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)

_"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)

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)

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)

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

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 (Twitter, TMZ.com, and Facebook). 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)

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.

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 asdehumanizationanddetached concernas 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 aroundcognitive empathyandaffective 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 (2014) 17:301–311engaged curiosity. We ultimately advance Narrative Medicine as an approach to introduce, teach and promote such an attitude among medical trainees and practitioners. (shrink)

Generative artificial intelligence systems based on transformers, including both text-generators like GPT-3 and image generators like DALL-E 2, have recently entered the popular consciousness. These tools, while impressive, are liable to reproduce, exacerbate, and reinforce extant human social biases, such as gender and racial biases. In this paper, we systematically review the extent to which DALL-E Mini suffers from this problem. In line with the Model Card published alongside DALL-E Mini by its creators, we find that the images it produces (...) tend to represent dozens of different occupations as populated either solely by men (e.g., pilot, builder, plumber) or solely by women (e.g., hairdresser, receptionist, dietitian). In addition, the images DALL-E Mini produces tend to represent most occupations as populated primarily or solely by White people (e.g., farmer, painter, prison officer, software engineer) and very few by non-White people (e.g., pastor, rapper). These findings suggest that exciting new AI technologies should be critically scrutinized and perhaps regulated before they are unleashed on society. (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)

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)

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)

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.

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)

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)

What happens when humans and birds engage each other through a collaboration-as-fantasy mediated by computers? Could such an exercise be modelled in a way that helps us to transcend the techno-ocularcentric fetishes for precision and certainty which demarcate our time? From Edgar Wind’s notion of 'incarnation' ‐ as the place where empirical experience and metaphysical foundation meet in the single cognitive and experiential act ‐ this article bridges the analogue with the digital, navigating nature’s strategies to embody inherited and learned (...) complex behaviours in the design of nests, in what I call data-nests. (shrink)

Four instances of how science fiction contributes to the elucidation of novelty in the context of discovery are considered by extending existing discussions on temporal and use-novelty. In the first instance, science fiction takes an already well-known theory and produces its own re-interpretation; in the second instance, the scientific account is usually straightforward and whatever novelty that may occur would be more along the lines of how the science is deployed to extra-scientific matters; in the third instance, science fiction takes (...) an idea that appears impossible within the delimitations of reality and produces a universe where such a possibility becomes feasible; and in the fourth instance, science fiction extends from an idea already known at the time of the work’s production to simulate a possibility that could emerge should the extension be experimentally viable. However, the article will not end with a mere evaluation of these instances, but also proposes instances on how science fiction could contribute to new ways of experiencing, discerning, and working with scientific knowledge. (shrink)