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)

The problem of disease definition is related to theproblem of proving that a certain agent is thenecessary cause of a certain disease. Natural kindterms like ‘rheumatoid arthritis’ and ‘AIDS’ refer toessences which are discoverable rather thanpredeterminate. No statement about such diseases isa priori necessarily true. Because theories onnecessary causes involve natural kind semantics,Koch's postulates cannot be used to falsify or verifysuch theories. Instead of proving that agent A is thenecessary cause of disease D, we include A in atheoretical definition of (...) D, take this to representthe real meaning of ‘D’, and discard thepretheoretical definition. This is illustrated byKoch's own attempt to prove he had discovered thenecessary cause of tuberculosis. Methodologicalarguments about disease causation require a clear viewof our use of diagnostic terms. Medical lexicographersshould do more to provide such a view. (shrink)

Engineering, as a complex and multidimensional practice of technology development, has long been a source of ethical concerns. These concerns have been approached from various perspectives. There are ongoing debates in the literature of the philosophy of engineering/technology about how to organize an optimized view of the values entailed in technology development processes. However, these debates deliver little in the way of a concrete rationale or framework that could comprehensively describe different types of engineering values and their multi-aspect interrelations in (...) real engineering practices. Approaching engineering values from a meaning-based perspective, as in this paper, can be a reliable method of tackling such a controversial problem. This paper therefore proposes that technology development be considered a systemic normative practice and attempts to provide a comprehensive view of various built-in values, their different origins and features, and a way of prioritizing them in real engineering processes. Studying two cases of the Zayandeh Rood Dam and the Abbasi Dam will lead to practical insights into how to understand norms in technology development and incorporate them into engineering practice. (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)

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 practice of making datasets publicly available for use by the wider scientific community has become firmly integrated in genomic science. One significant gap in literature around data sharing concerns how it impacts on scientists’ ability to preserve values and ethical standards that form an essential component of scientific collaborations. We conducted a qualitative sociological study examining the potential for harm to ethnic groups, and implications of such ethical concerns for data sharing. We focused our empirical work on the MalariaGEN (...) Consortium, one of the first international collaborative genomics research projects in Africa. (shrink)

One can love and not forgive or out of love decide not to forgive. Or one can forgive but not love, or choose to forgive but not love the ones forgiven. Love and forgiveness follow parallel and largely independent paths, a truth we fail to acknowledge when we pressure others to both love and forgive. Individuals in conflict, sparring social and ethnic groups, warring religious communities, and insecure nations often do not need to pursue love and forgiveness to achieve peace (...) of mind and heart. They need to remain attentive to the needs of others, an alertness that prompts either love or forgiveness to respond. By reorienting our perception of these enduring phenomena, the contributors to this volume inspire new applications for love and forgiveness in an increasingly globalized and no longer quite secular world. With contributions by the renowned French philosophers Jacques Derrida and Jean-Luc Marion, the poet Haleh Liza Gafori, and scholars of religion, psychoanalysis, Islamic and political philosophy, and the Bible and literature, this anthology reconstructs the historical and conceptual lineage of love and forgiveness and their fraught relationship over time. By examining how we have used--and misused--these concepts, the authors advance a better understanding of their ability to unite different individuals and emerging groups around a shared engagement for freedom and equality, peace and solidarity. (shrink)

In their article, Fabi and Goldberg discuss concerns of racial injustice and the continued exclusion of people—based on race—in ethics research funding allocation, and how that impacts knowl...

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)

Interactive technology assessment (iTA) provides an answer to the ethical problem of normative bias in evaluation research. This normative bias develops when relevant perspectives on the evaluand (the thing being evaluated) are neglected. In iTA this bias is overcome by incorporating different perspectives into the assessment. As a consequence, justification of decisions based on the assessment is provided by stakeholders having achieved agreement. In this article, agreement is identified with wide reflective equilibrium to show that it indeed has the potential (...) of justifying decisions. We work out several conditions for this agreement to be achievable and just. (shrink)

From 1991 to 1994 the Dutch Health Insurance Council financed research on Extracorporeal Membrane Oxygenation (ECMO). This is a technique for providing cardiopulmonary bypass to patients with pulmonary and/or cardiac failure. Most often, these patients are premature neonates. During ECMO, blood is drained from the right atrium, pumped along a membrane where gas exchange takes place, and then redirected to the aorta. To prevent blood clotting, heparin is added. However, with the heparin added, the risk of hemorrhage is considerably increased. (...) Therefore, both the chance of surviving and the chance of severe disability are higher with ECMO than with conventional treatment (i.e., ventilator support). (shrink)

The cell assembly as a simple attractor cannot explain many cognitive phenomena. It must be a highly structured network that can sustain highly structured excitation patterns. Moreover, a cell assembly must be more widely distributed in space than on a square millimeter.

Since current water governance patterns mandate cooperation and partnership within and between the actors in the hydrosystems, supplementary models are necessary to distinguish the roles and the rules of indoor actions which is why we extend a theory in the frameworks of philosophy of technology. This analysis is empirically grounded on the problematic hydrosystems of a river in central Iran, Zayandehrud. Following a modernist-holistic-based analysis, it illustrates how values in the water apportionment mechanisms are being reshaped. The article by using (...) the theory of normative practice has scrutinised the tasks and the rules of the old and new water-management systems, Mirab. Subsequently according to such philosophical theory, it has argued that the conflicts over the cases are due to interference of structural and directional norms within them. (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)

Tradução para o português do ensaio "Freedom and Resentment”, de P. F. Strawson. Publicado originalmente em Proceedings of the British Academy, v. 48, 1960. Republicado em Freedom and Resentment and Other Essays. Londres: Methuen, 1974. [Routledge, 2008, p. 2-28]. Publicado na coletânea: Ensaios sobre a filosofia de Strawson: com a tradução de Liberdade e ressentimento & Moralidade social e ideal individual. Organizadores: Jaimir Conte & Itamar Luís Gelain. Editora da UFSC, 2015. ISBN: 9788532807250.

Tradução para o português do ensaio "Social Morality and Individual Ideal”. Publicado originalmente em Philosophy: The Journal of the Royal Institute of Philosophy, vol. XXXVI, n. 136, p. 1-17, Jan. 1961. Republicado em: STRAWSON, P. F. Freedom and Resentment and Other Essays. Londres: Methuen, 1974. [Routledge, 2008, p. 26-44]. ]. Publicado na coletânea: Ensaios sobre a filosofia de Strawson: com a tradução de Liberdade e ressentimento & Moralidade social e ideal individual. Organizadores: Jaimir Conte & Itamar Luís Gelain. Editora da (...) UFSC, 2015. ISBN: 9788532807250. (shrink)