Rare Disease research has seen tremendous advancements over the last decades, with the development of new technologies, various global collaborative efforts and improved data sharing. To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational needs of participants, and to ensure proper ethical and legal use of data sources and participants’ overall protection. A global Task Force (...) was set up to develop model consent clauses specific to rare diseases research, that are comprehensive, harmonized, readily accessible, and internationally applicable, facilitating the recruitment and consent of rare disease research participants around the world. Existing consent forms and notices of consent were analyzed and classified under different consent themes, which were used as background to develop the model consent clauses. The IRDiRC-GA4GH MCC Task Force met in September 2018, to discuss and design model consent clauses. Based on analyzed consent forms, they listed generic core elements and designed the following rare disease research specific core elements; Rare Disease Research Introductory Clause, Familial Participation, Audio/Visual Imaging, Collecting, storing, sharing of rare disease data, Recontact for matching, Data Linkage, Return of Results to Family Members, Incapacity/Death, and Benefits. The model consent clauses presented in this article have been drafted to highlight consent elements that bear in mind the trends in rare disease research, while providing a tool to help foster harmonization and collaborative efforts. (shrink)

Nursing work increasingly demands forms of expertise that complement specialist knowledge. In child and family nursing, this need arises when nurses work in partnership with parents of young children at risk. Partnership means working with parents in respectful, negotiated and empowering ways. Existing partnership literature emphasises communicative and relational skills, but this paper focuses on nurses’ capacities to facilitate parents’ learning. Referring to data from home visiting, day‐stay and specialist toddler clinic services in Sydney, a pedagogical framework is presented. Analysis (...) shows how nurses notice aspects of children, parents and parent–child interactions as a catalyst for building on parents’ strengths, enhancing guided chance or challenging unhelpful constructs. Prior research shows the latter can be a sticking point in partnership, but this paper reveals diverse ways in which challenges are folded into learning process that position parents as agents of positive change. Noticing is dependent on embodied and communicative expertise, conceptualised in terms of sensory and reported channels. The framework offers a new view of partnership as mind‐expanding for the parent and specifies the nurse's role in facilitating this process. (shrink)

This white paper outlines the plans of the History Philosophy Culture Working Group of the Next Generation Event Horizon Telescope Collaboration.

A major challenge for research in artificial intelligence is to develop systems that can infer the goals, beliefs, and intentions of others (i.e., systems that have theory of mind, ToM). In this research, we propose a cognitive ToM framework that uses a well-known theory of decisions from experience to construct a computational representation of ToM. Instance-based learning theory (IBLT) is used to construct a cognitive model that generates ToM from the observation of other agents' behavior. The IBL model of the (...) observer distinguishes itself from previous models of ToM that make unreasonable assumptions about human cognition, are hand-crafted for particular settings, complex, or unable to explain a cognitive development of ToM compared to human's ToM. The IBL model learns from the observation of goal-directed agents' behavior in a gridworld navigation task, and it infers and predicts the behaviors of the agents in new gridworlds across different degrees of decision complexity in similar ways to the way human observers do. We provide evidence for the alignment of the IBL observer's predictions under various levels of decision complexity. We also advance the demonstration of the IBL predictions using a classic test of false beliefs (the Sally–Anne test), which is commonly used to test ToM in humans. We discuss our results and the potential of the IBL observer model to improve human–machine interactions. (shrink)

The implementation of an artificial neural network for predicting induction heating region locations is proposed in this research. Steel plate deformations during the induction heating process are produced using an analytical solution derived from electromagnetic and plate theory. The plate transform following vertical displacements in each divided area was used as input of neural following desired shape of the steel plate and the specified heating areas for induction treatment as output parameters to predict and evaluate the model. A dataset used (...) 90% for training and remaining 10% for testing to implement on the efficient models when changing hidden layer and its neurons relatively. The trial and error for analyzing and predicting heating-affected regions with the ANNs model reached the high average accuracy and lowest mean square error at 98.08% and 0.00913, respectively. Consequently, the feasibility test indicates that the developed approach may be well utilized to identify the heating positions by grid area in order to achieve the desired plate deformation. Moreover, the analysis of vertical displacement during induction heating and its response behaviour of steel plate based on thermo-mechanical are also addressed. (shrink)

This study aims to predict the shear strength of reinforced concrete deep beams based on artificial neural network using four training algorithms, namely, Levenberg–Marquardt, quasi-Newton method, conjugate gradient, and gradient descent. A database containing 106 results of RC deep beam shear strength tests is collected and used to investigate the performance of the four proposed algorithms. The ANN training phase uses 70% of data, randomly taken from the collected dataset, whereas the remaining 30% of data are used for the algorithms’ (...) evaluation process. The ANN structure consists of an input layer with 9 neurons corresponding to 9 input parameters, a hidden layer of 10 neurons, and an output layer with 1 neuron representing the shear strength of RC deep beams. The performance evaluation of the models is performed using statistical criteria, including the correlation coefficient, root mean square error, mean absolute error, and mean absolute percentage error. The results show that the ANN-CG model has the best prediction performance with R = 0.992, RMSE = 14.02, MAE = 14.24, and MAPE = 6.84. The results of this study show that the ANN-CG model can accurately predict the shear strength of RC deep beams, representing a promising and useful alternative design solution for structural engineers. (shrink)

The aim of this paper is to question the significance of Derrida's deconstruction of the concepts of subject and history. While ‘postmodernity’ tends to be characterized by philosophical critique as the ‘liquidation of the subject’ or the ‘end of history’, I attempt to show that Derrida's deconstruction of ‘subjectivity’ and ‘historicity’ is not an elimination or destruction of these concepts, but an attempt to transform them in order to free them from their metaphysical-teleological presuppositions. This paper argues that this transformation, (...) which begins in Derrida's and continues in Stiegler's texts, leads to the notions of ‘psycho-social individuation’ and ‘doubly epokhal redoubling’. I maintain that such notions ‘supplement’ the metaphysical concepts of subject and history by forcing a reconsideration of the technical conditions of psychic individuation and the technological conditions of ‘epochality’. (shrink)

Dignified care is a central issue in the nursing care of older adults. Nurses are expected to treat older adults with dignity, and older adults wish to be treated in a dignified manner. Researchers have recommended investigating the concept of dignity based on specific contexts and population groups. This meta-synthesis study aims to explore the understandings of dignity from the perspective of older adults in the Nordic countries. Synthesising findings from qualitative studies on older adults’ experiences of dignity has provided (...) important insight into what can be essential for dignified care in a Nordic context. The importance of visibility and recognition for the experience of dignity is an overarching theme in all the studies. The participants’ descriptions mostly implicated an existence dominated by a lack of recognition. The older adults do not feel valued as people or for their contribution to society and strive to tone down their illnesses in an attempt to become more visible and acknowledged as people. Toning down their illnesses and masking their needs can protect their independence. At the same time, becoming less visible can leave them without a voice. The metaphorical phrase protected and exposed by a cloak of invisibility is used to express the authors’ overall interpretation of the findings. Lack of recognition and being socially invisible is a genuine threat to older adults’ dignity. (shrink)

The idea that states and the international community have a responsibility to protect populations at risk has framed internationalist debates about conflict prevention, humanitarian aid, peacekeeping and territorial administration since 2001. This book situates the responsibility to protect concept in a broad historical and jurisprudential context, demonstrating that the appeal to protection as the basis for de facto authority has emerged at times of civil war or revolution - the Protestant revolutions of early modern Europe, the bourgeois and communist revolutions (...) of the following centuries and the revolution that is decolonisation. This analysis, from Hobbes to the UN, of the resulting attempts to ground authority on the capacity to guarantee security and protection is essential reading for all those seeking to understand, engage with, limit or critique the expansive practices of international executive action authorised by the responsibility to protect concept. (shrink)

This paper assesses great apes’ abilities for pantomime and action imitation, two communicative abilities proposed as key contributors to language evolution. Modern great apes, the only surviving nonhuman hominids, are important living models of the communicative platform upon which language evolved. This assessment is based on 62 great ape pantomimes identified via data mining plus published reports of great ape action imitation. Most pantomimes were simple, imperative, and scaffolded by partners’ relationship and scripts; some resemble declaratives, some were sequences of (...) several inter-related elements. Imitation research consistently shows great apes perform action imitation at low fidelity, but also that action imitation may not represent a distinct process or function. Discussion focuses on how findings may advance reconstruction of the evolution of language, including what great apes may contribute to understanding ‘primitive’ forms of pantomime and imitation and how to improve their study. (shrink)

Background Interest in strengthening residents’ autonomy in nursing homes is intensifying and professional caregivers’ experience ethical dilemmas when the principles of beneficence and autonomy conflict. This increased focus requires expanded knowledge of how residents experience decision-making in nursing homes and how being subject to paternalism affects residents’ dignity. Research question/aim This study explored how residents experience paternalism in nursing homes. Research design This study involved a qualitative interpretive design with participant observations and semi-structured interviews. The interpretations were informed by Gadamer’s (...) hermeneutics. Participants and research context Eleven residents were interviewed after a period of participant observation in two nursing homes. Ethical considerations The study was performed in accordance with the Helsinki declaration. The Regional Ethics Committee (REK) permitted the researcher to perform participant observation in the nursing homes. The use of audio recordings of interviews was registered and supervised by Sikt - Norwegian Agency for Shared Services in Education and Research. The resident’s consent was assessed continuously. Three interviews were terminated for ethical reasons. Findings The resident interviews revealed that residents found it obvious for caregivers to possess the decision-making authority in nursing homes. When residents explained their views, three main themes emerged: (1) To be included even though caregivers make the decisions, (2) Surrender to dependency, and (3) Adherence to nursing home norms. Conclusions Residents submit to their caregivers and give caregivers the responsibility and function as leaders. Paternalism was experienced as dignifying in situations where it contributed to residents being able to live according to second order desires and values, and when it implied respect and appraisal of residents’ capabilities. Paternalism was experienced as debasing when residents felt left out, and when residents felt that their capabilities were underestimated. This also included their capability to withstand paternalistic influence. (shrink)

Translational research is a buzzword which dominates discussions about the quality, the utilization, and the benefits of medical research. Yet, although translational research has become a prominent topic, no commonly agreed definition of this terminology exists. Instead, experts from different contexts such as biomedical research, clinical practice or nursing discuss translational research in multiple ways depending on how they define the problem that translational research is supposed to be the solution to. In this paper, we do not seek to find (...) a ‘correct’ definition of translational research, but instead ask how actors using this terminology for describing their own research make sense of it. To do so, we asked three questions: Which actors are engaged in the debate about translational research? What kind of different meanings of translational research exist? And, which actors refer to which meaning of translational research when using the term? In answering these questions, we highlight the role this terminology plays in defining what medical science is about today. (shrink)

Background: Empathy and moral courage are important virtues in nursing and nursing ethics. Hence, it is of great importance that nursing students and nurses develop their ability to empathize and their willingness to demonstrate moral courage. Research aim: The aim of this article is to explore third-year undergraduate nursing students’ perceptions and experiences in developing empathy and moral courage. Research design: This study employed a longitudinal qualitative design based on individual interviews. Participants and research context: Seven undergraduate nursing students were (...) interviewed during or immediately following their final clinical placement. Ethical considerations: The Norwegian Social Science Data Services (NSD) approved the study. Participants were informed that their participation was voluntary and were assured confidentiality. They were informed that they could withdraw from the study at any time, without providing reasons. Findings: Affective empathy seemed to be strong among third-year undergraduate nursing students. However, they tried to handle the situations in a ‘professional’ way, and to balance their emotions. At the same time, they expressed how difficult it can be to show moral courage when confronted with poor patient care. In addition, they spoke about a lack of role models during clinical practice and supervision. Conclusions: Undergraduate nursing students are in a vulnerable position throughout their journey to become professional and to develop empathy and moral courage. The professional socialisation and forming of professional empathy and moral courage among nursing students, may be seen as a complex interaction of formal and hidden curriculum, where role models play an important role. We argue that the main theme ‘Vulnerable students – a journey towards professional empathy and moral courage’ may cover the longitudinal project as a whole. This vulnerability is something both teachers and supervisors should be aware of when following up with students in their clinical placements. (shrink)

While there is considerable support for integrating ethics education in accounting curricula, research presents conflicting evidence on how best to incorporate it. A review of accounting ethics scholarship highlights criticisms of the literature, including limited research into actual behavior and a lack of theory. We report the results of a study that is theory based, captures behaviors rather than attitudes, and explores the effect of repeated practice to develop voice efficacy. We examine the impact of two types of ethics instructions. (...) Across four classes in an accounting curriculum, one student cohort participated in traditional ethics instruction, while the other cohort participated in Giving Voice To Values instruction. We collected student responses to an ethical challenge and conduct a between-subject analysis. The results reveal consistent unethical behavior in the traditional cohort but not in the GVV cohort, indicating that faculty should consider the use of this pedagogy in accounting ethics education. (shrink)

PstS and DING proteins are members of a superfamily of secreted, high‐affinity phosphate‐binding proteins. Whereas microbial PstS have a well‐defined role in phosphate ABC transporters, the physiological function of DING proteins, named after their DINGGG N termini, still needs to be determined. PstS and DING proteins co‐exist in some Pseudomonas strains, to which they confer a highly adhesive and virulent phenotype. More than 30 DING proteins have now been purified, mostly from eukaryotes. They are often associated with infections or with (...) dysregulation of cell proliferation. Consequently, eukaryotic DING proteins could also be involved in cell–cell communication or adherence. The ubiquitous presence in eukaryotes of proteins structurally and functionally related to bacterial virulence factors is intriguing, as is the absence of eukaryotic genes encoding DING proteins in databases. DING proteins in eukaryotes could originate from unidentified commensal or symbiotic bacteria and could contribute to essential functions. Alternatively, DING proteins could be encoded by eukaryotic genes sharing special features that prevent their cloning. Both hypotheses are discussed. (shrink)

Two experiments were run to demonstrate the presence of a partial reinforcement extinction effect (PREE) and a partial punishment effect (PPE) 4 weeks after training in a 1-trial/day procedure. In the PREE paradigm, two groups of animals were trained to run a straight alley for food reward; one group was rewarded on every trial (CRF), whereas the other was rewarded on only 50% of the trials (PRF). In the test phase, extinction, no reward was present on any trial. Four weeks (...) after the end of acquisition, and subsequent to 7 days of CRF retraining, PRF animals showed greater resistance to extinction than did their CRF controls. The PPE paradigm resembled the PREE paradigm in all aspects, except that mild electric foot shock, together with the food reward, was used instead of nonreward on 50% of the acquisition trials. In the test phase, all animals were shocked and given a food reward on every trial. Four weeks after the end of acquisition and retraining, the animals with previous experience of shock in acquisition showed greater resistance to punishment than did their controls. (shrink)

This paper derives from an exploration of the ways in which the letters of Holocaust writer Etty Hillesum, which are seemingly resistant to many of the interests of current trauma theory, can be read in relation to contemporary writing on testimonial. In particular, the three theorists I shall discuss here, Derrida, Caruth and Irigaray, directly address Freud's Beyond the Pleasure Principle, a central text in the current refiguring of trauma. This paper traces the ways in which Hillesum's letters can be (...) read across the theoretical accounts. An interpretation of Hillesum's writing emerges in which the conventional emphasis on the mystical aspect of her texts is reinterpreted in terms of Caruth's emphasis on the life drive. Viewed as forging a creative language of departure, Hillesum's letters are situated in a central relation to the most recent developments in the theoretical discourse around testimony. (shrink)

Background: The professional values presented in ethical guidelines of the Norwegian Nurses Organisation and International Council of Nurses describe nurses’ professional ethics and the obligations that pertain to good nursing practice. The foundation of all nursing shall be respect for life and the inherent dignity of the individual. Research proposes that nurses lack insight in ethical competence and that ethical issues are rarely discussed on the wards. Furthermore, research has for some time confirmed that nurses experience moral distress in their (...) daily work and that this has become a major problem for the nursing profession. Objectives: The purpose of this article is to obtain a deeper understanding of the ethical challenges that nurses face in daily practice. The chosen research questions are “What ethical challenges do nurses experience in their daily practice?” Research design: We conducted a qualitative interview study using a hermeneutical approach to analyzing data describing nurses’ experiences. Ethical considerations: The Norwegian Social Science Data services approved the study. Furthermore, the head of the hospital gave permission to conduct the investigation. The requirement of anonymity and proper data storage in accordance with the World Medical Association Declaration of Helsinki was met. Method and results: The context for the study comprised three different clinical wards at a university hospital in Norway. Nine qualified nurses were interviewed. The results were obtained through a systematic development beginning with the discovery of busyness as a painful phenomenon that can lead to conflicts in terms of ethical values. Furthermore, the consequences compromising professional principles in nursing care emerged and ended in moral blindness and emotional immunization of the healthcare providers. Emotional immunization occurred as a new dimension involving moral blindness and immunity in relation to being emotionally touched. (shrink)

This account of the good will has struck many readers as counterintuitive. Whereas Kant seems to think that the person in whom a sense of duty must overcome indifference or contrary inclination can and does display a good will, our intuitions about human goodness suggest that there is something deficient or lacking in the grudging agent. Aristotle, for example, would think that the grudging moralist displays continence, rather than virtue, because he thinks it is the mark of the virtuous person (...) that he does not experience a conflict between the rational and nonrational parts of the soul and that his emotions and appetites harmonize with rational judgments. (shrink)

The contemporary global language “extinction crisis” has been analyzed by several influential linguists using concepts from ecology. In this article we study different reaction-diffusion models to explain the dynamics of language competition. We are mainly interested in situations where one language has a status advantage compared with the other. We consider previous applications of competition models from ecology, with particular attention to the implications of the “carrying capacity” term in such models. We derive existence as well as stability conditions for (...) the equilibria of the models considered, and show that depending on environmental conditions both situations—coexistence of competing languages or extinction of the less advantageous language—are possible. (shrink)

Reading difficulties that are not addressed at the primary level continue to exist at the secondary level with serious consequences. Thus, it is important to provide struggling students with specific reading support. In particular, many students with learning disabilities and emotional behavioral disorders demonstrate reading obstacles and are at risk for motivation loss. A multiple baseline design was used to evaluate the effects of a motivational reading racetrack as peer-tutoring on the word reading skills of secondary students with LD with (...) and without EBD. The intervention was conducted through 4–5 baseline and 16–18 reading units three times a week for 15 min over 8 weeks. The results showed positive effects indicating a highly effective treatment. In addition, follow-up results were also promising. Our findings indicate that this multicomponent intervention has a positive effect on the word fluidity of low-achieving students in secondary education with LD and/or EBD. (shrink)

Although sexual difference is widely regarded as the concept that lies at the center of Luce Irigaray's thought, its meaning and significance is highly contested. This dissensus, however, attests to more than merely the existence of a recalcitrant conceptual ambiguity. That is, Irigaray's discussion of sexual difference remains fraught not because she leaves this concept undefined but because the centrality of sexual difference in fact marks a complex and unstable nexus of phenomena that shift throughout her work. Consequently, if Irigaray (...) is indeed the preeminent thinker of sexual difference, this is not in virtue of her recurrent appeal to a monolithic, readily digestible concept but rather somehow despite the absence of precisely this gesture. In this paper, I will attempt to elucidate the peculiar preeminence of sexual difference in Irigaray's work by identifying her persistent, though largely unexamined, commitment to transcendental phenomenology. Indeed, I attempt to show that the complex of phenomena of sexual difference emerges in L'oubli de l'air and The Way of Love as a modulation of Heidegger's own revision of transcendental phenomenology. In this sense, the peculiar preeminence of sexual difference does not mark the centrality of a concept but Irigaray's amplification of this Heideggerian gesture. (shrink)

ZusammenfassungDer Beitrag fragt nach dem Stellenwert des Normalitätsbegriffs im Diskurs der Behinderung. Ausgangspunkt ist die These, dass Normalität und Normativität analytisch voneinander getrennt werden müssen. In der heutigen Normalisierungsgesellschaft existieren sowohl wertbezogene, präskriptive ("normative") als auch statistisch fundierte, deskriptive ("normalistische") Normen. Außerdem lassen sich zwei Normalisierungsstrategien kennzeichnen: ein starr ausgrenzender, normierender Ansatz ("Protonormalismus") und eine flexible, normalisierende Strategie ("flexibler Normalismus"). Auf dieser theoretischen Folie wird diskutiert, ob sich im behindertenpolitischen Diskurs und in sozialpolitischen Konzepten Tendenzen der flexiblen Normalisierung auffinden lassen. (...) Der Schwerpunkt des Beitrags liegt auf einer normalitätstheoretischen Analyse der beiden Klassifikationsmodelle der Weltgesundheitsorganisation. Die "International Classification of Impairments, Disabilities and Handicaps" (ICIDH 1980) blieb noch der wertbezogenen Normativität verhaftet. Dagegen stellt die "International Classification of Functioning, Disability and Health" (ICF 2001) die normalistische (Vergleichs-)Norm ins Zentrum und formuliert das Gebot der Selbstnormalisierung. (shrink)

The central questions addressed in this paper are: (1) how are forms related to predication? And (2) what role do forms and predication play in the discovery and articulation of truth? The first section of the paper provides—in broad strokes—a synopsis of Plato’s account of forms. The second section considers predication in relation to forms showing that the existence and nature of forms is a necessary condition for predication, and that Plato’s account of predication is consistent with, in fact, anticipates, (...) Aristotle’s treatment of reality in the Categories. The conclusion of the paper is that forms and predication are central to philosophical hermeneutics, to the discovery and articulation of truth. (shrink)

ABSTRACTIn this paper, I argue that, contrary to popular opinion, there is good reason to think that the qualities that make people good reasoners also make them better off. I will focus specifically on epistemic virtue: roughly, the kind of character in virtue of which one is excellently oriented towards epistemic goods. I propose that epistemic virtue is importantly implicated in the realization of some of the goods that are widely believed to be instrumental to, or even constitutive of, well-being. (...) Here I focus on one such good: friendship. (shrink)

Claims regarding negative strong reciprocity do indeed rest on experiments lacking established external validity, often without even a small Guala's review should prompt strong reciprocity proponents to extend the real-world validity of their work, exploring the preferences participants bring to experiments. That said, Guala's approach fails to differentiate among group selection approaches and glosses over cross-cultural variability.

ArgumentDuring the 1950s it became apparent that antibiotics could not conquer all microbes, and a series of tests were developed to assess the susceptibility of microbes to antibiotics. This article explores the development and standardization of one such testing procedure which became dominant in the Nordic region, and how the project eventually failed in the late 1970s. The standardization procedures amounted to a comprehensive scheme, standardizing not only the materials used, but also the methods and the interpretation of the results. (...) Focusing on Sweden and Norway in particular, the article shows how this comprehensive standardization procedure accounted for several co-dependent factors and demanded collaboration within and across laboratories. Whereas literature on standardization has focused mostly on how facts and artefacts move within and across laboratories, I argue for the importance of also attending to regions and territories. More particularly, while arguing that the practices, ideals, and politics related to what have been called the “Nordic welfare state” were contributing to the design of the standardized procedure in the laboratory, I also argue that Scandinavia was drawn together as a unified region with and by these very same practices. (shrink)

Abstract Robert Stern's Understanding Moral Obligation is a remarkable achievement, representing an original reading of Kant's contribution to modern moral philosophy and the legacy he bequeathed to his later-eighteenth- and early-nineteenth-century successors in the German tradition. On Stern's interpretation, it was not the threat to autonomy posed by value realism, but the threat to autonomy posed by the obligatory nature of morality that led Kant to develop his critical moral theory grounded in the concept of the self-legislating moral agent. Accordingly, (...) Stern contends that Kant was a moral realist of sorts, holding certain substantive views that are best characterized as realist commitments about value. In this paper, I raise two central objections to Stern's reading of Kant. The first objection concerns what Stern identifies as Kant's solution to the problem of moral obligation. Whereas Stern sees the distinction between the infinite will and the finite will as resolving the problem of moral obligation, I argue that this distinction merely explains why moral obligations necessarily take the form of imperatives for us imperfect human beings, but does not solve the deeper problem concerning the obligatory nature of morality: why we should take moral norms to be supremely authoritative laws that override all other norms based on our non-moral interests. The second objection addresses Stern's claim that Kantian autonomy is compatible with value realism. Although this is an idea with which many contemporary readers will be sympathetic, I suggest that the textual evidence actually weighs in favor of constructivism. (shrink)