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)

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.

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)

Background: The 21-item Nurses’ Moral Courage Scale was developed and validated in 2018 in Finland with the purpose of measuring moral courage among nurses. Objectives: The objective of this study was to make a Dutch translation of the Nurses’ Moral Courage Scale to describe the level of nurses’ self-assessed moral courage and associated socio-demographic factors in Flanders, Belgium. Research design: A forward–backward translation method was applied to translate the English Nurses’ Moral Courage Scale to Dutch, and a pilot study was (...) conducted to improve readability and understandability. A non-experimental, descriptive cross-sectional exploratory design was used to conduct a survey. Descriptive analysis was used. Participants: The data were collected from a convenience sample of 559 nurses from two hospitals in Flanders. Ethical considerations: Ethical approval was obtained from the university ethics committee, permission to conduct the study was obtained from the participating hospitals. Participants received a guide letter and gave their informed consent. Findings: The readability and understandability of the Dutch Nurses’ Moral Courage Scale were positively evaluated, and the scale revealed a good level of internal consistency for the total scale and all subscales. Nurses’ mean score of the 21-item Nurses’ Moral Courage Scale was 3.77. The total Nurses’ Moral Courage Scale score was associated with age, experience, professional function, level of education and personal interest. Discussion and Conclusion: The Nurses’ Moral Courage Scale was successfully translated to Dutch. The Flemish nurses perceived themselves as morally courageous, especially when they were in a direct interpersonal relationship with their patients. Acting courageously in ethical dilemmas that involved other actors or organizations appeared to be more challenging. The results strongly suggest the important role of education and ethical leadership in developing and supporting this essential virtue in nursing practice. (shrink)

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 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.".

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)

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)

Name der Zeitschrift: Cognitive Linguistics Jahrgang: 27 Heft: 1 Seiten: 67-100.

Owen Griffiths has recently argued that Etchemendy’s account of logical consequence faces a dilemma. Etchemendy claims that we can be sure that his account does not overgenerate, but that we should expect it to undergenerate. Griffiths argues that if we define the relationship between formal and natural language as being dependent on logical consequence, then Etchemendy’s claims are not true; and if we define the relationship as being independent of logical consequence, then we cannot assess the truth of the claims (...) without further information. I argue that Griffiths misconstrues Etchemendy’s theory and overstates the first horn of the dilemma: Etchemendy does see the relationship as being dependent on logical consequence, but that does not mean that his claims are not true. (shrink)

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

In 2002 with the passing of the Euthanasia Law, Belgium became one of the few countries worldwide to legalize euthanasia. In the 18 years since the passing of the law, much has changed. We argue that in Belgium a widening of the use of euthanasia is occurring and that this can be ethically and legally problematic. This is in part related to the fact that several legal requirements intended to operate as safeguards and procedural guarantees in reality often fail to (...) operate as such. We focus on three kinds of safeguards or procedural guarantees: the legally defined due care criteria for eligibility for euthanasia; the consultation of a second physician; and the reporting of euthanasia cases to the Federal Control and Evaluation Commission for Euthanasia. We will show how each of these three safeguards can exhibit shortcomings in theory and practice. (shrink)

Recombination maps of ancestral species can be constructed from comparative analyses of genomes from closely related species, exemplified by a recently published map of the human‐chimpanzee ancestor. Such maps resolve differences in recombination rate between species into changes along individual branches in the speciation tree, and allow identification of associated changes in the genomic sequences. We describe how coalescent hidden Markov models are able to call individual recombination events in ancestral species through inference of incomplete lineage sorting along a genomic (...) alignment. In the great apes, speciation events are sufficiently close in time that a map can be inferred for the ancestral species at each internal branch ‐ allowing evolution of recombination rate to be tracked over evolutionary time scales from speciation event to speciation event. We see this approach as a way of characterizing the evolution of recombination rate and the genomic properties that influence it. (shrink)

Relational egalitarianism says that moral equals should relate as equals. We explore how moral unequals should relate.

The all-affected principle is a widely accepted solution to the problem of constituting the demos. Despite its popularity, a basic question in relation to the principle has not received much attention: why does the fact that an individual is affected by a certain decision ground a right to inclusion in democratic decision-making about that matter? An answer to this question must include a reason that explains why an affected individual should be included because she is affected. We identify three such (...) reasons in the literature – to wit, interest protection, self-government and welfare – and show why they all fail. We then propose two alternative reasons, equal relations and fairness, and show why they are also deficient. Surprisingly, the all-affected principle then appears groundless, which supports withholding belief in the all-affected principle or(/and) investing future research in identifying the thus-far unidentified reason why being affected grounds a claim to inclusion. (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)

Construed as a theory of justice, relational egalitarianism says that justice requires that people relate as equals. Construed as a theory of what makes democracy valuable, it says that democracy is a necessary, or constituent, part of the value of relating as equals. Typically, relational egalitarians want their theory to provide both an account of what justice requires and an account of what makes democracy valuable. We argue that relational egalitarians with this dual ambition face the justice-democracy dilemma: Understanding social (...) relations in such a way that renders relational egalitarianism plausible as an answer to what makes democracy valuable comes at the price of understanding social relations in a way that makes it less plausible as a theory of justice, and vice versa. We also argue that there is no easy way out of the dilemma and that relational egalitarians, who want relational equality to provide both accounts mentioned, may simply have to set their ambitions lower on behalf of relational equality. (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)

Surveys in different countries (e.g. the UK, Belgium and The Netherlands) show a marked recent increase in the incidence of continuous deep sedation at the end of life (CDS). Several hypotheses can be formulated to explain the increasing performance of this practice. In this paper we focus on what we call the ‘natural death’ hypothesis, i.e. the hypothesis that acceptance of CDS has spread rapidly because death after CDS can be perceived as a ‘natural’ death by medical practitioners, patients' relatives (...) and patients.We attempt to show that the label ‘natural’ cannot be unproblematically applied to the nature of this end-of-life practice. We argue that the labeling of death following CDS as ‘natural’ death is related to a complex set of mechanisms which facilitate the use of this practice. However, our criticism does not preclude the view that CDS may be clinically and ethically justified in many cases. (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)

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 practice is generally considered to be legal as a form of symptom control, although this is mostly only assumed. France has passed an amendment to the Public Health Act that would grant certain terminally ill patients an explicit right to continuous deep sedation until they pass away. Such a (...) framework would be unique in the world. In this paper we will highlight and reflect on four relevant aspects and shortcomings of the proposed bill. First, that the bill suggests that continuous deeps sedation should be considered as a sui generis practice. Second, that it requires that sedation should always be accompanied by the withholding of all artificial nutrition and hydration. In the most recently amended version of the legal proposal it is stated that life sustaining treatments are withheld unless the patient objects. Third, that the French bill would not require that the suffering for which continuous deep sedation is initiated is unbearable. Fourth, the question as to whether the proposal should be considered as a way to avoid having to decriminalise euthanasia and/or PAS or, on the contrary, as a veiled way to decriminalise these practices. The French proposal to amend the Public Health Act to include a right to continuous deep sedation for some patients is a unique opportunity to clarify the legality of continuous deep sedation as an end-of-life practice. Moreover, it would recognize that the practice of continuous deep sedation raises ethical and legal issues that are different from those raised by symptom control on the one hand and assisted dying on the other hand. Nevertheless, there are still various issues of significant ethical concern in the French legislative proposal. (shrink)

Following considerable debate, the practice of euthanasia was legalized in Belgium in 2002, thereby making Belgium one of the few places in the world where this practice is legal. In 2014 the law was amended for the first time. The 2014 amendment makes euthanasia legally possible for all minors who repeatedly and voluntarily request euthanasia and who are judged to possess “capacity of discernment”, as well as fulfil a number of other criteria of due care. This extension of the 2002 (...) euthanasia law generated a lot of national and international debate and has been applauded by many and heavily criticized by others. This evolution is clearly of interest to end-of-life debates in the entire world. This paper will therefore describe how this amendment came to get passed using official documents from Belgium's Senate and Chamber of Representatives where this amendment was discussed and subsequently passed. Next, some of the most commonly given arguments in favour of the law are identified, as well as the arguments most often voiced against the amendment. All these arguments will be expanded upon and it will be examined whether they hold up to ethical scrutiny. Analysing the official documents and identifying the most commonly voiced arguments gives valuable insight into how Belgium came to amend its euthanasia law and why it did so in 2014. It also becomes clear that although the current amendment is often seen as far-reaching, more radical ideas were proposed during the drafting of the law. Also, in analysing those arguments in favour of the amendment and those against, it is clear that the validity of some of these is questionable. (shrink)

The aim of this article is to examine whether informational manipulation, used intentionally by the researcher to increase recruitment in the research study, can be morally acceptable. We argue that this question is better answered by following a non-normative account, according to which the ethical justifiability of informational manipulation should not be relevant to its definition. The most appropriate criterion by which informational manipulation should be considered as morally acceptable or not is the researcher’s special moral duties towards their subjects. (...) We also propose that a broader definition of manipulation of information should be adopted (than that already existing in the literature) since informational manipulation can affect not only a person’s beliefs but also their desires in decision-making. We conclude that manipulation of information can either be used to protect the potential subject and facilitate the informed consent process or be used to exploit and merely use a person for scientific goals. (shrink)