrink)

Recent democratic theorists have drawn on the work of the late Pierre Bourdieu to make the case that patterned inequalities in the social capacity to engage in deliberation can undermine deliberative theory?s democratic promise. They have proposed a range of deliberative democratic responses to the problem of cultural inequality, from enabling the marginalised to adopt the communicative dispositions of the dominant, to broadening the standards that define legitimate deliberation, to strengthening deliberative counter?publics. The author interprets Bourdieu?s theory of the linguistic (...) habitus to prompt an even more radical critique of deliberative democracy than these theorists acknowledge, one to which the proposed solutions fail adequately to respond. Her argument suggests that empirical work on deliberative democracy should expand to address specifically the problems of cultural inequality that Bourdieu?s work highlights. (shrink)

Large-scale whole genome sequencing (WGS) studies promise to revolutionize cancer research by identifying targets for therapy and by discovering molecular biomarkers to aid early diagnosis, to better determine prognosis and to improve treatment response prediction. Such projects raise a number of ethical, legal, and social (ELS) issues that should be considered. In this study, we set out to discover how these issues are being handled across different jurisdictions.

Death and bereavement are human experiences that new media helps facilitate alongside creating new social grief practices that occur online. This study investigated how people’s postings and tweets facilitated the communication of grief after pop music icon Michael Jackson died. Drawing on past grief research, religion, and new media studies, a thematic analysis of 1,046 messages was conducted on three mediated sites. Results suggested that social media served as grieving spaces for people to accept Jackson’s death rather than denying it (...) or expressing anger over his passing. The findings also illustrate how interactive exchanges online helped recycle news and “resurrected” the life of Jackson. Additionally, as fans of deceased celebrities create and disseminate web-based memorials, new social media practices such as “Michael Mondays” synchronize tweets within everyday life rhythms and foster practices to hasten the grieving process. (shrink)

This book presents a systematic account of the role of the personal spiritual ideal of wu-wei--literally "no doing," but better rendered as "effortless action"--in early Chinese thought. Edward Slingerland's analysis shows that wu-wei represents the most general of a set of conceptual metaphors having to do with a state of effortless ease and unself-consciousness. This concept of effortlessness, he contends, serves as a common ideal for both Daoist and Confucian thinkers. He also argues that this concept contains within itself a (...) conceptual tension that motivates the development of early Chinese thought: the so-called "paradox of wu-wei," or the question of how one can consciously "try not to try." Methodologically, this book represents a preliminary attempt to apply the contemporary theory of conceptual metaphor to the study of early Chinese thought. Although the focus is upon early China, both the subject matter and methodology have wider implications. The subject of wu-wei is relevant to anyone interested in later East Asian religious thought or in the so-called "virtue-ethics" tradition in the West. Moreover, the technique of conceptual metaphor analysis--along with the principle of "embodied realism" upon which it is based--provides an exciting new theoretical framework and methodological tool for the study of comparative thought, comparative religion, intellectual history, and even the humanities in general. Part of the purpose of this work is thus to help introduce scholars in the humanities and social sciences to this methodology, and provide an example of how it may be applied to a particular sub-field. (shrink)

This article explores the category of biopolitics through the use Roberto Esposito and Giorgio Agamben make of two Greek words, bios and ōē. In particular, I argue that the separation of bios and ōē as introduced in Homo Sacer has no "natural" nor "lingual" relevance. The exposition of such a fabulous antinomy simply ruins the historical matter of Agamben's discourse on biopolitics. Here, Esposito's research could be read as an attempt to found the category of biopolitics anew without repeating the (...) fiction of a bifurcation between ōē and bios. However, Esposito, in his own celebration of biopower, undermines the very power of language and, thus, ignores the variation of the invariant that is history. Esposito's and Agamben's difficulties lead us back to the possible ambition of all politics to absorb all life, as it was already expressed by Aristotle. In this sense, "modern biopolitics" becomes a case study for the totalitarian temptation of political order. (shrink)

_"Clarissa" on the Continent _defines and explores two strategies of literary translation—creative vs. preservative and strong vs. weak—as they transform one of the most influential English novels. Thomas Beebee compares the two opposing strategies as they influence the French translation of _Clarissa_ by the novelist Antione François de Prévost and the German translation by the Göttingen Orientalist Johann David Michaelis, and in doing so he demonstrates that each translator found authority for his procedure within the text itself. Each translation (...) is also examined in light of Richardson's other writings and placed in its literary and cultural context. This study uses translations in order to interpret _Clarissa_, to show how the basis for the novel's reception on the Continent was laid, and to explore the differences and interactions among three literary and cultural systems of the eighteenth century. The close examination of these two important translations enable the formulation of not only a theory of creative vs. preservative translation but also the interconnections between literary theory and translation theory. Beebee also looks at later translations of _Clarissa_ as products of literary and historical change and at Prévostian strategies of the novel. (shrink)

_"Clarissa" on the Continent _defines and explores two strategies of literary translation—creative vs. preservative and strong vs. weak—as they transform one of the most influential English novels. Thomas Beebee compares the two opposing strategies as they influence the French translation of _Clarissa_ by the novelist Antione François de Prévost and the German translation by the Göttingen Orientalist Johann David Michaelis, and in doing so he demonstrates that each translator found authority for his procedure within the text itself. Each translation (...) is also examined in light of Richardson's other writings and placed in its literary and cultural context. This study uses translations in order to interpret _Clarissa_, to show how the basis for the novel's reception on the Continent was laid, and to explore the differences and interactions among three literary and cultural systems of the eighteenth century. The close examination of these two important translations enable the formulation of not only a theory of creative vs. preservative translation but also the interconnections between literary theory and translation theory. Beebee also looks at later translations of _Clarissa_ as products of literary and historical change and at Prévostian strategies of the novel. (shrink)

In two recent papers, Mr Robert Young maintains that all attempts by philosophers to bolster the-violation-of-law concept of miracles are bound to fail and propounds what he claims to be a novel non-reductivist concept of miracles which avoids the conceptual difficulties of the violation-model. His view of miracles is of god being ‘an active agent-factor in the set of factors which actually was causally operative’ [p. 123] in an event dubbed a miracle. God is put in among ‘the plurality of (...) causes’ [p. 122, S p. 33] that could determine the event, but if he acts in a miracle, then ‘his presence…alters the outcome from what it would have been if, contrary to fact , he had not been present’ [p. 122]. Young claims that his concept ‘is neither a violation of … laws nor is it a coincidental occurrence religiously interpreted’ [p. 122, S p. 33], and so it avoids the difficulties, which he thinks are faced by the violation-model, of having an intelligible notion of an occurrence of the physically impossible, and also the reductivism inherent in taking mere coincidences as miracles. He also suggests a procedure of settling the epistemological issue regarding particular alleged miracles, an inquiry he thinks he has made possible by having first given a sense to miracles. [p. 126]. (shrink)

El concepto de dignidad humana ha sido considerado o demasiado denso o demasiado delgado. Sin embargo, desde el punto de vista del no-positivismo, la normatividad jurídica de la dignidad humana puede ser justificada y reforzada por medio de su corrección moral. Desde una perspectiva individual, la comprensión de Mencio sobre la dignidad humana como un valor intrínseco y el imperativo categórico de Kant (el ser humano como un fin en sí mismo) podrían ser adecuadamente comprendidos con base en la diferencia (...) (así como la conexión) entre el principium diiudicationis y el principium executionis, entre voluntad y “elección”; así como entre homo phaenomenon y homo noumenon (es decir, humanidad en la persona de los seres humanos). Desde una perspectiva social, las dimensiones del individuo y la persona social son construcciones ficticias; inclusive Radbruch -alguna vez defensor del derecho social- no remplazó el concepto de “persona jurídica” y, en el periodo de posguerra, reconoció la dignidad humana individual como el criterio para aplicar su famosa “fórmula de Radbruch". Por una parte, la dignidad humana muestra cuando menos un carácter normativo débil, el cual requiere, primero, ponderar entre el ejercicio de los poderes estatales y el control de constitucionalidad bajo la guía de la dimensión dual del ser humano y, segundo, la optimización del principio de la dignidad humana en casos particulares. Por otra, a través de la conexión necesaria entre el concepto de dignidad y personalidad, la dignidad humana puede exhibir un carácter normativo fuerte, el cual requiere inevitablemente una justificación metafísica. (shrink)

The expansion of research on deep brain stimulation and adaptive DBS raises important neuroethics and policy questions related to data sharing. However, there has been little empirical research on the perspectives of experts developing these technologies. We conducted semi-structured, open-ended interviews with aDBS researchers regarding their data sharing practices and their perspectives on ethical and policy issues related to sharing. Researchers expressed support for and a commitment to sharing, with most saying that they were either sharing their data or would (...) share in the future and that doing so was important for advancing the field. However, those who are sharing reported a variety of sharing partners, suggesting heterogeneity in sharing practices and lack of the broad sharing that would reflect principles of open science. Researchers described several concerns and barriers related to sharing, including privacy and confidentiality, the usability of shared data by others, ownership and control of data, and limited resources for sharing. They also suggested potential solutions to these challenges, including additional safeguards to address privacy issues, standardization and transparency in analysis to address issues of data usability, professional norms and heightened cooperation to address issues of ownership and control, and streamlining of data transmission to address resource limitations. Researchers also offered a range of views on the sensitivity of neural activity data and data related to mental health in the context of sharing. These findings are an important input to deliberations by researchers, policymakers, neuroethicists, and other stakeholders as they navigate ethics and policy questions related to aDBS research. (shrink)

In this article, we explore the concept of a “right not to know” on a population rather than individual level. We argue that a population level “right not to know” is a useful concept for helping to define the appropriate boundaries of public engagement initiatives in the emerging public health genomics context.

In recent years, philosophical ideas developed during the Wei-Jin period, broadly referred to as xuanxue in Chinese and ‘Neo-Daoism’ or ‘Dark Learning’ in English, have been accorded increasing attention in academia. This article provides an introduction to some major thinkers of the Wei-Jin period, addressing both their original writings and recent scholarly interpretations. The article aims to demonstrate that many Wei-Jin period intellectuals formed their theories through reinterpreting the relationship between texts associated with Daoism and Confucianism. Thinkers of this period (...) often attempted to show how these defining ‘schools’ of pre-Qin Chinese thought did not propose theories that were fundamentally inconsistent, and that their ideas could be woven together as elements of a coherent view. This intellectual movement can thus be, and often has been, viewed as an attempt to integrate Daoism and Confucianism. However, a more nuanced reading demonstrates that these thinkers were reworking the relationship between what were seen as predominately Daoist or Confucian themes from their very foundation. Accordingly, the common description of Wei-Jin thinkers as ‘Daoist’ is decidedly incongruous. (shrink)

While the realm of bioethics has traditionally focused on the rights of the individual and held autonomy as a defining principle, public health ethics has at its core a commitment to the promotion of the common good. While these two domains may at times conflict, concepts arising in one may also be informative for concepts arising in the other. One example of this is the concept of a “right not to know.” Recent debate suggests that just as there is a (...) “right to know” information about one's genetic status, there is a parallel “right not to know” when it comes to genetic information that if communicated, could be detrimental to an individual's social or psychological well-being. As new genetic technologies continue to change the nature of genetic testing and screening, it is crucial that normative frameworks to guide and assess genetic public health initiatives be developed. In this context, the question of whether a “right not to know” may also be said to exist for populations on a public health level merits attention. (shrink)

The Resilience Scale for Adolescents is a highly rated scale for measuring protective factors of resilience. Even though the READ has been validated in several different cultural samples, no studies have validated the READ across samples in German from Switzerland and Germany. The purpose of this study was to explore the construct validity of the German READ version in two samples from two different countries and to test the measurement invariance between those two samples. A German sample and a German-speaking (...) Swiss sample of seventh graders completed the READ, Hopkins Symptom Checklist, Rosenberg Self-Esteem Scale, General Self-Efficacy Scale, and Satisfaction with Life Scale. The expected negative correlations between READ and HSCL-25 and the positive correlations between RSE, self-efficacy, and SWL were supported. Furthermore, the results of the measurement invariance demonstrated that the originally proposed five-dimensional structure is equal in the German and Swiss samples, and it can be assumed that the same construct was assessed by excluding one item. The five-factor, 27-item solution is a valid and reliable self-report measure of protective factors between two German-speaking samples. (shrink)

Delusions are typically regarded as beliefs of a certain kind, both by psychiatrists and by lay people. In “Double Bookkeeping and Doxasticism about Delusion,” Porcher formulates and assesses two kinds of arguments against doxasticism about delusions, the theoretical stance according to which delusions are a kind of belief. Those arguments, which Porcher calls “the argument from action guidance and the argument from phenomenology” are motivated by a phenomenon sometimes associated with delusions: double bookkeeping, a kind of ambivalence of patients, who (...) “often appear to be living in two parallel but separate worlds: consensual reality and the realm of their hallucinations and delusions” (Sass, 1994, p.... (shrink)

This essay develops an inferential account of model explanation, based on Mauricio Suárez’s inferential conception of scientific representation and Alisa Bokulich’s counterfactual account of model explanation. It is suggested that the fact that a scientific model can explain is essentially linked to how a modeler uses an established model to make various inferences about the target system on the basis of results derived from the model. The inference practice is understood as a two-step activity, with the first step involving making (...) counterfactual statements about the model itself and the second step involving making hypothetical statements transferring over claims derived from the model onto the target. To illustrate how this two-step activity proceeds, an agent-based simulation model is discussed. (shrink)

My title question has something of the feel of a book club discussion starter, but it has further-reaching implications for understanding Mrs. Dalloway than might first appear. Consider two more mainstream interpretive questions. First, Virginia Woolf's novel places extensive cognitive and aesthetic demands on its readers and thereby participates in the famous "difficulty" of much high-modernist literature. Any interpretation should explain why Woolf thought such a challenge to the capacities and expectations of the reader was necessary or conducive to her (...) purposes. Second, it is an obvious, perhaps the most obvious, feature of the work that it takes the name of a character for its title. That puts Clarissa... (shrink)

This essay takes as its starting point an apparent tension between theories of democratic deliberation and democratic theories of multicultural accommodation and makes the case that many multiculturalists and deliberative democrats converge on an ideal of political freedom, understood as nondomination. It argues for distinguishing two dimensions of nondomination: inter-agentive nondomination, which obtains when all participants in a power relation are free from rule by others who can set its terms, and systemic nondomination, which obtains when the terms of a (...) power relation itself are responsive to those they affect. Because inter-agentive and systemic nondomination do not covary, it is critical to distinguish between them, in order to build institutions and practices that promote both. (shrink)

O PAPEL DA CRÍTICA HERMENÊUTICA DO DIREITO: SOBRE AS RELAÇÕES ENTRE FILOSOFIA, TEORIA DO DIREITO E A ATUAÇÃO DO JUDICIÁRIO.