Competition among scientists for funding, positions and prestige, among other things, is often seen as a salutary driving force in U.S. science. Its effects on scientists, their work and their relationships are seldom considered. Focus-group discussions with 51 mid- and early-career scientists, on which this study is based, reveal a dark side of competition in science. According to these scientists, competition contributes to strategic game-playing in science, a decline in free and open sharing of information and methods, sabotage of others’ (...) ability to use one’s work, interference with peer-review processes, deformation of relationships, and careless or questionable research conduct. When competition is pervasive, such effects may jeopardize the progress, efficiency and integrity of science. (shrink)

Donors to biobanks are typically asked to give blanket consent, allowing their donation to be used in any research authorized by the biobank. This type of consent ignores the evidence that some donors have moral, religious, or cultural concerns about the future uses of their donations – concerns we call “non-welfare interests”. The nature of non-welfare interests and their effect on willingness to donate to a biobank is not well understood. In order to better undersand the influence of non-welfare interests, (...) we surveyed a national sample of the US population using a probability-based internet panel. Logistic regression models assessed the demographic and attitudinal characteristics associated with participants’ willingness to give consent for unspecified future uses of their donation when presented with 7 research scenarios that raised possible non-welfare interest concerns. Most people had non-welfare interests that significantly affect their willingness to donate to a biobank using blanket consent. Some non-welfare interests are associated with subgroups but others are not. A positive attitude toward biomedical research in general was associated with increased willingness to donate, while concerns about privacy and being African American were associated with decreased willingness. Non-welfare interests matter and can diminish willingness to donate to a biobank. Our data suggest that trust in research promotes willingness to donate. Ignoring non-welfare interests could erode this trust. Donors’ non-welfare interests could be accommodated through greater transparency and easier access to information about the uses of donations. (shrink)

Many organizations offer their employees the opportunity to voice their opinions about work-related issues because of the positive consequences associated with offering such an opportunity. However, little attention has been given to the possibility that offering voice may have negative effects as well. We propose that negative consequences are particularly likely to occur when employees perceive the opportunity to voice opinions to be “pseudo voice”—voice opportunity given by managers who do not have the intention to actually consider employee input (i.e., (...) managerial disregard). The effects of this kind of deception were examined by means of a survey among employees (N = 137) and managers (N = 14) of a Dutch healthcare organization. We hypothesized and found that perceived pseudo voice led to reduced voice behavior and, as a result, increased intragroup conflict. These results imply that while offering voice opportunity is mostly seen as an effective management strategy, negative effects are likely to occur when a manager is perceived to try to deceive employees by pretending to be interested in their points of view. (shrink)

Deception is part of the natural repertoire of adaptive behaviours in many organisms. In humans we see it in all domains of human activity including health care. Within health care, deception can be a matter of concern, but it is also used to protect patients, for instance against overwhelming and negative diagnostics. This paper demonstrates that deception and self‐deception are closely interlinked and that self‐deception facilitates deception. Furthermore, self‐deception tends to be used to reduce the discomfort we feel when we (...) are dishonest (cognitive dissonance). The paper includes references to core psychological mechanisms and ethical aspects. (shrink)

It is not unusual for researchers to complain about institutional review board (IRB) oversight, but social scientists have a unique set of objections to the work of ethics committees. In an effort to better understand the problems associated with ethics review of social, behavioral, and economic sciences (SBES) research, this article examines 3 different aspects of research ethics committees: (a) the composition of review boards; (b) the guidelines used by these boards to review SBES - and in particular, behavioral health (...) - research; and (c) the actual deliberations of IRBs. The article concludes with recommendations for changes in the review process and with suggestions for filling the gaps in knowledge about the way IRBs work. (shrink)

This article presents the results of a study in The Netherlands among two groups of religious people: i.e., 165 Christian outpatients and 171 parishioners. In this study, we focused on the following main questions. To what degree did these two groups of Christians practice positive religious coping, negative religious coping and receptive coping? What are the relationships between these three coping strategies? To what degree were positive religious, negative religious and receptive coping activities related to the well-being of the respondents? (...) What are the best predictors of well-being: positive religious, negative religious or receptive coping? The results showed that positive religious, negative religious and receptive coping were three independent predictors of well-being, with negative religious coping being the best predictor. (shrink)

This article elaborates on Alasdair MacIntyre’s virtue ethics, exploring the plausibility of his claim that each praxis has its own appropriate set of virtues. The exploration will be applied to what I term military praxis. Firstly, the article analyses what is meant by the concept of a praxis and how a military praxis can be defined, as well as the wider purpose of military praxis. From there it proceeds to the “internal goods”, the desires, to be realized in joining the (...) military. Which are these desires that are satisfied by participating in military praxis? Next, by combining the preceding steps, the article suggests which virtues are appropriate to the military praxis, focusing on seven virtues of military character: responsibility, competence, comradeship, respect, courage, resilience and discipline. This framework is completed by practical wisdom, the military virtue of intellect. I will conclude my article by elaborating on the role of narrative in integrating the virtues and by giving some concrete directions about ways in which education in the military virtues could take place. (shrink)

Unearthing the radical potential at the heart of canonical political thought, this book uses the work of Foucault and Deleuze to re-imagine theory in a way that embraces difference and resistance.

Coping with stress has been primarily investigated as an individual-level phenomenon. In work settings, however, an individual’s exposure to demands is often shared with co-workers, and the process of dealing with these demands takes place in the interaction with them. Coping, therefore, may be conceptualized as a multilevel construct. This paper introduces the team coping concept and shows that including coping as a higher-level team property may help explain individual-level outcomes. Specifically, we investigated the effects of exposure to danger during (...) deployment on burnout symptoms in military service members and examined to what extent this relationship was moderated by individual-level and team-level functional coping. We hypothesized that the relationship between individuals’ exposure to danger and burnout is contingent on both. In line with our predictions, we found that service members who were highly exposed to danger, and did not engage in much functional coping, suffered most from burnout symptoms, but only when their teammates did not engage in much functional coping either. When their teammates did engage in much functional coping, the effect of exposure to danger on burnout was buffered. Hence, team members’ coping efforts functioned as a resilience resource for these service members. (shrink)

ABSTRACT In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This ‘empirical turn’ is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral (...) experiences of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions? In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self‐justification and bias and can increase the credibility of the RE reached. (shrink)

Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during (...) this consent process? 760 Xhose people with schizophrenia and 760 controls were matched to sex, age, level of education and recruitment region. We used descriptive statistics to determine the proportion of participants who consented to cell line creation and immortalization. Logistic regression methods were used to examine the predictors of consent. Reflections from study recruiters were elicited and discussed to identify key questions raised by participants about consent. Approximately 40% of participants consented to cell line storage. The recruiter who sought consent was a strong predictor of participant’s consent. Participants recruited from the South African Eastern Cape, and older participants, were more likely to consent; both these groups were more likely to hold traditional Xhosa values. Neither illness nor education were significant predictors of consent. Key questions raised by participants included two broad themes: clarification of what cell immortalisation means, and issues around individual and community benefit. These findings provide guidance on the proportion of participants likely to consent to cell line immortalisation in genomics research in Africa, and reinforce the important and influential role that study recruiters play during seeking of this consent. Our results reinforce the cultural and contextual factors underpinning consent choices, particularly around sharing and reciprocity. Finally, these results provide support for the growing literature challenging the stigmatizing perception that people with severe mental illness are overly vulnerable as a target group for heath research and specifically genomics studies. (shrink)

A cursory view of the history of ethical thinking shows the presence of a limited variety of 'styles of ethical reasoning', a term used in analogy of Crombie's 'styles of scientific reasoning' for systems of thought that set their own standards and techniques for providing evidence. Each style of reasoning tends to suggest a specific role for ethicists. Styles are appropriate relative to particular contexts of problems and require special institutions to flourish. Herman De Dijn's discussion in Taboes, monsters en (...) loterijen of the problems hybridsproduced in biomedicine and biotechnology pose for the symbolic order is shown to rest on two 'styles of ethical reasoning', viz, 'postulation of principles' and 'hermeneutics'. It is argued that both styles fall short, but for different reasons. 'Postulation of principles' is ill-equipped to answer problems posed by a world of change. Hermeneutics requires a pace of time and institutions not available in current society. Confronted with the problems De Dijn discusses, therefore two separate problems arise. Ethicistsnot only have to learn how to account for the hybrids that biomedicine and biotechnology produce, they also have to think about and contribute to institutional innovation. Rather than opening a space for discussing both tasks, De Dijn's styles of reasoning close off this matter. (shrink)

*Work on this paper was funded in part by NIH grant K01-AT00054, National Center for Complementary and Alternative Medicine. Know then thyself, presume not God to scan The proper study of mankind i...

Sara Ahmed was among the first academics to openly support students’ Palestine solidarity encampments. She asserts that such encampments function similarly to complaints, targeting mechanisms that perpetuate and normalise violence. Ahmed’s work conceptualises complaints as forms of resistance that expose institutional power structures, often maintained through ‘straightening devices’; mechanisms that align behaviors with institutional norms, encouraging certain practices while discouraging others. The solidarity encampments exemplify Ahmed’s phenomenological approach and embodied feminist politics, highlighting how affect shapes social dynamics within institutions and (...) can reconfigure them. This essay examines these protests as embodied complaints that disrupt the status quo and challenge established institutional orientations to effect policy change. Ahmed’s concepts of the ‘feminist killjoy’ and ‘straightening devices’ provide a framework to explore the impact of these encampments on academic institutions and the protesters themselves. By analyzing situated moments from a roundtable discussion with activists involved in these movements, this essay reveals how institutional responses often aim to neutralise dissent and maintain existing power relations. The essay underscores the challenges and potential of embodied resistance in confronting institutional complicity in systemic violence. (shrink)

This article discusses the relation between empirical and normative approaches in bioethics. The issue of dwarf tossing, while admittedly unusual, is chosen as a point of departure because it challenges the reader to look with fresh eyes upon several central bioethical themes, including human dignity, autonomy, and the protection of vulnerable people. After an overview of current approaches to the integration of empirical and normative ethics, we consider five ways that the empirical and normative can be brought together to speak (...) to the problem of dwarf tossing: prescriptive applied ethics, theoretical ethics, critical applied ethics, particularist ethics and integrated empirical ethics. We defend a position of critical applied ethics that allows for a two-way relation between empirical and normative theories. Against efforts fully to integrate the normative and the empirical into one synthesis, we propose that the two should stand in tension and relation to one another. The approach we endorse acknowledges that a social practice can and should be judged both by the gathering of empirical data and by normative ethics. Critical applied ethics uses a five stage process that includes: (a) determination of the problem, (b) description of the problem, (c) empirical study of effects and alternatives, (d) normative weighing and (e) evaluation of the effects of a decision. In each stage, we explore the perspective from both the empirical (sociological) and the normative ethical point of view. We conclude by applying our five-stage critical applied ethics to the example of dwarf tossing. (shrink)

Concepts for sustainable bioeconomy systems are gradually replacing the ones on linear product chains. The reason is that continuously expanding linear chain activities are considered to contribute to climate change, reduced biodiversity, over-exploitation of resources, food insecurity, and the double burden of disease. Are sustainable bioeconomy systems a guarantee for a healthy planet? If yes, why, when, and how? In literature, different sustainability indicators have been presented to shed light on this complicated question. Due to high degrees of complexity and (...) interactions of actors in bioeconomy systems, trade-offs and non-linear outcomes became apparent. This fueled the debates about the normative dimensions of the bioeconomy. In particular, the behavior of actors and the utilization of products do not seem to be harmonized according to the environmental, social, and economic pillars of sustainability. Potential conflicts require a new conceptual framework that is here introduced. It consists of a ‘sustainability’ cylinder captured between an inner-cylinder, representing order, and an outer-cylinder for chaos, based on the laws of physics and complex adaptive systems. Such a framework permits (bioeconomy) systems to propagate in the sustainability zone only if they follow helical pathways serving as the new norms. Helices are a combination of two sinusoidal patterns. The first represents here the sustainable behavior of interacting actors and the second the balanced usage of resources and products. The latter counteracts current growth discourses. The applicability of the conceptual cylinder framework is positively verified via 9 cases in Europe, which encompass social-organizational and product-technological innovations. –. (shrink)

If religion once seemed to have played out its role in the intellectual and political history of Western secular modernity, it has now returned with a vengeance. In this engaging study, Hent de Vries argues that a turn to religion discernible in recent philosophy anticipates and accompanies this development in the contemporary world. Though the book reaches back to Immanuel Kant, Martin Heidegger, and earlier, it takes its inspiration from the tradition of French phenomenology, notably Emmanuel Levinas, Jean-Luc Marion, (...) and, especially, Jacques Derrida. Tracing how Derrida probes the discourse on religion, its metaphysical presuppositions, and its transformations, de Vries shows how this author consistently foregrounds the unexpected alliances between a radical interrogation of the history of Western philosophy and the religious inheritance from which that philosophy has increasingly sought to set itself apart. De Vries goes beyond formal analogies between the textual practices of deconstruction and so-called negative theology to address the necessity for a philosophical thinking that situates itself at once close to and at the farthest remove from traditional manifestations of the religious and the theological. This paradox is captured in the phrase adieu ( à dieu ), borrowed from Levinas, which signals at once a turn toward and a leave-taking from God -- and which also gestures toward and departs from the other of this divine other, the possibility of radical evil. Only by confronting such uncanny and difficult figures, de Vries claims, can one begin to think and act upon the ethical and political imperatives of our day. (shrink)

Modern Proposals for Regulating Ecocide: pragmatic, ideological or diplomatic. Towards a legal concept befitting the ecological challenges of our time. This article argues that the current debate on ecocide law is gridlocked due to an overlooked incongruency within the 2021 Independent Expert Panel’s ecocide proposal. To reinvigorate the discussion, the Panel’s proposal is compared with earlier proposals by Polly Higgins and Richard Falk. Analysis of the challenges, objectives, and legal solutions in each proposal reveals a respectively ideological, diplomatic or pragmatic (...) approach. Incongruencies are found in Higgins’ and the Panel’s proposals, while Falk’s proposal shows consistency. The incongruence between the challenges, objectives and legal solutions arguably has its roots in fundamental methodological discrepancies between ideal and non-ideal theory. For a juridically viable solution a congruent non-ideal approach should be adopted, resulting in a multitude of laws and regulations addressing various objectives that are often incompatible in one singular article to effectively tackle environmental challenges. (shrink)

An account of the Rosicrucian manifestos, and in particular their call for a general reformation, in relation to medieval and early modern traditions and reform programs.

The introduction of genomics and biobanking methodologies to the African research context has also introduced novel ways of doing science, based on values of sharing and reuse of data and samples. This shift raises ethical challenges that need to be considered when research is reviewed by ethics committees, relating for instance to broad consent, the feedback of individual genetic findings, and regulation of secondary sample access and use. Yet existing ethics guidelines and regulations in Africa do not successfully regulate research (...) based on sharing, causing confusion about what is allowed, where and when. In order to understand better the ethics regulatory landscape around genomic research and biobanking, we conducted a comprehensive analysis of existing ethics guidelines, policies and other similar sources. We sourced 30 ethics regulatory documents from 22 African countries. We used software that assists with qualitative data analysis to conduct a thematic analysis of these documents. Surprisingly considering how contentious broad consent is in Africa, we found that most countries allow the use of this consent model, with its use banned in only three of the countries we investigated. In a likely response to fears about exploitation, the export of samples outside of the continent is strictly regulated, sometimes in conjunction with regulations around international collaboration. We also found that whilst an essential and critical component of ensuring ethical best practice in genomics research relates to the governance framework that accompanies sample and data sharing, this was most sparingly covered in the guidelines. There is a need for ethics guidelines in African countries to be adapted to the changing science policy landscape, which increasingly supports principles of openness, storage, sharing and secondary use. Current guidelines are not pertinent to the ethical challenges that such a new orientation raises, and therefore fail to provide accurate guidance to ethics committees and researchers. (shrink)

Several studies have observed an inverse relationship between attention deficit hyperactivity disorder -related behavior of children, as reported by parents or teachers, and the amount of green space in their residential environment. Research using other, more objective measures to determine ADHD prevalence is scarce and could strengthen the evidence base considerably. In this study, it is investigated whether a similar beneficial association will be observed if the use of ADHD-related medication is selected as an outcome measure. More specifically, registry data (...) from a health insurance company on the reimbursement of ADHD-related medication in 2011 were available for 248,270 children between 5 and 12 years of age. Amounts of green space within 250 and 500 m of the home address were calculated. Multilevel logistic regression analyses for the prevalence of use were conducted, including the following covariates: sex, age, urbanity of the neighborhood, neighborhood socioeconomic status, and percentage of people with a non-Western migration background in the neighborhood population. Results showed that the amount of green space was inversely related to the prevalence of use of ADHD medication. Moreover, the relationship was strongest among children living in the least wealthy neighborhoods and absent among those living in the wealthiest neighborhoods. Results also show that in less wealthy neighborhoods, there is, on average, less green space available nearby: children who are likely to benefit most from nearby green space tend to have the least of it. (shrink)

To analyse and explain Charles Taylor′s understanding of secularity in terms of “optionality” or “plurality” and to illuminate the nature of the hypothetical stance and the virtuality of beliefs it entails requires one to engage in a larger than empirical and, as it were, deeper than merely historical inquiry, one that is, if not metaphysical, then at least ontological or pre-ontological. The conditions of the secular age should, on this view, not be confused with the epistemological or, more broadly normative, (...) criteriological terms that categorize experience and the search for the spiritual “fullness”. As a consequence, neither specific elements or forms of belief nor their successive repudiation, neither historical nor empirical, neither sociological nor psychological findings will ever allow us to determine where or when, exactly, secularity begins, let alone suspect whether it might very well come to an end. What is required is, rather, to take a step back and to investigate why and how the advocacy of “public secularity” and the broader assumption of the eventual practical and existential demise or irrelevance of faith – which has been falsified by recent trends and current affairs in “global religion” – could have emerged as a theoretical construct at all. (shrink)

Bruno Latour is among the most important figures in contemporary philosophy and social science. His ethnographic studies have revolutionized our understanding of areas as diverse as science, law, politics and religion. To facilitate a more realistic understanding of the world, Latour has introduced a radically fresh philosophical terminology and a new approach to social science, ‘Actor-Network Theory’. In seminal works such as Laboratory Life, We Have Never Been Modern and An Inquiry into Modes of Existence, Latour has outlined an alternative (...) to the foundational categories of ‘modern’ western thought Ð particularly its distinction between society and nature Ð that has major consequences for our understanding of the ecological crisis and of the role of science in democratic societies. Latour’s ‘empirical philosophy’ has evolved considerably over the past four decades. In this lucid and compelling book, Gerard de Vries provides one of the first overviews of Latour’s work. He guides readers through Latour’s main publications, from his early ethnographies to his more recent philosophical works, showing with considerable skill how Latour’s ideas have developed. This book will be of great value to students and scholars attempting to come to terms with the immense challenge posed by Latour’s thought. It will be of interest to those studying philosophy, anthropology, sociology, science and technology studies, and almost all other branches of the social sciences and humanities. (shrink)

The silencing of the epistemologies, theories, principles, values, concepts and experiences of the global South constitutes a particularly egregious epistemic injustice in bioethics. Our shared responsibility to rectify that injustice should be at the top of the ethics agenda. That it is not, or only is in part, is deeply problematic and endangers the credibility of the entire field. As a first step towards reorienting the field, this paper offers a comprehensive account of epistemic justice for global health ethics. We (...) first introduce several different conceptions of justice and decolonisation in relation to knowledge, purposefully drawing on work emanating from the global South as well as the global North. We then apply those conceptions to the global health ethics context to generate a tripartite account of the layers of epistemic justice in the field: who is producing ethics knowledge; what theories and concepts are being applied to produce ethics knowledge; and whose voices are sought, recorded and used to generate ethics knowledge. These layers reflect that the field spans conceptual and empirical research. We conclude by proposing that, going forward, three avenues are key to achieve greater epistemic justice at each layer and to help decolonise global health ethics: namely, understanding the problem, dialogue and structural change. (shrink)

Okay, Professor Turner is not Rodney King. He is not responding to bioethicists and social scientists running amuck, setting automobiles aflame, and pelting each other with rocks and broken bottles. He does not come right out and ask, “Why can't we all just get along?” But in its academic way, Turner's essay is an effort to negotiate a truce in the interdisciplinary squabbles that plague bioethics, a plea to move bioethics beyond the “misleading” and “unhelpful” “demarcation of disciplinary goals” that (...) leads to “dichotomous thinking” and “polemical accusations.”. (shrink)

Love, sex, and physical intimacy are some of the most desired goods in life and they are increasingly being sought on dating apps such as Tinder, Bumble, and Badoo. For those who want a leg up in the chase for other people’s attention, almost all of these apps now offer the option of paying a fee to boost one’s visibility for a certain amount of time, which may range from 30 min to a few hours. In this article, I argue (...) that there are strong moral grounds and, in countries with laws against unconscionable contracts, legal ones for thinking that the sale of such visibility boosts should be regulated, if not banned altogether. To do so, I raise two objections against their unfettered sale, namely that it exploits the impaired autonomy of certain users and that it creates socio-economic injustices. (shrink)

The rise of genomic studies in Africa – not least due to projects funded under H3Africa – is associated with the development of a small number of biorepositories across Africa. For the ultimate success of these biorepositories, the creation of cell lines including those from selected H3Africa samples would be beneficial. In this paper, we map ethical challenges in the creation of cell lines.

Providing equitable food security for a growing population while minimizing environmental impacts and enhancing resilience to climate shocks is an ongoing challenge. Here, we quantify the resource intensity, environmental impacts and nutritional output of a small (0.075 ha) low-input subsistence Mediterranean agroecological farm in a developed nation that is based on intercropping and annual crop rotation. The farm provides one individual, the proprietor, with nutritional self-sufficiency (adequate intake of an array of macro- and micro-nutrients) with limited labor, no synthetic fertilizers (...) or herbicides, and zero waste, effectively closing a full farm-table-farm cycle. We find that the agroecological farm outperforms conventional farming as practiced in the same country in terms of both lower environmental burdens, across all examined environmental metrics (63% lower on average) per kg produce, and higher nutritional score (66% higher on average). Per equal farmland, the environmental lopsidedness was even higher (79% lower than conventional farming on average), with nearly the same nutritional score (3% lower on average). Moreover, when considering total land area, which includes farmland and supporting non-agricultural lands, as well as postgate impacts and food losses, the advantage of the agroecological system over conventional farming is even more pronounced. Situated within a Mediterranean region that is undergoing rapid climate change, this food system is a unique case study of nutrition- and environment-oriented food production system. While its deployment potential is limited by lack of supportive policies, it nonetheless represents one of the most starkly bold alternatives to current food systems. (shrink)

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)

Wearing black make-up to impersonate black individuals has become highly controversial in many countries, even when it is part of long-standing cultural traditions. Prominent examples of such traditions include Saint Nicolas celebrations in the Netherlands (which feature a black character known as “Black Pete” who hands out candy to children), Epiphany parades in Spain (which feature impersonations of the biblical king Balthasar who is traditionally portrayed as black) and the annual Zulu parade in New Orleans (which features impersonations of South (...) African Zulu warriors). In this article, I challenge the widely held view that black make-up traditions are categorically wrong. Specifically, I argue that these traditions can be morally vindicated if (i) the large majority of individuals who help to maintain them do not believe that they denigrate black people; (ii) the relevant traditions do not depict black people in denigrating ways; and (iii) the relevant traditions are not gratuitously offensive. While the Dutch Saint Nicholas tradition fails to satisfy these conditions, the New Orleans Zulu tradition is found to satisfy them, as is the Spanish Epiphany tradition in certain cases. I end by identifying another set of conditions under which black make-up traditions might be morally justified. (shrink)

BackgroundThe quality of ethics consults is notoriously difficult to measure. Survey-based assessments cannot capture nuances of consultations. To address this gap, we conducted interviews with health professionals who requested ethics consults during the initial phase of the COVID-19 pandemic.MethodHealthcare professionals requesting ethics consultation between March 2020 and May 2020 at a tertiary academic medical centre were eligible to participate. We asked participants to comment on the consults they called and thematically analysed responses to identify features associated with optimal quality consultations.ResultsOf (...) 14 healthcare providers, 8 (57%) were women and professions were as follows: 11 (79%) medical doctors, 1 (7%) social worker, 1 (7%) physician assistant and 1 (7%) nurse practitioner. Two aspects of quality emerged: satisfaction and value. Themes within the domain of satisfaction included: responsiveness of the ethics consultant, willingness to consult, institutional role of the ethics service and identifying areas for improvement. When describing value, respondents spoke of the intrapersonal and interpersonal worth of consultation.ConclusionParticipants were generally satisfied with ethics consultation services, similar to opinions of those found in pre-COVID-19 survey studies. Our qualitative approach allowed for a richer exploration of the value of ethics consultation during the pandemic and has implications for ethics consultation services more broadly. Ethics consultation—emphasising both the process and outcome—created valuable moral spaces, promoting thoughtful and ethical responses to dilemmas in patient care. Future assessments should incorporate patient and family/surrogate perspectives and explore the domain of education as an additional quality measure. (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.

Subjects enrolled in studies testing high risk interventions for incurable or progressive brain diseases may be vulnerable to deficiencies in informed consent, such as the therapeutic misconception. However, the definition and measurement of the therapeutic misconception is a subject of continuing debate. Our qualitative pilot study of persons enrolled in a phase I trial of gene transfer for Parkinson disease suggests potential avenues for both measuring and preventing the therapeutic misconception. Building on earlier literature on the topic, we developed and (...) tested an interview guide that focuses on how the subjects decided to participate, emphasizing the integration of subjects’ various statements that are relevant to assessing the therapeutic misconception, rather than evaluating them as isolated statements. The results indicate that a subject’s understanding of the purpose of research is best explored in juxtaposition to the subject’s motivation for participating. (shrink)

Whereas most current theories on emotions posit a central position to goals, direct tests of associations between emotions and goals have been sparse. We investigated such relations by comparing ratings of value importance and frequency of emotional experiences in daily life. The results confirmed our general expectation that associations would be found between values and emotions related to corresponding goals. We argue that data like these are fundamental to further development of emotion theory.