BackgroundWith advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this.Main bodyResearch on family communication may (...) also reveal that participants did not inform their relatives about the risk of a serious genetic condition, even when preventive and treatment options are available. Researchers may then face a dilemma: Do they need to warn at-risk relatives about the finding? Or do they keep silent due to prior confidentiality agreements with study participants?ConclusionsWe believe that the absolute confidence promised to research participants outweighs the interests of their relatives, even though it can be claimed that relatives at risk of a genetic disease do, in principle, have a right to know information collected about their health. Not respecting confidentiality agreements could cause distrust between researchers and research participants and possibly harm the relationship between probands and relatives. Relatives' health interests can still be taken into account without jeopardizing participant trust, by considering alternative scenarios, including sharing general study findings on the barriers participants experience with their healthcare professionals and by offering participants psychosocial support for family communication. (shrink)

The COVID-19 pandemic has forced developmental researchers to rethink their traditional research practices. The growing need to study infant development at a distance has shifted our research paradigm to online and digital monitoring of infants and families, using electronic devices, such as smartphones. In this practical guide, we introduce the Experience Sampling Method – a research method to collect data, in the moment, on multiple occasions over time – for examining infant development at a distance. ESM is highly suited for (...) assessing dynamic processes of infant development and family dynamics, such as parent-infant interactions and parenting practices. It can also be used to track highly fluctuating family dynamics and routines. The aim of the current paper was to provide an overview by explaining what ESM is and for what types of research ESM is best suited. Next, we provide a brief step-by-step guide on how to start and run an ESM study, including preregistration, development of a questionnaire, using wearables and other hardware, planning and design considerations, and examples of possible analysis techniques. Finally, we discuss common pitfalls of ESM research and how to avoid them. (shrink)

Amsterdam University Press is a leading publisher of academic books, journals and textbooks in the Humanities and Social Sciences. Our aim is to make current research available to scholars, students, innovators, and the general public. AUP stands for scholarly excellence, global presence, and engagement with the international academic community.

The prior issue of Krisis (42:1) published Critical Naturalism: A Manifesto, with the aim to instigate a debate of the issues raised in this manifesto – the necessary re-thinking of the role (and the concept) of nature in critical theory in relation to questions of ecology, health, and inequality. Since Krisis considers itself a place for philosophical debates that take contemporary struggles as starting point, it issued an open call and solicited responses to the manifesto. This is one of the (...) sixteen selected responses, which augment, specify, or question the assumptions and arguments of the manifesto. (shrink)

There is widespread understanding of the close connection between religion and the ecological crisis, and that in order to amend this crisis, theological resources are needed. This monograph seeks to contribute to this endeavor by engaging the theology of Dietrich Bonhoeffer. His theology is particularly suitable in this context, due to its open-ended nature, and to the prophetic and radical nature of the questions he was prepared to ask--that is why there are many other attempts to contextualize Bonhoeffer's theology in (...) areas that he himself has not directly written about. In this monograph, Steven van den Heuvel first of all addresses the question of how to translate Bonhoeffer's theology in a methodologically sound way. He settles on a modified form of the general method of correlation. Then, secondly, van den Heuvel sets out to describe five major concepts in Bonhoeffer's work, bringing these into critical interplay with discussions in environmental ethics and eco-theology. In making the correlations he thoroughly describes each concept, situating it in the historic and intellectual background of Bonhoeffer's time. He then transposes these concepts to contemporary environmental ethics, describing what contribution Bonhoeffer's theology can make. - back of book. (shrink)

Especially today, the central theme of the book is relevant, in an era of worldwide cultural diffusion, and a longing for authenticity and romanticized ...

The ubiquitous nature of mitochondria, the dual genetic foundation of the respiratory chain in mitochondrial and nuclear genome, and the peculiar rules of mitochondrial genetics all contribute to the extraordinary heterogeneity of clinical disorders associated with defects of oxidative phosphorylation (mitochondrial encephalomyopathies). Here, we review recent findings about nuclear gene defects in isolated OXPHOS enzyme complex deficiency. This information should help in identifying patients with mitochondrial disease and defining a biochemical and molecular basis of the disorder found in each patient. (...) This knowledge is indispensable for accurate genetic counseling and prenatal diagnosis, and is a prerequisite for the development of rational therapies, which are still, at present, woefully inadequate. BioEssays 23:518–525, 2001. © 2001 John Wiley & Sons, Inc. (shrink)

The Ageing of societies is a unique historical development of mankind. Today, such ageing is recognized as a threat for developed societies. There is fear of increasing inequality in health and in access to health care. Apart from the costs of ageing and care, such fear creates intergenerational conflicts. This paper explores what values are at stake when a society ages. At issue here is the social position of the old citizens and the way in which they are regarded by (...) their fellow citizens. Findings indicate the need to contemplate the consequences of ageing for societies and to discuss the impact these have for the values dominating contemporary post-welfare states. European welfare states were based on a balanced combination of three values: freedom, equality, and solidarity. Because these values are misbalanced now, equal accessibility of care and conditions for social participation are disappearing. Therefore, we shall have to think about new ways in which our societies can reaffirm basic human values. (shrink)

Leibniz’ Briefwechsel wird 1705/06 vor allem von den politischen und militärischen Großereignissen bestimmt, über deren Verlauf sich Leibniz informieren lässt und zu denen er eigene Einschätzungen an seine Korrespondenten weitergibt: Zum Spanischen Erbfolgekrieg, zum Nordischen Krieg und zu der Aussicht des Hauses Hannover auf die Thronfolge in England. Um letztere zu forcieren und eine Einladung der Kurfürstin Sophie nach England zu erzwingen, entwirft und publiziert er im Namen von Rowland Gwynne ein Pamphlet, das in London jedoch das genaue Gegenteil bewirkt (...) und im dortigen Parlament zum Skandal wird. Im Bereich der Philosophie greift Leibniz in die zwischen J. Le Clerc und P. Bayle geführte Diskussion um das Werk von R. Cudworth, The true intellectual system of the Universe, 1678, mit seiner Considération sur les principes de vie, et sur les natures plastiques, ein. Im August 1705 erreicht Leibniz’ Korrespondenz mit den China-Missionaren (J. Bouvet, J. de Fontaney, Ch. Le Gobien, A. Verjus, C. Visdelou) einen letzten Höhepunkt. Der Austausch mit dem Pariser Oratorianer J. Lelong widmet sich weiterhin nebeneinander Bibel-Bibliographie und dem Streit um die Anwendbarkeit des Differentialkalküls. (shrink)

Reinhard Finster, Gerd van den Heuvel: "Gottfried Wilhelm Leibniz". Mit Selbstzeugnissen und Bilddokumenten. rowohlts monographien. Rowohlt Taschenbuch Verlag, Reinbek 1990. 158 S., br., 10,80 DM.

This book brings together a number of important essays on the intersection of servant leadership and social entrepreneurship, examining them through a shared focus on ‘the will to serve’. This combination bears out the insight that inspiring social and economic leaders are able to transform a conflictual human settlement into a collaborative and caring human community. The book seeks to answer the question of whether we can induce from their ‘way of doing things’ a model of civic entrepreneurship and leadership (...) that can inspire people in profit, non-profit and public organizations. It also examines the extent to which the will to serve is compatible with the will to maximize profit or the will to gain economic, political or religious power. Furthermore, it asks how far different spiritual traditions create different models and examples of servant leadership and social entrepreneurship. This book will be of interest to researchers working in the fields of business ethics, business spirituality and corporate social responsibility. (shrink)

BackgroundAlthough a large number of clinical trials on interventions demonstrating efficacy (or lack thereof) are conducted annually, much of this evidence is not accessible to scientists and clinicians.ObjectivesWe aimed to determine the publication rate of posttraumatic stress disorder (PTSD) trials that have been registered in clinical trial registries, and the factors associated with publication.MethodsTrials, completed on January 15, 2015, were identified via the US National Institutes of Health clinical trials registry, the European Union Clinical Trials Register and the WHO International (...) Clinical Trials Registry Platform. A systematic search for publications (published by the end of March 2018) related to each of the registered trials were then performed.ResultsFour hundred and thirty-eight of 1982 potentially eligible trials were included. Only 34% of interventional trials were registered prior to initiation, 9% were registered within 2 months of starting and 20% after trial completion. Of the 438 included trials, 72% had generated peer-reviewed publications, while an additional 7% had disseminated results in some other form (such as on the trial database), 26 months after trial completion. Randomisation of a trial was the only factor individually associated with publication, in logistic regression analysis (p < 0.001). Intervention type, university as sponsor and study registration prior to completion were factors that influenced the time to publication, using Cox regression (p < 0.001).ConclusionsThis study underscores the importance of timely and accurate publication and dissemination of trial results, in order to avoid the potential waste of resources and to ensure research integrity and patient safety. We suggest that authors and journal editors adhere to conditions set out by the International Committee of Medical Journal Editors and that more diligent data sharing is encouraged through prospective trial registration and trial reporting websites. (shrink)

This intervention study examined the effects of a career crafting training on physicians' perceptions of their job crafting behaviors, career self-management, and employability. A total of 154 physicians working in two hospitals in a large Dutch city were randomly assigned to a waitlist control group or an intervention group. Physicians in the intervention group received an accredited training on career crafting, including a mix of theory, self-reflection, and exercises. Participants developed four career crafting goals during the training, to work on (...) in the subsequent weeks, after which a coaching conversation took place over the phone. Physicians in the control group received no intervention. A pre- and post-test 8 weeks later measured changes in job crafting and career self-management and employability of 103 physicians that completed the pre- and post-test. RM ANOVAs showed that the intervention enhanced perceptions of career self-management and job crafting behavior to decrease hindering job demands. No support was found for the effect of the intervention on other types of job crafting and employability. This study offers novel insights into how career crafting can be enhanced through training, as this is the first empirical study to examine a career crafting intervention. HR managers can use the outcomes to develop tailored career policies and career development practices. (shrink)

Yarkoni's analysis clearly articulates a number of concerns limiting the generalizability and explanatory power of psychological findings, many of which are compounded in infancy research. ManyBabies addresses these concerns via a radically collaborative, large-scale and open approach to research that is grounded in theory-building, committed to diversification, and focused on understanding sources of variation.

This paper investigates the state of the art with respect to sustainability reporting, its linkages with the corporations, internal measurement and monitoring systems and their combined impact on the quality of contemporary sustainability benchmarks, developed by SRI analysts and so-called rating and screening agencies. This research originated from the EU-funded research initiative to create a new generation management framework for corporate sustainability and responsibility (CS-R). The aim of it is to develop a coherent set of assessment -, measurement - and (...) monitoring tools. The sustainability benchmark tool should align the interests of corporations implementing CS-R and various organizations supporting SRI, such as fund managers, analysts and screening agencies. This paper show the essentials features of an actual sustainability benchmark which is currently under construction. This approach will have significance impact on the further development of SRI and CS-R practices, as well as support the development of sustainability reporting standards. (shrink)

BackgroundObtaining informed consent for intravenous thrombolysis in acute ischemic stroke can be challenging, and little is known about if and how the informed consent procedure is performed by neurologists in clinical practice. This study examines the procedure of informed consent for intravenous thrombolysis in acute ischemic stroke in high-volume stroke centers in the Netherlands.MethodsIn four high volume stroke centers, neurology residents and attending neurologists received an online questionnaire concerning informed consent for thrombolysis with tissue-type plasminogen activator (tPA). The respondents were (...) asked to report their usual informed consent practice for tPA treatment and their considerations on whether informed consent should be obtained.ResultsFrom the 203 invited clinicians, 50% (n = 101) completed the questionnaire. One-third of the neurology residents (n = 21) and 21% of the neurologists (n = 8) reported that they always obtain informed consent for tPA treatment. If a patient is not capable of providing informed consent, 30% of the residents (n = 19) reported that they start tPA treatment without informed consent. In these circumstances, 53% of the neurologists (n = 20) reported that the resident under their supervision would start tPA treatment without informed consent. Most neurologists (n = 21; 55%) and neurology residents (n = 45; 72%) obtained informed consent within one minute. None of the respondents used more than five minutes for informed consent. Important themes regarding obtaining informed consent for treatment were patients’ capacity, and medical, ethical and legal considerations.ConclusionThe current practice of informed consent for thrombolysis in acute ischemic stroke varies among neurologists and neurology residents. If informed consent is obtained, most clinicians stated to obtain informed consent within one minute. In the future, a shortened information provision process may be applied, making a shift from informed consent to informed refusal, while still considering the patient’s capacity, stroke severity, and possible treatment delays. (shrink)

A theory of the joint measurement of quantum mechanical observables is generalized in order to make it applicable to the measurement of the local observables of field theory. Subsequently, the property of local commutativity, which is usually introduced as a postulate, is derived by means of the theory of measurement from a requirement of mutual nondisturbance, which, for local observables performed at a spacelike distance from each other, is interpreted as a requirement of macrocausality. Alternative attempts at establishing a deductive (...) relationship between relativistic causality and local commutativity are reviewed, but found wanting, either because of the assumption of an unwarranted objectivity of the object system (algebraic approach) or because of the use of a projection postulate (operational approach). Finally, the quantum mechanical nonobjectivity is related to certain features of nonlocality which are present in the formalism of quantum mechanics. (shrink)

Lee and Schwarz interpret meta-analytic research and replication studies as providing evidence for the robustness of cleansing effects. We argue that the currently available evidence is unconvincing because publication bias and the opportunistic use of researcher degrees of freedom appear to have inflated meta-analytic effect size estimates, and preregistered replications failed to find any evidence of cleansing effects.

This paper studies moral education in Proclus and Iamblichus. The first section analyses Proclus’ theory of moral education and its psychological underpinnings. Especially important in this context is the identification of the faculty of choice with the passive or teachable intellect. The second section investigates the implementation of this theory into practice with the help of Iamblichus’ Letter to Sopater: On Bringing up Children. The final section demonstrates how Proclus’ famous tripartite division of poetry should be understood in the context (...) of his program of moral education. (shrink)

Vaccination programmes against infectious diseases aim to protect individuals from serious illness but also offer collective protection once a sufficient number of people have been immunized. This so-called ‘herd immunity’ is important for individuals who, for health reasons, cannot be immunized or who respond less well to vaccines. For these individuals, it is pivotal that others establish group protection. However, herd immunity can be compromised when people deliberately decide not to be immunized and benefit from the herd’s protection. These agents (...) are often referred to as free riders: their omissions are deemed to be unfair to those who do contribute to the collective’s health. This article addresses the unfairness of such ‘free riding’. An argument by Garett Cullity is examined, which asserts that the unfairness of moral free riding lies neither in one’s intentions, nor in one’s reluctance to embrace a public good. This argument offers a strong basis for justifiably arguing that free riding is unfair. However, it is then argued that other considerations also need to be taken into account before simply holding free riding against non-compliers. (shrink)

This paper explores structuralism as a way to model theories from scientific practice. As a case study I analyzed a theory about the dynamics of the basal ganglia, a part of the brain that is involved in Parkinson's disease. After introducing the case study I explore how to structurally represent qualitative assumptions about disease, intervention and dynamical systems in general. I further explicate the structure of the basal ganglia theory in detail, how it explains Parkinson's disease and how it implies (...) treatments. I close with a consideration of how a structuralist representation could be useful in practice to explore and develop theories with the aid of a computer. (shrink)