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)

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)

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)

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)

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)

Introduction Introduction / Jan de Vries 1 Art in History / Gary Schwartz 7 History in Art / J. W. Smit 17 Pt. I Art and Reality Market Scenes As Viewed by an Art Historian / Linda Stone-Ferrier 29 Market Scenes As Viewed by a Plant Biologist / Willem A. Brandenburg 59 Marine Paintings and the History of Shipbuilding / Richard W. Unger 75 Skies and Reality in Dutch Landscape / John Walsh 95 Some Notes on Interpretation / E. (...) de Jongh 119 Are These Girls Really So Neat? On Kitchen Scenes and Method / Jochen Becker 139 Didactic and Disguised Meanings? Several Seventeenth-Century Texts on Painting and the Iconological Approach to Northern Dutch Paintings of This Period / Eric J. Sluijter 175 The Changing Face of Realism / Lyckle de Vries 209 Pt. II Art, Economy, and Society Art History / Jan de Vries 249 The Volume and Value of Paintings in Holland at the Time of the Dutch Republic / Ad van der Woude 285 Works of Art in Seventeenth-Century Amsterdam: An Analysis of Subjects and Attributions / John Michael Montias 331 Conclusion Science, Commerce, and Art: Neglected Topics at the Junction of History and Art History / David Freedberg 377 Biographical Notes on the Authors 429 Index. (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)

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

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)

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)

ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with (...) RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (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)

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)

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)

This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of (...) ‘integrating’ empirical methods and ethical argument as a standard for research practice within empirical bioethics. (shrink)

New Zealand’s curriculum, in terms of its approach to technological literacy, attempts to deliver a sound, philosophy-­based understanding of the nature of technology. The curriculum’s main authors claim that it conforms well to Mitcham’s (2014) categorization of different aspects of technology’s nature. Nevertheless, taking advantage of the existing literature of the philosophy of technology, this paper will reveal that the intended urriculum, though an admirable approach, still has a number of points needing improvement, and there are also certain gaps to (...) be bridged in the claimed conformity. This analysis primarily makes use of the method initiated by Nia and De Vries (2016a), based upon Mitcham’s suggested framework and other philosophers’ opinions as to the nature and various features of technology. (shrink)

The technological literacy of students has recently become one of the primary goals of education in countries such as the USA, England, New Zealand, Australia, and so forth. However the question here is whether these educations - their long-term policy documents as well as the standards they provide in particular - address sufficient learning about the nature of technology. This seems to be an important concern that through taking advantage of the philosophy of technology (the arena which affords a bountiful (...) ground of various reflections on the nature of technology) is intended to be discussed throughout this study. In the first place, the paper presents a relevant framework based upon Mitcham's (1994) four-aspect account of technology, i.e., technology as objects, knowledge, activities, and volition. Then it categorizes the main relevant concepts and concerns put forward by many other philosophers of technology into this framework; this will yield a concrete model (tool) to analyze any intended standard such as the above mentioned ones. Afterwards, to show how this model works, the well-known case of the USA - Standards for Technological Literacy (ITEA, 2007) - will be used as an example for inspection; the results will disclose the points where the current American case needs to be modified. (shrink)

The Roberta Kevelson Seminar on Law and Semiotics is integrated in the regular program of a US Law School and student enrollment is honored with credit points. Hitherto, the study of Legal Semiotics has mainly been located outside the Law Schools in the US and the Faculties of Law in the EU. Two important questions within the more general theme of Legal Semiotics and Legal Education arose: (1) the program requirements in an education context, and (2) the attention and interests (...) of the students. This IJSL issue offers essays presented during the Round Table which closed the Seminar, provides some experience-based suggestions for a Seminar program and discusses how to deal with the pragmatic attitude of law students. It interests how those topics relate to legal and semiotic literature and how they focus globally important viewpoints, as can be concluded in the example of the legal semiotics of family structures. (shrink)

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)

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)

ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with (...) RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with RHDGen participants, study staff (...) and with individuals who refused to participate. In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

In 2014, the editorial board of BMC Medical Ethics came together to devise sections for the journal that would give structure to the journal help ensure that authors’ research is matched to the most appropriate editors and help readers to find the research most relevant to them. The editorial board decided to take a practical approach to devising sections that dealt with the challenges of content management. After that, we started thinking more theoretically about how one could go about classifying (...) the field of medical ethics. This editorial elaborates and reflects on the practical approach that we took at the journal, then considers an alternative theoretically derived approach, and reflects on the possibilities, challenges and value of classifying the field more broadly. (shrink)