Progressive supranuclear palsy is a movement disorder with prominent tau neuropathology. Brain diseases with abnormal tau deposits are called tauopathies, the most common of which is Alzheimer's disease. Environmental causes of tauopathies include repetitive head trauma associated with some sports. To identify common genetic variation contributing to risk for tauopathies, we carried out a genome-wide association study of 1,114 individuals with PSP and 3,247 controls followed by a second stage in which we genotyped 1,051 cases and 3,560 controls for the (...) stage 1 SNPs that yielded P ≤ 10-3. We found significant previously unidentified signals associated with PSP risk at STX6, EIF2AK3 and MOBP. We confirmed two independent variants in MAPT affecting risk for PSP, one of which influences MAPT brain expression. The genes implicated encode proteins for vesicle-membrane fusion at the Golgi-endosomal interface, for the endoplasmic reticulum unfolded protein response and for a myelin structural component. © 2011 Nature America, Inc. All rights reserved. (shrink)

In this article, we explore the institutional negotiation of public engagement in matters of science and technology. We take the example of the Science in Society dialogue program initiated by the UK’s Royal Society, but set this case within the wider experience of the public engagement activities of a range of charities, corporations, governmental departments, and scientific institutions. The novelty of the analysis lies in the linking of an account of the dialogue event and its outcomes to the values, practices, (...) and imperatives—the institutional rationality—of the commissioning organization. We argue that the often tacit institutional construction of scientific citizenship is a critical, and relatively undeveloped, element of analysis—one that offers considerable insight into the practice and democratic implications of engaging publics in science and science policy. We also present evidence indicating that over time the expanding ‘‘capacities’’ associated with dialogue can act in subtle ways to enroll other elements of institutional architectures into more reflexive modes of thinking and acting. In the concluding section of the article, we consider the ways in which research and practice could engage more squarely with facets of institutional context and culture. (shrink)

BackgroundInformed consent forms for clinical research are several and variable at international, national and local levels. According to the literature, they are often unclear and poorly understood by participants. Within the H2020 project CORBEL—Coordinated Research Infrastructures Building Enduring Life-science Services—clinical researchers, researchers in ethical, social, and legal issues, experts in planning and management of clinical studies, clinicians, researchers in citizen involvement and public engagement worked together to provide a minimum set of requirements for informed consent in clinical studies.MethodsThe template was (...) based on a literature review including systematic reviews and guidelines searched on PubMed, Embase, Cochrane Library, NICE, SIGN, GIN, and Clearinghouse databases, and on comparison of templates gathered through an extensive search on the websites of research institutes, national and international agencies, and international initiatives. We discussed the draft versions step-by-step and then we referred to it as the “matrix” to underline its modular character and indicate that it allows adaptation to the context in which it will be used. The matrix was revised by representatives of two international patient groups.ResultsThe matrix covers the process of ensuring that the appropriate information, context and setting are provided so that the participant can give truly informed consent. It addresses the key topics and proposes wording on how to clarify the meaning of placebo and of non-inferiority studies, the importance of individual participants’ data sharing, and the impossibility of knowing in advance how the data might be used in future studies. Finally, it presents general suggestions on wording, format, and length of the information sheet.ConclusionsThe matrix underlines the importance of improving the process of communication, its proper conditions (space, time, setting), and addresses the participants’ lack of knowledge on how clinical research is conducted. It can be easily applied to a specific setting and could be a useful tool to identify the appropriate informed consent format for any study. The matrix is mainly intended to support multicentre interventional randomized clinical studies, but several suggestions also apply to non-interventional research. (shrink)

Risk taking is a component of the decision-making process in situations that involve uncertainty and in which the probability of each outcome – rewards and/or negative consequences – is already known. The influence of cognitive and emotional processes in decision making may affect how risky situations are addressed. First, inaccurate assessments of situations may constitute a perceptual bias in decision making, which might influence RT. Second, there seems to be consensus that a proneness bias exists, known as risk proneness, which (...) can be defined as the propensity to be attracted to potentially risky activities. In the present study, we take the approach that risk perception and risk proneness affect RT behaviours. The study hypothesises that locus of control, emotion regulation, and executive control act as perceptual biases in RT, and that personality, sensation seeking, and impulsivity traits act as proneness biases in RT. The results suggest that locus of control, emotion regulation and executive control influence certain domains of RT, while personality influences in all domains except the recreational, and sensation seeking and impulsivity are involved in all domains of RT. The results of the study constitute a foundation upon which to build in this research area and can contribute to the increased understanding of human behaviour in risky situations. (shrink)

Given the food challenges that society is facing, we draw upon recent developments in the study of how food reputation affects food preferences and food choices, providing here a starting standard point for measuring every aspect of food reputation in different cultural contexts across the world. Specifically, while previous attempts focused either on specific aspects of food or on measures of food features validated in one language only, the present research validates the Food Reputation Map (FRM) in Italian, English and (...) Chinese over 2,250 participants worldwide. Here we successfully measure food reputation across 23 specific indicators, further grouped into six synthetic indicators of food reputation. Critically, results show that: (a) the specific measurement tool of food reputation can vary across cultural contexts, and that (b) people's reputation of food products or categories changes significantly across different cultural contexts. Therefore, in order to understand people's food preferences and consumption, it is important to take into account the repertoire of cultural differences that underlies the contexts of analysis: the three context-specific versions of the FRM presented here effectively deal with this issue and provide reliable context-specific insights on stakeholders' interests, perspectives, attitudes and behaviors related to food perceptions, assessment, and consumption, which can be effectively leveraged to foster food sustainability. (shrink)

BackgroundContradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview.MethodsA descriptive qualitative study. The data were collected in the context (...) of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study.ResultsThe interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible.ConclusionThe open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview. (shrink)

A equipe da Enfermagem é privilegiada, pois, é o cuidador que permanece vinte e quatro horas na assistência direta do paciente, podendo ter uma visão ampliada da pessoa no processo do adoecimento, tendo a oportunidade de incorporar e desenvolver os princípios dos Cuidados Paliativos (CP). Na perspectiva holística da saúde a religião/religiosidade/espiritualidade é uma das possibilidades de cuidado e manejo, porém ainda muito negligenciada pelos profissionais da saúde, seja por desconhecimento ou preconceitos e tabus, mas que se torna essencial no (...) cuidado de pacientes em CP. Por meio deste relato de experiência, objetiva-se ressaltar a importância da religião/religiosidade/espiritualidade, no cuidado e manejo de pacientes em CP, a partir da experiência de uma profissional da enfermagem, sua prática em cuidados e docência, supervisionando alunos com pacientes em contexto dos CP. Anos acompanhando alunos na prática, demonstraram que os profissionais da enfermagem têm dificuldade de identificar o Sofrimento Espiritual (SE) dos pacientes, e quando identificavam, não sabiam o que fazer com esta demanda, delegando a outros profissionais da equipe, que também tinham dificuldades, causando um (des)cuidado na Dimensão Espiritual (DE) do paciente em CP, trazendo-o mais sofrimento e desconforto com sua finitude. Como resultado dessas reflexões, está sendo desenvolvida uma pesquisa de pós-doutorado, destinada a identificar a DE, construção de roteiro de educação permanente. Em síntese, esses profissionais tendo a capacitação para identificar o SE, explorar e cuidar da DE, poderão promover a proteção da saúde mental, tanto do paciente em CP quanto sua, e tornarem-se profissionais mais sensíveis na finitude. (shrink)

La filosofía para hacer las paces de Martínez Guzmán aborda las competencias y las capacidades que los seres humanos tenemos para la transformación de los conflictos por medios pacíficos. Desde esta concepción de la condición humana, la defensa de un más que necesario cambio en la noción de la política local y global y la propuesta del giro epistemológico, Martínez Guzmán indaga la relación entre conflicto y cooperación como dos caras de una misma moneda, y pone el énfasis en la (...) importancia del reconocimiento a través de la justicia y del amor para hacernos las paces, superando, así, las llamadas “luchas por el reconocimiento”.Martinez Guzman’s Philosophy for making peace approaches the competencies and the capabilities that human beings have for the peaceful conflict transformation. From this conception of the human condition, the author explores the relationship between conflict and cooperation as two sides of the same coin, at the same time that he emphasizes the importance of recognition through justice and love to make peace, thus overcoming the so-called "struggles for recognition." This study takes also into account the defense of a more than necessary change in the notion of local and global politics and Martinez Guzman’s proposal of the epistemological turn. (shrink)

This focused review is based on earlier studies which have shown that both children and adults diagnosed as having developmental coordination disorder (DCD), benefited from sensorimotor therapy according to the method Retraining for Balance (RB). Different approaches and assessments for children and adults in regard to DCD are scrutinized and discussed in comparison to RB which mainly includes (a) vestibular assessment and stimulation (b) assessment and integration of aberrant primary reflexes and (c) assessment and stimulation of auditory and visual perception. (...) Earlier results indicate that the process of sensorimotor therapy using RB techniques could be described according to a conceptual Kinesthetic-Vestibular Developmental Model (KVDM) whereby the training elicited temporary physical and psychological regressions followed by transformations i.e. positive physical and psychological development. We have also seen that this recurring pattern is similar for children and adults. In our conceptual model vestibular stimulation (perceptual priming) stimulates the nervous system, which might enhance object-related priming. This perceptual priming will also assist the suppression of persistent aberrant primary reflexes. In order to develop effective methods for assessment and intervention of DCD over the life span the importance of primary reflex inhibition and vestibular stimulation as well as a combination of bottom-up and top-down approaches have to be considered. (shrink)

BackgroundCommunity engagement is a key component in health research. One of the ways health researchers ensure community engagement is through Community Advisory Boards (CABs). The capacity of CABs to properly perform their role in clinical research has not been well described in many resource limited settings. In this study, we assessed the capacity of CABs for effective community engagement in Uganda.MethodsWe conducted a cross sectional study with mixed methods. We used structured questionnaires and key informant interviews (KII) to collect data (...) from CAB members, trial investigators, and community liaison officers. For quantitative data, we used descriptive statistics while for qualitative data we used content analysis.ResultsSeventy three CAB members were interviewed using structured questionnaires; 58.9% males, median age 49 years (IQR 24–70), 71.2% had attained tertiary education, 42.5% never attended any research ethics training, only 26% had a training in human subject protection, 30.1% had training in health research, 50.7% never attended any training about the role of CABs, and 72.6% had no guidelines for their operation. On the qualitative aspect, 24 KIIs cited CAB members to have some skills and ability to understand and review study documents, offer guidance on community norms and expectations and give valuable feedback to the investigators. However, challenges like limited resources, lack of independence and guidelines, and knowledge gaps about research ethics were cited as hindrances of CABs capacity.ConclusionThough CABs have some capacity to perform their role in the Ugandan setting, their functionality is limited by lack of resources to facilitate their work, lack of independence, lack of guidelines for their operations and limited knowledge regarding issues of research ethics and protection of the rights of trial participants. (shrink)

This collaborative companion piece, written as a postscript to the three preceding essays, highlights four themes in comparative religious ethics that emerge through our focus on sex and gender: language, embodiment, justice, and critique.

Written by two of the leading figures in the field, this is a lucid and systematic introduction to semantics as applied to transformational grammars of the ...

Understanding firms' interfaces with the community has become a familiar strategic concern for both firms and non-profit organizations. However, it is still not clear when different community engagement strategies are appropriate or how such strategies might benefit the firm and community. In this review, we examine when, how and why firms benefit from community engagement strategies through a systematic review of over 200 academic and practitioner knowledge sources on the antecedents and consequences of community engagement strategy. We analytically describe evidence (...) on the rise of the community engagement strategy literature over time, its geographical spread and methodological evolution. A foundational concept underlying many studies is the ' continuum of community engagement'. We build on this continuum to develop a typology of three engagement strategies: transactional, transitional and transformational engagement. By identifying the antecedents and outcomes of the three strategies, we find that the payoffs from engagement are largely longer-term enhanced firm legitimacy, rather than immediate cost-benefit improvements. We use our systematic review to draw implications for future research and managerial practice. (shrink)

Sounding Fragilities enacts a polyphony of writing on contemporary composition, music and performing arts in relation to music theatre. Co-edited by a theatre and performance scholar and by a composer and artistic researcher, this anthology considers its field of investigation through the lens of positionalities. Irene Lehmann and Pia Palme invite readers into intimate encounters with an artist's practice, feminist and queer perspectives, and personal explorations into aspects of musicology, theatre studies, technology and ecology. By presenting female* composers who (...) write with/through/about their own practice, Sounding Fragilities is a remarkable contribution to an interdisciplinary debate around the agency of artistic research. With this synthesis, the editors evaluate how moving beyond the binary of art and science reveals the rich yet fragile territories of artistic knowledge-production and literacy in music theatre. Sounding Fragilities: An Anthology brings together essays, discussions and interventions on contemporary music, dance and music theatre to offer a polyphony of new approaches to listening, watching, composing and performing. Artistic and academic researchers present reflections and insights into the fragilities of artistic materials, collaborations and the communities that build around live performances. Challenging the idea of isolated composers, choreographers, audience members and academic researchers, they stress instead the interconnectedness of these positions as indispensable elements of thriving performance and research. This feature of all live performance is envisaged by several of the book's contributors as linked to political, democratic thought and ecological or feminist thinking. (shrink)

This paper explores whether MacIntyrean virtue ethics concepts are applicable in non-Western business contexts, specifically in SMEs in Taiwan, a country strongly influenced by the Confucian tradition. It also explores what differences exist between different polities in this respect, and specifically interprets observed differences between the Taiwanese study and previous studies conducted in Europe and Asia. Based on case study research, the findings support the generalizability of the MacIntyrean framework. Drawing on the institutional logics perspective and synthesizing this with MacIntyrean (...) concepts, the paper explains the differences between the studies largely by reference to the Confucian tradition operating at both the micro-level within firms and at the macro-level as a means of harmonizing the potentially competing institutional logics to which firms are subject. The recent weakening of this tradition, however, suggests that increased conflict may characterize the future. (shrink)

Introduction: Time and the shared world -- The "subject" of inquiry -- Mineness and the practical first-person -- Being and otherness: Sartre's critique -- Heideggerian aprioricity and the categories of being -- The temporality of care -- Fursorge: acknowledging the other Dasein -- Authenticity, inauthenticity, and the extremes of Fursorge -- Conclusion.

With the turning of wilderness areas into wildlife parks and the returning of developed areas of land to the forces of nature, intermediate hybrid realms surface in which wild and managed nature become increasingly entangled. A partitioning of environmental philosophy into ecoethics and animal welfare ethics leaves these mixed territories relatively uncharted—the first dealing with wild (animals), the second with the welfare of captive or domestic animals. In this article, we explore an environmental philosophy that considers explicitly these mixed situations. (...) We examine a recent Dutch policy of introducing domesticated and semi-wild large herbivores in newly developed nature areas. Larger issues are at stake, such as the intertwinement of nature and culture, the dynamic character of de-domestication processes, and the relation between concepts of authenticity and the wild. We sketch a pluralistic, dynamic, and pragmatic environmental philosophy that is capable of dealing with the complicated ethicalproblems concerning creatures and land caught between domestication and the wild. (shrink)

Background The aim was to explore how the clinical ethics committees in Norway have worked and functioned within mental health care and addiction treatment services. Methods Analysis of 256 annual reports from clinical ethics committees from 2003 to 2012 and a survey to clinicians who had used a clinical ethics committee. Results Dilemmas related to coercion, confidentiality, information, and patient autonomy dominated. The committees established only for psychiatric hospitals, had received more cases from mental health and addiction services than the (...) committees also serving somatic services. Many of the case discussions involved both somatic and mental health care, complicated legal issues as well as ethical dilemmas. Mental health care professionals that have used the clinical ethics committees evaluated the clinical ethics committees deliberation as useful. Conclusion Given the many difficult ethical dilemmas in mental health care ethics work need to be strengthened. The complexity of the cases requires varied and interdisciplinary competence and training among the clinical ethics committee members. (shrink)

Journal Name: Semiotica Issue: Ahead of print.

The concept of sustainability was developed in response to stakeholder demands. One of the key mechanisms for engaging stakeholders is sustainability disclosure, often in the form of a report. Yet, how reporting is used to engage stakeholders is understudied. Using resource dependence and stakeholder theories, we investigate how companies within the same industry address different dependencies on stakeholders for economic, natural environment, and social resources and thus engage stakeholders accordingly. To achieve this objective, we conducted our research using qualitative research (...) methods. Our findings suggest that the resource dependencies on different stakeholders lead to development of different stakeholder relationships and thus appropriate resources within the company to execute engagement strategies that are informing, responding, or involving. Our research explains why diversity exists in sustainability disclosure by studying how it is used to engage stakeholders. We find that five sustainability reporting characteristics are associated with the company’s stakeholder engagement strategy: directness of communication, clarity of stakeholder identity, deliberateness of collecting feedback, broadness of stakeholder inclusiveness, and utilization of stakeholder engagement for learning. Our study develops the literature by providing insight into companies’ choices of stakeholder engagement strategy thus explaining diversity in sustainability reporting based on the characteristics and relationships with specific stakeholders. (shrink)

Plato and the Metaphysical Feminine offers a new interpretation of the role of the female and the feminine in Plato's political dialogues--the Republic, Laws, and Timaeus--informed by Deleuze's film theory and Irigaray's psychoanalytic feminism. Irene Han reads Plato against the grain in order to close the gap between the vitalists and Plato, instead of magnifying their differences. Han explores the ambivalence that the vitalist tradition, Irigaray, and Derrida have towards Platonism. The application of Deleuzian and Irigarayan concepts to the (...) ancient texts produces a new reading of Plato, focusing on the centrality and importance of motion, change, sensuality, and becoming to Platonic philosophy and, thereby, reinterprets Platonic philosophy in the direction of Heraclitus rather than Parmenides: as feminist rather than masculinist, and as mimetic. It therefore prioritizes Heraclitean principles of movement and flux over Form, the feminine over masculine, and materiality, feeling, or sensation over abstraction and universal essence. Han's exploration illustrates how, in Plato's thought, the feminine maps itself onto the plane of phenomena--a plane associated with vitalist themes such as motion, tactility, and change (metabolē). Platonic metaphysics is recontextualized by illustrating how Being expresses itself through processes of (feminine) becoming. With this reformulation, the resulting account of Platonic Being destabilizes any purported Platonic dualism. (shrink)

A fascinating account of exemplarity in the context of deconstruction.

Who has the right to be a full member of a nation-state? Inherited privileges, for reasons of birth or blood, as they are put forward by and, should force us to ask: Why is it that someone cannot become a full member of a society, even if she lives, works, and has her affective relations within the borders of that nation-state? As Ayelet Shachar underlines, the place of birth is fundamental in the assignment of political membership. The aim of this (...) article is to examine if we should get rid of the idea of citizenship or if we can just widen the concept in order to think a theory wide enough to include those who now are misrecognized. (shrink)

‘‘Post-normal science’’ has received much attention in recent years, but like many iconic concepts, it has attracted differing conceptualizations, applications, and implications, ranging from being a ‘‘cure-all’’ for democratic deficit to the key to achieving more sustainable futures. This editorial article introduces a Special Issue that takes stock of research on PNS and critically explores how such research may develop. Through reviewing the history and evolution of PNS, the authors seek to clarify the extant definitions, conceptualizations, and uses of PNS. (...) The authors identify five broad areas of research on, or using, PNS which have developed over four decades. Their analysis suggests that the 1990s represent a symbolic watershed in the use of PNS terminology, when the concept was further developed and applied to highly complicated issues such as climate change. The authors particularly distinguish between uses of PNS as a normative prescription and as a practical method. Through this classification, they set out gaps and research questions arising. They then briefly summarize the Special Issue articles and consider their relationship to each other and the research questions raised by their analysis. They conclude by considering what the articles in this issue suggest for future theory building in PNS and related scholarship. (shrink)

The influence of stakeholders, organisational commitment, personal values, goals of the organisation and socio-demographic characteristics of individuals on the ethical dimension of behavioural intentions of employees in various organisations are investigated. The research results show that employees working for the public sector or in educational institutions take more ethical aspects into account than employees working in the "private" sector. The influence of stakeholders and organisational commitment do not significantly affect the ethical behaviour of employees, and only some personal values and (...) goals of the organisation have a significant influence on ethical behaviour. The most significant explanatory factor of ethical decision making seems to be what may be called "stage in the career of the employee": "ethical" employees can be described as young, with a relatively low income, limited work experience and a low level of responsibility in the company. (shrink)

: Traditional definitions of pain assume that an individual learns about pain through verbal usages related to the experience of injury in early life. This emphasis on the verbal correlates of pain restricts our understanding of pain to the context of adult human consciousness. In this paper we instead support the idea that our understanding of pain originates in neonatal experience and is not merely a verbally determined phenomenon. We also challenge the definition of pain as a merely sensory message (...) related to peripheral tissue trauma. We aim to move beyond this definition by considering the relationship between the centre and periphery, taking into account certain phenomena such as phantom limbs and interoception. We show that pain helps an individual to develop a sense of awareness of himself immersed in a social context, and is thus a complex and adaptive phenomenon, that supports bodily integrity and social behavior. Keywords : Awareness; Consciousness; Experience; Pain; Self-representation Dolore e coscienza negli esseri umani. Ovvero, perché il dolore favorisce l’identità e la rappresentazione di sé Riassunto : La definizione classica di dolore presuppone che l’individuo ne apprenda l'uso verbale attraverso esperienze dolorifiche legate all’infanzia, favorendo una maggiore attenzione per i correlati verbali del dolore. Questo spesso relega il dolore nel contesto della coscienza dell’uomo adulto. Il presente lavoro si propone, in primo luogo, di sottolineare alcune evidenze, a partire dall'esperienza neonatale, a sostegno dell’idea di dolore come esperienza umana e non solo come fenomeno determinato verbalmente. Un secondo aspetto emerge dalla definizione di dolore, il concepirlo come un semplice messaggio sensoriale in seguito a lesioni dei tessuti periferici. Ci si propone, pertanto, di andare oltre tale ipotesi considerando il rapporto tra centro e periferia, a partire da alcuni fenomeni come l’arto fantasma e l’interocezione. Il dolore aiuta inoltre a sviluppare un senso di consapevolezza di sé immerso nel contesto sociale; si tratta dunque di un fenomeno complesso e adattivo, dall’integrità fisica alla dimensione sociale. Parole chiave : Consapevolezza; Coscienza; Esperienza; Dolore; Rappresentazione di sé. (shrink)

This book offers a major reassessment of Peter Abelard's modal logic and theory of modalities, presenting them as far more uniform and consistent than was until now recognized. Irene Binini offers new ways of connecting Abelard's modal views with other parts of his logic, semantics, metaphysics and theology. Further, the work also provides a comprehensive study of the logical context in which Abelard's theories originated and developed, by presenting fresh evidence about many 11th- and 12th-century sources that are still (...) unpublished. This analysis sheds new light on the relations between Abelard and ancient authors such as Aristotle, Boethius, and Priscian, as well as between Abelard and his contemporaries, such as Anselm of Canterbury, William of Champeaux, Joscelin of Soissons, and Alberic of Paris. (shrink)