Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric (...) oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)

The relatively new practice of continuous sedation at the end of life (CS) is increasingly being debated in the clinical and ethical literature. This practice received much attention when a U.S. Supreme Court ruling noted that the availability of CS made legalization of physician-assisted suicide (PAS) unnecessary, as CS could alleviate even the most severe suffering. This view has been widely adopted. In this article, we perform an in-depth analysis of four versions of this ?argument of preferable alternative.? Our goal (...) is to determine the extent to which CS can be considered to be an alternative to PAS and to identify the grounds, if any, on which CS may be ethically preferable to PAS. (shrink)

From 1827 to 1831 the German historian Leopold von Ranke travelled through Germany, Austria, and Italy, hunting for documents and archives. During this journey Ranke developed a new model for historical research that transformed the archive into the most important site for the production of historical knowledge. Within the archive, Ranke claimed, the trained historian could forget his personal predispositions and political loyalties, and write objective history. This essay critically examines Ranke's model for historical research through a study of the (...) obstacles, frustrations, and joys that he encountered on his journey. It shows how Ranke's archival experiences inspired him to re-evaluate his own identity as a historian and as a human being, and investigates some of the affiliations between his model for historical research and the political realities of Prince Metternich's European order. Finally, the essay compares Ranke's historical discipline to other nineteenth-century disciplines, such as anthropology and archaeology. (shrink)

PART I : THE GOD-QUESTION TODAY -- God as a problem -- The denial of God in modern atheism -- The predicament of theology in the face of atheism -- Experience of God and knowledge of God -- Knowledge of God in faith. PART II : THE MESSAGE ABOUT THE GOD OF JESUS CHRIST -- God, the father almighty -- Jesus Christ, son of God -- The Holy Spirit, Lord, and giver of life. PART III : THE TRINITARIAN MYSTERY OF (...) GOD -- Establishment of the doctrine of the Trinity -- Exposition of the doctrine of the Trinity. (shrink)

When a new intervention or drug is developed, this has to pass through various phases of clinical testing before it achieves market approval, which can take many years. This raises an issue for drugs which could benefit terminally ill patients. These patients might set their hopes on the experimental drug but are unable to wait since they are likely to pass away before the drug is available. As a means of nevertheless getting access to experimental drug, many seriously ill and (...) terminally ill patients are therefore very willing to participate in randomised controlled trials. However, only very few terminally ill patients are able to actually participate, and those that do participate are at risk of participating solely as a way of getting experimental drugs. Currently, there are, however, ways of getting access to drugs that have not gained market approval. One such mean is via expanded access or compassionate use programs where terminally ill patients receive experimental new drugs that are not yet market approved. In this paper, I examine some of the common justifications for such programs. The most frequently voiced justifications for compassionate use or expanded access programs could be put in one of three categories. First, there are justifications of justice, where compassionate use programs could be seen as a just or fair way to distribute experimental new drugs to patients who are denied access to RCT’s through no fault of their own. Second, such programs could be justified by reference to the ethical principle of beneficence where it could be claimed that terminally ill patients stand to benefit greatly at very little risk. Third, there are considerations of autonomy where, it is claimed, patients should be able to exercise their autonomy and have access to such drugs if that is there free choice and they are fully aware of the risks associated with that choice. In this paper, I argue currently all justifications are potentially problematic. If they truly form the basis for justification, compassionate use programs should be designed to maximize justice, beneficence and autonomy. (shrink)

Name der Zeitschrift: Jahrgang: 13 Heft: 2 Seiten: 170-189.

Continuous deep sedation at the end of life is a practice that has been the topic of considerable ethical debate, for example surrounding its perceived similarity or dissimilarity with physician-assisted dying...

"The idea for this book arose in connection with the Workshop on Semantic functions of complementizers in European languages, which we organized in October 28-29, 2011, at the University of Copenhagen, Denmark. Around two thirds of the book chapters are elaborations on contributions to this workshop, the remaining one third arose independently of the workshop.".

BackgroundThe aim of this study is to compare depression and loneliness among adult siblings of people on the autism spectrum, adult siblings of normotypic individuals, and adults raised alone. In recent years, an increasing interest in the perspective of siblings of children diagnosed with autism has been observed, with studies among this population particularly concerned with the developmental trajectories of children and adolescents at “high risk” for ASD, rarely focusing on their mental well-being.MethodsThe respondents filled out: the survey on sociodemographic (...) data designed by the authors, Beck Depression Inventory II, and De Jong Gierveld Loneliness Scale.ResultsA rise in BDI and an increase in the DJGLS score were predicted by having a sibling diagnosed with ASD. Those effects were independent of subjects’ sex, educational status, place of residence, or a number of siblings.ConclusionThe results underline a fundamental need for the development of mental hygiene programs for families where children with autism spectrum are accompanied by healthy siblings. (shrink)

The Aristotelian Πολιτεῖαι collected information on the history and organization of reportedly 158 city-states. Of these only the Ἀθηναίων πολιτεία survives almost in its entirety on two papyri. All that remains of the other constitutions is the epitome by Heraclides Lembus and about 130 fragments. This article will look at the transmission of Heraclides’ epitome and explore the possibility of identifying further fragments of the original text.

Recently there has been some discussion concerning a particular type of enhancement, namely ‘moral enhancement’. However, there is no consensus on what precisely constitutes moral enhancement, and as a result the concept is used and defined in a wide variety of ways. In this article, we develop a clarificatory taxonomy of these definitions and we identify the criteria that are used to delineate the concept. We think that the current definitions can be distinguished from each other by the criteria used (...) for determining whether an intervention is indeed moral enhancement. For example, some definitions are broad and include moral enhancement by any means, while other definitions focus only on moral enhancement by means of specific types of intervention. Moreover, for some definitions it suffices for an intervention to be aimed or intended to morally enhance a person, while other definitions only refer to ‘moral enhancement’ in relation to interventions that are actually effective. For all these differences in definitions we discuss some of their implications. This shows that definitions are significantly less descriptive and more normative than they are regularly portrayed to be. We therefore hope that the taxonomy developed in this paper and the comments on the implications for the normative debate of the variety of definitions will provide conceptual clarity in a complex and highly interesting debate. (shrink)

The conceptual pair of own-world and common world constitutes an archaic pair, originally introduced by Heraclitus. More than two millennia after its introduction, Binswanger picked up this conceptual pair in the attempt to understand existence and mental disorder. Ever since, this conceptual pair has been part of the conceptualization of schizophrenia in phenomenological psychopathology. However, the concepts of ídios kósmos and koinós kósmos have seldomly been elaborated and expanded upon, and certain unclarities rest within the literature. This paper resolves some (...) of these unclarities and contributes to a theory of anthropological proportions, which furthers our understanding of ídios kósmos and koinós kósmos. The paper begins with an exploration of the theoretical underpinnings of this conceptual pair, i.e., it discusses the concept of world, what is understood by common world, and what it means to live in an own-world. This theoretical exploration segues into an in-depth analysis of the alterations of experiential life in schizophrenia, which can be illuminated via this conceptual pair. It is further argued that this conceptual pair contributes to an understanding of the puzzling phenomenon of double bookkeeping. Finally, the paper concludes in a discussion of clinical implications of this conceptual pair, stressing the importance of a mindfulness of the alterations to the ídios kósmos and koinós kósmos in schizophrenia. (shrink)

Cluster randomized controlled trials (cluster RCTs) randomize whole clusters of individuals in testing two or more competing interventions. Here we will present the ethical problems raised by cluster RCTs concerning their effect on inequality. We argue that some inequalities generated by cluster RCTs are larger in scope than those generated from individual RCTs. We also argue that any cluster RCT-generated inequalities, which divide groups rather than individuals, are more problematic in type than the inequalities created in individual RCTs. These concerns (...) should be taken into consideration when designing research at the cluster level, and those conducting the research should consider modified research design strategies in cases where they believe the risk of generating inequalities is large. (shrink)

_The Grundtvigian Case for Museums_ This article investigates the notion that museums are caught between two opposites when it comes to defining the institutions Raison d'être: either you entertain, or you enlighten. Using Barbara Rosenwein’s thoughts on emotional communities, this museological dichotomy between emotion and intellect is challenged by a certain ‘Grundtvigian position’ that was inspired by the philosophy of pastor poet N.F.S. Grundtvig. At the turning point of the 19 th century this position resulted in numerus museums that made (...) the radical statement: the dichotomy is false. A museum should speak to emotions _ and _ the intellect. As opposed to the rationalistic, archeological approach that the National Museum represented, the grundtvigians saw themselves as mediators of a living history that needed to be told under the pressure of modern techniques and customs. (shrink)

Pragmatism and the correspondence theory of truth are longtime foes. Nevertheless, there is an argument to be made that pragmatists must embrace truth as correspondence. I show that there is a distinctive pragmatic utility to taking truth to be correspondence, and I argue that it would be inconsistent for pragmatists to accept the utility of the belief that truth is correspondence while resisting the premise that this belief is correct. -/- In order to show how pragmatists can embrace truth as (...) correspondence, I develop a kind of alethic pluralism, which treats pragmatist truth as theoretically fundamental to truth as correspondence. This theoretical fundamentality of pragmatist truth allows the pragmatist to conditionally accept truth as correspondence for certain discourses without falling prey to the typical pragmatist objections to correspondence. This pluralist account of truth thus allows pragmatists to concede that, for certain domains of discourse, truth is correspondence, without thereby betraying their pragmatist principles. (shrink)

In The Myth of Morality Richard Joyce presents a simple and very influential argument for the truth of moral error theory. In this paper I point out that the argument does not have the form Joyce attributes to it, the argument is not valid in an extensional propositional logic and on the most natural way of explicating the meanings of the involved terms, it remains invalid. I conclude that more explanation is needed if we are to accept this particular argument (...) for moral error theory. (shrink)

This article investigates the emergence of the archive as the primary venue for the production of historical knowledge in the 19thcentury. The turn to archival research, the article argues, may be considered as a response to the discussions about the problems of testimony that dominated 18th- and early 19th-century German writings on the methodology and epistemology of historical research. These discussions, especially regarding the epistemic virtues of witnesses, also helped create the particular culture of knowledge-making within German historical scholarship that (...) enabled the archival turn. The article illustrates these developments through the examples of Johann Peter von Ludewig, who was one of the most prominent historians of the early German Enlightenment, and Leopold von Ranke, who is normally considered the founder of the modern historical discipline and the most important advocate of the 19th-century archival turn. (shrink)

In the final parts of Piketty’s Capital and Ideology, he presents his vision for a just and more equal society. This vision marks an alternative to contemporary societies, and differs radically both from the planned Soviet economies and from social democratic welfare states. In his sketch of this vision, Piketty provides a principled account of how such a society would look and how it would modify the current status of private property through co-managed enterprises and the creation of temporary ownership (...) models. He also sets out two principles for when inequalities are just. The first principle permits inequalities that are beneficial to the worst-off, while the second permits inequalities that reflect differences in people’s choices and ambitions. This article identifies a tension between Piketty’s two inequality-permitting principles. It also argues that the procedural limits on how decisions are made within the enterprises of participatory socialism might create inequalities not permitted by the guiding distributive principles of participatory socialism. This tension points to the need for either further changes in firm structure and ownership, an even more progressive taxation scheme, or an egalitarian ethos reflected in citizens’ choices in their everyday lives under participatory socialism. (shrink)