For a significant number of patients, there exists no, or only little, interest in developing a treatment for their disease or condition. Especially with regard to rare diseases, the lack of commercial interest in drug development is a burning issue. Several interventions have been made in the regulatory field in order to address the commercial disinterest in these conditions. However, existing regulations mainly focus on the provision of incentives to the sponsors of clinical trials of orphan drugs, and leave unanswered (...) the overarching question about the rightful place of orphan drugs in resource allocation systems. In this article, we analyse the ethical aspects of funding research and development in the field of rare diseases. We then propose an ethical framework that can help health policy makers move forward in the difficult matter of fairly allocating resources for the prevention, diagnosis and treatment of rare diseases. (shrink)

Crespi & Badcock (C&B) present an appealing and parsimonious synthesis arguing that schizophrenia and autism are differentially regulated by maternal versus paternal genomic imprinting, respectively. We argue that animal models related to schizophrenia and autism provide a useful platform to explore the mechanisms outlined by C&B. We also note that schizophrenia and autism share certain risk factors such as advanced paternal age. Apart from genomic imprinting, copy number variants related to advanced paternal age may also contribute to the differential trajectory (...) of brain development associated with autism and schizophrenia. (shrink)

Archaeology takes up material fragments from distant and recent pasts to create narratives of personal and collective identity. It is, therefore, a powerful voice shaping our current and future social worlds. Feminist theory has to date made little reference to archaeology and its projects, in part because archaeologists have primarily chosen to work with normative forms of gender theory rather than forge new theory informed by archaeological insights. This paper argues that archaeology has considerably more potential for feminist theorizing than (...) has so far been recognized. In particular it is uniquely placed to build theory for understanding change, transition and transformation over extended time periods, a potential explored through an archaeological case study of Pacific Northwest Coast people. In conclusion, some possibilities for expanding this case study into a wider comparative perspective are sketched out. (shrink)

Psychology has benefited from an enormous wealth of knowledge about processes of cognition in relation to how the brain organizes information. Within the categorization literature, this behavior is often explained through theories of memory construction called exemplar theory and prototype theory which are typically based on similarity or rule functions as explanations of how categories emerge. Although these theories work well at modeling highly controlled stimuli in laboratory settings, they often perform less well outside of these settings, such as explaining (...) the emergence of background knowledge processes. In order to explain background knowledge, we present a non-similarity-based post-Skinnerian theory of human language called Relational Frame Theory which is rooted in a philosophical world view called functional contextualism. This theory offers a very different interpretation of how categories emerge through the functions of behavior and through contextual cues, which may be of some benefit to existing categorization theories. Specifically, RFT may be able to offer a novel explanation of how background knowledge arises, and we provide some mathematical considerations in order to identify a formal model. Finally, we discuss much of this work within the broader context of general semantic knowledge and artificial intelligence research. (shrink)

BackgroundBefore participation in medical research an informed consent must be obtained. This study investigates whether the readability of patient information and consent documents corresponds to the average educational level of participants in rheumatological studies in the Netherlands, Denmark, and Norway.Methods24 PICDs from studies were collected and readability was assessed independently using the Gunning’s Fog Index and Simple Measure of Gobbledygook grading.ResultsThe mean score for the FOG and SMOG grades were 14.2 and 14.2 respectively. The mean FOG and SMOG grades were (...) 12.7 and 13.3 in the Dutch studies, 15.0 and 14.9 in the Danish studies, and 14.6 and 14.3 in the Norwegian studies, respectively. Out of the 2865 participants, more than 57 % had a lower educational level than the highest readability score calculated in the individual study.ConclusionsAs the readability level of the PICDs did not match the participants’ educational level, consent may not have been valid, as the participants may have had a limited understanding of what they agreed to participate in. There should be more focus on the readability of PICDs. National guidelines for how to write clear and unambiguous PICDs in simple and easily understandable language could increase the focus on the readability of PICD. (shrink)

Language is a cognitively demanding human trait, but it is also a fundamentally cooperative enterprise that rests on the motivation to share information. Great apes possess many of the cognitive prerequisites for language, but largely lack the motivation to share information. Callitrichids (including marmosets and tamarins) are highly vocal monkeys that are more distantly related to humans than great apes are, but like humans, they are cooperative breeders and all group members help raising offspring. Among primates, this rearing system is (...) correlated with proactive prosociality, which can be expressed as motivation to share information. We therefore propose that the unique coincidence of these two components in humans set the stage for language evolution: The cognitive component inherited from our great ape-like ancestors, and the motivational one added convergently as a result of cooperative breeding. We evaluate this scenario based on a review of callitrichd vocal communication and show that furthermore, they possess many of the mechanistic elements emphasized by the mirror system hypothesis of language evolution. We end by highlighting how more systematic phylogenetic comparisons will enable us to further promote our understanding of the role of cooperative breeding during language evolution. (shrink)

Here we question the mechanisms underlying the emergence of the feeling of control that can be modulated even when the feeling of being the author of one’s own action is intact. With a haptic robot, participants made series of vertical pointing actions on a virtual surface, which was sometimes postponed by a small temporal delay (15 or 65 ms). Subjects then evaluated their subjective feeling of control. Results showed that after temporal distortions, the hand-trajectories were adapted effectively but that the (...) feeling of control decreased significantly. This was observed even in the case of subliminal distortions for which subjects did not consciously detect the presence of a distortion. Our findings suggest that both supraliminal and subliminal temporal distortions that occur within a healthy perceptual–motor system impact the conscious experience of the feeling of control of self-initiated motor actions. (shrink)

In their target article, Conley et al. (2023) appropriately highlight the ongoing conceptual and practical opacity of public engagement (PE) in the translation of human gene editing (HGE) (Conley e...

Given the recent ethics scandals in the United States, there has been a renewed focus on understanding the antecedents to ethical decision-making in the research literature. Since ethical norms and standards of behavior are not universally consistent, an individual’s choice of referent may exert a large influence on his/her ethical decision-making. This study used a social identity theory lens to empirically examine the relative influence of the macro- and micro-level variables of national culture and peers on an individual’s intention to (...) behave ethically. Our sample consisted of respondents from Germany, Italy, and Japan. The results indicated that both national culture and peers were found to act as significant referents in ethical decision-making dilemmas. Although peers exerted a much stronger influence on an individual’s ethical decision-making, the impact of peers varied depending on the national culture levels of individualism and power distance. (shrink)

Mit Beiträgen von Heiner Hastedt, Peter Schefe, Michael Heidelberger, Wolfgang Coy, Peter Janich, Sybille Krämer, Heinz Zemanek, Rafael Capurro, Ekkehard Martens, Yvonne Dittrich, Holm Tetens, Geert Keil, John R. Searle, Margaret A. Boden, Godela Unseld, Ulrike Teubner, Rüdiger Weingarten, Florian Rötzer und Simone Dietz.

Hermeneutic research in nursing: developing a Gadamerian‐based research method This paper takes the stance that although there are many different approaches to phenomenological and hermeneutic research, some of these have become blurred due to multiple interpretations of translated materials. Working from original texts by the German philosophers, this paper reconsiders the relevance of phenomenology and hermeneutics to nursing research. We trace the development of Gadamer's philosophy in order to propose a research method based in this tradition. Five steps have been (...) identified as a guide for nurse researchers. These are deciding upon a question, identification of preunderstandings, gaining understanding through dialogue with participants, gaining understanding through dialogue with text and establishing trustworthiness. (shrink)

BackgroundBiobanks are considered to be key infrastructures for research development and have generated a lot of debate about their ethical, legal and social implications. While the focus has been on human genomic research, rapid advances in human microbiome research further complicate the debate.DiscussionWe draw on two cystic fibrosis biobanks in Toronto, Canada, to illustrate our points. The biobanks have been established to facilitate sample and data sharing for research into the link between disease progression and microbial dynamics in the lungs (...) of pediatric and adult patients. We begin by providing an overview of some of the ELSI associated with human microbiome research, particularly on the implications for the broader society. We then discuss ethical considerations regarding the identifiability of samples biobanked for human microbiome research, and examine the issue of return of results and incidental findings. We argue that, for the purposes of research ethics oversight, human microbiome research samples should be treated with the same privacy considerations as human tissues samples. We also suggest that returning individual microbiome-related findings could provide a powerful clinical tool for care management, but highlight the need for a more grounded understanding of contextual factors that may be unique to human microbiome research.ConclusionsWe revisit the ELSI of biobanking and consider the impact that human microbiome research might have. Our discussion focuses on identifiability of human microbiome research samples, and return of research results and incidental findings for clinical management. (shrink)

BackgroundIn our globalizing world, caregivers are increasingly being confronted with the challenges of providing intercultural healthcare, trying to find a dignified answer to the vulnerable situation of ethnic minority patients. Until now, international literature lacks insight in the intercultural care process as experienced by the ethnic minority patients themselves. We aim to fill this gap by analysing qualitative literature on the intercultural care encounter in the hospital setting, as experienced by ethnic minority patients.MethodsA systematic search was conducted for papers published (...) between 2000 and 2015. Analysis and synthesis were guided by the critical interpretive synthesis approach.ResultsFifty one articles were included. Four dimensions emerged, describing the intercultural care encounter as a meeting of two different cultural contexts of care, in a dynamic and circular process of balancing between the two cultural contexts, which is influenced by mediators as concepts of being human, communication, family members and the hospital’s organizational culture.ConclusionsThis review provides in-depth insight in the dynamic process of establishing intercultural care relationships in the hospital. We call for a broader perspective towards cultural sensitive care in which patients are cared for in a holistic and dignity-enhancing way. (shrink)

This volume deals with the question of value-perception. It is discussed from different philosophical, psychiatric, theological, and anthropological perspectives. The leading hypothesis of all contributions is the realization that we live in a relational, dynamic world, in which we primarily percieve, and that to dissolve values from facts is fundamentally misleading, both in theory as in life."--Back cover.

Business Ethics: A European Review, EarlyView.

Empathy is crucial for the quality of social interactions and thus highly relevant in human service professions. At the same time, people belonging to this occupational group are especially vulnera...

In the Netherlands, in 2002, euthanasia became a legitimate medical act, only allowed when the due care criteria and procedural requirements are met. Legally, an Advanced Euthanasia Directive can replace direct communication if a patient can no longer express his own wishes. In the past decade, an exponential number of persons with dementia share a euthanasia request with their physician. The impact this on physicians, and the consequent support needs, remained unknown. Our objective was to gain more insight into the (...) experiences and needs of Dutch general practitioners and elderly care physicians when handling a euthanasia request from a person with dementia. We performed a qualitative interview study. Participants were recruited via purposive sampling. The interviews were transcribed verbatim, and analyzed using the conventional thematic content analysis. Eleven general practitioners and elderly care physicians with a variety of experience and different attitudes towards euthanasia for PWD were included. Euthanasia requests appeared to have a major impact on physicians. Difficulties they experienced were related to timing, workload, pressure from and expectations of relatives, society’s negative view of dementia in combination with the ‘right to die’ view, the interpretation of the law and AEDs, ethical considerations, and communication with PWD and relatives. To deal with these difficulties, participants need support from colleagues and other professionals. Although elderly care physicians appreciated moral deliberation and support by chaplains, this was hardly mentioned by GPs. Euthanasia requests in dementia seem to place an ethically and emotionally heavy burden on Dutch GPs and elderly care physicians. The awareness of, and access to, existing and new support mechanisms needs further exploration. (shrink)

The ‘What Being the Parent of a New Baby is Like-Revised’ is an instrument designed to measure adaptation to parenthood. In the process of pilot testing and validating the WPL-R in a postpartum Dutch population, we became aware of the potentially sensitive nature of the measure. Despite the ethics committee waiving the invasive nature of the measure, we conducted a survey to explore its possible effect on women’s thoughts and emotions by using the Positive And Negative Affect Schedule to measure (...) changes associated with completion of the WPL-R. Two hundred and fifteen questionnaires were returned. Our findings indicated a change in PANAS scores, implying an intervening effect when using the WPL-R, in research. This raises the question of whether it is acceptable to use a questionnaire with postpartum women without any knowledge of the possible effect it may have, even though the ethics committee has approved the study and considers the measure to be non-invasive. (shrink)

Using a Web search engine is one of today’s most frequent activities. Exploratory search activities which are carried out in order to gain knowledge are conceptualized and denoted as Search as Learning. In this paper, we introduce a novel framework model which incorporates the perspective of both psychology and computer science to describe the search as learning process by reviewing recent literature. The main entities of the model are the learner who is surrounded by a specific learning context, the interface (...) that mediates between the learner and the information environment, the information retrieval backend which manages the processes between the interface and the set of Web resources, that is, the collective Web knowledge represented in resources of different modalities. At first, we provide an overview of the current state of the art with regard to the five main entities of our model, before we outline areas of future research to improve our understanding of search as learning processes. (shrink)

Given the known hazards of nuclear energy in seismically active Japan after the Fukushima meltdowns as well as the presence of viable conservation and renewable energy options, the question of Japan’s stalled energy transition warrants critical interrogation. To better understand why, after Fukushima, Japan’s energy policy trajectory maintained the nuclear status quo and an increased reliance on fossil fuels, this article employs network and historical analyses to examine the confluence of post-Fukushima political forces connected to Japan’s nuclear energy sector. Our (...) novel network dataset combines with historical analysis to identify a dense network of overlapping executives and officials in Japan that forge long-term ties between the nuclear energy industry, the state, and the leading business federation in Japan. Following the 3.11 disaster and the meltdowns at the Fukushima-Daiichi facility, a long-standing nuclear safety myth and a tightly networked nuclear energy industrial complex provided an ideological and structural context to re-legitimize nuclear energy in spite of widespread public concern. Instead of a bold, ecologically rational policy to quickly phase out nuclear power and phase in renewable energy, well-worn class and state networks aligned to recommit Japan to a nuclear-reliant energy path. These findings support a theoretical synthesis around our concept of an energy industrial complex with applications in environmental and political sociology. (shrink)

The earnings of African American women increased throughout the 1960s and 1970s, yet by the 1980s there were signs of a reversal. Using data from the 1980 and 1990 censuses of population, this study examines the deterioration in Black women's earnings across the 1980s. The authors ask what caused the earnings reversal given the improvements in Black women's human capital and industrial locations. The study finds that while the returns to schooling and industrial distribution improved over the decade, these gains (...) were offset by the negative effects of changing family structure, nonmetropolitan residence, and occupational redistribution. Noteworthy is the fact that despite higher returns for public sector employment, work in this sector contributed little to Black women's changing economic status, perhaps because of cutbacks in affirmative action programs. The authors also find evidence of a widening bifurcation among African American women workers, with growing numbers of this group concentrated in the lower end of the earnings distribution. (shrink)

This study compared professional and amateur classical musicians matched for age, gender, and education on reaction times during the Stroop color-word test, brainwaves during an auditory ERP task and during paired reaction-time tasks, responses on the Gibbs Sociomoral Reflection questionnaire, and self-reported frequencies of peak experiences. Professional musicians were characterized by: lower color-word interference effects , faster categorization of rare expected stimuli , and a trend for faster processing of rare unexpected stimuli , higher scores on the Sociomoral Reflection questionnaire, (...) and more frequent peak experiences during rest, tasks, and sleep. Both groups had high values on the Brain Integration Scale. These findings are interpreted in light of a Unified Theory of Performance, which posits that effectiveness in any area is influenced by one’s level of mind-brain development—emotional, cognitive, moral, ego and cortical development—with higher mind-brain development supporting greater effectiveness in any domain. (shrink)

This article presents narratives from 13 Indigenous early career academics (ECAs) at one university in Auckland, New Zealand. These experiences are likely to represent those of Indigenous Māori and Pasifika ECAs nationally, given the small, centralised nature of the national academy of Aotearoa New Zealand. The narratives contain testimony, fictionalised vignettes of experience, and poetic expressions. Meeting the demands of an academic role in one’s first years of working at a university is a big deal for anyone; the extra pressures (...) and challenges for Indigenous Māori and Pacific staff are immense, yet little understood by White ‘others.’ A writing workshop was the initial catalyst of this collective writing project. Through these insider narratives, this article presents a collective description of, and response to, the experience of Māori and Pasifika early career academics. (shrink)

In this introduction to part 2 of the Common Knowledge symposium “Peace by Other Means,” the journal's editor reflects on the difference between the contributions to parts 1 and 2. Whereas the first installment concentrated on ethnography, the second focuses on the peacemaking repertoire of the Greco-Latin tradition, whose basis is psychological. That tradition is characterized by its refusal of wishful thinking about human nature and, in particular, by its doubt about claims that human drives other than thumos — the (...) rage for self-aggrandizement — motivate the initiators of wars. Given this assumption about motive, the Greco-Latin tradition tends also to regard negotiations based on the rational discussion of material interests as unlikely to succeed. Success requires symbolic and ritual gestures — acts of self-humiliation on the part of those apparently with the greatest power — by which thumos is propitiated and pacified. Most of the introduction considers cases of such settlements, including two contemporary efforts at ritual peacemaking, a successful one by Queen Elizabeth II in Ireland and an unsuccessful one by Pope Francis in the Middle East. (shrink)

In this paper, a personalist ethical perspective on end-of-life care of severely ill newborns is presented by posing two questions. (1) Is it ethically justified to decide not to start or to withdraw life-sustaining treatment in severely ill newborns? (2) Is it ethically justified, in exceptional cases, to actively terminate the life of severely ill newborns? Based on five values—respect for life and for the dignity of the human person, quality of life, respect for the process of dying, relational autonomy, (...) and justice—an ethical assessment is conducted that brings us answers to the two ethical questions. (1) Noninitiation or withdrawal of life-sustaining medical treatment in severely ill newborns is ethically acceptable, and might even be a moral duty, when initiation or continuation of medical treatment can be considered futile or even harmful. (2) However, according to the personalist approach, it is not ethically acceptable to actively terminate the life of a severely ill newborn. (shrink)

Human beings adapt the spontaneous pace of their actions to interact with the environment. Yet, the nature of the mechanism enabling such adaptive behavior remains poorly understood. The aim of the present contribution was to examine the role of attention in motor timing using time series analysis, and a dual task paradigm. In a series of two studies, a finger-tapping task was used in sensorimotor synchronization with various tempi and motor complexity. Time series analyzes indicated that two different timing strategies (...) were used depending on the speed constraints. At slow tempi, tapping sequences were characterized by strong negative autocorrelations, suggesting the implication of cognitive predictive timing. When moving at fast and close-to-spontaneous tempi, tapping sequences were characterized by less negative autocorrelations, suggesting that timing properties emerged from body movement dynamics. The analysis of the dual-task reaction times confirmed that both the temporal and spatial constraints impacted the attentional resources allocated to the finger-tapping tasks. Overall, our work suggests that moving fast and slow involve distinct timing strategies that are characterized by contrasting attentional demands. (shrink)

The purpose of this article is to illustrate the role of sociology in the field of corporate social responsibility. It presents a case study conducted by a research group consisting of two University partners in association with a Swiss SME. This project attempted to draw conclusions from a specific sociological consultancy research project on the general possibilities and opportunities of sociology in applied research and operational sustainability consulting. On the basis of the project findings, the article reflects on the extent (...) to which sociology could profitably intervene, on the limitations for sociological research and consultations in this field and on the conclusions that can be drawn for future analyses. (shrink)

Children with autism spectrum disorder show marked difficulties in reading comprehension, a complex cognitive skill fundamental to successful daily functioning that is associated with core executive functions. However, the neurophysiological mechanisms underlying reading comprehension deficits in these children remain elusive. Twenty-one right-handed males with high-functioning ASD and 23 age-, IQ-, educational level-, sex- and handedness-matched typically developing individuals underwent a reading comprehension test and the semantic verbal fluency test that tapped core executive functions underlying reading comprehension during concurrent prefrontal functional (...) near-infrared spectroscopy measurement. Participants’ information processing efficiency was also assessed. High-functioning ASD children exhibited general reading comprehension [main effect of group: F = 7.58, p = 0.009], selective verbal fluency deficits [Group × category interaction: F = 4.90, p = 0.032] and slower processing speed. Regarding the hemodynamics of the prefrontal cortex, although ASD individuals showed comparable patterns of PFC brain activation to their healthy counterparts, lower PFC intrahemispheric [main effect of group: F = 11.36, p = 0.002] and interhemispheric [main effect of group: F = 7.79, p = 0.008] functional connectivity were evident during the semantic verbal fluency test. At the whole-group level, poorer reading comprehension performance was associated with poorer performance in the semantic verbal fluency test. Moreover, poorer semantic verbal fluency test performance was associated with slower information processing speed, which is associated with reduced left medial PFC functional connectivity. Abnormal intrahemispheric and interhemispheric prefrontal hypoconnectivity is associated with deficits in executive processes essential for reading comprehension in ASD. Our study has provided important implications for the neuropsychological and neurophysiological mechanisms underlying reading comprehension deficits in ASD. (shrink)

Objectives To describe the form and content of ethics policies on euthanasia in Flemish nursing homes and to determine the possible influence of religious affiliation on policy content. Methods Content analysis of euthanasia policy documents. Results Of the 737 nursing homes we contacted, 612 (83%) completed and returned the questionnaire. Of 92 (15%) nursing homes that reported to have a euthanasia policy, 85 (92%) provided a copy of their policy. Nursing homes applied the euthanasia law with additional palliative procedures and (...) interdisciplinary deliberations. More Catholic nursing homes compared to non-Catholic nursing homes did not permit euthanasia. Policies described several phases of the euthanasia care process as well as involvement of caregivers, patients, and relatives; ethical issues; support for caregivers; reporting; and procedures for handling advance directives. Conclusion Our study revealed that euthanasia requests from patients are seriously considered in euthanasia policies of nursing homes, with great attention for palliative care and interdisciplinary cooperation. (shrink)