Theoretical arguments and empirical investigations indicate that a high proportion of published findings do not replicate and are likely false. The current position paper provides a broad perspective on scientific error, which may lead to replication failures. This broad perspective focuses on reform history and on opportunities for future reform. We organize our perspective along four main themes: institutional reform, methodological reform, statistical reform and publishing reform. For each theme, we illustrate potential errors by narrating the story of a fictional (...) researcher during the research cycle. We discuss future opportunities for reform. The resulting agenda provides a resource to usher in an era that is marked by a research culture that is less error-prone and a scientific publication landscape with fewer spurious findings. (shrink)

The rapid dynamics of COVID-19 calls for quick and effective tracking of virus transmission chains and early detection of outbreaks, especially in the “phase 2” of the pandemic, when lockdown and other restriction measures are progressively withdrawn, in order to avoid or minimize contagion resurgence. For this purpose, contact-tracing apps are being proposed for large scale adoption by many countries. A centralized approach, where data sensed by the app are all sent to a nation-wide server, raises concerns about citizens’ privacy (...) and needlessly strong digital surveillance, thus alerting us to the need to minimize personal data collection and avoiding location tracking. We advocate the conceptual advantage of a decentralized approach, where both contact and location data are collected exclusively in individual citizens’ “personal data stores”, to be shared separately and selectively, voluntarily, only when the citizen has tested positive for COVID-19, and with a privacy preserving level of granularity. This approach better protects the personal sphere of citizens and affords multiple benefits: it allows for detailed information gathering for infected people in a privacy-preserving fashion; and, in turn this enables both contact tracing, and, the early detection of outbreak hotspots on more finely-granulated geographic scale. The decentralized approach is also scalable to large populations, in that only the data of positive patients need be handled at a central level. Our recommendation is two-fold. First to extend existing decentralized architectures with a light touch, in order to manage the collection of location data locally on the device, and allow the user to share spatio-temporal aggregates—if and when they want and for specific aims—with health authorities, for instance. Second, we favour a longer-term pursuit of realizing a Personal Data Store vision, giving users the opportunity to contribute to collective good in the measure they want, enhancing self-awareness, and cultivating collective efforts for rebuilding society. (shrink)

How have legal philosophers systemized law, and what types of assumptions have they made in undertaking this task? In what sense is law a system, and how is it maintained as such? This translation of a French book answers these two core inter-related questions by surveying and analyzing the theories of a number of important European legal philosophers as well as offering its own distinct theory for viewing the law as a system.

We introduce values for rooted-tree and sink-tree digraph games axiomatically and provide their explicit formula representation. These values may be considered as natural extensions of the lower equivalent and upper equivalent solutions for line-graph games studied in van den Brink et al. (Econ Theory 33:349–349, 2007). We study the distribution of Harsanyi dividends. We show that the problem of sharing a river with a delta or with multiple sources among different agents located at different levels along the riverbed can be (...) embedded into the framework of a rooted-tree or sink-tree digraph game correspondingly. (shrink)

Der Band geht interdisziplinar der Frage nach, wie sich Sorge als existenzielle Grundkonstante in modernen Gegenwartsgesellschaften manifestiert. Konzeptuell liegt den Beitragen eine Unterscheidung von drei Dimensionen der Sorge zugrunde: die Sorge um sich, die Sorge um andere und die Sorge um die Umwelt. Diese Dimensionen werden dabei auch in einer genealogischen Perspektive betrachtet. Dadurch wird ein umfassendes Forschungsfeld eroffnet, in dem heterogene empirische Phanomene, komplexe gesellschaftliche Entwicklungen und zentrale ethische Fragestellungen in einer theologischen, sozialwissenschaftlichen und philosophischen Perspektive bearbeitet werden. Ziel (...) des Forschungsfeldes ist es, durch die wechselseitige Bezugnahme dieser Perspektiven Sorge als ein Schlusselkonzept zur Analyse der spatmodernen Gesellschaft zu nutzen und zu etablieren. Die Forschung steht im Kontext zum gleichnamigen Forschungsschwerpunkt am Evangelischen Studienwerk Villigst. Mit Beitragen von Gianna Behrendt, Knut Berner, Andrea Bieler, Anna Henkel, Isolde Karle, Helen Kohlen, Gesa Lindemann, Richard Paluch, Franziska Schade, Katrien Schaubroeck, Stefanie Schniering, Tina Aniko Schroter, Maike Schult, Henk van Gils, Werner Vogd, Micha Werner. (shrink)

This article tries to bring to light the mistaken idea that the words the law borrows from plain language, without explicit definition, should keep their original meaning; Although legal language and plain language are obviously close “friends”, they seem to be also “false friends”, because these words belonging to two different languages have, beyond their formal similarities, partially different meanings. For this purpose, this article provides a critical analysis of the reference of the belgian case law to the ordinary meaning (...) of words. This reference is analysed in relation to three different matters: interpretation, legality, and autonomy of criminal law. (shrink)

Quelle différence y a-t-il entre des règles de droit et des ordres appuyés de menaces? Qu'est-ce qu'une obligation juridique et en quoi se trouve-t-elle apparentée à une obligation morale? Quelle est la nature des règles et dans quelle mesure le droit consiste-t-il en des règles? Qu'est-ce que la justice et en quoi diffère-t-elle du reste de la morale?Au cours d'une discussion approfondie et séparée de ces problèmes récurrents, l'auteur relève une série d'éléments d'une importance essentielle pour la compréhension du droit, (...) et réalise un nouveau départ dans la théorie du droit. L'ouvrage comporte une nouvelle analyse des notions de validité juridique, de souveraineté, et de fondement d'un système juridique, un nouvel examen du droit naturel et du positivisme juridique, une discussion originale des limites du formalisme dans l'élaboration de la décision judiciaire, et un examen de la nature du droit international.Le texte est complété par des notes bibliographiques détaillées et la discussion de thèses émises par des auteurs contemporains et plus anciens. Cette deuxième édition s'accompagne en outre d'une postface posthume, publiée sous la responsabilité de P.A. Bulloch et J. Raz. (shrink)

La pensée du jurisconsulte anglais Jeremy Bentham (1748-1832) se prête particulièrement bien à une approche interdisciplinaire telle que celle qui est menée dans le présent ouvrage. Si Bentham, en effet, a consacré l'essentiel de ses travaux à des projets de réforme de la société anglaise de son temps par le biais de la codification des lois, il n'a cessé d'enrichir cette réflexion par des emprunts faits à d'autres disciplines, dans lesquelles il était également passé maître, telles la morale, la psychologie, (...) la logique, la théorie du langage, l'économie ou la politique.Cette pensée, à la fois plurielle et ambiguë (est-elle conservatrice, réformiste, révolutionnaire ou utopique? Est-elle descriptive, explicative ou normative?), révèle aujourd'hui son étonnante actualité. Il est peu de thèmes juridiques contemporains qui ne trouvent en effet leur place dans l'oeuvre de Bentham : ainsi les questions de l'utilité, de la balance des intérêts, de la constitution d'une science du droit et d'une logique déontique ; ainsi les concepts de système juridique, de codification, de déontologie, de contrôle social, d'opinion publique et de majorité politique. L'intérêt de cette « relecture » de la pensée de Bentham réside dès lors sans doute moins dans l'exégèse de ses multiples détours que dans la mise en lumière de ses ambiguïtés et de ses limites qui, pour une large part, sont aussi les nôtres. Parmi celles-ci, l'oscillation constante, déjà inscrite dans les textes benthamiens, entre deux figures de l'État moderne (État libéral et État-providence), n'est sans doute pas la moins actuelle. (shrink)

In this interview with Jan Hendrik van den Berg, the Dutch phenomenologist and psychiatrist addresses the origins of his work, his most significant influences, and the purpose of metabletic phenomenology in the modern age. In the course of the interview. Dr. Van den Berg provides a basic overview of his work, and highlights the central finding of his metabletic analyses: a loss of wonder before nature, which results from the more fundamental loss of genuine spirituality in the modern world.

Recent publications on digital health technologies highlight the importance of ‘responsible’ use. References to the concept of responsibility are, however, frequently made without providing clear definitions of responsibility, thus leaving room for ambiguities. Addressing these uncertainties is critical since they might lead to misunderstandings, impacting the quality and safety of healthcare delivery. Therefore, this study investigates how responsibility is interpreted in the context of using digital health technologies, including artificial intelligence (AI), telemonitoring, wearables and mobile apps. We conducted a scoping (...) review with a systematic search in PubMed, Web of Science, Embase, CINAHL and Philosopher’s Index. A total of 34 articles were included and categorized using a theoretical framework of responsibility aspects, and revealed two main findings. First, we found that digital health technologies can expand and shift existing ‘role responsibilities’ among caregivers, patients and technology. Second, moral responsibility is often equated with liability or accountability, without clear justification. Articles describe new ways in which physicians can be held accountable, particularly in the context of AI, and discuss the emergence of a ‘responsibility gap’ where no-one can be fully responsible for AI-generated outcomes. The literature also shows that m-Health technologies can increase patients’ accountability for their own health. However, there was limited discussion in the reviewed literature on whether these attributions of accountability are appropriate. We conclude with implications for practice and suggestions for expanding the theoretical framework of moral responsibility, recommending further study on responsibility of collectives and artificial entities, and on the role of virtue in digital health. (shrink)

In this article, we report on eight grand challenges for value sensitive design, which were developed at a one-week workshop, Value Sensitive Design: Charting the Next Decade, Lorentz Center, Leiden, The Netherlands, November 14–18, 2016. A grand challenge is a substantial problem, opportunity, or question that motives sustained research and design activity. The eight grand challenges are: Accounting for Power, Evaluating Value Sensitive Design, Framing and Prioritizing Values, Professional and Industry Appropriation, Tech policy, Values and Human Emotions, Value Sensitive Design (...) and Intelligent Algorithms, and Value Tensions. Each grand challenge consists of a discussion of its importance and a set of tractable key questions. (shrink)

Increasing public concern for the welfare of fish species that human beings use and exploit has highlighted the need for better understanding of the cognitive status of fish and of their ability to experience negative emotions such as pain and fear. Moreover, studying emotion and cognition in fish species broadens our scientific understanding of how emotion and cognition are represented in the central nervous system and what kind of role they play in the organization of behavior. For instance, on a (...) macro neuro-architecture level the brains of fish species look dramatically different from those of mammals, while such a dramatic difference does not (always) occur at the level of emotion- and cognition-related behavior. Here, therefore, we discuss the evidence of emotion and cognition in fish species related to underlying neuro-architecture and the role that emotion and cognition play in the organization of behavior. To do so we use a framework encompassing a number of steps allowing a systematic approach to these issues. Emotion and cognition confer on human and non-human animals the capacity to compliment and/or override immediate reflexes to stimuli and so allow a large degree of flexibility in behavior. Systematic research on behavior that in mammals is indicative of emotion and cognition has been conducted in only a few fish species. The data thus far indicate that in these species brain-behavior relationships are not fundamentally different from those observed in mammals. Furthermore, data from other studies show evidence that behavior patterns related to emotion and cognition vary between fish species as well within fish species, related to sex and life history stage for example. From a welfare perspective, knowledge of such variability will potentially help us to design optimal living conditions for fish species kept by humans. (shrink)

Introduction for 'New Developments in Cognitive Science of Religion - The Rationality of Religious Belief' forthcoming with Springer. We discuss the philosophical debate over Cognitive Science of Religion and give an outline of the book.

We apply an online optimization process based on machine learning to the production of Bose-Einstein condensates. BEC is typically created with an exponential evaporation ramp that is optimal for ergodic dynamics with two-body s-wave interactions and no other loss rates, but likely sub-optimal for real experiments. Through repeated machine-controlled scientific experimentation and observations our ’learner’ discovers an optimal evaporation ramp for BEC production. In contrast to previous work, our learner uses a Gaussian process to develop a statistical model of the (...) relationship between the parameters it controls and the quality of the BEC produced. We demonstrate that the Gaussian process machine learner is able to discover a ramp that produces high quality BECs in 10 times fewer iterations than a previously used online optimization technique. Furthermore, we show the internal model developed can be used to determine which parameters are essential in BEC creation and which are unimportant, providing insight into the optimization process of the system. (shrink)

This book addresses the methodological issues involved in responsible innovation and provides an overview of recent applications of multidisciplinary research. Responsible innovation involves research into the ethical and societal aspects of new technologies (e.g. ICT, nanotechnology, biotechnology and brain sciences) and of changes in technological systems (e.g. energy, transport, agriculture and water). This research is highly multidisciplinary. It involves close collaboration between researchers in such diverse fields as ethics, social science, law, economics, applied science, engineering - as well as innovative, (...) design-oriented and policy-relevant. Although there is a trend to engage ethicists and social scientists early in technology development, most literature in the field of Technology Assessment or Ethics of Technology is still aimed at one discipline whereas this book incorporates different approaches and to discuss experiences, lessons and more general theoretical issues. (shrink)

Introduction: Decisions to withdraw or withhold curative or life-sustaining treatment can have a huge impact on the symptoms which the palliative-care team has to control. Palliative-care patients and their relatives may also turn to palliative-care physicians and nurses for advice regarding these treatments. We wanted to assess Indian palliative-care nurses and physicians’ attitudes towards withholding and withdrawal of curative or life-sustaining treatment. Method: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programmes in (...) New Delhi, using a semi-structured questionnaire. For the interviews and analysis of the data we followed Grounded-Theory methodology. Results: Withholding a curative or life-sustaining treatment which may prolong a terminal cancer patient’s life with a few weeks but also has severe side-effects was generally considered acceptable by the interviewees. The majority of the interviewees agreed that life-sustaining treatments can be withdrawn in a patient who is in an irreversible coma. The palliative-care physicians and nurses were of the opinion that a patient has the right to refuse life-saving curative treatment. While reflecting upon the ethical acceptability of withholding or withdrawal of curative or life-sustaining treatment, the physicians and nurses were concerned about the whole patient and other people who may be affected by the decision. They were convinced they can play an important advisory role in the decision-making process. Conclusion: While deciding about the ethical issues, the physicians and nurses do not restrict their considerations to the physical aspects of the disease, but also reflect upon the complex wider consequences of the treatment decisions. (shrink)

In this paper, we consider the meaning, roles, and uses of trust in the economic and public domain, focusing on the task of designing systems for trust in information technology. We analyze this task by means of a survey of what trust means in the economic and public domain, using the model proposed by Lewicki and Bunker, and using the emerging paradigm of value-sensitive design. We explore the difficulties developers face when designing information technology for trust and show how our (...) analysis in conjunction with existing engineering design methods provides means to address these difficulties. Our main case concerns a concrete problem in the economic domain, namely the transfer of control from customs agencies to companies. Control of individual items is increasingly untenable and is replaced by control on the level of companies aimed at determining whether companies can be trusted to be in control of their business and to be in compliance with applicable regulations. This transfer sets the task for companies to establish this trust by means of information technology systems. We argue that this trust can be achieved by taking into account philosophical analyses of trust and by including both parties in the trust relationship as clients for whom the information technology systems are to be designed. (shrink)

Much clinical and ethnographic evidence suggests that humans, like many other organisms, are selected to avoid close inbreeding because of the fitness costs of inbreeding depression. The proximate mechanism of human inbreeding avoidance seems to be precultural, and to involve the interaction of genetic predispositions and environmental conditions. As first suggested by E. Westermarck, and supported by evidence from Israeli kibbutzim, Chinese sim-pua marriage, and much convergent ethnographic and clinical evidence, humans negatively imprint on intimate associates during a critical period (...) of early childhood.There is also much evidence that, like other social animals, humans do not seek to maximize outbreeding, but rather to maintain an optimal balance between outbreeding and inbreeding.Closeinbreeding reduces fitness through inbreeding depression, butsomeinbreeding brings the benefits of nepotism. For simple, stateless, horticultural societies, the optimal balance seems to be achieved by a combination of precultural inbreeding avoidance of relatives with anr≤·25 and cultural rules of preferential marriage with kin withr≥·25. Adjustment of the coefficient of inbreeding to other ecological settings seems to be largely cultural. An interactive model of “culture in nature” is presented, in which culture is seen as coevolving with genes to produce the maxiniization of individual inclusive fitness. (shrink)

It is widely thought that the cognitive science of religion may have a bearing on the epistemic status of religious beliefs and on other topics in philosophy of religion. Epistemologists have used theories from CSR to argue both for and against the rationality of religious beliefs, or they have claimed that CSR is neutral vis-à-vis the epistemic status of religious belief. However, since CSR is a rapidly evolving discipline, a great deal of earlier research on the topic has become dated. (...) Furthermore, most of the debate on the epistemic consequences of CSR has not taken into account insights from the philosophy of science, such as explanatory pluralism and explanatory levels. This volume overcomes these deficiencies. This volume brings together new philosophical reflection on CSR. It examines the influence of CSR theories on the epistemic status of religious beliefs; it discusses its impact on philosophy of religion; and it offers new insights for CSR. The book addresses the question of whether or not the plurality of theories in CSR makes epistemic conclusions about religious belief unwarranted. It also explores the impact of CSR on other topics in philosophy of religion like the cognitive consequences of sin and naturalism. Finally, the book investigates what the main theories in CSR aim to explain, and addresses the strengths and weaknesses of CSR. (shrink)

Objectives: Efficient procedures for obtaining informed (proxy) consent may contribute to high influenza vaccination rates in nursing homes. Yet are such procedures justified? This study’s objective was to gain insight in informed consent policies in Dutch nursing homes; to assess how these may affect influenza vaccination rates and to answer the question whether deviating from standard informed consent procedures could be morally justified. Design: A survey among nursing home physicians. Setting & Participants: We sent a questionnaire to all (356) nursing (...) homes in the Netherlands, to be completed by one of the physicians. Results: We received 245 completed questionnaires. As 21 institutions appeared to be closed or merged into other institutions, the response was 73.1% (245/335). Of all respondents 81.9% reported a vaccination rate above 80%. Almost 50% reported a vaccination rate above 90%. Most respondents considered herd immunity to be an important consideration for institutional policy. Freedom of choice for residents was considered important by almost all. Nevertheless, 106 out of 245 respondents follow a tacit consent procedure, according to which vaccination will be administered unless the resident or her proxy refuses. These institutions show significantly higher vaccination rates (p < 0.03). Conclusions: In our discussion we focus on the question whether tacit consent procedures can be morally justifiable. Such procedures assume that vaccination is good for residents either as individuals or as a group. Even though this assumption may be true for most residents, there are good reasons for preferring express consent procedures. (shrink)

In this article, we introduce the Special Issue, Value Sensitive Design: Charting the Next Decade, which arose from a week-long workshop hosted by Lorentz Center, Leiden, The Netherlands, November 14–18, 2016. Forty-one researchers and designers, ranging in seniority from doctoral students to full professors, from Australia, Europe, and North America, and representing a wide range of academic fields participated in the workshop. The first article in the special issue puts forward eight grand challenges for value sensitive design to help guide (...) and shape the field. It is followed by 16 articles consisting of value sensitive design nuggets—short pieces of writing on a new idea, method, challenge, application, or other concept that engages some aspect of value sensitive design. The nuggets are grouped into three clusters: theory, method, and applications. Taken together the grand challenges and nuggets point the way forward for value sensitive design into the next decade and beyond. (shrink)

The rise of multi-stakeholder institutions (MIs) involving the ultra-processed food (UPF) industry has raised concerns among food and public health scholars, especially with regards to enhancing the legitimacy and influence of transnational food corporations in global food governance (GFG) spaces. However, few studies have investigated the governance composition and characteristics of MIs involving the UPF industry, nor considered the implications for organizing global responses to UPFs and other major food systems challenges. We address this gap by conducting a network analysis (...) to map global MIs involving the UPF industry, drawing data from web sources, company reports, business and market research databases, and academic and grey literature. We identified 45 such global food system MIs. Of these, executives from the UPF industry or affiliated interest groups held almost half (_n_ = 263, or 43.8%) of the total 601 board seat positions. Executives from a small number of corporations, especially Unilever (_n_ = 20), Nestlé (_n_ = 17), PepsiCo Inc (_n_ = 14), and The Coca-Cola Company (_n_ = 13) held the most board seat positions, indicating centrality to the network. Board seats of these MIs are dominated by executives from transnational corporations (_n_ = 431, or 71.7%), high-income countries (_n_ = 495, or 82.4%), and four countries (United States, Switzerland, United Kingdom, and the Netherlands) (_n_ = 350, or 58.2%) in particular. This study shows that MIs involving the UPF industry privilege the interests of corporations located near exclusively in the Global North, draw legitimacy through affiliations with multi-lateral agencies, civil society groups and research institutions, and represent diverse corporate interests involved in UPF supply chains. Corporate-anchored multi-stakeholderism, as a form of GFG governance, raises challenges for achieving food systems transformation, including the control and reduction of UPFs in human diets. (shrink)

Biology in the Critical Philosophy and the Opus postumum Hein van den Berg. Parts of Chap. 2 have been previously published in Hein van den Berg (2011), “ Kant's Conception of Proper Science.” Synthese 183 (1): 7–26. Parts of Chap.

In the age of Big Data, companies and governments are increasingly using algorithms to inform hiring decisions, employee management, policing, credit scoring, insurance pricing, and many more aspects of our lives. Artificial intelligence systems can help us make evidence-driven, efficient decisions, but can also confront us with unjustified, discriminatory decisions wrongly assumed to be accurate because they are made automatically and quantitatively. It is becoming evident that these technological developments are consequential to people’s fundamental human rights. Despite increasing attention to (...) these urgent challenges in recent years, technical solutions to these complex socio-ethical problems are often developed without empirical study of societal context and the critical input of societal stakeholders who are impacted by the technology. On the other hand, calls for more ethically and socially aware AI often fail to provide answers for how to proceed beyond stressing the importance of transparency, explainability, and fairness. Bridging these socio-technical gaps and the deep divide between abstract value language and design requirements is essential to facilitate nuanced, context-dependent design choices that will support moral and social values. In this paper, we bridge this divide through the framework of Design for Values, drawing on methodologies of Value Sensitive Design and Participatory Design to present a roadmap for proactively engaging societal stakeholders to translate fundamental human rights into context-dependent design requirements through a structured, inclusive, and transparent process. (shrink)

When thinking about ethics, technology is often only mentioned as the source of our problems, not as a potential solution to our moral dilemmas. When thinking about technology, ethics is often only mentioned as a constraint on developments, not as a source and spring of innovation. In this paper, we argue that ethics can be the source of technological development rather than just a constraint and technological progress can create moral progress rather than just moral problems. We show this by (...) an analysis of how technology can contribute to the solution of so-called moral overload or moral dilemmas. Such dilemmas typically create a moral residue that is the basis of a second-order principle that tells us to reshape the world so that we can meet all our moral obligations. We can do so, among other things, through guided technological innovation. (shrink)

The topic of recognition has come to occupy a central place in debates in social and political theory. Developed by George Herbert Mead and Charles Taylor, it has been given expression in the program for Critical Theory developed by Axel Honneth in his book The Struggle for Recognition. Honneth's research program offers an empirically insightful way of reflecting on emancipatory struggles for greater justice and a powerful theoretical tool for generating a conception of justice and the good that enables the (...) normative evaluation of such struggles. This 2007 volume offers a critical clarification and evaluation of this research program, particularly its relationship to the other major development in critical social and political theory; namely, the focus on power as formative of practical identities proposed by Michel Foucault and developed by theorists such as Judith Butler, James Tully, and Iris Marion Young. (shrink)

PurposeThe purpose of this study is to describe the implementation and outcomes of an Eye Movement and Desensitization Reprocessing treatment-program for women with posttraumatic stress disorder after childbirth.MethodsA prospective cohort-study with pre- and post-measurements was carried out in the setting of an academic hospital in the Netherland. Included were women who gave birth to a living child at least 4 weeks ago, with a diagnosis of PTSD, or severe symptoms of PTSD combined with another psychiatric diagnosis. All received up to (...) 8 sessions of EMDR-therapy. The posttraumatic stress disorder Checklist for DSM-5 was administered before and after treatment. Trauma history was assessed before treatment with the Life Events Checklist for the DSM-5, the Childhood Trauma Questionnaire and the Childbirth Perception Scale. Descriptive statistics were used.ResultsForty-four women were referred, 26 met the inclusion criteria. After treatment, none of the women met the criteria for diagnosis of PTSD after on average 5 weekly sessions of EMDR- therapy. These outcomes are promising, as they were achieved in women with relatively high levels of psychiatric comorbidity and high rates of previous mental health treatment.ConclusionImplementing an EMDR-treatment program for women with PTSD after childbirth in the setting of an academic hospital is feasible and effective. Key factors for success include a close collaboration between the relevant hospital departments and a thorough case conceptualization addressing the etiology of the PTSD. (shrink)

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)

Libraries provide access to large amounts of library metadata. Unfortunately, many libraries only offer textual interfaces for searching and browsing their holdings. Visualizations provide simpler, faster, and more efficient ways to navigate, search and study large quantities of metadata. This paper presents GlamMap, a visualization tool that displays library metadata on an interactive, computer-generated geographic map. We provide detailed discussion of how GlamMap benefits the work of librarians and researchers. We show how geographic representations help librarians to perform tasks such (...) as collection assessment and how geographic information helps researchers to identify important scientific resources. (shrink)