We conducted a systematic analysis of conceptions of Alzheimer’s disease in the French specialized social workers press between 1990 and 2014, and compared these results to recent studies on autism and Attention Deficit Hyperactivity Disorder (ADHD) in the same field. Analysis of discourse about Alzheimer’s disease, and more generally on mental and psychosocial disorders in the specialized social workers press shows that social factors highly involved in these pathologies are never presented, as they are (...) widely argued in the international literature, and can be subject to specific socio-educational policies and practices. Most ways of Alzheimer’disease presented to French social workers belong to the therapeutic sphere, and reveal a growing medicalization of social work, allowing us to question the practice, institutional and training issues. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Alzheimer's Disease, Aging, Chance, and RaceAtwood D. Gaines (bio)KeywordsAlzheimer’s disease, chance, mild cognitive impairment, racism, social constructionsThomas Kirkwood's comments are a welcome, articulate detailing of how and why we age with special reference to the brain. As well, his paper indicates clearly that processes reified as pathology and disease, such as Alzheimer's disease (AD), are in fact common and inevitable as the human brain ages. Doubtless, this is (...) the reason that aging is by far the greatest risk factor for the development of AD. A key notion, briefly mentioned by Kirkwood, is that of chance. He points out that, "cells (will be) burdened with protein aggregates and similar materials that will increase with aging. Once again, which cells will experience this fate and which will continue to function healthily is strongly influenced by chance" (Kirkwood 2006, 80–81). This mention of chance is most important for our paper, "Building a Mystery," and for an understanding of science as well. In "Building a Mystery," Peter Whitehouse and I sought to show that the history of AD was not inevitable and demonstrates a variety of chance and singular decisive occurrences of encounters, interpretations, social movements, government initiatives, and technological developments. Such decisive moments do not occur by virtue of some (natural) lawful process that is unfolding, but rather, these are chance events that could have happened in other ways. Indeed, science has been viewed as human attempts to "tame chance" (Hacking 1990). However, it often does so by sleight of hand, misinterpretation, and the biomedical discourse of hope. Increasingly, we are learning that chance is a commonality, not a rarity, in social and biological domains. The biomedical approach assumes the opposite. For example, it seeks to tame the chance appearance of AD in the case of Auguste D, and does so in part by reifying differences that exist, as Kirkwood notes, along a continuum rather than as the discrete entities implied by the labels Alzheimer's disease or mild cognitive impairment (MCI).We thus stand with Kirkwood's bold recognition of chance (see also Kirkwood 2003) in the biological domain and have applied the same idea to the social domain in which we consider the practice of biomedical science. We have elsewhere emphasized consensus statements in the making of AD (Gaines and Whitehouse 1998). In the present article, we add a number of other chance, decisive sociocultural moments to the mix of social processes producing AD and MCI. We have not considered in detail here a host of cultural features in the theory and practice of biomedicine with respect to AD. These include implicit, yet highly [End Page 83] implicative, cultural notions of bilateral kinship employed in genetic research on AD considered elsewhere (Gaines 1998).Bavidge's comments are cogent as well. With respect to the notion of my concept of the local biology of "race" (Gaines 2005), it is germane to point out here that such culturally constructed biologies are relevant to a discussion of AD and other dementias. Such constructions represent culture in science. We used the dramatic example of "race" in US biomedicine because it is experiencing a resurgence as an explanatory tool. For example, recently Haiman et al. (2006) presented research that suggests that "Among cigarette smokers, African Americans and native Hawaiians are more susceptible to lung cancer than whites, Japanese Americans and Latinos." The authors assert, as have many US studies, that their findings show differences relate to the alleged biology of the social groups concerned. Their problem and that of others, is that the groups are social, not biological, and most have mixed ancestry and do not stem from distinct groups. This is particularly true of African Americans and Latinos; both groups are substantially composed of individuals with European, West African, and Native American ancestry in widely varying proportions (Gaines 2005). Thus, they are different only in terms of their classification. Such work regularly overlooks influences, such as environmental racism, discrimination, poverty, and a lack of medical care, as well as other practices. These might include, in a study of smoking, pakalolo smoking (local marijuana) among Hawaiians, who themselves are usually part Portuguese, Japanese, Chinese, and or European... (shrink)

The aim of our research is to explore how Alzheimer’s disease and dementia are represented in the Slovak media. Data consisted of text documents from the Newton media database. Search criteria included TV, radio, print and web sources that mentioned the words “Alzheimer” and “dementia” between 2015 and 2018. A thematic discourse analysis was applied in order to identify the themes and their mutual semantic relations. The analysis was focused primarily on the headlines (n = 227). The (...) results show that the biomedical perspective currently dominates at the expense of a socio-psychological one. Persons with Alzheimer’s disease and dementia are represented as tragic cases and victims of a cruel disease. Responsibility for care and prevention is individualized. Our findings suggest that a new perspective is needed. Such an approach should recognize the dignity and humanity of persons with Alzheimer’s disease and dementia despite their cognitive deficits and respect their socio-psychological needs. (shrink)

Biomarker-based predictive tests for subjectively asymptomatic Alzheimer’s disease (AD) are utilized in research today. Novel applications of artificial intelligence (AI) promise to predict the onset of AD several years in advance without determining biomarker thresholds. Until now, little attention has been paid to the new ethical challenges that AI brings to the early diagnosis in asymptomatic individuals, beyond contributing to research purposes, when we still lack adequate treatment. The aim of this paper is to explore the ethical (...) arguments put forward for AI aided AD prediction in subjectively asymptomatic individuals and their ethical implications. The ethical assessment is based on a systematic literature search. Thematic analysis was conducted inductively of 18 included publications. The ethical framework includes the principles of autonomy, beneficence, non-maleficence, and justice. Reasons for offering predictive tests to asymptomatic individuals are the right to know, a positive balance of the risk-benefit assessment, and the opportunity for future planning. Reasons against are the lack of disease modifying treatment, the accuracy and explicability of AI aided prediction, the right not to know, and threats to social rights. We conclude that there are serious ethical concerns in offering early diagnosis to asymptomatic individuals and the issues raised by the application of AI add to the already known issues. Nevertheless, pre-symptomatic testing should only be offered on request to avoid inflicted harm. We recommend developing training for physicians in communicating AI aided prediction. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Demystifying the Mystery of Alzheimer's as Late, No Longer Mild Cognitive ImpairmentPeter J. Whitehouse (bio)Keywordsaging, Alzheimer’s disease, deconstruction, mild cognitive impairmentProfessor Tom Kirkwood and Michael Bavidge's comments are welcome additions to our discourse as both emphasize the importance of considering mild cognitive impairment (MCI) and Alzheimer's disease (AD) in relationship to the normal biological and cultural processes of aging. Whereas I agree with my colleague and co-author, (...) Atwood Gaines' response, I wish to add my own commentary to update the reader concerning the dynamic political processes at work in the social construction and deconstruction of MCI and AD. I have referred to MCI as autodeconstructing AD because whatever we come to think of the MCI label on the spectrum of cognitive aging should alter our beliefs about the ultimate utility of the concept of AD. Tensions in the field of study of MCI have increased since the project reported in this journal began. The social science and philosophical contributions toward understanding MCI need to inform our debate now; otherwise, we will be less effective at influencing a critical debate for society about its relationships to medicine, science, and modern capitalism.This past year, Ron Petersen, the major proponent of the concept of MCI was awarded the prestigious Potamkin Prize for research in Alzheimer's disease by the American Academy of Neurology. The National Institute on Aging (NIA) placed the discovery of MCI as first on the list of contributions during twenty years of research funded through hundreds of millions of dollars poured into the NIA Alzheimer's Research Centers. Some have even suggested that we relabel MCI of the amnestic type, Petersen syndrome. Yet, John Morris, who was co-awarded the Potamkin Prize, has continued to write that MCI is early AD and most recently has suggested (Morris 2006) that we should revise our diagnostic criteria. He joins me and a growing list of other so-called thought leaders who believe (but do not always state publicly) that the term MCI is not useful clinically. Lon Schneider (2005) has recently joined the camp of critics publicly by suggesting that MCI is [End Page 87] not only confusing clinically but is now possibly retarding research.The proliferation of different kinds of MCI indicates that we are studying heterogeneous processes of brain aging. Whereas, John Morris suggests that we relabel MCI as early AD, I have suggested the converse. For example, in a grand rounds lecture at Johns Hopkins in March 2004, I used the lecture title "LNLMCI (late no longer MCI)" as a synonym for AD.Kirkwood is right to compare the quest for biological therapy for AD to the search to treat aging processes in other organs. He has been an outspoken critic of anti-aging medicine quackery that claims that aging itself is a disease that can be reversed today. But, if AD is brain aging, are we not in fact creating a "disease" category that raises false hopes and expectations?Kirkwood also points out that aging is a lifespan process. To prevent dementia in older individuals, we should prevent damage to neurons in younger individuals. Recently, it has been claimed, for example, that exposure to lead in young animals makes these animals more at risk for amyloid deposition in later life (Basha et al. 2005). Whether or not lead directly affects the pathogenesis of AD, it seems eminently reasonable to try to prevent damage to neurons in young children so that they may have maximum cognitive capacity throughout their lifespan.Almost ten years ago, when I stepped down as the editor of the Alzheimer's Disease and Associated Disorders Journal and as John Morris took over this responsibility, I wrote an editorial calling for the end of AD (Whitehouse 2001). In other words, I argued that thinking through the invention of the term mild cognitive impairment reveals that we are attempting to assign medical categories to what are a heterogeneous set of processes that affect our brains as we age. At the hundredth anniversary of the first case of what we have come to call Alzheimer's disease, perhaps it is time to reflect on the individual and social... (shrink)

This research examines how the meaning of risk, safety, and accidents are constructed in a military context. We compare meanings of these constructs among members working for three organizations (Health and Safety Executive, Ministry of Defence, and Royal Marine Commandos) jointly responsible for planning and executing "safe" military training and maneuvres in a particular unit of the United Kingdom's Royal Marine Commandos. The discourse among these members embodies the inter-organizational collaboration over military safety, and through an analysis (...) of this discourse we situate and frame shared and contested meanings of risk, safety, and accidents within this particular community of practice. We discuss implications of these findings for theory and practice, rallying for a more contextualized understanding of what risk, safety, and accidents mean in organizational life and thus the relative nature of the standards to which organizations are expected to adhere. (shrink)

Existing accounts of the early history of Alzheimer’s disease have focused on Alois Alzheimer’s (1864–1915) publications of two ‘peculiar cases’ of middle-aged patients who showed symptoms associated with senile dementia, and Emil Kraepelin’s (1856–1926) discussion of these and a few other cases under the newly introduced name of ‘Alzheimer’s disease’ in his Textbook of Psychiatry. This article questions the underpinnings of these accounts that rely mainly on publications and describe ‘presenility’ as a defining characteristic of the disease. (...) Drawing on archival research in the Munich psychiatric clinic, in which Alzheimer and Kraepelin practised, this article looks at the use of the category as a diagnostic label in practice. It argues that the first cases only got their exemplary status as key referents of Alzheimer’s disease in later readings of the original publications. In the 1900s, the published cases rather functioned as material to think about the limits of the category of senile dementia. The examination of paper technologies in the Munich psychiatric clinic reveals that the use of the clinical diagnosis of Alzheimer’s disease was not limited to patients of a certain age and did not exclude ‘senile’ cases. Moreover, the archival records reflect that many diagnoses of Alzheimer’s disease were noted in the medical records as suspicions rather than conclusions. Against this background, the article argues that in theory and practice, Alzheimer’s disease was not treated as a well-defined disease entity in the Munich clinic, but as an exploratory category for the clinical and histopathological investigation of varieties of organic brain diseases. (shrink)

This qualitative social scientific interview study delves into the ways in which professional vision is constructed in clinical ethics consultation (CEC). The data consist of 11 semi-structured interviews that were conducted with clinical ethics consultants currently working in hospitals in one major urban area in the U.S. The interviews were analyzed with the qualitative research method of critical discourse analysis, with a focus on identifying the cultural structures of knowledge that shape CEC as a professional (...) practice. The discourses were first identified as belonging to two higher discourse categories, order and agency. Order was divided into three lower categories, emotional, managerial, and rational order, and discourses of agency into the lower categories of exploration, technique, deliberation, and distancing. An additional discourse of neutral interaction was identified as a bridging discourse, activated to level tensions emerging out of conflicting goals and agencies embedded in CEC practice. This analysis brings out as its main observation that clinical ethics consultants draw on and shift between potentially ideologically conflicting social positions that can create built-in tensions within the professional domain. The study calls attention to these tensions and suggests for the professional group to discuss the possibility of defining priorities between different kinds of order, identified in this study, that shape the CEC domain. (shrink)

As we aggressively pursue research to cure and prevent Alzheimer’s disease, we encounter important ethical challenges. None of these challenges, if handled thoughtfully, would pose insurmountable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and do damage to research recruits and others. These challenges are the necessity of very large cohorts of research subjects, recruited for lengthy studies, probably ending only in the subjects’ death; (...) the creation of cohorts of ’study ready' volunteers, many of whom will be competent to consent at the beginning of the process, but move into cognitive impairment later; reliance on adaptive trial design, creating challenges for informed consent, equipoise and justice; the use of biomarkers and predictive tests that describe risk rather than certainty, and that can threaten participants’ welfare if the information is obtained by insurance companies or long-term care providers; the use of study partners that creates unique risks of harm to the relationship of subject and study partner. We need greater attention, at all levels, to these complex ethical issues. Work on these issues should be included in research plans, from the federal to the local, and should be supported through NIH in the same way that it supported work on the ethical, legal and social implications of genetic research. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Psychiatric Practice and the Living Force of the Social in the BiopsychosocialGeorge Ikkos, BSc, FRCPsych (bio) and Giovanni Stanghellini, MD, DPhil (HC) (bio)One of the handful of universally acknowledged founders of his discipline, sociologist Emile Durkheim (1857–1917; see Fournier, 2013) is best known to psychiatrists for his seminal “Suicide: A Study in Sociology” (1897/2002). Arguably, he should have been at least as well known for his last completed (...) work “The Elementary Forms of Religious Life” (1912/1995), the best book of sociology ever written according to some (Bellah, 1995). In this magisterial work, through a comprehensive survey of the anthropological evidence available at the time and fine conceptual analysis, Durkheim came to define from a strictly secular perspective phenomena such as the sacred and the profane, soul and magic, but also “mana” (a penetrating and connecting force) and collective “effervescence” (wild gesticulating, copulating, or aggressing when aboriginal family groups came together). The last two concepts can help us to understand the origin and persistence of the living force of the social in our daily experience, that is, what it is, what it feels like and how it plays itself out in relationships (Ikkos & McQueen, 2019). Although he makes no reference to Durkheim, nor to mana nor effervescence, social anthropologist Ongaro’s welcome ambition is to lift the social out of the shadow of the dominating bio- and psychological in the use of the biopsychosocial model and, thus, bring it to bear as an immediately experienced and enacted living force akin to mana and effervescence in contemporary psychiatric practice.In this commentary, we first review issues relating to the biopsychosocial model, Ongaro’s externalist foundations, and predictive processing and functional neurological, somatic and mental symptoms. We then discuss our formulation of contemporary anorexia nervosa and hysteria as examples of our attempts at enhanced engagement with the social. We conclude by suggesting the work of social historian and cultural critic Walter Benjamin (1892–1940) as a vital resource for better engagement with the social in biopsychosocial practice in the future. [End Page 325]The Biopsychosocial ModelMany find that in current practice the biopsycho-social model is simply the biomedical cloaked in another name (Mohtashemi et al., 2016). Those most expert in it acknowledge doubts about what it is exactly (Bolton, 2022). Most would agree with Ongaro and Williamson that though not yet dead, if it is to survive as a clinical force in practice, it needs clarification and revival (Williamson, 2022). Bolton suggests that “we can make use of the term ‘biopsychosocial model’ as a shorthand for methodological assumptions that causes and/or cures of specific conditions at specific stages, including matters of adjustment and quality of life, will generally—across a wide range of conditions—include biological, psychological and social factors, and interactions between them. The contrast here is with the ‘biomedical model’, which deals with biological factors only” (Bolton, 2022). Bolton then discusses the utility and advantages of his definition of the model specifically in relation to research on the social determinants of disease and on pain. That is fine, as far as it goes, that is, research methodology and clinical theory. Ongaro, however, wants to ensure that the social is understood as a more immediately experienced and directly enacted force in clinical encounters. To achieve his aim, he argues, we need a more balanced and persuasive integration of all three components of the model: bio-psycho-social. In effect what he proposes is to vitalize psychiatry with something related to Durkheim’s ideas of mana and effervescence.Externalist FoundationsIn his first paper, Ongaro argues that he can partly achieve his aims by using the tools provided by our contemporary neuroscience research on “predictive processing” and philosophical theories of “enactivism” (Ongaro, 2024a). In his second paper he reports on his anthropological experience of living for 19 months with the Akha, a group of swidden farmers in highland Laos. Here he investigated how they respond to functional neurological disorders (FNDs), functional somatic symptoms (FSS) (Burton et al., 2020), also to what Western medicine defines as (functional) mental disorders (FMDs) and what the Akha and he sometimes conceive as spiritual... (shrink)

In this article we ask what it means for sociologists to practice intersectionality as a theoretical and methodological approach to inequality. What are the implications for choices of subject matter and style of work? We distinguish three styles of understanding intersectionality in practice: group-centered, process-centered, and system-centered. The first, emphasizes placing multiply-marginalized groups and their perspectives at the center of the research. The second, intersectionality as a process, highlights power as relational, seeing the interactions among variables as multiplying (...) oppressions at various points of intersection, and drawing attention to unmarked groups. Finally, seeing intersectionality as shaping the entire social system pushes analysis away from associating specific inequalities with unique institutions, instead looking for processes that are fully interactive, historically co-determining, and complex. Using several examples of recent, highly regarded qualitative studies, we draw attention to the comparative, contextual, and complex dimensions of sociological analysis that can be missing even when race, class, and gender are explicitly brought together. (shrink)

Background Artificial intelligence-driven Clinical Decision Support Systems (AI-CDSS) are being increasingly introduced into various domains of health care for diagnostic, prognostic, therapeutic and other purposes. A significant part of the discourse on ethically appropriate conditions relate to the levels of understanding and explicability needed for ensuring responsible clinical decision-making when using AI-CDSS. Empirical evidence on stakeholders’ viewpoints on these issues is scarce so far. The present study complements the empirical-ethical body of research by, on the one (...) hand, investigating the requirements for understanding and explicability in depth with regard to the rationale behind them. On the other hand, it surveys medical students at the end of their studies as stakeholders, of whom little data is available so far, but for whom AI-CDSS will be an important part of their medical practice. Methods Fifteen semi-structured qualitative interviews (each lasting an average of 56 min) were conducted with German medical students to investigate their perspectives and attitudes on the use of AI-CDSS. The problem-centred interviews draw on two hypothetical case vignettes of AI-CDSS employed in nephrology and surgery. Interviewees’ perceptions and convictions of their own clinical role and responsibilities in dealing with AI-CDSS were elicited as well as viewpoints on explicability as well as the necessary level of understanding and competencies needed on the clinicians’ side. The qualitative data were analysed according to key principles of qualitative content analysis (Kuckartz). Results In response to the central question about the necessary understanding of AI-CDSS tools and the emergence of their outputs as well as the reasons for the requirements placed on them, two types of argumentation could be differentiated inductively from the interviewees’ statements: the first type, the clinician as a systemic trustee (or “the one relying”), highlights that there needs to be empirical evidence and adequate approval processes that guarantee minimised harm and a clinical benefit from the employment of an AI-CDSS. Based on proof of these requirements, the use of an AI-CDSS would be appropriate, as according to “the one relying”, clinicians should choose those measures that statistically cause the least harm. The second type, the clinician as an individual expert (or “the one controlling”), sets higher prerequisites that go beyond ensuring empirical evidence and adequate approval processes. These higher prerequisites relate to the clinician’s necessary level of competence and understanding of how a specific AI-CDSS works and how to use it properly in order to evaluate its outputs and to mitigate potential risks for the individual patient. Both types are unified in their high esteem of evidence-based clinical practice and the need to communicate with the patient on the use of medical AI. However, the interviewees’ different conceptions of the clinician’s role and responsibilities cause them to have different requirements regarding the clinician’s understanding and explicability of an AI-CDSS beyond the proof of benefit. Conclusions The study results highlight two different types among (future) clinicians regarding their view of the necessary levels of understanding and competence. These findings should inform the debate on appropriate training programmes and professional standards (e.g. clinical practice guidelines) that enable the safe and effective clinical employment of AI-CDSS in various clinical fields. While current approaches search for appropriate minimum requirements of the necessary understanding and competence, the differences between (future) clinicians in terms of their information and understanding needs described here can lead to more differentiated approaches to solutions. (shrink)

The meaningful consideration of cultural practices, values and beliefs is a necessary component in the effective translation of advancements in neuroscience to clinical practice and public discourse. Society’s immense investment in biomedical science and technology, in conjunction with an increasingly diverse socio-cultural landscape, necessitates the study of how potential discoveries in neurodegenerative diseases such as Alzheimer disease are perceived and utilized across cultures. Building on the work of neuroscientists, ethicists and philosophers, we argue that the growing field (...) of neuroethics provides a pragmatic and constructive pathway to guide advancements in neuroscience in a manner that is culturally nuanced and relevant. Here we review a case study of one issue in culturally oriented neuroscience research where it is evident that traditional research ethics must be broadened and the values and needs of diverse populations considered for meaningful and relevant research practices. A global approach to neuroethics has the potential to furnish critical engagement with cultural considerations of advancements in neuroscience. (shrink)

In this paper, we examine the practice and promises of digital phenotyping. We build on work on the ‘data self’ to focus on a medical domain in which the value and nature of knowledge and relations with data have been played out with particular persistence, that of Alzheimer's disease research. Drawing on research with researchers and developers, we consider the intersection of hopes and concerns related to both digital tools and Alzheimer's disease using the metaphor of the (...) ‘data shadow’. We suggest that as a tool for engaging with the nature of the data self, the shadow is usefully able to capture both the dynamic and distorted nature of data representations, and the unease and concern associated with encounters between individuals or groups and data about them. We then consider what the data shadow ‘is’ in relation to ageing data subjects, and the nature of the representation of the individual's cognitive state and dementia risk that is produced by digital tools. Second, we consider what the data shadow ‘does’, through researchers and practitioners’ discussions of digital phenotyping practices in the dementia field as alternately empowering, enabling and threatening. (shrink)

Ethics, Aging and Society...is the first major work in ten years to critically address issues and methodologies in aging and ethics...This well-organized volume begins theoretically and offers new ways of thinking about ethics that can handle the complexities and realities of aging in particular social contexts."--Choice This new research-based book, by experts in the field of ethics, is excellent and much-needed...I challenge you to consider reading this book and seeing all the ways in which you might be (...) forced to rethink things that most of us take as given for ethics and aging. I know you will not be disappointed and I guarantee you will end up thinking long and hard about personal and professional decisions you may have made as well as your assumptions about aging in America."--CFLE Network Newsletter This is a book that should be required reading for all involved in the ethical provision of services to the aging on any level, as well as for policy makers and administrators in positions of influence over the lives of older patients."--PsycCRITIQUES...the authors' application of feminist ethics to frail elders rings true to both my clinical experience working with frail elders, and my research experience trying to understand their quality of life concerns...there were true gems of ideas [in this book] that illuminated the limitations of the dominant paradigm of autonomy in bioethics. [The authors] make a compelling critique of end-of-life care."--GeriPal: A Geriatrics and Palliative Care Blog This book presents second generation issues in ethics, aging, and society by presenting critical outcomes that arise when ethics is applied to the practical concerns that occur in day-to-day elder care. The first volume in over 10 years to address ethics and gerontology, it is unparalleled in its comprehensiveness and integration of well-developed philosophical arguments with empirical research, humanistic scholarship, and insights gained from practical experience. This book challenges the tried and true approaches to ethical issues in aging and opens avenues for creative problem-solving. The authors' diverse backgrounds bring the advantages of both interdisciplinary scholarship and practical experience to this comprehensive textbook. It is an essential resource for those interested in, and working with, older people, from upper-level undergraduate students and graduate-division students, to gerontology practitioners in training. Key Features: Presents the first major work in over 10 years to integrate the disciplines of ethics and aging Includes case studies derived from day-to-day practice Addresses individual/clinical ethics in health and long-term care and ethical issues raised by public policy, cultural norms and social attitudes Examines such critical issues as Alzheimer's disease, long-term care, ageism, public policy, anti-aging medicine, elder abuse, and natural disasters Explores new directions in ethical and social philosophy as they pertain to gerontology and care. (shrink)

BackgroundObtaining a research participant’s voluntary and informed consent is the bedrock of sound ethics practice. Greater inclusion of children in research has led to questions about how paediatric consent operates in practice to accord with current and emerging legal and socio-ethical issues, norms, and requirements.MethodsEmploying a qualitative thematic content analysis, we examined paediatric consent forms from major academic centres and public organisations across Canada dated from 2008–2011, which were purposively selected to reflect different types of research ethics (...) boards, participants, and studies. The studies included biobanking, longitudinal studies, and gene-environment studies. Our purpose was to explore the following six emerging issues: (1) whether the scope of parental consent allows for a child’s assent, dissent, or future consent; (2) whether the concepts of risk and benefit incorporate the child’s psychological and social perspective; (3) whether a child’s ability to withdraw is respected and to what extent withdrawal is permitted; (4) whether the return of research results includes individual results and/or incidental findings and the processes involved therein; (5) whether privacy and confidentiality concerns adequately address the child’s perspective and whether standard data and/or sample identifiability nomenclature is used; and (6) whether retention of and access to paediatric biological samples and associated medical data are addressed.ResultsThe review suggests gaps and variability in the consent forms with respect to addressing each of the six issues. Many forms did not discuss the possibility of returning research results, be they individual or general/aggregate results. Forms were also divided in terms of the scope of parental consent (specific versus broad), and none discussed a process for resolving disputes that can arise when either the parents or the child wishes to withdraw from the study.ConclusionsThe analysis provides valuable insight and evidence into how consent forms address current ethical issues. While we do not thoroughly explore the contexts and reasons behind consent form gaps and variability, we do advocate and formulate the development of best practices for drafting paediatric health research consent forms. This can greatly ameliorate current gaps and facilitate harmonised and yet contextualised approaches to paediatric health research ethics. (shrink)

Alzheimer’s, accounting for 60-80% of dementia cases, presents a specific pathologyand a range of symptoms, including memory loss, impaired reasoning, andother cognitive declines. The disease’s progression and management require a comprehensiveapproach involving professional care, family involvement, and individualizedcare plans.The research focuses on methods for working with individuals with Alzheimer’sdisease and their families, highlighting the importance of communication in implementingindividualized care plans. It aims to show that a well-prepared care plan, coupledwith effective communication with family members, can improve quality (...) of life andpotentially slow disease progression. It was conducted in two parts: a questionnaire forcaregivers working with Alzheimer’s patients and a semi-structured interview with 33family members of individuals diagnosed with the disease. This approach provided bothquantitative and qualitative data, offering a comprehensive understanding of the issues.To improve Alzheimer’s care, we recommend enhancing family involvementthrough structured models and training, increasing the accessibility of specializedservices, promoting professional development, strengthening ethical communicationstandards, implementing comprehensive support systems, and regularly evaluatingcare plans. These measures aim to provide holistic and effective care strategies, improvingthe quality of life for individuals with Alzheimer’s and their families. (shrink)

This article shows how funding research on Alzheimer's disease became a priority for the British Medical Research Council in the late 1970s and 1980s, thanks to work that isolated new pathological and biochemical markers, and showed that the disease affected a significant proportion of the elderly population. In contrast to histories that focus on the emergence of new and competing theories of disease causation in this period, I argue that concerns over the use of different assessment methods (...) ensured the MRC's immediate priority was standardising the ways in which researchers identified and recorded symptoms of Alzheimer's disease in potential research subjects. I detail how the rationale behind the development of standard assessment guidelines was less about arriving at a firm diagnosis and more about facilitating research by generating data that could be easily compared across the disciplines and sites that constitute modern biomedicine. Drawing on criticism of specific tests in the MRC's guidelines, which some psychiatrists argued were "middle class biased", I also show that debates over standardisation did not simply reflect concerns specific to the fields or areas of research that the MRC sought to govern. Questions about the validity of standard assessment guidelines for Alzheimer's disease embodied broader concerns about education and social class, which ensured that distinguishing normal from pathological in old age remained a contested and historically contingent process. (shrink)

SCHOFIELD I, TOLSON D and FLEMING V. Nursing Inquiry 2012; 19: 165–176 [Epub ahead of print]How nurses understand and care for older people with delirium in the acute hospital: a Critical Discourse AnalysisDelirium is a common presentation of deteriorating health in older people. It is potentially deleterious in terms of patient experience and clinical outcomes. Much of what is known about delirium is through positivist research, which forms the evidence base for disease‐based classification systems and clinical (...) guidelines. There is little systematic study of nurses’ day‐to‐day practice of nursing patients with delirium. The aim was to uncover the kinds of knowledge that informs nurses’ care and to explicate the basis of that knowledge. Critical Discourse Analysis is underpinned by the premise that powerful interests within society mediate how social practices are constructed. Links were made between the grammatical and lexical features of nurses’ language about care in interviews and naturalistic settings, and the healthcare context. Care focused on the continuous surveillance of patients with delirium by nurses themselves or vicariously through other patients, and containment. Nurses influenced by major discourses of risk reduction and safety, constructed patients with delirium as risk objects. The philosophy of person‐centred and dignified care advocated in nursing literature and government policy is an emerging discourse, though little evident in the data. The current dominant discourses on safety must give space to discourses of dignity and compassion. (shrink)

Training in psychoanalysis is a long and demanding process. However, the quality of education available is hugely variable across the world. The structure of psychoanalytic education, centered on the hierarchical "training analysis" system, reflected a concerted effort to maintain a stable and high quality educational process. However, throughout time this system has become a major source of institutional contradictions that affect_ _the training of candidates, the scientific developments within psychoanalysis, and the nexus of psychoanalytic theory and practice (...) with the surrounding scientific, social and cultural world. _Psychoanalytic Education at the Crossroads_ examines the ways in which group processes, the hierarchal culture in institutes, the influence of individual personalities, the lack of research and the faults in supervision can all stifle creativity and hinder candidates’ progress. In this compelling work, _Otto Kernberg_ sets out clear suggestions for how these issues can be addressed, and how he sees the future of psychoanalytic education across all psychoanalytic settings and schools of thought. The first part of this volume is focused primarily on the analysis of the nature of these problems and their effects on the personal analysis and supervision of candidates; on theoretical and clinical seminars; on selection, progression, and graduation; on educational principles and requirements, developments of theory and technique and, in particular, limitation versus expansion of the realm of interests and applications of psychoanalysis. The second part of this volume deals with proposals of solutions to the problems encountered, and major suggestions for innovation in psychoanalytic education. The author’s work in this area has been hugely influential. Kernberg has made a substantive difference in the development of psychoanalytic institutes and education, and continues to do so. _Psychoanalytic Education at the Crossroads_ will be essential reading to anyone involved in psychoanalytic education, whether as a psychoanalyst, psychoanalytic psychotherapist, trainee, trainer, or supervisor. (shrink)

Background: The field of voice and speech analysis has become increasingly popular over the last 10 years, and articles on its use in detecting neurodegenerative diseases have proliferated. Many studies have identified characteristic speech features that can be used to draw an accurate distinction between healthy aging among older people and those with mild cognitive impairment and Alzheimer's disease. Speech analysis has been singled out as a cost-effective and reliable method for detecting the presence of both conditions. In this (...) class='Hi'>research, a systematic review was conducted to determine these features and their diagnostic accuracy.Methods: Peer-reviewed literature was located across multiple databases, involving studies that apply new procedures of automatic speech analysis to collect behavioral evidence of linguistic impairments along with their diagnostic accuracy on Alzheimer's disease and mild cognitive impairment. The risk of bias was assessed by using JBI and QUADAS-2 checklists.Results: Thirty-five papers met the inclusion criteria; of these, 11 were descriptive studies that either identified voice features or explored their cognitive correlates, and the rest were diagnostic studies. Overall, the studies were of good quality and presented solid evidence of the usefulness of this technique. The distinctive acoustic and rhythmic features found are gathered. Most studies record a diagnostic accuracy over 88% for Alzheimer's and 80% for mild cognitive impairment.Conclusion: Automatic speech analysis is a promising tool for diagnosing mild cognitive impairment and Alzheimer's disease. The reported features seem to be indicators of the cognitive changes in older people. The specific features and the cognitive changes involved could be the subject of further research. (shrink)

The question of work–family practices commonly arises in both theory and daily practice as a matter of responsibility in today’s organisations. More information is needed about them for socially responsible human resource management. In this article our interest is in how work–family practices, serve as an important element of SR-HRM, constructed as helpful for employees’ work–family integration, are realised in organisational life. We investigate the discursive ways in which members of two different organisations working at different organisational (...) levels construct the issue in the Finnish context. Three discourses were interpreted: a discourse of compliance with external pressure, a discourse of negotiation and a discourse of individual flexibility. Discursive constructions of work–family practices make visible the complex interconnectedness of individuals and organisations with the environment in which they operate. Many organisational efforts to create positive work–family practices can, in fact, lead to failure to make these practices either available or usable, and they may result in the unjust treatment of organisation members. Creating sustainable work–family practices is a complex challenge for which SR-HRM must work out a solution. (shrink)

This symposium of the Journal of Bioethical Inquiry illustrates structural competency: how clinical practitioners can intervene on social and institutional determinants of health. It will require training clinicians to see and act on structural barriers to health, to adapt imaginative structural approaches from fields outside of medicine, and to collaborate with disciplines and institutions outside of medicine. Case studies of effective work on all of these levels are presented in this volume. The contributors exemplify structural competency (...) from many angles, from the implications of epigenetics for environmental intervention in personalized medicine to the ways clinicians can act on fundamental causes of disease, address abuses of power in clinical training, racially desegregate cities to reduce health disparities, address the systemic causes of torture by police, and implement harm-reduction programs for addiction in the face of punitive drug laws. Together, these contributors demonstrate the unique roles that clinicians can play in breaking systemic barriers to health and the benefit to the U.S. healthcare system of adopting innovations from outside of the United States and outside of clinical medicine. (shrink)

To do minor activist research is to create and make use of critical neologistic vocabularies hopefully balancing the ascetic impoverishment of direction and syntax in majority vocabularies when conceptualized as universals. To do minor activist research is therefore to unsettle received discourses, narratives, and material social practices of power to develop means of resistance in new and different registers. To do minor activist research is to train the imagination for a collaboratively accomplished re/presentation of data through (...) creating points of encounters, thus engendering an affirmative perspectivist’s ethos. Re/presenting data as a space in which one’s own thinking is challenged, hence providing a perspective of the storying practices across participants and across different disciplinary, ideological, or personal boundaries within the researcher’s and the researched specific positioning. This requires getting everyone to participate in the “analysis” of data, and then getting everyone “inside” the text: situating data-inquiries in immanence. It therefore demands a liberation from old scripts, and challenges how everyone is transformed into text, with perspectivism being simultaneously means and objective for avoiding the reproduction of both old scripts and ethics. Our goal is to enhance (self)reflexivity regarding knowledge production and research methodologies, to influence actual research practices through fostering a more inclusive, open, and collaborative approach to research that transcends traditional boundaries and embraces the fluid and hybrid nature of knowledge production. Ultimately, turning the concept of ethics through minoring into a thinking hub and pedagogy for change. The first and theoretical section is on how to ethically represent data in a new-empiricist and post qualitative environment. We call it data-philosophy. Our ontological approach brings its own concepts, which reflect the perspectives from which we argue. In the three next sections, we follow up by looking more closely into these ideas in re/presenting empirical qualitative research to invite hybrid and fluid configurations. Here, activist research refers to bringing actors into our thinking about the data, to accentuate the collaborative, open to thinking differently through staying close to the data. We then bring it all together in a section on the rebirth of language, to open for what we refer to as a storying personifying, thereby storying data together as a process of becoming, of mutuality and affect as a source of agency. We argue that this creates a theory of science and ethics in data analysis, and in re/presenting data, which are closely entangled. (shrink)

Next SectionThe current focus on early intervention trials in Alzheimer's disease research raises particular ethical issues. These arise out of problems of validating study results and translating them into general practice for one thing and out of unwanted effects of an uncertain diagnosis for diagnosed people for another. The first addresses the demands of scientific research compared to those of medical practice, questioning how the medical value of clinical trials is evaluated. The second relates the scientific and (...) medical value of early intervention trials to the normative value of an uncertain diagnosis. Are people who are diagnosed with a potential early form of AD in clinical studies patients proper—although they would not have been diagnosed with the given “disease” in non-research-oriented medical settings? The very problem of framing this question in terms of diagnostic misconceptions connects conceptual with ethical issues of research into preclinical stages of neurodegenerative diseases. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reifying Relevance in Mild Cognitive Impairment:An Appeal for Care and CautionJanice E. Graham (bio) and Karen Ritchie (bio)KeywordsAlzheimer’s disease, construction, dementia, market forces, mild cognitive impairmentWe thank the reviewers for their thoughtful comments that probe shadowy areas in our argument, and we welcome this opportunity to elucidate our position. First, we are not repudiating the natural and social facts of pathologic brain degeneration and the physical and cognitive (...) impairments that manifest in people affected by dementia disorders. We are, however, questioning the epistemology, politics, and persistence by some to harden the construct of mild cognitive impairment (MCI) prematurely as a "natural" precursor to dementia. We suggested insufficiencies in viewing MCI as prodromal to Alzheimer's disease (AD; Graham and Ritchie 2006, 36), and pointed to evidence for the prognostic irrelevance of some MCI subcategories (35). The commentators have read our manuscript as suggesting that AD and MCI are different kinds, and that a diagnosis of AD is more "real" than that of MCI. But AD is also fraught with classification issues, as we describe in the section of our paper that deals with consensus committees, published practice guidelines, and the determination of treatment efficacy. Like MCI, AD is a heterogeneous condition, but unlike MCI, AD is a constructed practical kind that does some "work" beyond essentialist (neural degeneration, brain atrophy) claims. Its criteria identify people with well-defined dementia symptoms and multiple cognitive and functional impairments who are in need of, and benefit from, support. Even with these criteria, however, there have been great attempts to achieve definitional accuracy in dementia diagnoses. Practical refinements to the differential diagnosis of dementia based on solid research evidence have made way for more specific recognitions of vascular dementias, dementia of the Lewy body type, and other subtypes beyond AD. So AD too has been subject to more careful, more cautious operationalization in recent years, with research supporting multiple factors and the comorbidity of several types (kinds) of dementia in any one individual.Our paper takes up concerns that are not resolved for dementia and suggests that the nascent category of MCI is still so insufficiently defined as to be ambiguous, and as such, is in danger of identifying individuals with what will be, and has [End Page 57] already been, linked to a debilitating and deeply stigmatizing and fatal disorder (AD). We are not contesting the reality that some people begin to display early signs of cognitive loss, nor are we suggesting that symptoms be ignored; as researchers, we stand behind the careful tracking of symptoms and signs in patients and research participants as an essential clinical and research practice. In a era where the public has been made wary of the potentially fatal effects of new treatments whose more careful scrutiny in specific populations would have saved lives (e.g., Fontanarosa, Rennie, and DeAngelis 2004; Psaty and Furberg 2005), and made all the more popular by what Kramer coined "diagnostic bracket creep" (1993, 15), we are questioning the drivers and value of a premature diagnostic classification whose definitional accuracy is neither sufficient nor effective for specific identification of individuals.That matters of fact are constructed does not take away from their natural fact. Some people have subjective reports or show objective evidence of cognitive decline while having preserved activities of daily living—the construction of this evidence indicates they are not normal and they are not demented. Based on such evidence, where then does the balance of probability for MCI lie? A multidisciplinary international group of experts gathered in Stockholm in 2003 to discuss MCI concepts (Winblad et al. 2004). They acknowledged that the heterogeneous etiology of MCI contributes to "some confusion concerning the specific boundaries of the condition", stating that this "not normal, not demented" condition is nonetheless "useful both clinically and as a research entity" (p. 241). Importantly, they concluded that MCI needs "better definition" (p. 246). It was at this stage that we first wrote our manuscript, and in the subsequent two years we have eagerly awaited new studies, and the recognition of flexible, practical subtypes to evolve.We state "that MCI cannot be considered to be a separate clinical entity" (Graham and... (shrink)

The city of Manado and province of North Sulawesi have built a public identity based on religious harmony, claiming to successfully model tolerance and inter-religious relations for the rest of Indonesia. Yet, in discourses and practices relevant to everyday interactions in schools and political debates in the public sphere, two primary contested frames for belonging emerge in tension with one another. On the one hand, "aspirational coexistence" recognizes a common goal of working toward religious harmony and inclusive belonging. On the (...) other hand, "majoritarian coexistence," in which the legitimacy of religious minorities is understood as guaranteed exclusively by the goodwill of the Protestant majority, also emerges in discourses and practices of coexistence. These two agonistic frames of coexistence stem from both a real pride at having staved off ethno-religious violence that plagued surrounding regions at the turn of the twenty-first century, as well as a concern about whether the area will maintain a Christian majority in the future. Based on ethnographic research in Manado, North Sulawesi, a Protestant-majority region of Indonesia, Ethics of Belonging investigates the dynamics of ethical deliberation about religious coexistence. In this analysis, schools are understood as central sites for exchange about the ethics and politics of belonging in the nation. The author draws on in-depth fieldwork at three secondary schools (a public high school, private Catholic boarding school, and public madrasah), an inter-religious "exchange" program among university students, and societal debates about religion and belonging. Each of the schools promotes a distinct method to addressing diversity and a particular understanding of the relationship between religious and civic values. Larson's research demonstrates how ethical frameworks for approaching religious difference are channeled and negotiated through educational institutions, linking up with their broader political context and debates in the community. This resource argues for a consideration of ethical reflection as a fundamentally pedagogical process, with important ramifications beyond the immediate environment. The focus on educational institutions provides a critical connection between interpersonal and public ethical deliberation, elucidating the entanglements of ethics and politics and their manifestation across different societal scales. (shrink)

BackgroundPrevious empirical work among physicians has led us to propose that clinical practice is experienced by clinicians as an engagement-in-the-clinical-situation. In this study, we pursue our exploration of clinical practice ‘on its own terms’ by turning to the experience of patients.MethodsPhenomenological analysis of in-depth individual interviews with 8 patients.ResultsWe describe the patient experience as a set of three motifs: the shock on the realization of the illness, the chaos of the health care environment, and the anchor (...) point provided by an engaged physician. We draw on Heidegger’s notion of solicitude to show that patients are actively ascertaining the physician’s engagement in their care.ConclusionsThese findings lead us to question the classical “dual discourse” of medicine that offers a dichotomous account of clinical practice as the addition of care to cure, art to science, humanism to technique, and person to medical case. We found no such distinctions in our empirical investigation of clinical practice. Rather, in our synthesis, practice appears as a unitary experience. The physician’s solicitude for the patient entrains engagement in the clinical situation. Moreover, the solicitous, engaged physician constitutes an anchor point for the patient. (shrink)

Guattari’s prescient final text, Chaosmosis, argues that the conditions of Capital responsible for the current social-psychic-ecological crisis of migration demand modes of analysis capable of grasping their complexity, ones grounded in the ethico-aesthetic. It is a text that draws directly from the therapeutic practice that he, Tosquelles, Oury, and others in the Institutional Psychotherapy (IP) movement developed in their clinics. This work entailed the inclusion of aesthetic practices that work to deterritorialise the institution, shifting from carceral sites (...) and creating therapeutic spaces of care and refuge. This article explores the centrality of an ethico-aesthetic approach to the understanding of therapeutic space within the sites and clinical practice of Institutional Psychotherapy. Looking especially at daily life and the inclusion of aesthetic practice, it examines the particular notion of asylum that emerged in these sites that so informed the clinical and critical work of Guattari and Deleuze, and draws connections to the current global crisis of migration in the necessity of such sites to the forced segregation between those deemed mad and sane. (shrink)

Scholars increasingly point toward schools as meaningful contexts in which to provide psychosocial care for refugee children. Collaborative mental health care in school forms a particular practice of school-based mental health care provision. Developed in Canada and inspired by systemic intervention approaches, collaborative mental health care in schools involves the formation of an interdisciplinary care network, in which mental health care providers and school partners collaborate with each other and the refugee family in a joint assessment of child development and (...) mental health, as well as joint intervention planning and provision. It aims to move away from an individual perspective on refugee children’s development, toward an engagement with refugee families’ perspectives on their migration histories, cultural background and social condition in shaping assessment and intervention, as such fostering refugee empowerment, equality, and participation in the host society. Relating to the first stage of van Yperen’s four-stage model for establishing evidence-based youth care, this article aims to engage in an initial exploration of the effectiveness of a developing school-based collaborative mental health care practice in Leuven, Belgium. First, we propose a detailed description, co-developed through reflection on case documents, written process reflections, intervision, an initial identification of intervention themes, and articulating interconnections with scholarly literature on transcultural and systemic refugee trauma care. Second, we engage in an in-depth exploration of processes and working mechanisms, obtained through co-constructed clinical case analysis of case work collected through our practice in schools in Leuven, Belgium. Our descriptive analysis indicates the role of central processes that may operate as working mechanisms in school-based collaborative mental health care and points to how collaborative mental health care may mobilize the school and the family-school interaction as a vehicle of restoring safety and stability in the aftermath of cumulative traumatization. Our analysis furthermore forms an important starting point for reflections on future research opportunities, and central clinical dynamics touching upon power disparities and low-threshold access to mental health care for refugee families. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 11.1 (2004) 87-94 [Access article in PDF] Talk and the Nature of Delusions:Defending Sociocultural Perspectives on Mental Illness Eugenie Georgaca Keywords discourse, social constructionism, delusions, psychosis, mental illness, context It is very pleasing to see writers from philosophy, psychiatry and psychology, the three disciplines represented by this journal, debating the issue of delusions. The majority of the papers in this volume set out (...) to determine the underlying mechanisms responsible for delusions. As such, they offer themselves as discussions of the etiological factors of the formation and maintenance of delusions. My paper analyzes the interactional presentation and negotiation of statements that would be considered as delusional. This led some commentators (Ghaemi 2004; Sass 2004) to argue that the analysis of talk about delusions is useful, but cannot be extended to claims about the nature of delusions. In the following section, I discuss the ways in which analyzing interactions can be useful in clinical research and practice. Subsequently, I identify and critically discuss the assumptions about the nature of delusions that underlie these criticisms and the majority of the papers in this volume. The Usefulness of the Study of Interaction My paper can be seen as part of a growing body of studies that attempt to elucidate the role of interactional and discursive processes in the identification and management of disorders (Barrett 1988; Coulter 1975; Hak 1989; Pollner 1975; Smith 1978; Soyland 1994). Microsociological and ethnographic studies look at the properties of client-professional interaction with the aim of clarifying the tacit skills and knowledges used in such encounters. Palmer (2000), for example, argues that the recognition of disorder is a social and interactional issue both in the sense that the judgment of disorder is based on social criteria and in the sense that diagnosis is an interpersonal process with its own inherent social order. The aim, therefore, of analyzing professional-client interactions would be to articulate the properties of this implicit social order. Other researchers argue that diagnosis is not a process of identification or recognition of disorder, but rather a process of active construction of disorder and of transforming the person to a mental patient. Barrett's (1988) analysis of the transformation of a [End Page 87] person to a "person suffering from schizophrenia" and subsequently a "schizophrenic" through interviewing and report writing is an excellent example of this kind of work.The application of this approach to the field of delusions would attempt to address the issue of how delusions are diagnosed and managed through the interactions between the delusional patient and the clinician. In this paper and in previous work (Georgaca 1996, 2000) I showed that statements that have been diagnosed as delusional are presented and argued through using appropriate conversational strategies, drawing on socially meaningful systems of knowledge and applying appropriate rules of evidence. Moreover, I argued that there was no way in which these disagreements over competing versions of reality could be definitely settled conversationally, and that instances of breakdown in communication were due not to the delusional version being proven wrong, but to lack of explanatory frameworks within which the competing versions could be negotiated. At least in the exchanges analyzed, the criteria of implausibility, conviction, and incorrigibility were shown not to apply.Clinicians do not customarily investigate the truth of patient claims against empirical data (Maher 1992), which means that they have to judge claims on the basis of the patient's presentation in the diagnostic interview. Because there are no technical guidelines for the assessment of truth and falsity, plausibility and implausibility, rationality and irrationality, clinicians have to rely on personal judgment. The question then is on what grounds the clinician's personal judgment is granted the status of determining the truth of someone else's claim and in what capacity clinicians are called to make such decisions. I will not pursue this argument any further here. The point I want to make is that the analysis of professional-client interactions foregrounds the active role of professionals in clinical decisions and questions the criteria upon which decisions are... (shrink)

Patient or public involvement in health research is increasingly expected as a matter of policy. In theory, PPI can contribute both to the epistemic aims intrinsic to research, and to extrinsically valued features of research such as social inclusion and transparency. In practice, the aims of PPI have not always been clear, although there has been a tendency to encourage the involvement of so-called ordinary people who are regarded as representative of an assumed patient perspective. In (...) this paper we focus on the epistemic potential of PPI, using theoretical work in epistemology to develop a nuanced account of patients’ experiential knowledge and how this might contribute directly to conceptual development, hypothesis generation and data interpretation. We also consider how some features of health research pose barriers to this kind of epistemic contribution. Drawing on Miranda Fricker’s idea of testimonial injustice, we explore how disciplinary indicators of credibility in clinical and academic health research contexts might be wrongly applied to those involved in PPI, undermining their potential to contribute. Finally we argue for a range of strategies to maximize opportunities for patients to engage with research teams and make epistemologically significant contributions to research. (shrink)

This research focuses on how research ethics committee and integrity board members discuss and decide on solutions to case scenarios that involve a dimension of research ethics or integrity in collaborative settings. The cases involved issues around authorship, conflict of interest, disregard of good scientific practice and ethics review, and research with vulnerable populations (children and neonates). The cases were set in a university, a hospital, or a research institute. In the research, we used (...) a deductive qualitative approach with thematic analysis. Twenty-seven research ethics committee and research integrity board members from 16 European countries and one country outside Europe participated. Participants represented natural and life sciences, social sciences, and humanities. They worked on cases involving ethical/integrity issues in six different constellations. Results show that experts apply key elements of ethical decision making, namely identification of ethical issues, stakeholders, guidelines, solutions, and own positionality, in dealing collaboratively with ethics/ integrity problems, and the nature of the application depends on the complexity of the case. Understanding how individuals knowledgeable in research ethics and integrity, in this case, individuals serving on research ethics committees and integrity boards, approach ethical/ moral issues can help to identify strategies that may be useful in the development of research ethics and integrity training for junior researchers who may benefit from learning professional strategies. (shrink)

Applying Foucault’s concepts of disciplinary power and technologies of the self to the ex-periences of social work academics in English universities, this articles reveals their carceral existences, arguing that social work academics and their students exist within a “carceral network” which controls and normalises behaviour by simultaneously trapping them with-in and excluding them from succeeding in academic practices. While social work academics become “docile bodies” as they are shaped and trained by competing norms of (...) neoliberal higher education and professional social practice, their position as insiders and outsiders to both can also enable them to resist certain disciplinary expectations. The findings of the qualitative study discussed in this article support Foucault’s analysis of powerful institu-tions but problematise binary positions of docility or resistance to disciplinary power with-in them. Lived experiences of ‘becoming academic’ in English social work education reveal how normalising judgements and hierarchical observation intersect with neoliberal forms of responsibilisation to create a carcerality rooted in “incompetence”; how “technologies of relationships” are used to mediate individual forms of responsibilisation, and how having to negotiate multiple disciplinary regimes can create opportunities for resistance to each. (shrink)

The prevalence and negative impact of brain disorders are increasing. Clinical Neuropsychology is a specialty dedicated to understanding brain-behavior relationships, applying such knowledge to the assessment of cognitive, affective, and behavioral functioning associated with brain disorders, and designing and implementing effective treatments. The need for services goes beyond neurological diseases and has increased in areas of neurodevelopmental and psychiatric conditions, among others. In Europe, a great deal of variability exists in the education and training of Clinical Neuropsychologists. (...) Training models include master’s programs, continuing education courses, doctoral programs, and/or post-doctoral specialization depending on the country, with no common framework of requirements, although patients’ needs demand equal competencies across Europe. In the past five years, the Standing Committee on Clinical Neuropsychology of the European Federation of Psychologists’ Association has conducted a series of surveys and interviews with experts in the field representing 30 European countries. The information, along with information from the existing literature, is used in presenting an overview of current and relevant topics related to policy and guidelines in the training and competencies in Clinical Neuropsychology. An option for the way forward is the EuroPsy Specialist Certificate which is currently offered in Work- and Organizational psychology and Psychotherapy. It builds upon the Basic Certificate and complements national standards without overriding them. General principles can be found that can set the basis for a common, solid, and comprehensive specialty education/training, sharpening the Neuropsychologists’ competencies across Europe. The requirements in Clinical Neuropsychology should be comparable to those for the existing specialty areas in the EuroPsy model. Despite the perceived challenges, developing a Specialist Certificate appears a step forward for the development of Clinical Neuropsychology. Recommendations are proposed towards a shared framework of competencies by the means of a common level of education/training for the professionals in Europe. Benchmarking training standards and competencies across Europe has the potential of providing protection against unqualified and ethically questionable practice, creating transparency, raising the general European standard, and promoting mobility of both Clinical Neuropsychologists and patients in Europe, for the benefit of the professional field and the population. (shrink)

A British coffee chain’s fundraising practices constitute a background for this study to examine ideological discourses behind British charitable giving. The charity executes projects in coffee growing communities by providing education for children in disadvantaged neighbourhoods. The study takes a critical stance from a discursive paradigmatic perspective to analyse visual contents used by the charity. The applied visual critical discourse analysis was inspired by Barthes’ semiotic theory. Findings suggest that the adverts’ interpretative repertoires can serve ideologies that sustain the (...) donors’ social-cultural dominance over the recipients by justifying group-based social hierarchies. The chains of signifiers do not question the spectators’ moral position but rationalise status quo and maintain undisturbed consumption. Findings suggest the possibility that the discourses of prosocial behaviour incited under consuming conditions do not challenge but may even justify global inequality. This finding presents challenges facing charitable organisations balancing their work within wider commercial and cultural contexts. (shrink)

Queer Inclusion in Teacher Education explores the challenges and promises of building queer inclusive pedagogy and curriculum into teacher education. Weaving together theory, research findings, and practical "how-to" strategies and materials, it fills an important gap by offering a clear roadmap and resources for influencing the knowledge, beliefs, and actions of faculty working with pre-service teachers. While the book has implications for policy change, most immediately, readers will feel empowered with ideas for faculty development they can implement in their (...) own teacher education programs. Looking at both the politics and practices of teacher education and the ways in which queer issues manifest in schools, it is hopeful in suggesting that if teachers and pre-service teachers can critically reflect on homophobia and heteronormativity, they can begin to think about and relate to queer youth in a different, more positive and inclusive way. A Companion Website [http: //queerinclusion.com] with additional activities and materials for teacher educators and faculty development and a practical guide enhances the usefulness of the book. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Hermeneutical Injustice and Best PracticeAlasdair Coles, PhD, MRCP (bio)To a doctor who routinely sees people with psychosis and neurological conditions causing strange experiences, José Porcher’s paper is challenging and troubling.Challenging, because the accusation of hermeneutical injustice is accurate. In the hurly burly of the emergency department or a government outpatient clinic, doctors resort to reductionism, for the sake of urgent efficiency. A person becomes a “case of psychosis” and (...) the immediate questions are: “Should they be admitted? Are they fit to make their own decisions? What medication should we prescribe?” In that context, spending time on analyzing the contents of the delusions, and acknowledging their meaning to the individual, is a luxury. Most doctors, burnt out by COVID and struggling to get people basic healthcare, will probably be unconcerned about hermeneutical injustice. But, disdain for the experience of psychosis leads to loss of trust between patient and doctor, as nicely illustrated by Heriot-Maitland, Knight, and Peters’ first patient. One consequence is that patients withhold information they imagine will not be well received by the medical profession. In my experience, of studying the rare entity of people with epilepsy that causes pleasurable or even religious experience, the patients have usually not discussed this with their doctor (Coles & Collicut, 2019) A tangible medical consequence is that their doctors are not aware of the risk of non-compliance with anticonvulsant drugs, so that they are at risk of serial seizures or even sudden death.Porcher’s uncritical appreciation of the Avraham case worries me. Although one of the two therapists is described as “particularly well-versed in Jewish custom and lore” (Bilu et al., 1990), they are not believers. Yet, they take on priestly roles. For instance, after identifying Avraham’s “the Black” as a demon (“which the patient did not belie” [Bilu et al., p. 110]), they prescribe incantations based on Jewish exorcism rites. And, once Avraham was better, he and his wife attributed his “miraculous cure” to the therapists who they regarded as “pious and pure hearted” (Bilu et al., p. 116). Not only are Avraham’s secular therapists being disingenuous, it is dangerous for seculars to appropriate religious language, concepts, and customs. In particular, clumsy use of exorcism rituals can lead to long-term spiritual distress. Those ministers of religion who practice deliverance [exorcism] are highly trained, not least to respect the importance of asking for psychiatric [End Page 239] help. It is unwise not to return the professional favor. Avraham’s therapists should have called in a Jewish minister, trained in clinical pastoral care, to assist them.Key issues are raised by Porcher’s analysis of the Femi case. Femi presented with a psychosis that included religious content. This is common (Sofou et al., 2021): religious imagery is present in 5% to 50% of cases of psychosis, assessed by repeated studies across multiple cultures. The medical team concluded Femi had a psychosis, because his symptoms caused him harm (social isolation, absence from work). Porcher rightly condemns Femi’s therapists because they undermined his dignity, by invalidating his experience of God. And Porcher goes on to state the “both–and” view, that something can be psychopathology and a religious experience. So far so good. But what Porcher does not allow is that some people experience psychoses with very harmful and dark religious imagery, invalidation of which is therapeutic. So, when Porcher asks “what could ever justify someone in the judgment that someone’s religious experiences are illegitimate?” the answer is: compassion. Schizophrenia is not fun. And the disease causes hallucinations that have no relation to reality; to the person I saw recently who believed her clothes were eating her, how helpful would it be to validate the nonsense of clothes with teeth? It follows that some religious delusions may be just that. And people are helped by knowing that. That is the reality of care of the deluded patient. For those therapists who just assume all religious content is inauthentic, Porcher’s article stands as a useful corrective. But assuming the opposite may be as harmful or more. There has to be judgement somewhere along the line. Best practice is that this is done... (shrink)

This paper attempts to bring to the attention of the readers a concept that broadens ethical considerations for Alzheimer's disease research. We propose we move away from the ethical paradigm that focuses on avoidance of coercion for participation in studies as well as privacy and safety to a more inclusive paradigm that will not only include the principles outlined above but will also guarantee access to new treatments for individuals that participate in research and other members of society. (...) Specifically, if the research being performed results in a new treatment for Alzheimer's disease, would the individuals participating in the research and other members of their community have access to and benefit from these treatments, given the availability of financial and other resources in the society that will allow for the implementation of these treatments. This paper will propose a model that will facilitate the achievement of these broader ethical considerations. (shrink)

Alzheimer’s disease is a very common, progressive and still incurable disease. Future possibilities for its cure lie in the promotion of research that will increase our knowledge of the disorder’s causes and lead to the discovery of effective remedies. Such research will necessarily involve individuals suffering from Alzheimer’s disease. This raises the controversial issue of whether patients with Alzheimer’s disease are competent to give their consent for research participation.

This paper focuses on the causation of diseases, particularly on the idea of a “genetic cause” taking Alzheimer’s Disease (AD) as an example. We (1) provide some historical information and a synopsis of the current knowledge on the etiology and pathogenesis of AD, (2) analyse some conceptual problems related to the notion of “genetic disease” (3) elaborate on the alleged (genetic) cause of AD, and (4) place the discussion on the cause of AD in a broader philosophical context, paying (...) attention to a constructivist perspective, the notions of causal connection and causal selection, and to some practical and normative consequences of our analysis. We conclude (a) that AD is not a specific disease entity with one specific cause, (b) that the idea of a single (sufficient) cause can still function as a heuristic tool in AD research and practice, and (c) that a “belief” in causation can go together with the notions of multicausality and probability. (shrink)

Positive Psychology Interventions as an Opportunity in Arab Countries to Promoting Well-being AbstractIn this perspective paper, we emphasize the importance of further research on culturally-sensitive positive psychology interventions in the Arab region. We argue that these interventions are needed in the region because they not only reduce mental health problems but also promote well-being and flourishing. To achieve this, we shed light on the cultural elements of the Arab region and how the concept of well-being differs from that of (...) Western culture. We review the research conducted in Arabia, briefly evaluate the quality of this research and list some adapted measurements. We furthermore propose guidelines and recommendations for future evidence-based positive psychology interventions research to align with the national culture in various sectors and community samples that contribute to the development of well-being in the Arab world.Introduction Extensive research on Positive Psychology Interventions (PPIs) - defined as activities focus on promoting positive feelings, thoughts, or behaviour (Sin & Lyubomirsky, 2009) - has shown their effectiveness in well-being and mental illness (e.g., Chakhssi et al., 2018; Hendriks et al., 2020). A recent review of 347 studies showed that PPIs have a significant effect on promoting quality of life and well-being and reducing anxiety and depression (Carr et al., 2020). However, the issue is that most of these studies (82%) remain narrow in focus only on Western Educated Industrialised Rich Democratic (WEIRD) countries (Hendriks et al., 2019). Therefore, they may not be effective for other countries such as the Arab countries where there are various cultural differences. This highlights the key role that culture can play in enhancing PPIs engagement, acceptability, and eventually, effectiveness (Hendriks & Graafsma, 2019). Recently, the field of PP in the Arab region has begun to grow (Basurrah et al., 2021; Rao et al., 2015). However, studies conducted in these countries are scant and of poor methodological quality. We have found humble quantity and quality of empirical studies. Yet, Arab countries, home to 5% of the world’s population, have a burden of mental health problems above global levels (GBD 2015 Eastern Mediterranean Region Mental Health Collaborators, 2018). Prevalent stigma, war and conflict were some of the contributors (Maalouf et al., 2019). Thus, to properly address this cultural stigma against mental health problems, PPIs could provide an additional role alongside traditional psychology approaches (e.g., Cognitive Behavioural therapy - CBT). Further, in light of the political conditions that some Arab countries are going through and the negative effects that they cause, it has become necessary to use the method of prevention that is the focus of PP and not only of treatment as a strategy for applications and practice. It has been noted that the mental health care system in the Arab region focuses highly on illnesses treatment and neglects the significant role that PP plays in enhancing human potential and well-being. We - here in Arabia –are becoming more influenced by many global issues particularly the COVID-19 pandemic and their impact on mental health and well-being (e. g. prevalence of stress, anxiety, depression among the general population during the pandemic (Salari et al., 2020). In response, Waters et al. (2021) have recently presented how positive psychological factors can play a significant role in buffering mental illness, enhancing mental health throughout the pandemic, and building positive processes and capacities that can help to promote future mental health.Here in this perspective paper, we highlight the cultural aspects of Arab countries. Specifically, we present previous PPIs research conducted in Arabia and briefly evaluate the quality of this research. Importantly, we discuss the need of developing an indigenous and culturally sensitive PP among the Arab region (Lambert et al., 2015).Arab Culture “Arab World,” which comprises 5% of the world’s population, refers to the Arab countries in the Middle East and North Africa. Despite the increasing pace and progress of different businesses in many Arab countries, individual communities are still limited in certain prominent economic places. Arab people rather gather in collective communities. They generally share the same Arabic Islamic culture, speak the same language, and descend from the same Arab families when going back in history no matter what nationality they have nowadays. Yet, very many changes came to communities before borders were drawn between countries and after. For instance, geography, topography, demography, and socio-economic status affect peoples’ nature of jobs and lifestyles. For example, Arabs in the east, west, or the middle have similar tongues; however, almost every Arab country has its accent. Therefore, people need to go back to the formal Arabic language ‘Fus-ha’ or learn more about different Arabic dialects when communicating cross-countries. According to Hofstede’s model (2011) based on the individualism-collectivism dimension, the Arab countries (Eastern society) have been classified as a collectivist culture, where their identity and decisions are influenced by social systems. In contrast, the United States (Western society) has been classified as an individualist culture focusing on individual decisions. Although there are degrees of individualism among Arabs in certain countries, they still share collective common characteristics. Here, we explore the meaning of collectivistic conceptions of the self, emotions, values, and religion in Arab countries and how they differ from those in individual Western cultures. The Self Since the field of PP focuses on the development of self, it is vital to recognize that self-concept varies across cultures. Individualism generally emphasises the self-directed and autonomous individual (Realo et al., 2002). People in individualist countries focus primarily on their personal characteristics (e.g., motives, abilities) to build their self-concept. On the other hand, collectivism refers to several social structures that highly value the groups to which people belong, such as family and tribe (Realo, 2003). People in collectivist countries such as the Arab countries focus primarily on their relationships with others to build their self-concept (Markus & Kitayama, 1991). Hence, research from Arab countries should focus on the core elements of collectivism when implementing PPIs to make a significant, meaningful impact. For example, people from a collective culture may experience a greater enhancement in well-being when practising interventions that are more prosocial and group-oriented such as compassion, performing acts of kindness, writing a gratitude letter, and using character strengths in everyday context including social context, compared with self-oriented interventions such as identifying character strengths. Emotions, value, and Religion Research shows that Western culture emphasises the goal of maximizing positive emotions, while Eastern culture emphasises embracing and balancing positive and negative emotions (Leu et al., 2011). To illustrate, culture plays an important role in influencing perceptions of happiness. People in individualist countries value happiness highly. In contrast, people from the collective countries value low arousal positive emotions (Leu et al., 2011) and exhibit a fear of happiness (Joshanloo & Weijers, 2014; Joshanloo, 2013). Hence, the influence of positive emotions plays a limited role in the mental health of Eastern society. Speaking of Value, for an Arab, the family is the centre of honour and the most important social unit. This loyalty has an impact on every part of an Arab’s life. Arabs honour their families and highly value their friendships. Therefore, future research could shed more light on group-oriented interventions (e.g., kindness) that focus more on the relationship with family, friends, and community. When it comes to religion, Arab society has a rich culture in values and believes that place a high emphasis on spirituality. Religion is the most important and distinctive aspect of Arab culture. Arab countries vary in terms of religion, with Islam being the predominant religion in most of them. Well-being (Hedonic and Eudaimonic) It is necessary here to clarify what is meant by hedonic and eudaimonic definitions of well-being. While the term ‘Hedonic’ is based on the pursuit of maximum levels of pleasure (feeling good), the term ‘Eudaimonic’, on the other hand, is based on meaning and the development of virtues (functioning well; Keyes & Annas, 2009). Research indicates that cultures are not equally supportive of hedonic and eudaimonic aspects (Joshanloo & Jarden, 2016). In comparison to collectivism, hedonism appears to be more congruent with individualism (Joshanloo, 2014). Pleasure and positive emotions are considered a way to pursue happiness in Western culture, while this method is not highly favoured in Eastern cultures (Lee et al., 2013); Because they consider suffering and negative emotions as contributing factors to spiritual development. Therefore, the eastern perspective is more in line with a eudaimonistic view which emphasises virtues, meaning, and feeling of belongingness. However, although we believe that both approaches can be found to a certain level in both cultures, the differences suggest that there are different routes to happiness. Positive Psychology in the Arab region Positive psychology - "the scientific study of what makes life most worth living" (Seligman & Csikszentmihalyi, 2000) - is one of the newest branches of psychology. It focuses on three main pillars: (1) positive subjective experiences (such as happiness and love); (2) positive individual characters (such as gratitude and compassion); and (3) positive institutions (for the application of positive principles within institutions and organizations; Seligman & Csikszentmiha lyi, 2000). Some of the main topics of interest in positive psychology include character strengths, gratitude, hope, happiness, mindfulness, optimism, positive thinking, and resilience. Within the applications of this science, various domains of well-being (such as happiness, engagement, positive emotions, and meaning) can be enhanced by practising positive psychology interventions (Sin & Lyubomirsky, 2009). Interestingly, these interventions have also produced benefits beyond well-being, such as reduced mental health issues (Chakhssi et al., 2018; Hendriks et al., 2020).Nowadays, PP is increasingly noticed in the Arab world (Lambert & Pasha-Zaidi, 2019; Rao et al., 2015). In recent years, there has been a great effort to explore the PP field across Arab countries. Several initiatives have emerged aimed at promoting well-being and flourishing. For example, the Middle East Journal of Positive Psychology published its first volume in 2015. On the International Day of Happiness in 2017, United Arab Emirates University launched its Emirates Center for Happiness Research. Meanwhile, Effat University in Saudi Arabia started the first Positive Psychology and Well-being Research Lab, the first symposium, and the first PP course. In 2019, Louise Lambert and Nausheen Pasha-Zaidi published the first regional text entitled “Positive Psychology in the Middle East/North Africa.” There are other efforts spent in the region as well; such as the work conducted in Egypt. Ibrahim Younus established the Arab Association for Positive Psychology https://www.psycholearn.com/en/associative.php which provides several courses on PP and also published a book entitled “The Power of Positive Psychology” (Younus, 2017). Despite this development, nothing can compare to the quantity and even quality of research in other countries. In light of our observations, the few PP studies may be attributed to the lack of awareness of the constructive approach and prevention compared to problem-solving. An Arab dentist once said: “people do not come to me until they are badly in pain.” In any case, many studies have taken place in Arab countries in the last decade, more of which are descriptive and less of which experimental. For example, Abdel-Khalek (2010) found positive correlations between quality of life, subjective well-being, and religiosity among students in Kuwait. Abdel-Khalek (2016) developed “the Arabic Scale of Religiosity,” which significantly correlated with PP variables among students in Algeria, Kuwait, and Egypt. Recently, empirical studies on PPIs have arisen in Arab-Islamic countries. More attention has been focused on promoting well-being and alleviating the high burden of mental health problems in the region (GBD 2015 Eastern Mediterranean Region Mental Health Collaborators, 2018). For instance, several studies examined the effectiveness of mindfulness among university students (e.g., Al-Ghalib & Slim, 2018; Awad, 2019; Thomas et al., 2016), parents of children with autism (Rayan & Ahmed, 2016) and addicted adults (Al-Rashidi, 2018). Such an intervention has positive effects. Participants who practised mindfulness reported reduction in stress and depression as well as improvement in well-being and resilience. Moreover, the results of a recent pilot study found positive impacts on enhancing emotional regulations and reducing stress among Arab teachers (Berkovich-Ohana et al., 2020). Some studies have also begun to examine various interventions targeting character strengths (Basurrah et al., 2020; Chérif et al., 2020), self-compassion (Elaiwah, 2017), positive thinking (Mohammed et al., 2014; Hadad, 2014), and hope (Zaki, 2016). Interestingly, a new finding considering the fear of happiness among people from collective countries has been examined. Lambert et al. (2019) provided evidence that a 14-week PPIs programme has an impact on reducing the fear and fragility of happiness beliefs among university students in the United Arab Emirates.Since Arab countries place great emphasis on spirituality, several authors have considered the aspect of religion when implementing PPIs. For instance, an empirical study by Al-Seheel and Noor (2016) found that expressing gratitude towards God “Allah” increases the happiness of the Muslim more than the usual gratitude intervention. Additionally, Al-Ghalib and Salim (2018) examined a religiously sensitive mindfulness-training programme with university students and found a positive effect on life satisfaction and a slight reduction in stress, depression, and anxiety. Hence, the role of religion is vital to make the interventions more relevant to Arab culture where people can connect Islamic philosophy with PP theories and practices. These studies reviewed here provide further support for the need for culturally sensitive interventions among the Arab population. More recently, the first systematic review of PPIs in Arab countries was conducted by Basurrah et al. (2021; the protocol has been published in BMJ Open and the final manuscript has been submitted for publication). Reviewing a total of 39 studies, the most commonly studied interventions were mindfulness, positive thinking, and resilience. Only a handful of studies examined gratitude, character strengths, forgiveness, self-compassion, savouring, or finding flow. Further analysis revealed that most studies from Arab countries have several methodological limitations. This included a lack of protocol guidelines, few well-designed randomized controlled trials (RCTs), blinding issues, small sample sizes, lack of active control groups, and lack of research into certain populations (e.g., teachers, employees, and people in distress in refugee camps). Discussion PP was founded on an individualistic framework (Christopher & Hickinbottom, 2008). To ensure that PPIs are culturally meaningful, this paper includes some cultural elements of the Arab region that should be considered to serve the needs of the Arab population. In the Arab world, some people may believe that PP is solely about happiness and being positive. If so, it is important to educate the public about the findings of rigorous studies evaluating PPIs such as gratitude, hope or flow on health, well-being and performance. To explain the value and effectiveness of these evidence-based approaches, examples might include studies linking gratitude with benefits for people with heart disease (Cousin et al., 2021), or how PPIs can promote quality of life in cancer patients (Casellas-Grau et al., 2014). There is some evidence about PPIs being effective in improving well-being in the Arab region, but research in this region is still in its infancy and little information is available regarding PPIs and the experience of Arabs participating in such interventions. Hence, there is still much more to investigate in this regard. Future research should empirically examine the effectiveness of various unstudied interventions such as savouring, gratitude, self-compassion, character strengths or finding flow. A combination of quantitative and qualitative approaches is required to provide an in-depth understanding of Arabs’ experience and impressions of PPIs and how and why they work. This may provide useful information to inform the appropriate design of PPIs to suit Arab culture and needs. Furthermore, while some research on PPIs has been carried out in the region, most of these studies have been of poor quality that suffered from small sample sizes, confounding factors, and a high degree of bias. To overcome these issues, future research should improve research quality, including protocol guidelines and well-designed RCTs. In particular, research should include randomization, allocation, blinding, power analysis to determine adequate sample size, active control groups to reduce bias, and follow-up periods of at least 12 months.Among the most popular resources that future PP practitioners may refer to are the International Positive Psychology Association (IPPA) and the International Positive Education Network (IPEN). Also, we recommend the Middle East Journal of Positive Psychology and the first regional book (Lambert & Pasha-Zaidi, 2019). To develop and/or adapt a multi-component PPIs, we would recommend referring to Character Strengths (Peterson & Seligman, 2004), the theory of well-being (PERMA Model: Positive Emotion, Engagement, Relationships, Meaning, and Accomplishment; Seligman, 2011), and the Five Ways to Well-being: Connect, Be Active, Take Notice, Keep Learning, and Give (Aked et al., 2008). Finally, single-component PPIs are based on theories like Broaden-And-Build (Fredrickson, 2004), Hope (Snyder et al., 2002), and Self-Determination (Deci & Ryan, 2012) can be also considered. Two other concepts that would be usefully applied are ‘Savouring’ (Bryant & Veroff, 2007) and Phillip Zimbardo’s Time Perspective (Stolarski et al., 2015). For instance, savouring has a positive temporal orientation to reminiscing the good memories from the past, enjoying the hedonic present moments, and willing proactively to make a better future. Now, what is even maybe more interesting for Muslims is “Transcendent Future” where all intentions, words and actions are devoted to that life after death. In addition, there is a model already prepared for the clinical purpose called Positive Psychotherapy (PPT). Tayyab Rashid and Martin Seligman published a PPT manual for clinicians in 2018. And for cross-cultural applications, including Muslim Arab culture, Rashid and Al-Haj Baddar (2019) have written a paper presenting PPT and its efficacy. PPT overview in detail shows sessions, themes, skills, practice, and cultural considerations where a mixture of PPIs based on PERMA, Strengths, and other PP concepts can be found. Regarding PP measurements, it is highly recommended to generate indigenous tools based on cultural backgrounds reviewed here in the article. An example of this is a tool for measuring Muslim well-being by including domains beyond what is found in Western literature. So far, in the Arab region, several attempts have been made to adapt PP tools. For example, Marei Salama-Younes (2018) validated the Arabic versions of different measures of well-being (e.g., satisfaction with life scale, the subjective vitality scale). Other validated scales as well include the self-compassion scale (Alabdulaziz et al., 2020), and the passion scale (Salama-Younes & Hashim, 2018). Conclusion This paper has discussed the cultural aspects of Arab countries and the need of developing culturally sensitive PPIs. The past decade has seen an increase in mental health problems in the Arab region. Stigma and lack of awareness have been always there. Among the issues are also wars, conflicts, and displacement in many Arab countries such as Iraq, Lebanon, and Palestine (Hassan et al., 2016). These indicate an urgent need to prevent mental illness and promote well-being. Indeed, we highlighted the importance of integrating culture with PPIs, following the guidelines for the cultural adaptation of PPIs (Hendriks & Graafsma, 2019) and the ethical guidelines for PP practice (Jarden et al., 2020). Another significant contribution of this paper is to highlight the importance of improving the quality of research conducted in Arab countries. In brief, this paper has several practical implications. It is an open invitation for researchers, policymakers, and practitioners alike to be more exposed to PP; as well as to better conceptualising and adapting interventions and measurement tools to the local culture in different sectors to maximize their effectiveness. And as we consider it as an invitation for us too, here we are starting a PPIs practice guide in Arabic language and for Arab practitioners. The insights gained from this paper may be useful for placing well-being on top of priorities for achieving individual, organizational, and optimal national functioning in different sectors. There is also a need to change the stigma or negative beliefs about seeking health for psychological support, which is an issue for countries in the Middle East (Baess, 2018). (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Policy and the Political Life of Music Education ed. by Patrick Schmidt and Richard ColwellHung-Pai ChenPatrick Schmidt and Richard Colwell, eds., Policy and the Political Life of Music Education (Oxford: Oxford University Press, 2017)Policy and the Political Life of Music Education is a collection of discourses regarding music education policy and its practice across a wide range of perspectives and geographical background. The book, edited by Patrick Schmidt (...) and Richard Colwell, not only provides the general readership with a well-rounded basis for comprehending music education policy in various regions, but it also offers music education stakeholders’ perspectives regarding the meaning, value, and the importance of participating in policy development and its implementation.This book discusses various policy-related issues among music education systems in terms of education levels from kindergarten to higher education and institutional music education systems. It explores both general music learning and professional musician training. Further, the scope of its observations cover issues outside of the campus; for instance, the work of musicians/teachers at the community level (Chapter 11) and the hardships associated with performing organizations such as orchestras (Chapter 13). Besides, the editors survey policy implementation at national, state, local, and organizational levels in different countries and circumstances in the Anglo-American educational world as well [End Page 217] as other contexts including Brazil (Chapter 7), Taiwan (Chapter 8), and Norway (Chapter 12).The crucial issues raised in the book are also within the focus of global education; for example, multicultural education, assessment of policy/curriculum, social inclusion, and equality of access to music education. These all accord with the notion of current trends in education and provide directions for future development. Such comprehensive discussions indeed offer readers extensive information through the three sections of policy foundation, international perspectives on policy, and policy in context.The prerequisite of the overall practice of policy is to translate an education philosophy into comprehensive terms while convincing the public.1 However, many consider that policy development is the business of government, authorities, and politicians; some music educators even believe that the discourse of policy and political issues concerning music education is far beyond their control. My ongoing study also shows that a number of music educators, including school teachers, studio instructors, and student teachers, lack the understanding of and are ignorant in the interpretation of policy.2 Policy documents such as statutes, blueprints, and even curriculum guidelines/standards are often strictly followed as compelling legislation or mandates, despite the fact that public hearings, dialogues, and on-line forums are available for all stakeholders to contribute their thoughts and experiences in their on-going development and interpretation. In this book, the authors provide a clear range of views to explain the complexity of policy development and its future implementation, embracing factors such as social context, economic condition, political evolution, assessment, and research, as well as diverse populations including academics, principals, school teachers, parents, and students. Throughout the collection, cases are raised for stressing the significance of participating in policy development and implementation and, as such, nobody is a bystander.Further, this book advocates that the awareness and understanding of policy issues should be included in teacher preparation programs for better participation in and implementation of policy by teachers, while policy related masters and doctoral studies should be encouraged. This suggests that policy relevant courses in university curriculum, either at the undergraduate or post-graduate level, should be evaluated in view of cultivating students’ political literacy and, consequently, enabling them to participate more fully in their future career. This view links to Katherine Zeserson and Graham Welch’s argument (Chapter 14) that research, policy, and practice are the spinning triangle which could make music more inspiring for the next generation. Policy should not be alienated from music and its teaching; it has the ability to improve and change both. [End Page 218]David Elliott claims that all musicians, including students, are part of the artistic citizenship and therefore should develop a social-political identity and a commitment toward social change.3 Paul Woodford further expresses that children should be prepared to develop their voice for shaping the society.4 Margaret Barrett (Chapter 10... (shrink)

Social justice is consistently upheld as a central value within the nursing profession, yet there are persistent inconsistencies in how this construct is conceptualized, further compounded by a lack of empirical inquiry into how nurses enact social justice in everyday practice. In the current context in which structural inequities are perpetuated throughout the health care system, and the emergency department in particular, it is crucial to understand how nurses understand and enact social justice as a disciplinary commitment. (...) This research examines how nurses' talk and institutional texts discursively construct social justice within the institutional context of the emergency department, and how such discourses shape the enactment of social justice within nursing practice. Guided by Iris Marion Young's theorizing of distributive and systemic social justice paradigms, this Foucauldian discourse analysis draws on emergency department nurses' talk (N = 25 interviews) and institutional documents (N = 27) as key texts that visibilize dominant and excluded discourses of social justice within the institutional context of the emergency department, and implications for how social justice is enacted through nursing practices. This analysis identified one overarching discursive pattern, in which social justice was discursively constructed through a hegemonic distributive paradigm, yet also resisted through nurses' conceptualization and enactment of a systemic social justice paradigm that facilitated their recognition and remediation of inequities. This central discursive pattern is explored through three exemplars of nurses' enactment of social justice as resistance: triage, harm reduction, and care planning. Findings from this analysis demonstrate that while a hegemonic distributive paradigm has dominated conceptualizations of social justice within nursing, a re‐construction of social justice through a systemic paradigm may guide nurses in enacting practices that remediate inequities in health and health care. (shrink)

Table of contentsI1 Proceedings of the 4th World Conference on Research IntegrityConcurrent Sessions:1. Countries' systems and policies to foster research integrityCS01.1 Second time around: Implementing and embedding a review of responsible conduct of research policy and practice in an Australian research-intensive universitySusan Patricia O'BrienCS01.2 Measures to promote research integrity in a university: the case of an Asian universityDanny Chan, Frederick Leung2. Examples of research integrity education programmes in different countriesCS02.1 Development of a state-run “cyber (...) education program of research ethics” in KoreaEun Jung Ko, Jin Sun Kwak, TaeHwan Gwon, Ji Min Lee, Min-Ho LeeCS02.3 Responsible conduct of research teachers’ training courses in Germany: keeping on drilling through hard boards for more RCR teachersHelga Nolte, Michael Gommel, Gerlinde Sponholz3. The research environment and policies to encourage research integrityCS03.1 Challenges and best practices in research integrity: bridging the gap between policy and practiceYordanka Krastev, Yamini Sandiran, Julia Connell, Nicky SolomonCS03.2 The Slovenian initiative for better research: from national activities to global reflectionsUrsa Opara Krasovec, Renata SribarCS03.3 Organizational climate assessments to support research integrity: background of the Survey of Organizational Research Climate and the experience with its use at Michigan State UniversityBrian C. Martinson, Carol R. Thrush, C.K. Gunsalus4. Expressions of concern and retractionsCS04.1 Proposed guidelines for retraction notices and their disseminationIvan Oransky, Adam MarcusCS04.2 Watching retractions: analysis of process and practice, with data from the Wiley retraction archivesChris Graf, Verity Warne, Edward Wates, Sue JoshuaCS04.3 An exploratory content analysis of Expressions of ConcernMiguel RoigCS04.4 An ethics researcher in the retraction processMichael Mumford5. Funders' role in fostering research integrityCS05.1 The Fonds de Recherche du Québec’s institutional rules on the responsible conduct of research: introspection in the funding agency activitiesMylène Deschênes, Catherine Olivier, Raphaëlle Dupras-LeducCS05.2 U.S. Public Health Service funds in an international setting: research integrity and complianceZoë Hammatt, Raju Tamot, Robin Parker, Cynthia Ricard, Loc Nguyen-Khoa, Sandra TitusCS05.3 Analyzing decision making of funders of public research as a case of information asymmetryKarsten Klint JensenCS05.4 Research integrity management: Empirical investigation of academia versus industrySimon Godecharle, Ben Nemery, Kris Dierickx5A: Education: For whom, how, and what?CS05A.1 Research integrity or responsible conduct of research? What do we aim for?Mickey Gjerris, Maud Marion Laird Eriksen, Jeppe Berggren HoejCS05A.2 Teaching and learning about RCR at the same time: a report on Epigeum’s RCR poll questions and other assessment activitiesNicholas H. SteneckCS05A.4 Minding the gap in research ethics education: strategies to assess and improve research competencies in community health workers/promoteresCamille Nebeker, Michael Kalichman, Elizabeth Mejia Booen, Blanca Azucena Pacheco, Rebeca Espinosa Giacinto, Sheila Castaneda6. Country examples of research reward systems and integrityCS06.1 Improving systems to promote responsible research in the Chinese Academy of SciencesDing Li, Qiong Chen, Guoli Zhu, Zhonghe SunCS06.4 Exploring the perception of research integrity amongst public health researchers in IndiaParthasarathi Ganguly, Barna Ganguly7. Education and guidance on research integrity: country differencesCS07.1 From integrity to unity: how research integrity guidance differs across universities in Europe.Noémie Aubert Bonn, Kris Dierickx, Simon GodecharleCS07.2 Can education and training develop research integrity? The spirit of the UNESCO 1974 recommendation and its updatingDaniele Bourcier, Jacques Bordé, Michèle LeducCS07.3 The education and implementation mechanisms of research ethics in Taiwan's higher education: an experience in Chinese web-based curriculum development for responsible conduct of researchChien Chou, Sophia Jui-An PanCS07.4 Educating principal investigators in Swiss research institutions: present and future perspectivesLouis Xaver Tiefenauer8. Measuring and rewarding research productivityCS08.1 Altimpact: how research integrity underpins research impactDaniel Barr, Paul TaylorCS08.2 Publication incentives: just reward or misdirection of funds?Lyn Margaret HornCS08.3 Why Socrates never charged a fee: factors contributing to challenges for research integrity and publication ethicsDeborah Poff9. Plagiarism and falsification: Behaviour and detectionCS09.1 Personality traits predict attitude towards plagiarism of self and others in biomedicine: plagiarism, yes we can?Martina Mavrinac, Gordana Brumini, Mladen PetrovečkiCS09.2 Investigating the concept of and attitudes toward plagiarism for science teachers in Brazil: any challenges for research integrity and policy?Christiane Coelho Santos, Sonia VasconcelosCS09.3 What have we learnt?: The CrossCheck Service from CrossRefRachael LammeyCS09.4 High p-values as a sign of data fabrication/falsificationChris Hartgerink, Marcel van Assen, Jelte Wicherts10. Codes for research integrity and collaborationsCS10.1 Research integrity in cross-border cooperation: a Nordic exampleHanne Silje HaugeCS10.3 Research integrity, research misconduct, and the National Science Foundation's requirement for the responsible conduct of researchAaron MankaCS10.4 A code of conduct for international scientific cooperation: human rights and research integrity in scientific collaborations with international academic and industry partnersRaffael Iturrizaga11. Countries' efforts to establish mentoring and networksCS11.1 ENRIO : a network facilitating common approaches on research integrity in EuropeNicole FoegerCS11.2 Helping junior investigators develop in a resource-limited country: a mentoring program in PeruA. Roxana Lescano, Claudio Lanata, Gissella Vasquez, Leguia Mariana, Marita Silva, Mathew Kasper, Claudia Montero, Daniel Bausch, Andres G LescanoCS11.3 Netherlands Research Integrity Network: the first six monthsFenneke Blom, Lex BouterCS11.4 A South African framework for research ethics and integrity for researchers, postgraduate students, research managers and administratorsLaetus OK Lategan12. Training and education in research integrity at an early career stageCS12.1 Research integrity in curricula for medical studentsGustavo Fitas ManaiaCS12.2 Team-based learning for training in the responsible conduct of research supports ethical decision-makingWayne T. McCormack, William L. Allen, Shane Connelly, Joshua Crites, Jeffrey Engler, Victoria Freedman, Cynthia W. Garvan, Paul Haidet, Joel Hockensmith, William McElroy, Erik Sander, Rebecca Volpe, Michael F. VerderameCS12.4 Research integrity and career prospects of junior researchersSnezana Krstic13. Systems and research environments in institutionsCS13.1 Implementing systems in research institutions to improve quality and reduce riskLouise HandyCS13.2 Creating an institutional environment that supports research integrityDebra Schaller-DemersCS13.3 Ethics and Integrity Development Grants: a mechanism to foster cultures of ethics and integrityPaul Taylor, Daniel BarrCS13.4 A culture of integrity at KU LeuvenInge Lerouge, Gerard Cielen, Liliane Schoofs14. Peer review and its role in research integrityCS14.1 Peer review research across disciplines: transdomain action in the European Cooperation in Science and Technology “New Frontiers of Peer Review ”Ana Marusic, Flaminio SquazzoniCS14.2 Using blinding to reduce bias in peer reviewDavid VauxCS14.3 How to intensify the role of reviewers to promote research integrityKhalid Al-Wazzan, Ibrahim AlorainyCS14.4 Credit where credit’s due: professionalizing and rewarding the role of peer reviewerChris Graf, Verity Warne15. Research ethics and oversight for research integrity: Does it work?CS15.1 The psychology of decision-making in research ethics governance structures: a theory of bounded rationalityNolan O'Brien, Suzanne Guerin, Philip DoddCS15.2 Investigator irregularities: iniquity, ignorance or incompetence?Frank Wells, Catherine BlewettCS15.3 Academic plagiarismFredric M. Litto16. Research integrity in EuropeCS16.1 Whose responsibility is it anyway?: A comparative analysis of core concepts and practice at European research-intensive universities to identify and develop good practices in research integrityItziar De Lecuona, Erika Löfstrom, Katrien MaesCS16.2 Research integrity guidance in European research universitiesKris Dierickx, Noémie Bonn, Simon GodecharleCS16.3 Research Integrity: processes and initiatives in Science Europe member organisationsTony Peatfield, Olivier Boehme, Science Europe Working Group on Research IntegrityCS16.4 Promoting research integrity in Italy: the experience of the Research Ethics and Bioethics Advisory Committee of the Consiglio Nazionale delle Ricerche Cinzia Caporale, Daniele Fanelli17. Training programs for research integrity at different levels of experience and seniorityCS17.1 Meaningful ways to incorporate research integrity and the responsible conduct of research into undergraduate, graduate, postdoctoral and faculty training programsJohn Carfora, Eric Strauss, William LynnCS17.2 "Recognize, respond, champion": Developing a one-day interactive workshop to increase confidence in research integrity issuesDieter De Bruyn, Bracke Nele, Katrien De Gelder, Stefanie Van der BurghtCS17.4 “Train the trainer” on cultural challenges imposed by international research integrity conversations: lessons from a projectJosé Roberto Lapa e Silva, Sonia M. R. Vasconcelos18. Research and societal responsibilityCS18.1 Promoting the societal responsibility of research as an integral part of research integrityHelene IngierdCS18.2 Social responsibility as an ethical imperative for scientists: research, education and service to societyMark FrankelCS18.3 The intertwined nature of social responsibility and hope in scienceDaniel Vasgird, Stephanie BirdCS18.4 Common barriers that impede our ability to create a culture of trustworthiness in the research communityMark Yarborough19. Publication ethicsCS19.1 The authors' forum: A proposed tool to improve practices of journal editors and promote a responsible research environmentIbrahim Alorainy, Khalid Al-WazzanCS19.2 Quantifying research integrity and its impact with text analyticsHarold GarnerCS19.3 A closer look at authorship and publication ethics of multi- and interdisciplinary teamsLisa Campo-Engelstein, Zubin Master, Elise Smith, David Resnik, Bryn Williams-JonesCS19.4 Invisibility of duplicate publications in biomedicineMario Malicki, Ana Utrobicic, Ana Marusic20. The causes of bad and wasteful research: What can we do?CS20.1 From countries to individuals: unravelling the causes of bias and misconduct with multilevel meta-meta-analysisDaniele Fanelli, John PA IoannidisCS20.2 Reducing research waste by integrating systems of oversight and regulationGerben ter Riet, Tom Walley, Lex Marius BouterCS20.3 What are the determinants of selective reporting?: The example of palliative care for non-cancer conditionsJenny van der Steen, Lex BouterCS20.4 Perceptions of plagiarism, self-plagiarism and redundancy in research: preliminary results from a national survey of Brazilian PhDsSonia Vasconcelos, Martha Sorenson, Francisco Prosdocimi, Hatisaburo Masuda, Edson Watanabe, José Carlos Pinto, Marisa Palácios, José Lapa e Silva, Jacqueline Leta, Adalberto Vieyra, André Pinto, Mauricio Sant’Ana, Rosemary Shinkai21. Are there country-specific elements of misconduct?CS21.1 The battle with plagiarism in Russian science: latest developmentsBoris YudinCS21.2 Researchers between ethics and misconduct: A French survey on social representations of misconduct and ethical standards within the scientific communityEtienne Vergès, Anne-Sophie Brun-Wauthier, Géraldine VialCS21.3 Experience from different ways of dealing with research misconduct and promoting research integrity in some Nordic countriesTorkild VintherCS21.4 Are there specifics in German research misconduct and the ways to cope with it?Volker Bähr, Charité22. Research integrity teaching programmes and their challengesCS22.1 Faculty mentors and research integrityMichael Kalichman, Dena PlemmonsCS22.2 Training the next generation of scientists to use principles of research quality assurance to improve data integrity and reliabilityRebecca Lynn Davies, Katrina LaubeCS22.3 Fostering research integrity in a culturally-diverse environmentCynthia Scheopner, John GallandCS22.4 Towards a standard retraction formHervé Maisonneuve, Evelyne Decullier23. Commercial research and integrityCS23.1 The will to commercialize: matters of concern in the cultural economy of return-on-investment researchBrian NobleCS23.2 Quality in drug discovery data reporting: a mission impossible?Anja Gilis, David J. Gallacher, Tom Lavrijssen, Malwitz David, Malini Dasgupta, Hans MolsCS23.3 Instituting a research integrity policy in the context of semi-private-sector funding: an example in the field of occupational health and safetyPaul-Emile Boileau24. The interface of publication ethics and institutional policiesCS24.1 The open access ethical paradox in an open government effortTony SavardCS24.2 How journals and institutions can work together to promote responsible conductEric MahCS24.3 Improving cooperation between journals and research institutions in research integrity casesElizabeth Wager, Sabine Kleinert25. Reproducibility of research and retractionsCS25.1 Promoting transparency in publications to reduce irreproducibilityVeronique Kiermer, Andrew Hufton, Melanie ClyneCS25.2 Retraction notices issued for publications by Latin American authors: what lessons can we learn?Sonia Vasconcelos, Renan Moritz Almeida, Aldo Fontes-Pereira, Fernanda Catelani, Karina RochaCS25.3 A preliminary report of the findings from the Reproducibility Project: Cancer biologyElizabeth Iorns, William Gunn26. Research integrity and specific country initiativesCS26.1 Promoting research integrity at CNRS, FranceMichèle Leduc, Lucienne LetellierCS26.2 In pursuit of compliance: is the tail wagging the dog?Cornelia MalherbeCS26.3 Newly established research integrity policies and practices: oversight systems of Japanese research universitiesTakehito Kamata27. Responsible conduct of research and country guidelinesCS27.1 Incentives or guidelines? Promoting responsible research communication through economic incentives or ethical guidelines?Vidar EnebakkCS27.3 Responsible conduct of research: a view from CanadaLynn PenrodCS27.4 The Danish Code of Conduct for Research Integrity: a national initiative to promote research integrity in DenmarkThomas Nørgaard, Charlotte Elverdam28. Behaviour, trust and honestyCS28.1 The reasons behind non-ethical behaviour in academiaYves FassinCS28.2 The psychological profile of the dishonest scholarCynthia FekkenCS28.3 Considering the implications of Dan Ariely’s keynote speech at the 3rd World Conference on Research Integrity in MontréalJamal Adam, Melissa S. AndersonCS28.4 Two large surveys on psychologists’ views on peer review and replicationJelte WichertsBrett Buttliere29. Reporting and publication bias and how to overcome itCS29.1 Data sharing: Experience at two open-access general medical journalsTrish GrovesCS29.2 Overcoming publication bias and selective reporting: completing the published recordDaniel ShanahanCS29.3 The EQUATOR Network: promoting responsible reporting of health research studiesIveta Simera, Shona Kirtley, Eleana Villanueva, Caroline Struthers, Angela MacCarthy, Douglas Altman30. The research environment and its implications for integrityCS30.1 Ranking of scientists: the Russian experienceElena GrebenshchikovaCS30.4 From cradle to grave: research integrity, research misconduct and cultural shiftsBronwyn Greene, Ted RohrPARTNER SYMPOSIAPartner Symposium AOrganized by EQUATOR Network, Enhancing the Quality and Transparency of Health ResearchP1 Can we trust the medical research literature?: Poor reporting and its consequencesIveta SimeraP2 What can BioMed Central do to improve published research?Daniel Shanahan, Stephanie HarrimanP3 What can a "traditional" journal do to improve published research?Trish GrovesP4 Promoting good reporting practice for reliable and usable research papers: EQUATOR Network, reporting guidelines and other initiativesCaroline StruthersPartner Symposium COrganized by ENRIO, the European Network of Research Integrity OfficersP5 Transparency and independence in research integrity investigations in EuropeKrista Varantola, Helga Nolte, Ursa Opara, Torkild Vinther, Elizabeth Wager, Thomas NørgaardPartner Symposium DOrganized by IEEE, the Institute of Electrical and Electronics EngineersRe-educating our author community: IEEE's approach to bibliometric manipulation, plagiarism, and other inappropriate practicesP6 Dealing with plagiarism in the connected world: An Institute of Electrical and Electronics Engineers perspectiveJon RokneP7 Should evaluation of raises, promotion, and research proposals be tied to bibliometric indictors? What the Institute of Electrical and Electronics Engineers is doing to answer this questionGianluca SettiP8 Recommended practices to ensure conference content qualityGordon MacPhersonPartner Symposium EOrganized by the Committee on Freedom and Responsibility in the Conduct of Science of ICSU, the International Council for ScienceResearch assessment and quality in science: perspectives from international science and policy organisationsP9 Challenges for science and the problems of assessing researchEllen HazelkornP10 Research assessment and science policy developmentCarthage SmithP11 Research integrity in South Africa: the value of procedures and processes to global positioningRobert H. McLaughlinP12 Rewards, careers and integrity: perspectives of young scientists from around the worldTatiana Duque MartinsPartner Symposium FOrganized by the Online Resource Center for Ethics Education in Engineering and Science / Center for Engineering, Ethics, and Society of the National Academy of EngineeringP13 Research misconduct: conceptions and policy solutionsTetsuya Tanimoto, Nicholas Steneck, Daniele Fanelli, Ragnvald Kalleberg, Tajammul HusseinPartner Symposium HOrganized by ORI, the Office of Research Integrity; Universitas 21; and the Asia Pacific Research Integrity NetworkP14 International integrity networks: working together to ensure research integrityPing Sun, Ovid Tzeng, Krista Varantola, Susan ZimmermanPartner Symposium IOrganized by COPE, the Committee on Publication EthicsPublication without borders: Ethical challenges in a globalized worldP15 Authorship: credit and responsibility, including issues in large and interdisciplinary studiesRosemary ShinkaiPartner Symposium JOrganized by CITI, the Cooperative Institutional Training InitiativeExperiences on research integrity educational programs in Colombia, Costa Rica and PeruP16 Experiences in PeruRoxana LescanoP17 Experiences in Costa RicaElizabeth HeitmanP18 Experiences in ColumbiaMaria Andrea Rocio del Pilar Contreras NietoPoster Session B: Education, training, promotion and policyPT.01 The missing role of journal editors in promoting responsible researchIbrahim Alorainy, Khalid Al-WazzanPT.02 Honorary authorship in Taiwan: why and who should be in charge?Chien Chou, Sophia Jui-An PanPT.03 Authorship and citation manipulation in academic researchEric Fong, Al WilhitePT.04 Open peer review of research submission at medical journals: experience at BMJ Open and The BMJTrish GrovesPT.05 Exercising authorship: claiming rewards, practicing integrityDésirée Motta-RothPT.07 Medical scientists' views on publication culture: a focus group studyJoeri Tijdink, Yvo SmuldersPoster Session B: Education, training, promotion and policyPT.09 Ethical challenges in post-graduate supervisionLaetus OK LateganPT.10 The effects of viable ethics instruction on international studentsMichael Mumford, Logan Steele, Logan Watts, James Johnson, Shane Connelly, Lee WilliamsPT.11 Does language reflect the quality of research?Gerben ter Riet, Sufia Amini, Lotty Hooft, Halil KilicogluPT.12 Integrity complaints as a strategic tool in policy decision conflictsJanneke van Seters, Herman Eijsackers, Fons Voragen, Akke van der Zijpp and Frans BromPoster Session C: Ethics and integrity intersectionsPT.14 Regulations of informed consent: university-supported research processes and pitfalls in implementationBadaruddin Abbasi, Naif Nasser AlmasoudPT.15 A review of equipoise as a requirement in clinical trialsAdri LabuschagnePT.16 The Research Ethics Library: online resource for research ethics educationJohanne Severinsen, Espen EnghPT.17 Research integrity: the view from King Abdulaziz City for Science and TechnologyDaham Ismail AlaniPT. 18 Meeting global challenges in high-impact publications and research integrity: the case of the Malaysian Palm Oil BoardHJ. Kamaruzaman JusoffPT.19 University faculty perceptions of research practices and misconductAnita Gordon, Helen C. HartonPoster Session D: International perspectivesPT.21 The Commission for Scientific Integrity as a response to research fraudDieter De Bruyn, Stefanie Van der BurghtPT. 22 Are notions of the responsible conduct of research associated with compliance with requirements for research on humans in different disciplinary traditions in Brazil?Karina de Albuquerque Rocha, Sonia Maria Ramos de VasconcelosPT.23 Creating an environment that promotes research integrity: an institutional model of Malawi Liverpool Welcome TrustLimbanazo MatandikaPT.24 How do science policies in Brazil influence user-engaged ecological research?Aline Carolina de Oliveira Machado Prata, Mark William NeffPoster Session E: Perspectives on misconductPT.26 What “causes” scientific misconduct?: Testing major hypotheses by comparing corrected and retracted papersDaniele Fanelli, Rodrigo Costas, Vincent LarivièrePT.27 Perception of academic plagiarism among dentistry studentsDouglas Leonardo Gomes Filho, Diego Oliveira GuedesPT. 28 a few bad apples?: Prevalence, patterns and attitudes towards scientific misconduct among doctoral students at a German university hospitalVolker Bähr, Niklas Keller, Markus Feufel, Nikolas OffenhauserPT. 29 Analysis of retraction notices published by BioMed CentralMaria K. Kowalczuk, Elizabeth C. MoylanPT.31 "He did it" doesn't work: data security, incidents and partnersKatie SpeanburgPoster Session F: Views from the disciplinesPT.32 Robust procedures: a key to generating quality results in drug discoveryMalini Dasgupta, Mariusz Lubomirski, Tom Lavrijssen, David Malwitz, David Gallacher, Anja GillisPT.33 Health promotion: criteria for the design and the integrity of a research projectMaria Betânia de Freitas Marques, Laressa Lima Amâncio, Raphaela Dias Fernandes, Oliveira Patrocínio, and Cláudia Maria Correia Borges RechPT.34 Integrity of academic work from the perspective of students graduating in pharmacy: a brief research studyMaria Betânia de Freitas Marques, Cláudia Maria Correia Borges Rech, Adriana Nascimento SousaPT.35 Research integrity promotion in the Epidemiology and Health Services, the journal of the Brazilian Unified Health SystemLeila Posenato GarciaPT.36 When are clinical trials registered? An analysis of prospective versus retrospective registration of clinical trials published in the BioMed Central series, UKStephanie Harriman, Jigisha PatelPT.37 Maximizing welfare while promoting innovation in drug developmentFarida LadaOther posters that will be displayed but not presented orally:PT.38 Geoethics and the debate on research integrity in geosciencesGiuseppe Di Capua, Silvia PeppoloniPT.39 Introducing the Professionalism and Integrity in Research Program James M. DuBois, John Chibnall, Jillon Van der WallPT.40 Validation of the professional decision-making in research measureJames M. DuBois, John Chibnall, Jillon Van der Wall, Raymond TaitPT.41 General guidelines for research ethicsJacob HolenPT. 42 A national forum for research ethicsAdele Flakke Johannessen, Torunn EllefsenPT.43 Evaluation of integrity in coursework: an approach from the perspective of the higher education professorClaudia Rech, Adriana Sousa, Maria Betânia de Freitas MarquesPT.44 Principles of geoethics and research integrity applied to the European Multidisciplinary Seafloor and Water Column Observatory, a large-scale European environmental research infrastructureSilvia Peppoloni, Giuseppe Di Capua, Laura BeranzoliF1 Focus track on improving research systems: the role of fundersPaulo S.L. Beirão, Susan ZimmermanF2 Focus track on improving research systems: the role of countriesSabine Kleinert, Ana MarusicF3 Focus track on improving research systems: the role of institutionsMelissa S. Anderson, Lex Bouter. (shrink)

Gender mainstreaming has been prioritised within the national agricultural policies of many countries, including Nepal. Yet gender mainstreaming at the national policy level does not always work to effect change when policies are implemented at the local scale. In less-developed nations such as Nepal, it is rare to find a critical analysis of the mainstreaming process and its successes or failures. This paper employs a critical gender analysis approach to examine the gender mainstreaming efforts in Nepal as they move (...) from agricultural policies to practices. The research involved a structured review of 10 key national agricultural policy documents, 14 key informant interviews, and two focus group discussions with female and male smallholder farmers. Results suggest that gender mainstreaming in national agricultural policy and practice has largely failed. The creation of the Gender Equity and Social Inclusion (GESI) section within the Ministry of Agriculture and Livestock Development is paradoxical to gender-responsive agricultural innovation because it has received limited human and financial resources with an expectation for women to manage this policy development in informal and largely unrecognized ways. At the regional and local levels, implementation of fundamental gender equity and social inclusion procedures—such as gender-responsive planning and budgeting—has become staff responsibility without requisite formal training, gender sensitization, and follow-up. In Nepal, women as smallholder farmers or agricultural labourers are recognized as a vulnerable group in need of social protection, but the welfare approach to gender mainstreaming has achieved little in terms of gender equity, social inclusion, and agricultural sustainability. This paper concludes that what is generally missing is a systemic transformation of gender roles and relations in agriculture, with policies that would support rural women's empowerment through the provision of economic and political rights and entitlement to productive resources. (shrink)

The purpose is to identify common and distinctive features of concepts and methodology of the problem of subject within different discourses, implicitly or explicitly relevant to the definition of "clinical" mode of human existence. The research methodology combines techniques of discourse analysis and basic principles of historical and philosophical studies. Originality of the research lies in definition of the clinical philosophical discourse as a special communicative process, where utterances not only focus on disease syndromes, (...) and reveal phenomenology of inner experience of a pathological self, but also structure a certain type of sociality. Clinical discourse represents the space where the patient is treated not as a subject but as an object of disease. Ontology of clinical discourse prevails over ontology of disease, since its structures determine the notion of disease as such. Categorization of the disease, the idea of disease as a phenomenon subdued to professional authority leads to the idea of the need for patient’s isolation from the natural environment and removing him to special social institutions. The clinicist doctrines share the intention to reduce the patient’s self to its bodily dimension, while ignoring social determinants of psychological deviations. Conclusions of the study are summarized in the following positions: the current clinical discourse is based on the positivist-biological trend in humanitarian knowledge and it is the basis for the production and reproduction of medical and pharmaceutical repressive ideology; criticism of philosophical clinical discourse opens the possibility of overcoming the dominance of purely clinicist discourse; such a transformation is possible only after a paradigm shift in understanding the category of subject. (shrink)

Background Researchers are required to determine whether a person has capacity to consent to a research study before they are able to participate. The Mental Capacity Act and accompanying Code of Practice for England and Wales provide some guidance on this process, but researchers have identified that it can be difficult to determine capacity to consent when a person has complex cognitive or communication needs. This study aimed to understand the experiences and opinions of researchers who recruit people with (...) dementia to research projects, to inform the future development of training resources. Methods A mixed method, cross-sectional, electronic survey was circulated via social media and research networks in England and Wales. The survey remained open for ten weeks and included open and closed questions exploring respondents’ confidence in determining capacity in the context of recruiting people with dementia to consent, their views on training and support they have experienced and their suggestions for future training and support needs. Results 60 respondents completed the survey from across England and Wales. Although 75% of respondents had experience of determining capacity to consent with people with dementia to research, only 13% rated themselves as feeling ‘very confident’ in this. Qualitative content analysis of open responses led to the generation of six themes, explaining researchers’ confidence, competence and future training needs in this area: (1) Researcher uncertainties, (2) Lack of time, (3) Balancing information complexity with accessibility, (4) Gatekeepers, (5) Existing enablers and (6) Envisioning future training. Conclusions Researchers would benefit from specific training in undertaking conversations around consent with people with dementia. People with dementia may have fluctuating capacity, and despite support from caregivers, researchers have little practical guidance on methods of determining a person’s ability to understand or appreciate the information they have provided during the consent process. Given the development of large complex trials within dementia research, there is an urgency to develop specific and practical guidance and training for researchers working with people with dementia and their families. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Pragmatism's Evolution: Organism and Environment in American Philosophy by Trevor PearceAlexander KleinTrevor Pearce. Pragmatism's Evolution: Organism and Environment in American Philosophy. Chicago: The University of Chicago Press, 2020. Pp. 384. Paperback, $35.00.Pragmatist pioneers were young lions in the days of Darwin. Evolutionary-biological thinking infused this philosophical movement from the start. And yet the last time a major monograph appeared on classic pragmatism and evolutionary biology—Philip Wiener's Evolution and (...) the Founders of Pragmatism (New York: Harper Torchbooks, 1949)—the author could personally thank Ralph Barton Perry, William James's junior colleague and eventual biographer. John Dewey himself wrote the foreword.Almost seventy-five years later, we have Trevor Pearce's painstakingly researched Pragmatism's Evolution. The author has graduate training in both biology and philosophy and is a former student of William Wimsatt and Robert Richards's (343). The book offers an intricate portrait of how debates about evolutionary biology informed the thinking of a loose-knit group of pragmatists between the years 1860 and 1910. While a remarkable variety of figures are discussed, ten pragmatists command the most attention: Chauncey Wright, C. S. Peirce, Francis Ellingwood Abbot, John Fiske, William James, Josiah Royce, John Dewey, Jane Addams, G. H. Mead, and W. E. B. Du Bois (18). Call them "the American Ten."Without downplaying Darwin, an overarching theme is the special significance of Herbert Spencer. Despite many specific disagreements with him (see e.g. 74, 207–8, 253–54, 281), the American Ten all accepted something more fundamental from Spencer: an intellectual framework that explains mind and morality in terms of functional relationships between organism and environment.After an introduction outlining what Pearce identifies as four chronological "cohorts" of pragmatists (more on this concept below), he examines the 1860s and 1870s reception of Darwin (chapter 1) and Spencer (chapter 2), showing how senior pragmatists like Wright, Peirce, and James defended evolution during this period. In chapter 2, we meet the Metaphysical Club's arch Spencerian, John Fiske, and we get a reading of James's critique of Spencer's psychology and sociology. Chapter 3 gives a highly detailed, reference-work-like portrait of the second cohort's training in evolutionary biology during the 1880s—chiefly Royce, Dewey, Addams, Mead, and Du Bois. In chapter 4, we learn that in the 1880s and 1890s, idealists like Edward Caird, Samuel Alexander, David George Ritchie, and Josiah Royce all co-opted ideas from evolutionary biology, which they apparently thought compatible with Hegelian dialectics. Chapter 5 shows that central planks of Peirce's metaphysics and Dewey's ethics are responsive to an 1890s dispute over the causes of the biological variation upon which selection acts (the so-called "factors" debate). The final two chapters show how pragmatist ethics (chapter 6) and epistemology (chapter 7) were infused with substantive ideas about evolution and about scientific experiment more generally.The depth and use of historical scholarship on offer here are both remarkable. On depth, Pearce draws from nineteen special collections and archives housed at institutions from California to Manchester, UK. The reference list (published on Pearce's website) runs [End Page 160] to 118 pages and was apparently too long for inclusion in the book. Archival research and lengthy bibliographies are to be expected in today's history of philosophy. But the sheer range of sources Pearce draws from is, by any measure, impressive.The use to which he puts those sources is provocative. Close reading, and in particular argument reconstruction, is usually the stock in trade for historians of philosophy. Pearce takes a different approach (7), seeking interpretive insight through a kind of philosophical network analysis. The nodes are mainly philosophers, scientists, and social critics. Unlike digital network analyses, Pearce connects his nodes by hand, via a great multiplicity of social, educational, and intellectual relations. We learn who studied evolution where, with whom, and when; what specific texts were assigned in classes taken, in classes taught; who attacked whom, who sided with whom; and so on.The resulting networks are rich, though they can be difficult to track due to their complexity. At its best, the book uses networks to produce genuine insights that... (shrink)

The Palgrave Handbook of Practical Animal Ethics is a recent addition to anthologies in the field, joining The Oxford Handbook of Animal Ethics, and The Routledge Handbook of Animal Ethics. Edited by Andrew Linzey and Clair Linzey of the Oxford Centre for Animal Ethics, the book boasts more than 30 contributors, many of them philosophers, but also including sociologists, scientists, theologians, lawyers, psychologists, and animal advocates. The editors were intentionally multidisciplinary in their approach, noting that “there is currently no book (...) series that is a focus for multidisciplinary research in the field,” and calling attention to the need not only for philosophical inquiry into what we owe animals, but also into the “social, legal, cultural, religious and political” influences that “legitimate animal abuse” (p. viii).The book is divided up into four sections: “The Ethics of Control,” “The Ethics of Captivity,” “The Ethics of Killing,” and “The Ethics of Causing Suffering.” Each of these sections includes an editorial introduction and multiple entries spanning diverse issues, including animal research, animal agriculture, hunting, fishing, zoos, the role of animals in religion, the role of language in structuring thought about nonhuman animals, and others. Similarly, the chapters span issues affecting many species, including farmed animals, fish, deer, elephants, whales and dolphins, rodents, companion animals (e.g., dogs and cats), and others.While the book is billed as a “practical” handbook of animal ethics, it does wade into some conceptual territory, tackling such issues as the ethical permissibility of confining and controlling animals, the question of whether (painless) death harms nonhuman animals, and the comparative wrongness of killing humans and nonhuman animals. This said, it largely stays away from more detailed discussion of normative ethical theory and the moral standing of nonhuman animals, focusing instead on the specific ways that humans treat nonhuman animals. In focusing more on practical than theoretical ethics, the Palgrave Handbook of Practical Animal Ethics both complements and differentiates itself from some other anthologies in the field.The book has several strengths to recommend it, the first being the logic of its organization. The ethically problematic aspects of humans’ treatment of nonhuman animals frequently map onto one or more of the categories of causing suffering, killing, and confining. The organization of chapters under these section headings helps to provide a rational structure to the text, as well as an easy way for the reader to navigate which sections they would like to tackle first (although there is some overlap between sections). With this, the explicit and sustained focus on the ethics of control (section 1) is a welcome and differentiating feature of the text. Much prior work in animal ethics has addressed questions of harming and killing animals, but the ethical permissibility of control per se has received comparatively lesser attention.The multidisciplinary nature of the book is also a selling point. In any anthology on animal ethics, the reader can expect entries from academic philosophers, but the book's inclusion of empirical scientific reviews, sociological and legal analyses, and work in discourse analysis are strengths. One danger in focusing exclusively on what we ought to think and do is that it ignores the influences on how we actually think and act. Many of the book's entries address these influences and thus round out the normative analysis.The middle two sections of the book seem most successful to this reviewer. The section on the ethics of killing contains two well-argued conceptual chapters, coupled with practical analyses of fishing, deer hunting, and religious perspectives on killing nonhuman animals. While animal research and animal agriculture are not directly addressed in this section, the conceptual arguments can be applied to the killing of nonhuman animals in these contexts. The section on the ethics of captivity is not as conceptually strong but contains excellent empirical chapters on the welfare of elephants, whales, and dolphins in captivity. Prior work in normative ethics has established how confinement can be harmful to nonhuman animals by directly causing suffering or depriving them of opportunities for satisfaction (see, e.g., DeGrazia, 2002). However, it is important to complement such theoretical frameworks with substantiation of how captivity actually is harmful to nonhuman animals in virtue of the interests they have and how captivity infringes upon such interests. These chapters argue that captivity is fundamentally (and not conditionally) incompatible with the welfare of elephants, whales, and dolphins.If I have one criticism of the book, it is that it could be stronger on certain conceptual issues. Acknowledging its practical and not theoretical focus, it is nonetheless true that if controlling, confining, killing, and causing suffering to nonhuman animals is wrong, then it is important to say something about why it is wrong—even if that explanation amounts to a short synopsis of more theoretical work done elsewhere. While the question of killing is addressed well, the section on the ethics of causing suffering does not address directly why (or under what conditions) causing suffering is wrong. The chapters in this section are worthwhile reading and review practices causing animal suffering in a variety of contexts. Nonetheless, some additional conceptual front matter would have strengthened the section overall.From a conceptual standpoint, the sections on the ethics of control and captivity seem to hang together. Confinement is a form of control and might be argued against on the grounds that it deprives nonhuman animals of opportunities for satisfaction, directly causes physical injury, or causes psychological distress, anxiety, or boredom. These kinds of arguments fit into interest-based accounts of animal welfare, which in turn can be subsumed under a principle of nonmaleficence: We should not cause harm to animals under some specified set of conditions; confinement harms animals in ways x, y, or z; therefore, we should not confine animals in this way.While such interest-based arguments do make an appearance in the text, several of the book's authors also elaborate an autonomy-based argument against control and confinement: Nonhuman animals have their own kind of autonomy, and just as infringing upon the autonomy of paradigmatic persons is wrong, infringing upon nonhuman animals’ autonomy is also wrong. The problem with this argument is that different kinds of autonomy are likely to be at stake. The wrongness of infringing upon paradigmatic persons’ autonomy is often explained by the facts that we are self-conscious, capable of abstract thought (including language use), and capable of intentionally choosing the kind of life that we want to live (e.g., relating to long-term projects or schemes of personal ethics). It could be argued that because nonhuman animals are not capable of exercising this kind of autonomy, they therefore cannot be harmed by its infringement.Some of the book's authors chip away at this presumption, noting (inter alia) that nonhuman animals have desires to move around and do things that are thwarted by confinement or control, that these desires constitute a form of agency, and that (following previous scholarship) nonhuman animals possess some forms of self-awareness. Specifically, the chapters from Valéry Giroux and Carl Saucier-Bouffard, Lori Gruen, and Carlos Naconecy consider such arguments. Naconecy draws upon David DeGrazia's (2009) analysis of animal self-awareness in making his argument. Though the issue deserves more treatment than I can give it here, it seems that nonhuman animals’ autonomy and self-awareness, even if granted, are of a different sort than that possessed by paradigmatic persons. Specifically, (most) nonhuman animals cannot feel wronged by having their preferences overridden because they are not the kinds of beings who are capable of abstractly considering themselves as autonomous and worthy of self-direction. They may desire things, and thwarting these desires might sometimes harm them, but that is a different kind of argument.Infringing upon nonhuman animals’ (more limited kind of) autonomy might nonetheless be wrong, but if different sorts of autonomy are at stake, then moral arguments relating to paradigmatic persons cannot be directly transposed to nonhuman animals. Some additional argument(s) must be supplied, but (on my reading) the book's contributors stop short of this. Nonetheless, as stated above, the ethics of control and questions of nonhuman animals’ autonomy are not as well trod as other issues in animal ethics. Despite my taking issue with some of the details, the discussions contained in the book's first two sections are worthy reading and help to advance the field.Overall, the book's chapters are well written and cogently argued, and given its breadth, different readers will find different things to value in it. The Palgrave Handbook of Practical Animal Ethics is a welcome addition to the literature. (shrink)