BackgroundInnovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment.MethodsAn interdisciplinary workshop jointly organised by the University of Oxford (...) and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach.ResultsDynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies.ConclusionsDynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures. (shrink)

"Hannah Arendt war der schwierigste Film, den ich je gemacht habe", sagt Margarethe von Trotta. Die grosse Denkerin Hannah Arendt fühlte sich.

Recently, a number of experiments have emphasized the degree to which subjects fail to detect large changes in visual scenes. This finding, referred to as “change blindness,” is often considered surprising because many people have the intuition that such changes should be easy to detect. Levin, Momen, Drivdahl, and Simons documented this intuition by showing that the majority of subjects believe they would notice changes that are actually very rarely detected. Thus subjects exhibit a metacognitive error we refer to as (...) “change blindness blindness.” Here, we test whether CBB is caused by a misestimation of the perceptual experience associated with visual changes and show that it persists even when the pre- and postchange views are separated by long delays. In addition, subjects overestimate their change detection ability both when the relevant changes are illustrated by still pictures, and when they are illustrated using videos showing the changes occurring in real time. We conclude that CBB is a robust phenomenon that cannot be accounted for by failure to understand the specific perceptual experience associated with a change. (shrink)

The emergence of the “4th Industrial Revolution,” i.e. the convergence of artificial intelligence, the Internet of Things, advanced materials, and bioengineering technologies, could accelerate socioeconomic insecurities and anxieties or provide beneficial alternatives to the status quo. In the post-Covid-19 era, the entities that are best positioned to capitalize on these innovations are large firms, which use digital platforms and big data to orchestrate vast ecosystems of users and extract market share across industry sectors. Nonetheless, these technologies also have the potential (...) to democratize ownership, broaden political-economic participation, and reduce environmental harms. We articulate the potential sociotechnical pathways in this high-stakes crossroads by analyzing cellular agriculture, an exemplary 4th Industrial Revolution technology that synergizes computer science, biopharma, tissue engineering, and food science to grow cultured meat, dairy, and egg products from cultured cells and/or genetically modified yeast. Our exploration of this space involved multi-sited ethnographic research in both the cellular agriculture community and alternative economic organizations devoted to open source licensing, member-owned cooperatives, social financing, and platform business models. Upon discussing how these latter approaches could potentially facilitate alternative sociotechnical pathways in cellular agriculture, we reflect upon the broader implications of this work with respect to the 4th Industrial Revolution and the enduring need for public policy reform. (shrink)

This research explored the ethical issues that nurses reported in the process of elaboration and further disclosure after an initial diagnosis of a terminal illness had been given. One hundred and six hospice nurses in Norway and Denmark completed a questionnaire containing 45 items of forced-choice and open-ended questions. This questionnaire was tested and used in three countries prior to this study; for this research it was tested on Danish and Norwegian nurses. All respondents supported the ethics of ongoing disclosure (...) to terminally ill patients based on ethical principles embedded in their country’s Patients’ Rights Acts. Truth, as an intrinsic value, proved foundational to patient autonomy, the most frequent ethical principle these nurses reported to justify their ethical position on information disclosure to terminally ill people. Telling the truth about a diagnosis was not the end of ethics in hospice care, but rather the beginning because what occurs ethically in dealing with prognosis issues became central to these hospice nurses, the patients and their families. Coupled with truth-telling, compassionate interaction and care become extensions of patients’ rights. (shrink)

Although there is a growing acknowledgement of the potential of a more nuanced healthcare paradigm and practice, the discourses of health promotion—and with that nursing and other healthcare professionals’ practice—still tend to focus on the medical diagnosis, disease and the rationale of biomedicine. There is a need for shifting to a human practice that draws on a broader perspective related to illness. This requires a transformation of practices which can be constructed within a narrative understanding. A narrative approach appreciates the (...) importance of emotion and intersubjective relation in the telling and listening that occur in the clinical encounter. The essence of nursing lies in the creative imagination, the sensitive spirit and the intelligent understanding of the individuals’ possibilities of becoming empowered in his or her own life. This entails that the focus of the use of patients’ narratives is, ultimately, not the story itself, but the nurses’ and other healthcare professionals’ ability to support the patients in finding useful meaning in their stories. Herein, it is of particular importance to let the patients narrate about what is sparkling moments or events in the lived life. Stories with such focus can open up for patients’ hopes and dreams, which gives inspiration for finding meaningful ways to cope in life empowering personal recovery. It is, therefore, crucial to transform clinical settings into places that acknowledge the need for imagination and creativity, aiming at creating the opportunity for sensibility and vision essential to encouraging a narrative approach and thereby the ability to reflect upon and promote a healing process. (shrink)

The goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient. Surveys were statistically analysed by comparing physicians’ and parents’ perspectives and by evaluating factors associated with children’s actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children. Results indicate that for six aspects of information provision (...) examined, parents’ and physicians’ perceptions differed. Moreover, parents felt that the children were more competent to understand diagnosis and prognosis, assessed the disease of the children as worse, and reported higher satisfaction with decision-making on the part of the children. A patient’s age and gender predicted involvement. Older children and girls were more likely to be involved. In the decision-making process, parents held a less active role than they actually wanted. Physicians should take measures to ensure that provided information is understood correctly. Furthermore, they should work towards creating awareness for systematic differences between parents and physicians with respect to the perception of the child, the disease, and shared decision-making. (shrink)

Epigenetic and transcriptional variability contribute to the vast diversity of cellular and organismal phenotypes and are key in human health and disease. In this review, we describe different types, sources, and determinants of epigenetic and transcriptional variability, enabling cells and organisms to adapt and evolve to a changing environment. We highlight the latest research and hypotheses on how chromatin structure and the epigenome influence gene expression variability. Further, we provide an overview of challenges in the analysis of biological variability. An (...) improved understanding of the molecular mechanisms underlying epigenetic and transcriptional variability, at both the intra- and inter-individual level, provides great opportunity for disease prevention, better therapeutic approaches, and personalized medicine. Epigenetic and transcriptional variability mediate phenotypic plasticity, enabling adaptation to changing environments. In this review, we describe the sources of inter- and intra-individual variability and discuss epigenetic regulators of gene expression variability, including DNA methylation and chromatin structure. Understanding these molecular mechanisms will improve therapeutic approaches and personalized medicine. (shrink)

Understanding the functional mechanisms underlying genetic signals associated with complex traits and common diseases, such as cancer, diabetes and Alzheimer's disease, is a formidable challenge. Many genetic signals discovered through genome‐wide association studies map to non‐protein coding sequences, where their molecular consequences are difficult to evaluate. This article summarizes concepts for the systematic interpretation of non‐coding genetic signals using genome annotation data sets in different cellular systems. We outline strategies for the global analysis of multiple association intervals and the in‐depth (...) molecular investigation of individual intervals. We highlight experimental techniques to validate candidate (potential causal) regulatory variants, with a focus on novel genome‐editing techniques including CRISPR/Cas9. These approaches are also applicable to low‐frequency and rare variants, which have become increasingly important in genomic studies of complex traits and diseases. There is a pressing need to translate genetic signals into biological mechanisms, leading to prognostic, diagnostic and therapeutic advances. (shrink)

Die Protestbewegungen und gesellschaftlichen Umwälzungen unserer Zeit haben dazu beigetragen, das Interesse an den antiken Kynikern und ihrer Lehre von der Umwertung aller Werte neu zu wecken. Geprägt durch Diogenes von Sinope und Krates von Theben, seinen markantesten Vertretern, war der Kynismus zu einem wichtigen Bestandteil der griechischrömanischen Popularphilosophie geworden. Zweck dieses Sammelbandes ist es, durch Wiederabdruck wegweisender Beiträge zu Persönlichkeiten, Aspekten und einzelnen Begriffen dieser geistigen Bewegung sowie durch eine kritische Einleitung und eine ausführliche Bibliographie einen Überblick über 150 (...) Jahre Kynikerforschung zu geben, die seit Eduard Zellers griechischer Philosophiegeschichte bemüht war aufzuzeigen, wie nachhaltig kynisches Gedankengut bis ins ausgehende Altertum die Literatur beeinfluîte und selbst bei frühchristlichen Autoren seine deutlichen Spuren hinterließ. (shrink)

Background: Why nurses remain in the profession is a complex question. However, strong values can be grounds for their remaining, meaning nurses evaluate the qualitative worth of different desires and distinguish between senses of what is a good life. Research question: The overall aim is to explore and argue the relevance of strong evaluations for remaining in the nursing profession. Research design: This theoretical article based on a hermeneutical approach introduces the concept strong evaluations as described by the Canadian philosopher (...) Charles Taylor and provides examples of nurses’ experiences in everyday nursing care drawn from a Norwegian empirical study. Participants and research context: Data collected in the original study consisted of qualitative interviews and qualitative follow-up interviews with 13 nurses. The research context was the primary and secondary somatic and psychiatric health service, inside as well as outside institutions. Ethical consideration: The article uses data from an original empirical study approved by the Norwegian Social Science Data Services. Information was given and consent obtained from the participants. Findings: Remaining in the nursing profession can be understood as revolving around being a strong evaluator. This has been concretized in issues of being aware of different incidents in life and having capacities as a nurse. Discussion: Why nurses remain is discussed in relation to how nurses have shaped themselves by reflecting on what is of significance in their life. However, being a strong evaluator cannot be seen as the casual condition for remaining. Conclusion: Remaining in the nursing profession is obviously not a contingent matter, rather it is a matter concerned with the qualitative worth of different desires and values. Nurses’ awareness of a life choice impacts on whether they remain or not. Consequently, nurses may need to articulate and reflect on their priorities for remaining. (shrink)

Background: The relationship between the nurse and the patient is understood as fundamental in nursing care. However, numerous challenges can be related to the provision of relationship-based nursing care. Challenges exist when nurses do not respond adequately to the patient’s appeal for help. Moreover, challenges arising in the nurse–patient relationship can be understood as more destructive demands from the patient to the nurse, thus begging inquiry into such a relationship. Research question: The overall aim is to explore and argue the (...) relevance of problematizing destructive demands evident within relationship-based nursing care. Research design: This theoretical article explores destructive demands based on the phenomenological philosophy of the Danish theologian and philosopher Knud E. Løgstrup and provides examples of nurses’ experiences in everyday nursing care. The examples are drawn from a Norwegian empirical study based on a hermeneutical research design. Participants and research context: Data consisted of qualitative interviews and qualitative follow-up interviews with 13 nurses with varying work experience within the primary and secondary somatic and psychiatric health service, from inside as well as outside institutions. Ethical consideration: The original empirical study was approved by the Norwegian Social Science Data Services. Information was given and consent was obtained from the participants. Findings: Two themes are described: strong impressions formed in meetings with patients and persistent concern over the burden of work and ability to endure. Discussion: Destructive demands related to relationship-based nursing care are discussed along two lines, first, by further elucidating nurses’ everyday experiences connected to destructive demands and, second, by highlighting the significance of including destructive demands within the relationship-based nursing care. Conclusion: Including destructive demands related to relationship-based nursing care is of particular significance in enabling the proposition that radical, one-sided demands are based on relationality, reciprocity and thereby expectations of life. In short, both the nurse and the patient are human beings in need of love and goodness. (shrink)

À une époque où l'on constate la présence massive des femmes dans le monde public, féminisant la culture, Yvonne Knibiehler lance son défi provocant : comment les femmes peuvent-t-elles contribuer à faire avancer la réflexion sur les questions de la sexualité, notamment en ce qui concerne les relations entre les sexes et l'éducation sexuelle des jeunes, alors que la fête libératrice de la Révolution sexuelle est finie? Comment construire au présent une éducation des jeunes à la sexual...

When analysing and evaluating discourse, the discourse itself, the speech event and the activity type it represents, forces the analyst to search for a theoretical and methodological framework which is suitable for analysing the activity exposed in the data. Interactive political argumentation demands both a theory of argumentation and a theory of spoken language to fully grasp what is going on in the discourse. The pragma-dialectical argumentation theory offers both analytical and evaluative tools, but rests upon a reconstruction of the (...) argumentative discourse which is hierarchical and static. If applied to interactive argumentation this kind of reconstruction will not reveal interactive aspects of the parties' argumentation. On the other hand, conversation analysis, which concentrates on interactive aspects of the discourse, does not offer a tool for the evaluation of the quality of each party's argumentation. (shrink)

Background: It is obvious from literature within the nursing discipline that nursing is related to moral or moral–philosophical related ideas which are other-oriented. The socio-cultural process of change in modern society implies that more self-oriented ideas have been found to be significant. Aim: The overall aim of this article is to highlight self-oriented moral or moral–philosophical related ideas as an important part of the nursing discipline. This is achieved by (a) exploring self-realization as a significant self-oriented moral or moral–philosophical related (...) idea based on a philosophical anthropological perspective, (b) demonstrating how moral or moral–philosophical related ideas are expressed by nurses, (c) discussing the relevance of self-realization for the nursing discipline, and (d) pointing out possible consequences for the future development of the discipline of nursing. Research design: This theoretical study draws empirical examples from interviews. Participants and research context: Data consisted of interviews with 13 nurses with varying work experience within the primary and secondary somatic and psychiatric health service, from inside as well as outside institutions. Ethical considerations: The empirical study was approved by the Norwegian Social Science Data Services. Information was given and consent was obtained from the study participants. Findings: Findings are presented in two themes: (a) other-oriented ideas and (b) self-oriented ideas. More concretely, the findings show that nurses hope to make life as good as possible for the patient and they have a wish to improve themselves as human beings, to become better persons. Discussion: The relevance of self-realization for the nursing discipline is discussed along two lines, first, by connecting nurses’ self-understanding to a horizon of identity and second, by considering what self-realization could offer. Conclusion: It is of ultimate concern for the nursing discipline to highlight self-realization connected to the positive view of freedom understood as an exercise-concept. Further identifying and articulating the contribution of self-realization to nurses and nursing practice is of particular importance. (shrink)

A sense of agency over wilful actions is thought to be dependent on the level of choice and the nature of the outcome. In a preregistered study, we manipulated choice and valence of outcome to assess the relationship between SoA across the depression and psychosis continuum. Participants completed a Libet Clock task, in which they had either a free or forced choice to press one of two buttons and received either a rewarding or punishing outcome. Participants also completed questionnaires on (...) depressive and psychosis-like traits. Rewarding outcomes increased intentional binding. The evidence favoured no effect of choice on average, but this was influenced by inter-individual differences. Individuals reporting more depressive traits had less of a difference in intentional binding between free and forced choice conditions. We show that implicit SoA is sensitive to outcome valence and the effect of choice differs across the depression continuum. (shrink)

Background: This article describes the overall attitudes of children, their parents, and attending physicians toward including or excluding pediatric patients in medical communication and health care decision-making processes. Methods: Fifty-two interviews were carried out with pediatric patients (n = 17), their parents (n = 19), and attending oncologists (n = 16) in eight Swiss pediatric oncology centers. The interviews were analyzed using thematic coding. Results: Parenting styles, the child's personality, and maturity are factors that have a great impact upon the (...) inclusion of children in their health care processes. Children reported the desire to be heard and involved, but they did not want to dominate the decision-making process. Ensuring trust in the parent–child and physician–patient relationships and respecting the child as the affected person were important values determining children's involvement. These two considerations were closely connected with the concern that fantasies are often worse than reality. Seeking children's compliance with treatment was a practical but critical reason for informing them about their health care. The urge to protect them from upsetting news sometimes resulted in their (partial) exclusion. Conclusions: The ethical imperative for inclusion of children in their health care choices was not so much determined by the right for self-determination, but by the need to include them. If children are excluded, they imagine things, become more isolated, and are left alone with their fears. Nevertheless, the urge to protect children is innate, as adults often underestimate children's coping capacities. (shrink)

I sit on the edge of the bed of my youngest daughter and read the fairy tale of the Three Billy Goats Gruff. My little four-year-old daughter has heard this story thousands of times and simply loves it. In my eagerness to create a good story and a good setting I add some personal description to the story. Then she who is thrilled with the story makes a strange face and corrects my telling: “No, mama, it is not like that. (...) You have to tell the truth”. Indo-Pacific Journal of Phenomenology , Volume 11, Edition 1 May 2011, 59-67. (shrink)

Transhumance is a form of extensive livestock production that involves seasonal movements among ecological zones or landscape types. Rangeland-based transhumance constitutes an important social and economic relationship to nature in many regions of the world, including across the Western US. However, social and ecological drivers of change are reshaping transhumant practices, and managers must adapt to increased demands for public rangeland use. Specifically, concerns for wildlife conservation have led to reduced access to seasonal public lands grazing for western US livestock (...) producers. To understand how managers adapt to loss of grazing areas (called “seasonal ranges”) we create agroecological calendars from manager records spanning 35 years (1986–2021) at the US Sheep Experiment Station in Idaho and Montana, US. The calendars illustrate how a loss of winter and summer ranges after 2013 coincided with shifts in the operation’s adaptive strategies, leading to more grazing of fall crop residue and purchased winter feed, and reducing flexibility to move livestock to cope with variable forage conditions. These changes shifted the job duties and experiences of farm workers and managers, and raised several new questions related to sheep production and vegetation management outcomes that merit future research. Transhumant system transformation has implications for human relationships with nature, rural communities, sheep genetics, production, and vegetation communities. For livestock operations that rely on government-managed lands to sustain transhumant traditions, innovative forms of collaboration and social adaptation that help secure access to seasonal ranges will be as important as technological innovations to address biodiversity conservation, climate change adaptation, and food system sustainability issues that are reshaping access to grazing lands. (shrink)

Predictability is a prerequisite for effective human control of artificial intelligence (AI). The inability to predict malfunctioning of AI, for example, impedes timely human intervention. In this paper, we empirically investigate how AI’s predictability compares to the predictability of humans in a real-effort task. We show that humans are worse at predicting AI performance than at predicting human performance. Importantly, participants are not aware of the differences in relative predictability of AI and overestimate their prediction skills. These results raise doubts (...) about the human ability to effectively exercise control of AI — at least in certain contexts. (shrink)

A comprehensive collection of essays by the philosopher Lewis White Beck.

Objectives: To foster the development of a privacy-protective, sustainable cross-border information system in the framework of a European public health project. Materials and methods: A targeted privacy impact assessment was implemented to identify the best architecture for a European information system for diabetes directly tapping into clinical registries. Four steps were used to provide input to software designers and developers: a structured literature search, analysis of data flow scenarios or options, creation of an ad hoc questionnaire and conduction of a (...) Delphi procedure. Results: The literature search identified a core set of relevant papers on privacy. Technicians envisaged three candidate system architectures, with associated data flows, to source an information flow questionnaire that was submitted to the Delphi panel for the selection of the best architecture. A detailed scheme envisaging an “aggregation by group of patients” was finally chosen, based upon the exchange of finely tuned summary tables. Conclusions: Public health information systems should be carefully engineered only after a clear strategy for privacy protection has been planned, to avoid breaching current regulations and future concerns and to optimise the development of statistical routines. The BIRO project delivers a specific method of privacy impact assessment that can be conveniently used in similar situations across Europe. (shrink)

Empirical discussions of mental representation appeal to a wide variety of representational kinds. Some of these kinds, such as the sentential representations underlying language use and the pictorial representations of visual imagery, are thoroughly familiar to philosophers. Others have received almost no philosophical attention at all. Included in this latter category are analogue magnitude representations, which enable a wide range of organisms to primitively represent spatial, temporal, numerical, and related magnitudes. This article aims to introduce analogue magnitude representations to a (...) philosophical audience by rehearsing empirical evidence for their existence and analysing their format, their content, and the computations they support. 1 Background1.1 Evidence of analogue magnitude representations1.2 Weber’s law1.3 Scepticism about analogue magnitude representations2 Format2.1 Carey’s analogy2.2 Neural realization2.3 Analogue representation2.4 Analogue magnitude representation components3 Content3.1 Do analogue magnitude representations have representational content?3.2 What do analogue magnitude representations represent?3.3 What content types do analogue magnitude representations have?4 Computations4.1 Arithmetic computation4.2 Practical deliberation5 Conclusion. (shrink)

A partir de um personagem conceitual, a cartógrafa, as autoras descrevem e analisam os encontros promovidos por uma intervenção institucional realizada com a equipe de trabalhadores da Emergência de um hospital de grande porte de Porto Alegre. Utilizando o conceito de atenção ao presente, a interven..

Objective: There is a demonstrated link between the mental health and substance use comorbidities experienced by young adults, however the vast majority of psychological interventions are disorder specific. Novel psychological approaches that adequately acknowledge the psychosocial complexity and transdiagnostic needs of vulnerable young people are urgently needed. A modular skills-based program for emotion regulation and impulse control addresses this gap. The current one armed open trial was designed to evaluate the impact that 12 weeks exposure to ERIC alongside usual care (...) had on young people's ability to regulate emotions, as well as examine potential moderating mechanisms.Methods: Seventy nine young people were enrolled to the 12 week intervention period. Twenty one practitioners from youth and community health services delivered relevant ERIC modules adjunct to usual care. Linear mixed effects regression was used to examine change over time across the primary outcome of emotion dysregulation and secondary outcomes of depression, anxiety, stress, experiential avoidance and mindfulness. Moderation analyses were conducted to test whether the magnitude of change in emotion dysregulation moderated change over time in secondary outcomes.Results: Analyses revealed significant improvement in the primary outcome of emotion dysregulation with a moderate effect size, in addition to decreases in the secondary outcomes of depression, anxiety, stress and experiential avoidance. No improvements in mindfulness were reported. Moderation analyses revealed that the residualised change over time in emotion dysregulation moderated the change over time in symptoms of distress, depression, anxiety, stress, experiential avoidance, and mindfulness.Conclusion: Reductions in the severity of emotion dysregulation, depression, anxiety, stress and experiential avoidance are promising, and were evident despite the complexity of the participants and the diversity of the service setting. The improvements found in each outcome were only observed for those young people whose emotion regulation also improved, providing preliminary evidence for the role of emotion regulation as a key treatment target in this population. (shrink)