As of October 23, 2020, almost 42 million cases of COVID-19 have been reported globally. Although many different treatments have been applied in infected...

Health technology assessment (HTA) is often biased in the sense that it neglects relevant perspectives on the technology in question. To incorporate different perspectives in HTA, we should pursue agreement about what are relevant, plausible, and feasible research questions; interactive technology assessment (iTA) might be suitable for this goal. In this way a kind of procedural ethics is established. Currently, ethics too often is focussed on the application of general principles, which leaves a lot of confusion as to what really (...) is the matter in specific cases; in an iTA clashes of values should not be approached by use of such ethics. Instead, casuistry, as a tool used within the framework of iTA, should help to articulate and clarify what is the matter, as to make room for explication and consensus building. (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)

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)

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)

We would like to respond to the comment we received from our colleagues on our case report about organ donation after euthanasia starting at home. We reply to their statements on medical and legal aspects, and provide more information on our view of informed consent.

Decision outcomes sometimes result in negative emotions. This can occur when a decision appears to be wrong in retrospect, and/or when the obtained decision outcome does not live up to expectations. Regret and disappointment are the two emotions that are of central interest in the present article. Although these emotions have a lot in common, they also differ in ways that are relevant to decision making. In this article we review theories and empirical findings concerning regret and disappointment. We first (...) discuss how regret and disappointment differ with respect to their antecedent conditions, appraisals, and phenomenology. We also discuss possible behavioural consequences of experiencing these emotions. Next, we consider how the anticipation of regret and disappointment may influence decision making. We use regret and disappointment theory, developed by the economists Bell (1982, 1985), and Loomes and Sugden (1982, 1986, 1987), as a framework for our discussion. Finally, we argue that combining the theoretical approaches and research paradigms of behavioural decision theory with emotion theories will significantly increase our knowledge of antecedents and consequences of emotions. (shrink)

Studies in the behavioral ethics and moral psychology traditions have begun to reveal the important roles of self-related processes that underlie moral behavior. Unfortunately, this research has resulted in two distinct and opposing streams of findings that are usually referred to as moral consistency and moral compensation. Moral consistency research shows that a salient self-concept as a moral person promotes moral behavior. Conversely, moral compensation research reveals that a salient self-concept as an immoral person promotes moral behavior. This study’s aim (...) was to integrate these two literatures. We argued that compensation forms a reactive, “damage control” response in social situations, whereas consistency derives from a more proactive approach to reputation building and maintenance. Two experiments supported this prediction in showing that cognitive depletion (i.e., resulting in a reactive approach) results in moral compensation whereas consistency results when cognitive resources are available (i.e., resulting in a proactive approach). Experiment 2 revealed that these processes originate from reputational (rather than moral) considerations by showing that they emerge only under conditions of accountability. It can thus be concluded that reputational concerns are important for both moral compensation and moral consistency processes, and that which of these two prevails depends on the perspective that people take: a reactive or a proactive approach. (shrink)

In the present article, we argue that the constant pressure that leaders face may limit the willpower required to behave according to ethical norms and standards and may therefore lead to unethical behavior. Drawing upon the ego depletion and moral self-regulation literatures, we examined whether self-regulatory depletion that is contingent upon the moral identity of leaders may promote unethical leadership behavior. A laboratory experiment and a multisource field study revealed that regulatory resource depletion promotes unethical leader behaviors among leaders who (...) are low in moral identity. No such effect was found among leaders with a high moral identity. This study extends our knowledge on why organizational leaders do not always conform to organizational goals. Specifically, we argue that the hectic and fragmented workdays of leaders may increase the likelihood that they violate ethical norms. This highlights the necessity to carefully schedule tasks that may have ethical implications. Similarly, organizations should be aware that overloading their managers with work may increase the likelihood of their leaders transgressing ethical norms. (shrink)

BackgroundFor many decades, the debate on children’s competence to give informed consent in medical settings concentrated on ethical and legal aspects, with little empirical underpinnings. Recently, data from empirical research became available to advance the discussion. It was shown that children’s competence to consent to clinical research could be accurately assessed by the modified MacArthur Competence Assessment Tool for Clinical Research. Age limits for children to be deemed competent to decide on research participation have been studied: generally children of 11.2 (...) years and above were decision-making competent, while children of 9.6 years and younger were not. Age was pointed out to be the key determining factor in children’s competence. In this article we reflect on policy implications of these findings, considering legal, ethical, developmental and clinical perspectives.DiscussionAlthough assessment of children’s competence has a normative character, ethics, law and clinical practice can benefit from research data. The findings may help to do justice to the capacities children possess and challenges they may face when deciding about treatment and research options. We discuss advantages and drawbacks of standardized competence assessment in children on a case-by-case basis compared to application of a fixed age limit, and conclude that a selective implementation of case-by-case competence assessment in specific populations is preferable. We recommend the implementation of age limits based on empirical evidence. Furthermore, we elaborate on a suitable model for informed consent involving children and parents that would do justice to developmental aspects of children and the specific characteristics of the parent-child dyad.SummaryPrevious research outcomes showed that children’s medical decision-making capacities could be operationalized into a standardized assessment instrument. Recommendations for policies include a dual consent procedure, including both child as well as parents, for children from the age of 12 until they reach majority. For children between 10 and 12 years of age, and in case of children older than 12 years in special research populations of mentally compromised patients, we suggest a case-by-case assessment of children’s competence to consent. Since such a dual consent procedure is fundamentally different from a procedure of parental permission and child assent, and would imply a considerable shift regarding some current legislations, practical implications are elaborated. (shrink)

This study aims to contribute to emerging human-robot interaction research by adding longitudinal findings to a limited number of long-term social robotics home studies. We placed 70 robots in users’ homes for a period of up to six months, and used questionnaires and interviews to collect data at six points during this period. Results indicate that users’ evaluations of the robot dropped initially, but later rose after the robot had been used for a longer period of time. This is congruent (...) with the so-called mere-exposure effect, which shows an increasing positive evaluation of a novel stimulus once people become familiar with it. Before adoption, users focus on control beliefs showing that previous experiences with robots or other technologies allows to create a mental image of what having and using a robot in the home would entail. After adoption, users focus on utilitarian and hedonic attitudes showing that especially usefulness, social presence, enjoyment and attractiveness are important factors for long-term acceptance. (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)

The modern critical approach to things hagiographical still wavers when it comes to taking leave of twelve lines of iambic invective, branded with wonderful delicacy of touch on the saintly foreheads of two Palestinian brothers, Theodore and Theophanes, the so-called “Graptoi”. Barry Baldwin, noting that C.A. Trypanis, unlike the great B. Bury and others, was inclined to disbelieve the story, could not help expressing the hope that it was true (An Anthology of Byzantine Poetry, Amsterdam 1985, pp. 142–3). It is (...) of course only one of the many stories concocted by iconodule propaganda. The central question has to be formulated in more general terms: how is history made? History here primarily in the sense of the construction of the past by the Byzantines themselves, was embodied in historical narratives moving between hagiography and historiography. Trying to lay bare the basis and elements of such constructs will always remain a major task of critical historical scholarship. (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)

Pain and posttraumatic stress disorder frequently co-occur but underlying mechanisms are not clear. This study aimed to test the development and maintenance of pain and PTSD symptom clusters, i.e., intrusions, avoidance, and hyperarousal. The longitudinal study included 216 adults with burns. PTSD symptom clusters, indexed by the Impact of Event Scale-Revised, and pain, using a graphic numerical rating scale, were measured during hospitalization, 3 and 6 months post-burn. Cross-lagged panel analysis was used to test the relationships between pain and PTSD (...) symptom clusters. Cross-lagged results showed that in-hospital intrusions predicted pain and avoidance 3 months post-burn. In-hospital pain predicted intrusions and avoidance 3 months post-burn and a trend was found for hyperarousal. In the second wave, intrusions predicted pain and hyperarousal. Pain predicted hyperarousal. This study provides support for an entangled relationship between pain and PTSD symptoms, and particularly subscribes the role of intrusions in this bidirectional relationship. To a lesser extent, hyperarousal was unidirectionally related to pain. These results may subscribe the driving role of PTSD, particularly intrusions, which partly supports the Perpetual Avoidance Model. (shrink)

PurposeTo explore the mindfulness practice, its long-term effects, facilitators and barriers, in clinical clerkship students 2 years after participation in an 8-week mindfulness-based stress reduction training.MethodA qualitative study was performed by semi-structured in-depth interviews with 16 clinical clerkship students selected by purposive sampling. Students had participated in a MBSR training 2 years before and were asked about their current mindfulness practice, and the long-term effects of the MBSR training. Thematic analysis was conducted using the constant comparison method. Data saturation was (...) reached after 16 interviews.ResultsMost interviewees were still engaged in regular, predominantly informal, mindfulness practice, although some discontinued mindfulness practice and reported an “unchanged lifestyle.” Three main themes came forward; “focused attention and open awareness” during daily activities as core elements of long-term mindfulness practice; “changes in behavior and coping” that resulted from taking a pause, reflecting, recognizing automatic behavioral patterns and making space for a conscious response; “integration in personal and professional life” by enhanced enjoyment of daily activities, improved work-life-balance and making different career choices. Barriers and facilitators in starting and maintaining mindfulness practice were understanding and intention as “pre-conditions”; practical, personal, and professional factors of students in maintaining practice.ConclusionTwo years after participation in a MBSR training, many interviewees were still engaged in mindfulness practice contributing to both personal and professional changes. In light of the high clerkship demands, MBSR training could be a valuable addition to medical curricula, supporting medical students in developing necessary competencies to become well-balanced professionals. (shrink)

Background In neonatal intensive care, a child's death is often preceded by a medical decision. Nurses, social workers and pastors, however, are often excluded from ethical case deliberation. If multiprofessional ethical case deliberations do take place, participants may not always know how to perform to the fullest. Setting A level-IIID neonatal intensive care unit of a paediatric teaching hospital in the Netherlands. Methods Structured multiprofessional medical ethical decision-making (MEDM) was implemented to help overcome problems experienced. Important features were: all professionals (...) who are directly involved with the patient contribute to MEDM; a five-step procedure is used: exploration, agreement on the ethical dilemma/investigation of solutions, analysis of solutions, decision-making, planning actions; meetings are chaired by an impartial ethicist. A 15-item questionnaire to survey staff perceptions on this intervention just before and 8 months after implementation was developed. Results Before and after response rates were 91/105 (87%) and 85/113 (75%). Factor analysis on the questionnaire suggested a four-factor structure: participants' role; structure of MEDM; content of ethical deliberation; and documentation of decisions/conclusions. Effect sizes were 1.67 (p<0.001), 0.69 (p<0.001) and 0.40 (p<0.01) for the first three factors respectively, but only 0.07 (p=0.65) for the fourth factor. Nurses' perceptions of improvement did not significantly exceed those of physicians. Conclusion Professionals involved in ethical case deliberation perceived that the process of decision-making had improved; they were more positive about the structure of meetings, their own role and, to some extent, the content of ethical deliberation. Documentation of decisions/conclusions requires further improvement. (shrink)

European elites are racist, and have been racist for a long time. Their racism is not limited to « words » and « ideas », but constitutes an pervasive and influent social practice which generates, towards the minorities, concrete forms of ethnic inequality and subordination in everyday life.

Background: The banking of biological samples raises a number of ethical issues in relation to the storage,export and re-use of samples. Whilst there is a growing body of literature exploringparticipant perspectives in North America and Europe, hardly any studies have been reportedin Africa. This is problematic in particular in light of the growing amount of research takingplace in Africa, and with the rise of biobanking practices also on the African continent. Inorder to investigate the perspectives of African research participants, we (...) conducted a studywith research participants in a TB study in the Western Cape, South Africa. Methods: Semi-structured interviews were conducted using an interview guide which drew on the mostprominent themes expressed in current literature on sample storage, re-use and exportation.Interviews were conducted in Afrikaans and subsequently translated into English by the sameinterviewer. Interviews were transcribed verbatim and analysed qualitatively. Results: The results of our study indicate that the majority of participants were supportive of givingone-time consent to the storage and re-use of their samples. The concept of research being fora "good cause" was a central prerequisite. Additionally, a significant minority requested thatthey be re-contacted if a future use was not stipulated on the original consent. There was alsoconsiderable variation in how participants understood the concept of a 'good cause', withparticipants describing three distinct categories of research, of which two were generallythought to constitute 'good cause' research. Research that was for-profit was considered tofall outside the spectrum of 'good cause' research. Participants displayed confidence in theabilities of the researchers to make future decisions regarding sample use, but seemedunaware of the role of ethics committees in either this process or more generally. Conclusions: Participants expressed a wide and complex range of views about issues of sample storage andre-use, and they showed a great deal of trust in researchers. Participants' willingness to havetheir samples stored and re-used is consistent with findings from existing studies. However,in contrast to existing literature, participants were generally not in favour of for-profitresearch. Further research needs to be done to explore these ideas in other communities, bothin South Africa and other countries. (shrink)

Ethical failures are all around. Despite their pervasiveness, we know little how to manage and even survive the aftermath of such failures. In this paper, we develop the argument that as business ethics researchers we need to zoom in more closely on why ethical failures emerge, and how these insights can help us to be effective ethical leaders that can increase moral awareness and manage distrust. To succeed in this scientific enterprise, we advocate the use of a behavioral business ethics (...) approach that relies on insights from psychology. (shrink)

Background Genuine uncertainty on superiority of one intervention over the other is called equipoise. Physician-investigators in randomized controlled trials need equipoise at least in studies with more than minimal risks. Ideally, this equipoise is also present in patient-participants. In pediatrics, data on equipoise are lacking. We hypothesize that 1) lack of equipoise at enrolment among parents may reduce recruitment; 2) lack of equipoise during participation may reduce retention in patients assigned to a less favoured treatment-strategy. Methods We compared preferences of (...) parents/patients at enrolment, documented by a questionnaire, with preferences developed during follow-up by an interview-study to investigate equipoise of child-participants and parents in the BeSt-for-Kids-study. This trial in new-onset Juvenile Idiopathic Arthritis-patients consists of three strategies. One strategy comprises initial treatment with a biological disease-modifying-antirheumatic-drug, currently not standard-of-care. Semi-structured interviews were conducted with 23 parents and 7 patients, median 11 months after enrolment. Results Initially most parents and children were not in equipoise. Parents/patients who refused participation, regularly declined due to specific preferences. Many participating families preferred the biological-first-strategy. They participated to have a chance for this initial treatment, and would even consider stopping trial-participation when not randomized for it. Their conviction of superiority of the biological-first strategy was based on knowledge from internet and close relations. According to four parents, the physician-investigator preferred the biological-first-strategy, but the majority stated that she had no preferred strategy. In phase 2, preferences tended to change to the treatment actually received. Conclusions Lack of equipoise during enrolment did not reduce study recruitment, mainly due to the fact that preferred treatment was only available within the study. Still, when developing a trial it is important to evaluate whether the physicians’ research question is in line with preferences of the patient-group. By exploring so-called ‘informed patient-group’-equipoise, successful recruitment may be enhanced and bias avoided. In our study, lack of equipoise during trial-participation did not reduce retention in those assigned to a less favoured option. We observed a change for preference towards treatment actually received, possibly explained by comparable outcomes in all three arms. (shrink)

We studied the role of social dynamics in moral decision-making and behavior by investigating how physical sensations of dirtiness versus cleanliness influence moral behavior in leader–subordinate relationships, and whether a leader’s self-interest functions as a boundary condition to this effect. A pilot study revealed that when participants imagined rewarding unethical behavior of a subordinate, they felt more dirty. Our main experiment showed that directly manipulating dirtiness by allowing leaders to touch a dirty object led to more positive evaluations of, and (...) higher bonuses for, unethical subordinates than touching a clean object. This effect, however, only emerged when the subordinate’s unethical behavior did not serve the leader’s own interest. Hence, subtle cues such as bodily sensations can shape moral decision-making and behavior in leader–subordinate relationships, but self-interest, as a core characteristic of interdependence, can override the influence of such cues on the leader’s moral behavior. (shrink)

Researchers have emphasized the value of authenticity, but not much is known about what makes a person authentic in the eyes of others. Our research takes an interpersonal perspective to examine the determinants of followers’ perceptions of leader authenticity. Building on social identity theory, we propose that two fundamental self-identifications–a leader’s sense of uniqueness and sense of belongingness–interact to influence followers’ perceptions of a leader’s authenticity via perceptions of a leader’s self-concept consistency. In a field study conducted among leader–follower dyads (...) and in a controlled laboratory experiment, we find that when a leader feels a low sense of belongingness, there is a positive relationship between a leader’s sense of uniqueness and perceptions of leader authenticity. When a leader feels a low sense of uniqueness, there is a positive relationship between a leader’s sense of belongingness and perceptions of leader authenticity. This is because followers perceive this leader as having high self-concept consistency. (shrink)

Punishment and forgiveness are two very different responses to a moral transgression that both have been argued to restore perceptions of moral order within an organization. Unfortunately, it is currently unclear what motivates organizational actors to punish or forgive a norm transgressor. We build on social cognitive theory to argue that punishment and forgiveness of a transgressor are both rooted in self-regulatory processes. Specifically, we argue that organizational actors are more likely to respond to intentional transgressions with punishment, and to (...) unintentional transgressions with forgiveness. However, these effects of transgressor intentionality should be found in particular among actors for whom moral identity is central. We find support for these predictions in a laboratory experiment and a field study among organizational leaders. By simultaneously studying punishment and forgiveness in organizational settings, we provide crucial insight in their shared motivational bases, as well as into important differences between the two. (shrink)

Logical frameworks for analysing the dynamics of information processing abound [4, 5, 8, 10, 12, 14, 20, 22]. Some of these frameworks focus on the dynamics of the interpretation process, some on the dynamics of the process of drawing inferences, and some do both of these. Formalisms galore, so it is felt that some conceptual streamlining would pay off.This paper is part of a larger scale enterprise to pursue the obvious parallel between information processing and imperative programming. We demonstrate that (...) logical tools from theoretical computer science are relevant for the logic of information flow. More specifically, we show that the perspective of Hoare logic [13, 18] can fruitfully be applied to the conceptual simplification of information flow logics. (shrink)