Background: Use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK. However, the governance environment, as well as public understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public views of patient data used in research, critically analysing such views though an established biomedical ethics framework, to draw out potential strategies for future good practice guidance and inform ethical and (...) privacy debates. Methods: We searched three databases using terms such as patient, public, opinion, and electronic health records. Empirical studies were eligible for inclusion if they surveyed healthcare users, patients or the public in UK and Ireland and examined attitudes, opinions or beliefs about the use of patient data for medical research. Results were synthesised into broad themes using a framework analysis. Results: Out of 13,492 papers and reports screened, 20 papers or reports were eligible. While there was a widespread willingness to share patient data for research for the common good, this very rarely led to unqualified support. The public expressed two generalised concerns about the potential risks to their privacy. The first of these concerns related to a party’s competence in keeping data secure, while the second was associated with the motivation a party might have to use the data. Conclusions: The public evaluates trustworthiness of research organisations by assessing their competence in data-handling and motivation for accessing the data. Public attitudes around data-sharing exemplified several principles which are also widely accepted in biomedical ethics. This provides a framework for understanding public attitudes, which should be considered in the development in any guidance for regulators and data custodians. We propose four salient questions which decision makers should address when evaluating proposals for the secondary use of data. (shrink)

BackgroundUse of routinely collected patient data for research and service planning is an explicit policy of the UK National Health Service and UK government. Much clinical information is recorded in free-text letters, reports and notes. These text data are generally lost to research, due to the increased privacy risk compared with structured data. We conducted a citizens’ jury which asked members of the public whether their medical free-text data should be shared for research for public benefit, to inform an ethical (...) policy.MethodsEighteen citizens took part over 3 days. Jurors heard a range of expert presentations as well as arguments for and against sharing free text, and then questioned presenters and deliberated together. They answered a questionnaire on whether and how free text should be shared for research, gave reasons for and against sharing and suggestions for alleviating their concerns.ResultsJurors were in favour of sharing medical data and agreed this would benefit health research, but were more cautious about sharing free-text than structured data. They preferred processing of free text where a computer extracted information at scale. Their concerns were lack of transparency in uses of data, and privacy risks. They suggested keeping patients informed about uses of their data, and giving clear pathways to opt out of data sharing.ConclusionsInformed citizens suggested a transparent culture of research for the public benefit, and continuous improvement of technology to protect patient privacy, to mitigate their concerns regarding privacy risks of using patient text data. (shrink)

Infectious disease outbreaks in residential care are complex to manage and difficult to control. Research in this setting that includes individuals who lack capacity must conform to national legislation. We report here on our study that is investigating outbreaks of scabies, an itchy skin infection, in the residential care setting in the southeast of England. There appears to be a gap in legislative advice regarding the inclusion of people who lack capacity in research that takes place during time-limited acute scenarios (...) such as outbreaks. We received inconsistent advice from experts regarding, in particular, the role of nominated consultees. There is a potential inequality for vulnerable populations who cannot themselves provide informed consent in terms of their access to participation in a range of health-related research. (shrink)

Ethics committees now require that individuals give informed consent to much health services research, in the same way as for clinical research. This is misguided. Existing ethical guidelines do not help us decide how to seek consent in these cases, and have allowed managerial experimentation to remain largely unchecked. Inappropriate requirements for individual consent can institutionalise health inequalities and reduce access to services for vulnerable groups. This undermines the fundamental purpose of the National Health Service , and ignores our rights (...) and duties as its members, explored here. Alternative forms of community consent should be actively pursued. (shrink)

Philosophically grounded, methodologically sound, and theoretically rigorous, this paradigm-challenging collection ponders the most dynamic areas of feminist inquiry into bioethical thought and practice and sketches future directions for this rapidly growing field.

Argument schemes are abstractions substantiating the inferential connection between premise(s) and conclusion in argumentative communication. Identifying such conventional patterns of reasoning is essential to the interpretation and evaluation of argumentation. Whether studying argumentation from a theory-driven or data-driven perspective, insight into the actual use of argumentation in communicative practice is essential. Large and reliably annotated corpora of argumentative discourse to quantitatively provide such insight are few and far between. This is all the more true for argument scheme corpora, which tend (...) to suffer from a combination of limited size, poor validation, and the use of ad hoc restricted typologies. In the current paper, we describe the annotation of schemes on the basis of two distinct classifications: Walton’s taxonomy of argument schemes, and Wagemans’ Periodic Table of Arguments. We describe the annotation procedure for each, and the quantitative characteristics of the resulting annotated text corpora. In doing so, we extend the annotation of the preexisting US2016 corpus of televised election debates, resulting in, to the best of our knowledge, the two largest consistently annotated corpora of schemes in argumentative dialogue publicly available. Based on evaluation in terms of inter-annotator agreement, we propose further improvements to the guidelines for annotating schemes: the argument scheme key, and the Argument Type Identification Procedure. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 10.3 (2003) 225-226 [Access article in PDF] Travelers in the Land of Sickness Eric J. Cassell THE PROBLEM OF knowing another person and the world in which that person lives, particularly someone with major mental illness, is addressed in this interesting and rich essay. The number of different metaphors and concepts Potter employs to describe the task of crossing into and then understanding the (...) thoughts, emotions, symptoms, constraints, context, and perspectives of another testifies to the difficulties involved.Yet, as I read the essay, it was not clear what the clinician world traveler, moral tourist, empathizer (and other categories) is supposed to do on the journey to another person. Why do we reach out to the sick person? What is it that we want to know or do that makes this trip necessary? Potter is primarily concerned with mental illness—the examples she cites are patients with schizophrenia—while my experience has in the main been with persons with physical illness, but for the moment, the differences are less important than the central lesson. The illness that the patient presents—the experience of the symptoms, the impairments, disability, and disruptions of the emotional and social existence that happen because of the disease result from an amalgam of the disease process with the specific nature of the sick person. There is no disease in pure form; there is no disease in abstract for clinicians. There is only this sick person. She correctly quotes me, because of all this, as pointing out the importance of integrating knowledge of this particular patient with the abstract knowledge of disease to understand the illness as it is expressed in this person. All to form a basis for the treatment of the patient and especially to help relieve suffering because suffering is always personal, particular, and individual. (It is important in thinking about this topic to remember that most serious diseases, psychiatric and otherwise, are chronic and take place over significant lived time. The acute schizophrenic symptoms or the acute infectious diseases, as dramatic as they are, distract attention from the importance of the place of the sick person.)In physical disease, our long (and continuing) history of separating human beings from nature and the body, and the importance medicine places on objectivity and the objective, have made the inevitable personalization of the disease and symptoms virtually invisible. After ages of explaining psychiatric diseases as the alienation of the person, and a long psychoanalytic period of finding their origins in the person, in the last 30 years these diseases have become increasingly objectified. The place of the person has been diminished as psychiatry has entered the DSM, neurotransmitter, and effective psychotropic drug era. For both physical and mental disease, however, and whatever the current ideology, the nature of person is crucial in determining the onset, diagnosis, course, treatment, and outcome of each illness. It is in order to have an impact on these crucial aspects of sickness that clinicians must come to know their patients to the degree possible. [End Page 225]But there is something more. Nancy Potter quotes a woman with schizophrenia as saying, "All that was my former self has crumbled and fallen together and a creature has emerged of whom I know nothing. She is a stranger to me... She is not real—she is not I... She is I—and because I still have myself on my hands, even if I am a maniac, I must deal with me somehow." (Potter, 2003, p. 215)Must she deal with this crazy self alone? Is that not what her doctors and caregivers are for? But how can they take care of her, protect her, keep what is left intact, and sustain her until she is (hopefully) better without knowing who she is? She makes clear in those few phrases that inside her there is a person with a past, a family, a world, a culture, a role(s) in life, relationships, a body, dreams for the future, things she does, and all the other things that make up a person. It is in... (shrink)

This article draws on data from a qualitative research study undertaken in an old UK university with the main aim of investigating the issue of the gender dimension of academic careers. It examines the idea of an individualistic academic career that demands self-promotion, which is still used as a measure of achievement by those in senior positions. However, there is a basic contradiction. While this idea is upheld, men simultaneously gain by an in-built patriarchal support system. They do not have (...) to make a conscious effort to be helped by it, thereby perpetuating the cultural hegemony of individualism. Women are not admitted to this support system, and if they are seen as needing or wanting to set up their own system, this is viewed as a weakness. The answer appears to be for women to strategically harness feminist ways of working in a collaborative and supportive way. (shrink)

In this paper a dialogue game for critical discussion is developed. The dialogue game is a formalisation of the ideal discussion model that is central to the pragma-dialectical theory of argumentation. The formalisation is intended as a preparatory step to facilitate the development of computational tools to support the pragma-dialectical study of argumentation. An important dimension of the pragma-dialectical discussion model is the role played by speech acts. The central issue addressed in this paper is how the speech act perspective (...) can be accommodated in the formalisation as a dialogue game. The starting point is an existing ‘basic’ dialogue game for critical discussion, in which speech acts are not addressed. The speech act perspective is introduced into the dialogue game by changing the rules that govern the moves that can be made and the commitments that these result in, while the rules for the beginning, for the end, and for the structure of the dialogue game remain unchanged. The revision of the move rules is based on the distribution of speech acts in the pragma-dialectical discussion model. The revision of the commitment rules is based on the felicity conditions that are associated with those speech acts. (shrink)

Foreign language anxiety has been identified as a crucial affective factor in language learning. Similar to the situation in language classes, university students in interpretation classes are required to perform in a foreign language when their language skills are inadequate. Investigations are needed to determine the specific impact of FLA on interpretation learning. This study investigated the effects of the specific interpretation classroom FLA on interpretation learning and dependency distance as an indicator of learners’ cognitive load. The participants were 49 (...) undergraduate and graduate students enrolled in English–Chinese interpretation classes at a university in Hong Kong. The results showed a significant negative correlation between ICFLA levels and consecutive interpretation achievement scores. ICFLA was also negatively correlated with DD in consecutive interpretations. Four factors underlying ICFLA were identified. The findings of this study would provide useful insights for researchers and educators to understand the nature and effect of FLA in different settings. (shrink)

This book reconceives disability as a set of social relations and practices, as experienced embodiment, and as an emancipatory movement, as well as a biomedical phenomenon. The author brings new attention to complex ethical questions surrounding disability, looking at not only the biomedical understanding of impairment, but also its cultural representations and social organization.

La maladie de l'ame... la belle expression platonicienne n'a de cesse d'etre d'actualite. Non seulement elle est prompte a revenir d'epoque en epoque, mais elle semble particulierement friande de la notre. Que cette maladie designe une vague tristesse, un taedium vitae, ou, plus grave, une depression, elle implique tout a la fois la souffrance morale et la souffrance physique. L'ame et le corps sont divises mais se retrouvent dans la douleur si bien que la maladie de l'ame vient de ce (...) que nous avons un corps. De ce constat paradoxal Jackie Pigeaud tire une histoire, celle du triomphe du dualisme, du fardeau de l'ame et du corps contraints a etre separes et ensemble a perpetuite. Cette histoire trouve son origine dans le monde grec, et plus exactement dans sa philosophie. La division entre maladies de l'ame et autres maladies, c'est-a-dire maladies du corps, appartient a la philosophie. La medecine aurait ete bien soulagee de cette partition. Est-ce a dire qu'elle n'entendait pas etre philosophique? Sans doute: Hippocrate en offre un bon exemple. L'accord, tacite, est le suivant: l'ame appartient au philosophe et le corps au medecin. Ciceron s'occupe des passions et Galien suspend son jugement des qu'il approche la psyche. Chacun y trouve son compte mais les consequences sont importantes: la partition du champ des maladies, la place du malade dans la societe, les traitements a apporter, notamment a la folie, dependent de ce dualisme initial. Si le legs de la medecine greco-romaine est riche, il est aussi fort lourd et trouve des developpements tout au long de l'histoire de la medecine, jusqu'a la constitution au XVIIIe siecle de la psychiatrie. D'une ecriture et d'une pensee personnelles et profondes, ce livre est un essai sur l'histoire de la pensee medicale, depuis l'Antiquite jusqu'a nos jours. La Maladie de l'ame a ete un succes des sa parution, et ce succes n'a pas ete dementi depuis. L'ouvrage n'etait malheureusement plus disponible: les livres ont leur destin commentait l'auteur. Avec cette edition revue et augmentee, accompagnee d'une preface nouvelle, le livre connait enfin le sort qu'il merite.Jackie Pigeaud est professeur emerite de litterature latine a l'Universite de Nantes et membre de l'Institut universitaire de France. On lui doit egalement, aux Belles Lettres, Folie et cures de la folie chez les medecins de l'Antiquite greco-romaine. La manie. (shrink)

This paper identifies and discusses ethical issues associated with the increasingly common use of multiple reminders in postal survey research. When undertaking postal surveys, it is common to improve response rates by contacting survey recipients multiple times encouraging them to complete the questionnaire. The ethical implications of the use of multiple reminders are rarely discussed in the literature advocating their use. The paper briefly reviews the arguments encouraging use of multiple reminders, and identifies and discusses the potential ethical issues raised (...) by their use in postal surveys. A set of principles is then proposed for using multiple reminders in an ethically responsible way. It is argued that by following these principles, the use of multiple reminders should present no increased potential for harassment or coercion of survey recipients compared to alternative survey techniques. The use of these principles in a recent postal survey is then presented and discussed; a 60% response rate was achieved utilising multiple survey reminders in a way consistent with this set of principles. (shrink)

The work of a bioethicist carries distinctive responsibilities. Alongside those of any worker, there are responsibilities associated with giving guidance to practitioners, policy makers and the public. In addition, bioethicists are professionally exposed to and required to identify situations of moral trouble, and as a result may find themselves choosing to work as advocates or activists, with responsibilities that are distinct from those generally acknowledged within academia. The requirement for bioethics to make normative judgements entails taking a stance, which means (...) there cannot be a sharp line between ‘academic’ or ‘objective’ bioethics, and advocacy/activism, but a continuum of bioethicists’ engagement and an associated continuum of responsibilities. (shrink)

As an introduction to our work, we emphasize the parallel interpretation of abstract tools and the concepts of undetermined and vague information. Imprecision, uncertainty and their relationships are inspected. Suitable interpretations of the fuzzy sets theory are applied to legal phenomena in an attempt to clearly circumscribe the possible applications of the theory. The fundamental notion of reference sets is examined in detail, hence highlighting their importance. A systematic and combinatorial classification of the relevant subsets of the legal field is (...) supplied for practical application. Although the use of the fuzzy sets theory is sometimes suggested as a palliative measure (no competition exists), it can also be complementary (serve as a building block to improve modelisation). An Appendix gives a brief recall of the key-concepts of the axiomatic theory of fuzziness and its developments: fuzzy sets, fuzzy logic, fuzzy control and theory of possibility. (shrink)

can be adapted and adopted by developing countries. IFC sees this as being an area where we may be able to benchmark and promote positive change. ● The force of global trade initiatives also influences animal welfare.

Susan has been profoundly deaf since childhood. She is a hearing aid wearer, and likes to use the induction loops built into some public spaces, such as theaters and cinemas, to help cut down the background noise that can make hearing speech very difficult. But this depends on the building having an induction loop fitted and properly maintained. Like many other induction loop users, Susan frequently finds that the advertised loop system is either working poorly or not working at all. (...) Almost as often, she then has the experience of making a complaint about it only to have the problem denied. If she persists, she is often then met... (shrink)

Pandemics such as COVID-19 place everyone at risk, but certain kinds of risk are differentially severe for groups already made vulnerable by pre-existing forms of social injustice and discrimination. For people with disability, persisting and ubiquitous disablism is played out in a variety of ways in clinical and public health contexts. This paper examines the impact of disablism on pandemic triage guidance for allocation of critical care. It identifies three underlying disablist assumptions about disability and health status, quality of life, (...) and social utility, that unjustly and potentially catastrophically disadvantage people with disability in COVID-19 and other global health emergencies. (shrink)

This research provides a look at men doing gender in the highly feminized context of temporary clerical employment. Male clerical temporaries, as with other men who cross over into “women's work,” face institutionalized challenges to their sense of masculinity. In particular, male clerical temporary workers face gender assessment—highlighting their failure to live up to the ideals of hegemonic masculinity. The resulting gender strategies these men adopt reveal how male clerical temporary workers “do masculinity”—often in a collaborative performance shaped by the (...) gendered expectations of their agencies, their clients, and even themselves—to reassert the feminine identification of the job while at the same time rejecting its application to them. Paradoxically, rather than disrupting the gender order, the gender strategies used by these male clerical temporaries help to reproduce and naturalize the gendered organization of work and reinvigorate hegemonic masculinity and its domination over women and subaltern men. (shrink)

In 2004, a group of American women were challenged by the vision of designing spiritual formation curricula for women in China who were serving as leaders in their churches. This article describes the highly relational context from which the curricula came, and the premises that informed the design of the curricula based on two series of five retreats each held within fifteen months. In addition, the methods by which the curricula are regularly evaluated in order to meet the current needs (...) of the women in China are described. The results have been ongoing use of the curricula since 2007 with documented positive effect upon the women of China, samples of which are included in the article. The curricula will continue to be in use in China and in other Asian nations as opportunity presents itself. (shrink)

Literature relating to gender and discourse has shown that the features and structure of women's talk are highly cooperative. The implicature taken from this research has led to a binary opposition of gender stereotyping that allows for the inference that if women's talk is stylistically cooperative then it follows that cooperativity is a characteristic feature of women's social lives. Further, in opposition to this, men are seen as competitive and, as Cameron has rightly noted, analysis that focuses on the `style (...) rather than the substance of what is said' obscures the complex nature of talk and results in unhelpful `competitive/cooperative oppositions'. This article explores the genre of gossip and suggests two main sub-genres `bitching' and `peer group news-giving'. Analysis of instances of women's `bitching' reveals that while women's conversations may rely on interlocutor cooperativity and a collaborative floor, the conversations are underpinned by a need to discursively claim symbolic capital through competition for socially acceptable images of femininity which reproduce a hegemonic ideology of gender. (shrink)

Here is a thoroughly updated edition of a classic in palliative medicine. Two new chapters have been added to the 1991 edition, along with a new preface summarizing where progress has been made and where it has not in the area of pain management. This book addresses the timely issue of doctor-patient relationships arguing that the patient, not the disease, should be the central focus of medicine. Included are a number of compelling patient narratives. Praise for the first edition "Well (...) written. . .should be read by everyone in medical practice or considering a career in medicine."---JAMA. "Memorable passages, important ideas, and critical analysis. This is a book that clinicians and educators should read."---New England Journal of Medicine. (shrink)

Mitochondrial replacement techniques are intended to avoid the transmission of mitochondrial diseases from mother to child. MRT represent a potentially powerful new biomedical technology with ethical, policy, economic and social implications. Among other ethical questions raised are concerns about the possible effects on the identity of children born from MRT, their families, and the providers or donors of mitochondria. It has been suggested that MRT can influence identity directly, through altering the genetic makeup and physical characteristics of the child, or (...) indirectly through changing the child's experience of disease, and by generating novel intrafamilial relationships that shape the sense of self. In this article I consider the plausibility and ethical implications of these proposed identity effects, but I focus instead on a third way in which identity may be affected, through the mediating influence of the wider social world on MRT effects on identity. By taking a narrative approach, and examining the nature and availability of identity narratives, I conclude that while neither direct genetic nor indirect experiential effects can be excluded, social responses to MRT are more likely to have a significant and potentially damaging influence on the generation of MRT children's narratives of identity. This conclusion carries some implications for the collective moral responsibility we hold to ensure that MRT, if implemented, are practised in ethically justifiable ways. (shrink)

This note is in part a response to Alastair Hannay's review discussion, ?A Kind of Philosopher: Comments in Connection with Some Recent Books on Kierkegaard? (Inquiry, Vol. 18 [1975], No. 3). In his review, Hannay states that Kierkegaard and philosophy appear to be on the road to a reconciliation, and asks What is behind this get?together if it is one??. I suggest that in some remarks touching on Kierkegaard's theory of Truth, Hannay has touched on the ground for that ?get?together?, (...) a Pyrrhonian scepticism. (shrink)

In the past few years, anthropological research concerned with the ethnographic aspects of ritual practices has renewed its interest in the meaning of ritual symbolism. This research has been possible because of a methodological inversion, namely, starting with a descriptive study of the rites rather than analyzing religious beliefs, contrarily to what was the moraine frontale of traditional history of religion.

Long considered to be institutions outside of time, the temples of India are today the subject of ethno-historical studies that attempt to establish their continuous and recent transformations. Recent monographs, based especially on relationships between the central government and local authorities, reconstruct by periods their medieval, modern and present history, that is the long destiny of constant restructuring over time (Appadurai 1981; Fuller 1984; Reiniche 1989), showing that temples, whether large or small, never ceased being the center of important conflicts (...) between social groups seeking dominance. (shrink)

During the twelfth and thirteenth centuries, great new trends of Jewish thought emerged whose widely varied representatives--Kabbalists, philosophers, and astrologers--each claimed that their particular understanding revealed the actual secret of the Torah. They presented their own readings in a coded fashion that has come to be regarded by many as the very essence of esotericism. Concealment and Revelation takes us on a fascinating journey to the depths of the esoteric imagination. Carefully tracing the rise of esotericism and its function in (...) medieval Jewish thought, Moshe Halbertal's richly detailed historical and cultural analysis gradually builds conceptual-philosophical force to culminate in a masterful phenomenological taxonomy of esotericism and its paradoxes. Among the questions addressed: What are the internal justifications that esoteric traditions provide for their own existence, especially in the Jewish world, in which the spread of knowledge was of great importance? How do esoteric teachings coexist with the revealed tradition, and what is the relationship between the various esoteric teachings that compete with that revealed tradition? Halbertal concludes that, through the medium of the concealed, Jewish thinkers integrated into the heart of the Jewish tradition diverse cultural influences such as Aristotelianism, Neoplatonism, and Hermeticisims. And the creation of an added concealed layer, unregulated and open-ended, became the source of the most daring and radical interpretations of the tradition. (shrink)

This paper reports on a method for the development of grade descriptors for an international Economics A-level syllabus. The syllabus assessment provided the opportunity to explore how different examination paper structures (compulsory short answer written questions and longer essay type questions) and different mark schemes affected this relatively new method for developing grade descriptors. Quantitative analyses of candidates' marks on each question on the November 1999 examination were carried out to identify the grade (A to E) at which candidates 'mastered' (...) the question. Qualitative differences between answers to the question from candidates achieving different grades were identified by expert judges using Kelly's Repertory Grid. These qualitative data were edited to form grade descriptors which were used in the process of grading economics examinations taken in summer 2000, and their usefulness was evaluated. The effects of the question choice and type on the development process are discussed. (shrink)