The Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limiting illness to lead a change that matters to them. Individuals join a facilitated online peer support group to identify an issue they feel strongly about, plan for change and take action to bring that change about. The programme is developed and guided by a Programme Advisory Group with clinical and lay membership. This article charts the trialling of the patients changing thing together ethics pack, designed to support all (...) members of the Programme Advisory Group in taking an equal role in ethical decision-making as they guide the programme's ongoing development. As a trial of its efficacy, the pack was used by the author to consider an ethical dilemma at the heart of the development of the Patients Changing Things Together programme, that is, is it ethical to offer a community palliative care programme which has the potential to bring participants harm as well as good? The author reports a strong ethical argument for offering this programme, while concluding the need for the Programme Advisory Group to make the final decision, using the Patients Changing Things Together ethics pack to consider the results of the evaluation of the programme's pilot. The article concludes that this pack provides an effective tool to guide ethical novices through the ethical complexities of developing a community-based palliative care intervention programme. It raises the issue that such inclusivity is achieved through a normative decision-making process which denies the fluidity and creativity which may inform the best ethical decision-making practice. (shrink)

This paper offers an extended critique of the proliferation of talk and writing of business ethics in recent years. FollowingLevinas, it is argued that the ground of ethics lies in our corporeal sensibility to proximate others. Such moral sensibility, however, isreadily blunted by a narcissistic preoccupation with self and securing the perception of self in the eyes of powerful others. Drawing upon a Lacanian account of the formation of the subject, and a Foucaultian account of the workings of disciplinary power, (...) it is then argued that the governance of the corporation is effected precisely through encouraging such a narcissistic preoccupation with the self. For themost part our narcissistic concerns are bound to ethically indifferent financial interests. But in recent years they have also been harnessed to the demand for environmental, social and ethical responsibility by the corporation. It is argued, however, that the desire to be seen to be ethical-the ethics of narcissus-is the obverse of "being responsible for.". (shrink)

Often when a new scientific theory is introduced, new terms are introduced along with it. Some of these new terms might be given explicit definitions using only terms that were in currency prior to the introduction of the theory. Some of them might be defined using other new terms introduced with the theory. But it frequently happens that the standard formulations of a theory do not define some of the new terms at all; these terms are adopted as primitives. The (...) audience is expected to come to grasp the meanings of the primitive terms by learning the role they play in the theory and its applications. I shall call such new and undefined terms, as well as new terms that are defined using them, theoretical terms. [1] If T is a theory, the T-terms are the theoretical terms introduced by T. A theoretical term need not be a word new to human language; it might be an old term that is employed in a new and specialized sense, not equivalent to any of its familiar senses; e.g. “color” in quantum chromodynamics. (shrink)

This article offers a comprehensive and critical analysis of Eric Heinze’s book Hate Speech and Democratic Citizenship (Oxford University Press, 2016). Heinze’s project is to formulate and defend a more theoretically complex version of the idea (also defended by people like Ronald Dworkin and James Weinstein) that general legal prohibitions on hate speech in public discourse compromises the state’s democratic legitimacy. We offer a detailed synopsis of Heinze’s view, highlighting some of its distinctive qualities and strengths. We then develop a (...) critical response to this view with three main focal points: (1) the characterisation of democratic legitimacy as something distinct from (and whose demands aren’t identical with those of) legitimacy per se; (2) the claim that the requirements of democracy are hypothetical, rather than categorical, imperatives; and relatedly (3) the question of how we should reconcile the requirements of democratic legitimacy with the costs that may follow from prioritising democratic legitimacy. We argue that there are significant difficulties for Heinze’s account on all three fronts. (shrink)

In this paper, we aim to show that the framework of embedded, distributed, or extended cognition offers new perspectives on social cognition by applying it to one specific domain: the psychology of memory. In making our case, first we specify some key social dimensions of cognitive distribution and some basic distinctions between memory cases, and then describe stronger and weaker versions of distributed remembering in the general distributed cognition framework. Next, we examine studies of social influences on memory in cognitive (...) psychology, and identify the valuable concepts and methods to be extended and embedded in our framework; we focus in particular on three related paradigms: transactive memory, collaborative recall, and social contagion. Finally, we sketch our own early studies of individual and group memory developed within our framework of distributed cognition, on social contagion of autobiographical memories, collaborative flashbulb memories, and memories of high school at a high school reunion. We see two reciprocal benefits of this conceptual and empirical framework to social memory phenomena: that ideas about distributed cognition can be honed against and tested with the help of sophisticated methods in the social cognitive psychology of memory; and conversely, that a range of social memory phenomena that are as yet poorly understood can be approached afresh with theoretically motivated extensions of existing empirical paradigms. (shrink)

A recent surge of research has begun to examine music participation and well-being; however, a particular challenge with this work concerns theorizing around the associated well-being benefits of musical participation. Thus, the current research used Self-Determination Theory to consider the potential associations between basic psychological needs (competence, relatedness, and autonomy), self-determined autonomous motivation, and the perceived benefits to well-being controlling for demographic variables and the musical activity parameters. A sample of 192 Australian residents (17-85, Mage = 36.95), who were currently (...) participating in a musical activity at the time, completed an online questionnaire. Results indicated that females were more likely to perceive benefits to their well-being; and that how important an individual considers music in their life was positively related to perceived well-being. Importantly, the analyses also revealed that the basic needs of competency and relatedness were related to overall perceived well-being as well as specifically social, cognitive, and esteem dimensions of well-being. Autonomous motivation demonstrated significant associations with both an overall well-being score as well as four of five specific well-being subscales measured. Collectively, the findings indicate that Self-Determination Theory offers a useful theoretical framework to understanding the relationship between musical participation and well-being. Further, the pattern of findings reiterates the positive associations between musical participation and one’s psychosocial well-being, with broad implications for people involved in the facilitation of musical activity. (shrink)

Strategies to support the psychosocial well-being of older adults living in aged-care are needed; and evidence points toward music listening as an effective, non-pharmacological tool with many benefits to quality of life and well-being. Yet, the everyday listening practices of older adults living in residential aged-care remain under-researched. The current study explored older adults’ experiences of music listening in their daily lives while living in residential aged-care and considered how music listening might support their well-being. Specifically, what might go into (...) autonomous listening activities? 32 Australian residents living in two Australian care facilities participated in semi-structured interviews. The results of a qualitative thematic analysis revealed three themes pertaining to “previous music experiences and interest,” “current music listening,” and “barriers to listening.” While an interest in and access to music did not necessarily result in everyday listening practices, of those participants who did listen to music, perceived benefits included outcomes such as entertainment, enjoyment, relaxation, and mood regulation. Drawing on Ruud’s notion of music as a “cultural immunogen” supporting well-being and Self-Determination Theory, theoretical implications of the findings are addressed, relating to how to create and support music activities in aged-care facilities so that they are engaging, meaningful, and promote emotional regulation, community, and well-being. (shrink)

There are increasing concerns that research regulatory requirements exceed those required to manage risks, particularly for low- and negligible-risk research projects. In particular, inconsistent documentation requirements across research sites can delay the conduct of multi-site projects. For a one-year, negligible-risk project examining biobank operations conducted at three separate Australian institutions, we found that the researcher time required to meet regulatory requirements was eight times greater than that required for the approved research activity. In total, 76 business days were required to (...) obtain the necessary approvals, and site-specific processes required twice as long as primary Human Research Ethics Committee and Research Governance Office processes. We describe the impact of this administrative load on the conduct of a one-year, externally-... (shrink)

Calls for the “translation” of research from bench to bedside are increasingly demanding. What is translation, and why does it matter? We sketch the recent history of outcome-oriented translational research in the United States, with a particular focus on the Roadmap Initiative of the National Institutes of Health (Bethesda, MD). Our main example of contemporary translational research is stem cell research, which has superseded genomics as the translational object of choice. We explore the nature of and obstacles to translational research (...) and assess the ethical and biomedical challenges of embracing a translational ethos. (shrink)

We have investigated the emotional profile of dreams and the relationship between dream emotion and cognition using a form that specifically asked subjects to identify emotions within their dreams. Two hundred dream reports were collected from 20 subjects, each of whom produced 10 reports. Compared to previous studies, our method yielded a 10-fold increase in the amount of emotion reported. Anxiety/fear was reported most frequently, followed, in order, by joy/elation, anger, sadness, shame/guilt, and, least frequently, affection/eroticism. Unexpectedly, there was no (...) significant difference in the profiles of emotion reported by men and women. When the reports were scored for bizarreness, a significant correlation was found between the occurrence of bizarreness and major shifts in emotion. These results support the conclusion that dreaming is a mental state whose general emotional features are widely shared across individuals and strongly linked to cognitive features within individual dreams. (shrink)

For all of the emphasis on quality improvement—as well as the acknowledged overlap between assessment of the quality of healthcare services and clinical ethics—the quality of clinical ethics consultation has received scant attention, especially in terms of empirical measurement. Recognizing this need, the second edition of Core Competencies for Health Care Ethics Consultation identified four domains of ethics quality: (1) ethicality, (2) stakeholders’ satisfaction, (3) resolution of the presenting conflict/dilemma, and (4) education that translates into knowledge. This study is the (...) first, to our knowledge, to directly measure all of these domains. Here we describe the quality improvement process undertaken at a tertiary care academic medical center, as well as the tools developed to measure the quality of ethics consultation, which include post-consultation satisfaction surveys and weekly case conferences. The information gained through these tools helps to improve not only the process of ethics consultation, but also the measurement and assurance of quality. (shrink)

Community-based participatory research (CBPR) focuses on specific community needs, and produces results that directly address those needs. Although conducting ethical CBPR is critical to its success, few academic programs include this training in their curricula. This article describes the development and evaluation of an online training course designed to increase the use of CBPR in mental health disciplines. Developed using a participatory approach involving a community of experts, this course challenges traditional research by introducing a collaborative process meant to encourage (...) increased participation by special populations and narrow the parity gap in effective mental health treatment and services delivery. (shrink)

This paper focuses on examining the dynamic nature of community supported agriculture (CSA) and the real-world experiences which mark its contours, often making it distinct from the early idealized CSA “model.” Specifically, our study examines the narratives of the farmers of Devon Acres CSA over its duration, in tandem with a survey of recent shareholders in order to understand and explain its evolution. The framework we develop here shows that this CSA is largely characterized by instrumental and functional beliefs and (...) practices, with some elements in the collaborative mode. A key contribution of this research is the development of a framework which helps to highlight the relative fluidity and patchwork quality of CSA participant positions over time. At Devon Acres, the real-world factors and issues influencing CSA evolution are seen to be products of both the local and larger contexts, evident in such areas as shifts in farmer learning and adaptation, differences between beliefs and practices in member volunteer efforts, and changes in farm and resource conditions. With respect to CSA more broadly, we argue that the reality of dominant food system context and site-specific influences on CSA development compels us to rework our attachment to early idealized “model” traits. Expansion in CSA numbers, evidence of adaptation and situated learning, and retention of the local and organic as core traits, speak to the pragmatic yet transformative potential of CSA contribution to food system change. (shrink)

Background: Empirical ethics inquiry works from the notion that stakeholder perspectives are necessary for gauging the ethical acceptability of human studies and assuring that research aligns with societal expectations. Although common, studies involving different populations often entail comparisons of trends that problematize the interpretation of results. Using graphical model selection—a technique aimed at transcending limitations of conventional methods—this report presents data on the ethics of clinical research with two objectives: (1) to display the patterns of views held by ill and (...) healthy individuals in clinical research as a test of the study's original hypothesis and (2) to introduce graphical model selection as a key analytic tool for ethics research. Methods: In this institutional review board (IRB)-approved, National Institutes of Health-funded project, data were collected from 60 mentally ill and 43 physically ill clinical research protocol volunteers, 47 healthy protocol-consented participants, and 29 healthy individuals without research protocol experience. Respondents were queried on the ethical acceptability of research involving people with mental and physical illness (i.e., cancer, HIV, depression, schizophrenia, and posttraumatic stress disorder) and non-illness-related sources of vulnerability (e.g., age, class, gender, ethnicity). Using a statistical algorithm, we selected graphical models to display interrelationships among responses to questions. Results: Both mentally and physically ill protocol volunteers revealed a high degree of connectivity among ethically salient perspectives. Healthy participants, irrespective of research protocol experience, revealed patterns of views that were not highly connected. Conclusions: Between ill and healthy protocol participants, the pattern of views was vastly different. Experience with illness was tied to dense connectivity, whereas healthy individuals expressed views with sparse connections. In offering a nuanced perspective on the interrelation of ethically relevant responses, graphical model selection has the potential to bring new insights to the field of ethics. (shrink)

Little is known about how individuals with and without mood disorders perceive the inherent risks and helpfulness of participating in innovative psychiatric research, or about the factors that influence their willingness to participate. We conducted an online survey with 80 individuals (self-reported mood disorder [n = 25], self-reported good health [n = 55]) recruited via MTurk. We assessed respondents’ perceptions of risk and helpfulness in study vignettes associated with two innovative research projects (intravenous ketamine therapy and wearable devices), as well (...) as their willingness to participate in these projects. Respondents with and without mood disorders perceived risk similarly across projects. Respondents with no mood disorders viewed both projects as more helpful to society than to research volunteers, while respondents with mood disorders viewed the projects as equally helpful to volunteers and society. Individuals with mood disorders perceived ketamine research, and the two projects on average, as more helpful to research volunteers than did individuals without mood disorders. Our findings add to a limited empirical literature on the perspectives of volunteers in innovative psychiatric research. (shrink)

The complexities of modern science are not adequately reflected in many bioethical discussions. This is especially problematic in highly contested cases where there is significant pressure to generate clinical applications fast, as in stem cell research. In those cases a more integrated approach to bioethics, which we call systems bioethics, can provide a useful framework to address ethical and policy issues. Much as systems biology brings together different experimental and methodological approaches in an integrative way, systems bioethics integrates aspects of (...) the history and philosophy of science, social and political theory, and normative analysis with the science in question. In this paper we outline how a careful analysis of the science of stem cell research can help to refocus the discussions related to the clinical applications of stem cells. We show how inaccurate or inadequate scientific assumptions help to create a set of unrealistic expectations and badly inform ethical deliberations and policy development. Systems bioethics offers resources for moving beyond the current impasse. (shrink)

Advancing a creolizing reading of the eighteenth-century philosopher, Jean-Jacques Rousseau, this volume explores Rousseau’s strong resonances in Caribbean thought and politics.

Research integrity is core to the mission of higher education. In undergraduate student samples, self-reported rates of data fabrication have been troublingly high. Despite this, no research has investigated undergraduate data fabrication in a more systematic manner. We applied duplication screening techniques to 18 data sets submitted by psychology honors students for assessment. Although we did not identify any completely duplicated cases, there were numerous partial duplicates. Rather than indicating fabrication, however, these partial duplicates are likely a consequence of poor (...) measure selection, insufficient data screening, and/or participant characteristics. Implications for the teaching and supervision of honors students are discussed. (shrink)

Calls for the “translation” of research from bench to bedside are increasingly demanding. What is translation, and why does it matter? We sketch the recent history of outcome-oriented translational research in the United States, with a particular focus on the Roadmap Initiative of the National Institutes of Health. Our main example of contemporary translational research is stem cell research, which has superseded genomics as the translational object of choice. We explore the nature of and obstacles to translational research and assess (...) the ethical and biomedical challenges of embracing a translational ethos. (shrink)

For the past 30 years, Paget Henry has been one of the most articulate and creative voices in Caribbean scholarship, making seminal contributions to the study of Caribbean political economy, C.L.R. James studies, critical theory, phenomenology, and Africana philosophy. This volume includes some of his most important essays from across his remarkable career, providing an introduction to a broad range of pressing contemporary themes and to the unique mind of one of the leading Caribbean intellectuals of his generation.

Many mammals use scent marks to advertise territory ownership, but only recently have we started to understand the complexity of these scent signals and the types of information that they convey. Whilst attention has generally focused on volatile odorants as the main information molecules in scents, studies of the house mouse have now defined a role for a family of proteins termed major urinary proteins (MUPs) which are, of course, involatile. MUPs bind male signalling volatiles and control their release from (...) scent marks. These proteins are also highly polymorphic and the pattern of polymorphic variants provides a stable ownership signal that communicates genome‐derived information on the individual identity of the scent owner. Here we review the interaction between the chemical basis of mouse scents and the dynamics of their competitive scent marking behaviour, demonstrating how it is possible to provide reliable signals of the competitive ability and identity of individual males. BioEssays 26:1288–1298, 2004. © 2004 Wiley Periodicals, Inc. (shrink)

To promote ethical practices, healthcare managers must understand the ethical challenges encountered by key stakeholders. To characterize ethical challenges in Veterans Administration (VA) facilities from the perspectives of managers, clinicians, patients, and ethics consultants. We conducted focus groups with patients (n = 32) and managers (n = 38); semi-structured interviews with managers (n = 31), clinicians (n = 55), and ethics committee chairpersons (n = 21). Data were analyzed using content analysis. Managers reported that the greatest ethical challenge was fairly (...) distributing resources across programs and services, whereas clinicians identified the effect of resource constraints on patient care. Ethics committee chairpersons identified end-of-life care as the greatest ethical challenge, whereas patients identified obtaining fair, respectful, and caring treatment. Perspectives on ethical challenges varied depending on the respondent's role. Understanding these differences can help managers take practical steps to address these challenges. Further, ethics committees seemingly, are not addressing the range of ethical challenges within their institutions. (shrink)

For Lack of a Better Plan: A Framework for Ethical, Legal, and Clinical Challenges in Complex Inpatient Discharge Planning Content Type Journal Article Pages 311-326 DOI 10.1007/s10730-009-9117-6 Authors Jane Jankowski, Albany Medical Center Albany NY 12208 USA Terese Seastrum, Northeast Health 2212 Burdett Ave. Troy NY 12180 USA Robert N. Swidler, Northeast Health 2212 Burdett Ave. Troy NY 12180 USA Wayne Shelton, Alden March Bioethics Institute, Albany Medical College 47 New Scotland Avenue, MC 153 Albany NY 12208-3478 USA Journal (...) HEC Forum Online ISSN 1572-8498 Print ISSN 0956-2737 Journal Volume Volume 21 Journal Issue Volume 21, Number 4. (shrink)

Traditional, positivist assessment approaches generally fail to capture the nuances of learners’ clinical competence in medical programmes. This has led to the implementation of an alternate assessment approach known as ‘programmatic assessment’, which embraces subjectivity of human judgement in holistic decision making in clinical settings. Faculty and staff have found the introduction of programmatic assessment to be challenging because it is a major, complex change to the traditional way of carrying out assessment. Extending our previous work, where we used critical (...) realism to explore students’ experiences of programmatic assessment, we here unpack the underlying conditions and mechanisms triggered by programmatic assessment’s implementation. We applied Bhaskar’s concept of ontological stratification, retroduction and Archer’s theoretical accounts of morphogenesis/stasis to theorize the interplay between the socio-cultural entities that constrain and enable desired changes in assessment practices, and those that condition students and staff to accept or reject the new ‘non-traditional’ assessment processes. (shrink)

To promote ethical practices, healthcare managers must understand the ethical challenges encountered by key stakeholders. To characterize ethical challenges in Veterans Administration facilities from the perspectives of managers, clinicians, patients, and ethics consultants. We conducted focus groups with patients and managers ; semi-structured interviews with managers, clinicians, and ethics committee chairpersons. Data were analyzed using content analysis. Managers reported that the greatest ethical challenge was fairly distributing resources across programs and services, whereas clinicians identified the effect of resource constraints on (...) patient care. Ethics committee chairpersons identified end-of-life care as the greatest ethical challenge, whereas patients identified obtaining fair, respectful, and caring treatment. Perspectives on ethical challenges varied depending on the respondent's role. Understanding these differences can help managers take practical steps to address these challenges. Further, ethics committees seemingly, are not addressing the range of ethical challenges within their institutions. (shrink)

This paper synthesises a collaborative review of social capital theory, with particular regard for its relevance to the changing educational landscape within Scotland. The review considers the common and distinctive elements of social capital, developed by the founding fathers-Putnam, Bourdieu and Coleman-and explores how these might help to understand the changing contexts and pursue opportunities for growth.

This study explored possible changes in family functioning from the perspective of parents during the COVID-19 pandemic. Thirty-four parents/guardians of children under 18 years completed a semi-structured interview, average length 47 min. Interviews focussed on changes in different aspects of family functioning including family roles, routines, and rules; parenting practices; communication and relationships; and strengths, challenges, and tensions. Data were analysed using reflexive thematic analysis applied in an idiographic and inductive manner to reduce the loss of individual experiences and perspectives. (...) Four superordinate themes were identified: shifting family roles and boundaries throughout the pandemic; impacts on routines and relationships; opportunities and resourcing; and, experiences of support and unity. Gender differences were evident across some themes, particularly changing roles, workload and work-home boundaries. Challenges and tensions were frequently highlighted, particularly by “vulnerable” family groups such as those with children with disabilities. Parents also described a renewed sense of family and community that underpinned adaptive coping responses. The results highlight the importance of family connectedness in times of need. (shrink)