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)

For decades, the discussion on children’s competence to consent to medical issues has concentrated around normative concerns, with little progress in clinical practices. Decision-making competence is an important condition in the informed consent model. In pediatrics, clinicians need to strike a proper balance in order to both protect children’s interests when they are not fully able to do so themselves and to respect their autonomy when they are. Children’s competence to consent, however, is currently not assessed in a standardized way. (...) Moreover, the correlation between competence to give informed consent and age in children has never been systematically investigated, nor do we know which factors exactly contribute to children’s competence. (shrink)

What, at this historical moment "after Auschwitz," still remains of the questions traditionally asked by theology? What now is theology's minimal degree? This magisterial study, the first extended comparison of the writings of Theodor W. Adorno and Emmanuel Levinas, explores remnants and echoes of religious forms in these thinkers' critiques of secular reason, finding in the work of both a "theology in pianissimo" constituted by the trace of a transcendent other. The author analyzes, systematizes, and formalizes this idea of an (...) other of reason. In addition, he frames these thinkers' innovative projects within the arguments of such intellectual heirs as Jürgen Habermas and Jacques Derrida, defending their work against later accusations of "performative contradiction" (by Habermas) or "empiricism" (by Derrida) and in the process casting important new light on those later writers as well. Attentive to rhetorical and rational features of Adorno's and Levinas's texts, his investigations of the concepts of history, subjectivity, and language in their writings provide a radical interpretation of their paradoxical modes of thought and reveal remarkable and hitherto unsuspected parallels between their philosophical methods, parallels that amount to a plausible way of overcoming certain impasses in contemporary philosophical thinking. In Adorno, this takes the form of a dialectical critique of dialectics in Levinas, that of a phenomenological critique of phenomenology, each of which sheds new light on ancient and modern questions of metaphysics, ethics, and aesthetics. For the English-language publication, the author has extensively revised and updated the prize-winning German version. (shrink)

Artifacts are probably our most obvious everyday encounter with technology. Therefore, a good understanding of the nature of technical artifacts is a relevant part of technological literacy. In this article we draw from the philosophy of technology to develop a conceptualization of technical artifacts that can be used for educational purposes. Furthermore we report a small exploratory empirical study to see to what extent teachers’ intuitive ideas about artifacts match with the way philosophers write about the nature of artifacts. Finally, (...) we suggest a teaching and learning strategy for improving teachers’ concepts of technical artifacts through practical activities. (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)

Positioning technologies, such as GPS are widespread in society but are used only sparingly in behavioural science research, e.g., because processing positioning technology data can be cumbersome. The current work attempts to unlock positioning technology potential for behavioural science studies by developing and testing a research tool to analyse GPS tracks. This tool—psyosphere—is published as open-source software, and aims to extract behaviours from GPSs data that are more germane to behavioural research. Two field experiments were conducted to test application of (...) the research tool. During these experiments, participants played a smuggling game, thereby either smuggling tokens representing illicit material past border guards or not. Results suggested that participants varied widely in variables, such as course and speed variability and distance from team members in response to the presence of border guards. Subsequent analyses showed that some of these GPS-derived behavioural variables could be linked to self-reported mental states, such as fear. Although more work needs to be done, the current study demonstrates that psyosphere may enable researchers to conduct behavioural experiments with positioning technology, outside of a laboratory setting. (shrink)

Psychiatric disorders present distinct clinical challenges which are partly attributable to their multifactorial aetiology and the absence of laboratory tests that can be used to confirm diagnosis or predict risk. Psychiatric disorders are highly heritable, but also polygenic, with genetic risk conferred by interactions between thousands of variants of small effect that can be summarized in a polygenic risk score. We discuss four areas in which the use of polygenic risk scores in psychiatric research and clinical contexts could have ethical (...) implications. First, there is concern that clinical use of polygenic risk scores may exacerbate existing health inequities. Second, research findings regarding polygenic risk could be misinterpreted in stigmatising or discriminatory ways. Third, there are concerns associated with testing minors as well as eugenics concerns elicited by prenatal polygenic risk testing. Fourth, potential challenges that could arise with the feedback and interpretation of high polygenic risk for a psychiatric disorder would require consideration. While there would be extensive overlap with the challenges of feeding back genetic findings in general, the potential clinical use of polygenic risk scoring warrants discussion in its own right, given the recency of this possibility. To this end, we discuss how lay interpretations of risk and genetic information could intersect. Consideration of these factors would be necessary for ensuring effective and constructive communication and interpretation of polygenic risk information which, in turn, could have implications for the uptake of any therapeutic recommendations. Recent advances in polygenic risk scoring have major implications for its clinical potential, however, care should be taken to ensure that communication of polygenic risk does not feed into problematic assumptions regarding mental disorders or support reductive interpretations. (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)

Sellars claims completeness for both the “manifest” and the “scientific images” in a way that tempts one to assume that they are independent of each other, while, in fact, they must share at least one common element: the language of individual and community intentions. I argue that this significantly muddies the waters concerning his claim of ontological primacy for the scientific image, though not in favor of the ontological primacy of the manifest image. The lesson I draw is that we (...) need to re-assess the aims of ontology. (shrink)

Humans do two types of actions, polimorphic actions and mimeomorphic actions. The ability to carry out polimorphic actions cannot be mastered outside of socialization. Mimeomorphic actions, however, can be learned in other ways; sometimes, they can be learned away from the context of practice. Polimorphic actions cannot be mimicked by machines, but some mimeomorphic actions can. Other mimeomorphic actions are too complex to mechanize. Actions that cannot be mechanized because they are physically complicated should not be confused with actions that (...) cannot be mechanized because socialization is needed to master them. The analysis has implications for recent debates concerning the differences and similarities between humans and machines. The implica tion of the analysis is that much more can be understood about the relationship between humans and machines if the difference is treated as being a consequence of the unique properties of human societies. In this article, the analysis is applied to cardiac catheteriza tion, pacemaker implantation, simulation of bodies, and work in a medical "SkillsLab.". (shrink)

We investigated the influence of the compatibility between mood and decision strategies on the subjective value of a decision outcome. Several studies have provided evidence for the idea that a sad mood induces people to analyse information carefully, probably fitting well with a deliberative decision strategy. In a happy mood, people tend to act more strongly on their feelings, probably fitting well with an intuitive decision strategy. However, sometimes the situation demands the use of decision strategies that seem incompatible with (...) mood states. We expected that decision makers would value a decision outcome higher in the case of a fit between mood and decision strategy than in the case of a non-fit. After a mood manipulation, participants were instructed to decide either based on their first affective reaction or after deliberation. Results confirmed our expectations: fitting decisions enhanced the subjective value of a decision outcome. (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)

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)

This chapter contains sections titled: Types of Knowledge in Technology A Neglected Topic Empirical Studies Philosophical Explorations References and Further Reading.

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)

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)

Ethical arguments about caregiver responsibility and the limits of client autonomy rely on best evidence about the risks and benefits of medical interventions. But when the evidence is unclear, or when the peer-reviewed literature presents conflicting accounts of the evidence, how are clinicians and their clients to recommend or decide the best course of action? Conflicting evidence about the outcomes of home and hospital birth in the peerreviewed literature offers an opportunity to explore this question. We present the contrary evidence (...) and describe the social and cultural elements that influence the production of the science of birth, including professional, publication, and critical bias. We then consider how the science of birth has been used an misused in making ethical arguments about preferred place of birth. We conclude with a number of recommendations about the responsible use of the evidence, arguing for an “ethics of information” that can be drawn on to guide caregivers and clients in the use of evidence for clinical decision making. (shrink)

The Dutch philosopher of religion Hent de Vries has explored and complicated the boundaries between religion and modern thought in order to create the space for an innovative “minimal theology.” This article reconstructs de Vries's interpretation of the changes in Theodor W. Adorno's thought between Dialectic of Enlightenment and Negative Dialectics in order to demonstrate its fecundity for a philosophical account of otherness. It also examines and defends de Vries's own rhetorical mode of reading texts as an (...) exemplary approach to philosophical dialogue. Finally, however, the essay challenges de Vries's privileging of the religious as the site of ethical relationality and his intentional bracketing of Adorno's critical social theory. (shrink)

BackgroundCommunity engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research participants and their community from research-related risks, (...) as well as intrinsic goals such as promoting the respect of participants and their community. However, successful community engagement depends on the degree to which CABs legitimately represent and engage with communities targeted for research. Currently, there is little literature describing the use of CABs in genomics research taking place in developing countries, and even less in the field of genomics research relating to mental illness. The aim of this article is to describe and consider the contributions made by a researcher-driven, population-specific CAB in a genomics of schizophrenia research project taking place in South Africa, from the perspective of the research team.DiscussionFour broad discussion topics emerged during the CAB meetings namely: 1) informed consent procedures, 2) recruitment strategies, 3) patient illness beliefs and stigma experiences, and 4) specific ethical concerns relating to the project. The authors consider these discussions in terms of their contributions to instrumental and intrinsic goals of community engagement.SummaryThe CAB gave valuable input on the consent processes and materials, recruitment strategies and suggested ways of minimizing the potential for stigma and discrimination. All of these contributions were of an instrumental nature, and helped improve the way in which the research took place. In addition, and perhaps more importantly, the CAB made a unique and important contribution relating to intrinsic functions such as promoting the respect and dignity of research participants and their community. This was particularly evident in ensuring sensitivity and respect of the community’s traditional beliefs about schizophrenia and its treatment, and in this way promoting a respectful relationship between the research team and the participants. (shrink)

The Dutch philosopher of religion Hent de Vries has explored and complicated the boundaries between religion and modern thought in order to create the space for an innovative “minimal theology.” This article reconstructs de Vries's interpretation of the changes in Theodor W. Adorno's thought between Dialectic of Enlightenment and Negative Dialectics in order to demonstrate its fecundity for a philosophical account of otherness. It also examines and defends de Vries's own rhetorical mode of reading texts as an (...) exemplary approach to philosophical dialogue. Finally, however, the essay challenges de Vries's privileging of the religious as the site of ethical relationality and his intentional bracketing of Adorno's critical social theory. (shrink)

This study examined the ethical issues experienced by nurses working in a small group of elderly persons’ care settings in the UK, using a survey questionnaire previously used in other countries for examining the cultural aspects of ethical issues. However ‘culture’ relates not only to ethnicity but also the organizational culture in which care is delivered. Nurses working in elderly persons’ care settings described a range of issues faced when caring for elderly terminally ill people, which illustrated the different needs (...) of patients, relatives, professionals and society. These issues related to the unique needs of elderly people (such as dementia sufferers) and could have an impact on patients’ quality of death. (shrink)