BackgroundConsent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and (...) health-related data for observational research.MethodsWe conducted qualitative interviews with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues.ResultsSudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients’ data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives.ConclusionsSudden cardiac arrest patients’ donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the use of participants’ data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well. (shrink)

Developments in medical big data analytics may bring societal benefits but are also challenging privacy and other ethical values. At the same time, an overly restrictive data protection regime can form a serious threat to valuable observational studies. Discussions about whether data privacy or data solidarity should be the foundational value of research policies, have remained unresolved. We add to this debate with an empirically informed ethical analysis. First, experiences with the implementation of the General Data Protection Regulation (GDPR) within (...) a European research consortium demonstrate a gap between the aims of the regulation and its effects in practice. Namely, strictly formalised data protection requirements may cause routinisation among researchers instead of substantive ethical reflection, and may crowd out trust between actors in the health data research ecosystem; while harmonisation across Europe and data sharing between countries is hampered by different interpretations of the law, which partly stem from different views about ethical values. Then, building on these observations, we use theory to argue that the concept of trust provides an escape from the privacy-solidarity debate. Lastly, the paper details three aspects of trust that can help to create a responsible research environment and to mitigate the encountered challenges: trust as multi-agent concept; trust as a rational and democratic value; and trust as method for priority setting. Mutual cooperation in research—among researchers and with data subjects—is grounded in trust, which should be more explicitly recognised in the governance of health data research. (shrink)

International education is impacted by multiple discourses, in particular the discourse of university as an educational institution responsible for producing and curating knowledge for the public good, pursuing truth and transforming student life, and the neoliberal marketing discourse which portrays the university as a business organization providing a service for international students as customers/consumers. Following a multimodal discourse analytic perspective, this study examines ‘Why Choose’ webpages of one British and two Australian universities to identify how the apparently conflicting higher education (...) and neoliberal marketing discourses are managed in the interdiscursive space using language, images and videos. The results reveal that ‘Why Choose’ webpages are hybrid texts where the discourse of higher education is upheld in relation to the neoliberal marketing discourse through multimodal strategies of accentuation, infusion and progression. The study argues for the necessity of undertaking a multimodal discourse approach to understand how various positions are negotiated interdiscursively in online media. (shrink)

In Australia research projects proposing the use of linked data require approval by a Human Research Ethics Committee . A sound evaluation of the ethical issues involved requires understanding of the basic mechanics of data linkage, the associated benefits and risks, and the legal context in which it occurs. The rapidly increasing number of research projects utilising linked data in Australia has led to an urgent need for enhanced capacity of HRECs to review research applications involving this emerging research methodology. (...) The training described in this article was designed to respond to an identified need among the data linkage units in the Australian Population Health Research Network and HREC members in Australia. (shrink)

L. T. Hobhouse is most familiar today as a leading theorist of British new liberalism. This article recovers and examines his overlooked commentary on the concept and rhetoric of race,...

Although children’s negative affectivity is a temperamental characteristic that is biologically based, it is framed within and shaped by their emotional environments which are partly created by maternal emotion expressivity in the family. Children, in turn, play a role in shaping their family emotional context, which could lead to changes in mothers’ emotion expressivity in the family. However, these theorized longitudinal bidirectional relations between child negative affectivity and maternal positive and negative expressivity have not been studied from toddlerhood to early (...) school-age. The current study utilized a cross-lagged panel model to examine the reciprocal relations between children’s negative affectivity and maternal expressivity within the family over the course of early childhood. Participants were 140 mother–child dyads. Mothers reported the positive and negative expressivity in the family and children’s negative affectivity in toddlerhood, preschool, and school-age. Maternal negative expressivity and child negative affectivity at T1 were significantly correlated. Maternal negative expressivity at T1 significantly predicted child negative affectivity at T3. Children’s negative affectivity at T2 significantly predicted mothers’ negative expressivity at T3. Mothers’ positive expressivity was not related to children’s negative affectivity at any of the three time points. The findings demonstrate the reciprocal relations between children’s negative affectivity and maternal negative expressivity in the family, suggesting the importance of the interplay between child temperament and maternal expressivity within the family emotional context. (shrink)

Prior research has examined value antecedents to sustainable consumption, including religious or cultural values. We bridge together these usually separated bodies of literature to provide an ethically-based examination of both religious and cultural values in one model to understand what drives sustainable consumption as well as outcomes on consumer well-being. In doing so, we also fulfill calls for more research on socio-demographic antecedents to ethical consumption, particularly in the domain of sustainable consumption. We examine this relationship using data from the (...) religiously and culturally diverse country of Singapore, collected from a door-to-door, representative sample utilizing numerous quality control techniques. Our path analysis and logical follow-up tests reveal that both religious and cultural values influence sustainable consumption, and then sustainable consumption positively influences consumer well-being. Implications are provided for consumer ethics, business’ ethical practices, and belief congruence theory. (shrink)

" En écrivant son Traité de l'Interprétation, Aristote a trempé sa plume à l'encre de son esprit! " L'antique remarque de Cassiodore vaut encore aujourd'hui tant la matière étudiée est complexe et le style ramassé. Aristote démonte les mécanismes du langage philosophique, aux confins de la linguistique et de la métaphysique. Il offre à cette occasion des développements fondateurs sur la formulation de la vérité, les règles de mise en contradiction, les propositions universelles, la contingence des jugements sur le futur, (...) ou encore les redoutables énonciations modales. S'appuyant sur ses prédécesseurs, Thomas d'Aquin en rédige un commentaire hautement structuré, reconnu comme l'un des plus explicites. Demeuré cependant inachevé, il est complété par Thomas de Vio, dit Cajetan, un des premiers grands thomistes et maître logicien. C'est de l'ensemble de ces deux parties de commentaires que nous proposons la traduction ; la seconde pour la première fois en langue française. (shrink)

Editors Wanda Teays, John-Stewart Gordon, and Alison Dundes Renteln have assembled the works of an interdisciplinary, international team of experts in bioethics into a comprehensive, innovative and accessible book. Topics covered range from torture and lethal injection to euthanasia, sex selection, vulnerable human subjects, to health equity, safety and public health, and environmental disasters like Bhopal, Fukushima, and more.

This question is the theme uniting all these essays by lead Chinese and Western philosophers.

In an attempt to learn from COVID-19, this essay features six responses to the question: what did COVID-19 teach us, expose in us, or purge out of us when it comes to spiritual formation in Christ? Each response was written independently of the others by one of the coauthors. Diane J. Chandler focuses in on how COVID-19 exposed grievous inequities for ethnic groups in the American church and broader society. Kelly M. Kapic reminds us of the goodness of human finitude (...) and how COVID restrictions have forced many of us to embrace our limitations. Siang-Yang Tan reflects on eight lessons he has learned during this pandemic year in his role shepherding a local church. James C. Wilhoit calls us to consider the structures that are needed for local church leadership to make wise and godly decisions in times of crisis. Richard Peace draws our attention to what might be learned from the forced monasticism brought about by COVID-19 quarantines. Finally, Ruth Haley Barton pauses to consider the interdependence of human life that has been dramatically illustrated by this pandemic. While these six responses certainly do not exhaust all there is for the church to learn from COVID, we present them in the spirit of “O Lord, teach us what we do not see” and hope they will inspire your own reflections. (shrink)

As leadership discourses in higher education are increasingly being mediated online, texts previously reserved for staff are now being made available in the public domain. As such, these texts become accessible for study, critique and evaluation. Additionally, discourses previously confined to the written domain are now increasingly multimodal. Thus, an approach is required that is capable of relating detailed, complex multimodal discourse analyses to broader sociocultural perspectives to account for the complex meaning-making practices that operate in online leadership discourses. For (...) this purpose, a digital multimodal discourse approach is proposed and illustrated via a small-scale case study of the online leadership discourse of an Australian university. The analysis of two short video texts demonstrates how a digital multimodal discourse perspective facilitates the identification of key multimodal systems used for meaning-making in online communication, how meaning arises through combinations of semiotic choices, and how the results of multimodal discourse analysis using digital technology can reveal larger sociocultural patterns – in this case, divergent leadership styles and approaches as reflected in online discourse, at a time of immense change within the higher education sector. (shrink)

University human research ethics application procedures can be complicated and daunting, especially for international students unfamiliar with the process and the language. We conducted focus groups and interviews with four research higher degree and 21 Master’s coursework international students at an Australian university to gain their views on the human ethics application process. We found the most important influences on their experience were: the time it took to do an application; support from supervisors, peers and others; their own language skills; (...) and their lack of familiarity with research ethics procedures. To improve the experience of international students undertaking research involving human research ethics applications, we recommend universities provide guidance on institutional ethics review processes, concepts and terminology, with translations in a range of languages, together with guidance on how to conduct research ethically within and outside the students’ own countries. We also recommend curricula be developed to further students’ understanding of the importance of ethical research practice, and that these curricula be embedded in undergraduate and postgraduate degree programs and reflected in course learning outcomes. (shrink)

This study was an exploratory investigation of ethically questionable behaviors among supervisees. Two hundred thirty supervisees and 97 supervisors completed an online survey containing 31 ethically questionable behaviors and 15 possible reasons supervisees engage in ethically questionable behaviors. Ethically questionable behaviors were rated for ethicality, and supervisees reported their relative frequency of personally engaging in the behavior. There was substantial agreement between supervisees and supervisors on the ethicality of the vast majority of ethically questionable behaviors. Reported frequencies among supervisees tended (...) to be low for the behaviors rated to be the most unethical and tended to increase as ethicality ratings increased. A number of possible reasons tended to be endorsed more frequently than others and were correlated with several ethically questionable behaviors. Implications for supervision are discussed. (shrink)

A cross-sectional study to ascertain what the Singapore population would regard as material risk in the anaesthesia consent-taking process and identify demographic factors that predict patient preferences in medical decision-making to tailor a more patient-centered informed consent. A survey was performed involving patients 21 years old and above who attended the pre-operative evaluation clinic over a 1-month period in Singapore General Hospital. Questionnaires were administered to assess patients’ perception of material risks, by trained interviewers. Patients’ demographics were obtained. Mann–Whitney U (...) test and Kruskal-Wallis one-way analysis of variance was used. Statistical significance was taken at p < 0.05. Four hundred fourteen patients were eligible of which 26 refused to participate and 24 were excluded due to language barrier. 364 patients were recruited. A higher level of education, being employed and younger age group are factors identified in patients who wanted greater participation in medical decisions. Gender, marital status, type of surgery, and previous surgical history did not affect their level of participation. The complications most patients knew about were Nausea, Drowsiness and Surgical Wound Pain. Patients ranked Heart Attack, Death and Stroke as the most significant risks that they wanted to be informed about in greater detail. Most patients wanted to make a joint decision with the anaesthetist, instead of letting the doctor decide or deciding for themselves. Discussion with the anaesthetist is the preferred medium of communication compared to reading a pamphlet or watching a video. Age and educational level can influence medical decision-making. Despite the digital age, most patients still prefer a clinic consult instead of audio-visual multimedia for pre-operative anaesthetic counselling. The local population appears to place greater importance on rare but serious complications compared to common complications. This illustrates the need to contextualize information provided during informed consent to strengthen the doctor-patient relationship. (shrink)

This study takes a systemic functional multimodal social semiotic approach to the analysis and discussion of image and text relations in two sets of data. First, patterns of contextualisation of images and text in the online magazines Dabiq and Rumiyah produced by the Islamic extremist organisation which refers to itself as Islamic State are examined. The second data set consists of a sample of texts from Western online news and blog sites which include recontextualisations of images found in the first (...) data set. A sample of examples of the use and re-use of images is discussed in order to identify patterns of similarity and difference when images and text are recontextualised. It is argued that the ISIS material tends to foreground the interpersonal metafunction in combination with the textual metafunction, while the other data set tends to foreground the ideational metafunction. These inferences indicate that further exploration of a larger data set is worth pursuing. Such studies would provide deeper insights helping to distinguish between online material which supports terrorism and that which opposes it, as well as facilitating the further development of multimodal social semiotic approaches to image and text relations. (shrink)

BackgroundPreprint usage is growing rapidly in the life sciences; however, questions remain on the relative quality of preprints when compared to published articles. An objective dimension of quality that is readily measurable is completeness of reporting, as transparency can improve the reader’s ability to independently interpret data and reproduce findings.MethodsIn this observational study, we initially compared independent samples of articles published in bioRxiv and in PubMed-indexed journals in 2016 using a quality of reporting questionnaire. After that, we performed paired comparisons (...) between preprints from bioRxiv to their own peer-reviewed versions in journals.ResultsPeer-reviewed articles had, on average, higher quality of reporting than preprints, although the difference was small, with absolute differences of 5.0% [95% CI 1.4, 8.6] and 4.7% [95% CI 2.4, 7.0] of reported items in the independent samples and paired sample comparison, respectively. There were larger differences favoring peer-reviewed articles in subjective ratings of how clearly titles and abstracts presented the main findings and how easy it was to locate relevant reporting information. Changes in reporting from preprints to peer-reviewed versions did not correlate with the impact factor of the publication venue or with the time lag from bioRxiv to journal publication.ConclusionsOur results suggest that, on average, publication in a peer-reviewed journal is associated with improvement in quality of reporting. They also show that quality of reporting in preprints in the life sciences is within a similar range as that of peer-reviewed articles, albeit slightly lower on average, supporting the idea that preprints should be considered valid scientific contributions. (shrink)

Live donor kidney transplantation is the best treatment option for most patients with late-stage chronic kidney disease; however, the rate of living kidney donation has declined in the United States. A consensus conference was held June 5-6, 2014 to identify best practices and knowledge gaps pertaining to live donor kidney transplantation and living kidney donation. Transplant professionals, patients, and other key stakeholders discussed processes for educating transplant candidates and potential living donors about living kidney donation; efficiencies in the living donor (...) evaluation process; disparities in living donation; and financial and systemic barriers to living donation. We summarize the consensus recommendations for best practices in these educational and clinical domains, future research priorities, and possible public policy initiatives to remove barriers to living kidney donation. (shrink)

Un frammento clinico -/- Lo chiamerò Carlo; ha cinquant’anni, una laurea e buona proprietà di linguaggio; è single, elegante, intelligente, seduttivo, eroinomane. Siamo alla sesta o settima seduta, e non ho ottenuto altro da lui che risposte letterali, e piuttosto banali, alle mie domande; lunghe descrizioni dei suoi molteplici disturbi fisici e altrettanto lunghi silenzi. Eppure di cose da dire ce ne sarebbero parecchie. E’ un brillante dirigente in una industria ingegneristica, ma recentemente lo ha investito un uragano. La sua (...) tossicodipendenza è stata casualmente scoperta sul lavoro ed è stato licenziato in tronco. Nell’arco di pochi mesi ha dovuto vendere il proprio appartamento; benché avesse un ottimo stipendio, Carlo ha infatti accumulato vari debiti, perché l’eroina e le prostitute costano cari. La sua lunga serie di fidanzate, rimpiazzabili al massimo dopo un paio di mesi, si è così rapidamente dileguata. E’ infine tornato a vivere dalla madre e passa il giorno a letto, angosciato da attacchi di panico e somatizzazioni di ogni tipo, tra le quali primeggia l’impotenza. (shrink)