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)
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.
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)
Argument schemes are abstractions substantiating the inferential connection between premise 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)
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)
A ceux qui se montrent désireux de saisir l'épaisseur politique et historique du droit constitutionnel, les différends opposant les corps constitués peuvent apparaître, dans leurs expressions les plus marquées, comme des objets d'étude particulièrement stimulants. En effet, ces conflits peuvent se présenter comme de singuliers laboratoires où devient brusquement visible la texture politique des lois constitutionnelles dont les dispositions sont parfois si fortement tissées d'incertitudes et d'ellipses qu'elles laissent soudain jaillir l'imprévisible. D'une part, le conflit constitutionnel n'est pas une simple (...) controverse constitutionnelle participant généralement d'un processus historique de pacification des différends politiques par le droit : d'autre part, il constitue un conflit politique dont la particularité réside dans le fait que les acteurs s'efforcent d'étayer leur raisonnement par des arguments juridiques tirés d'une lecture de la lettre constitutionnelle, chaque camp accusant la partie adverse d'une mésinterprétation ou d'une violation de ses dispositions. Lors d'une telle crise, mis à l'épreuve de sa propre force, le droit constitutionnel prend toute la mesure de l'indétermination et de la duplicité de ses règles. Qu'ils portent sur l'interprétation ou sur l'application des dispositions constitutionnelles relatives aux modalités d'exercice de la puissance étatique, les différends entre organes constitués peuvent ainsi, dans certaines circonstances, dépasser le stade de la simple controverse pour épouser la forme plus dense du conflit constitutionnel. En effet, quand la difficulté de mettre un terme au différend est telle que les processus de discussion et de délibération codifiés par le droit sont eux-mêmes impuissants à imposer une solution reconnue acceptable par tous les acteurs, le durcissement de la crise peut alors conduire à une situation qu'il est possible de qualifier de conflit constitutionnel. Le présent ouvrage recueille les Actes de la Journée d'études organisée à la Faculté de droit et de science politique de Rennes, le 28 novembre 2008, par le Laboratoire d'Etude du Droit Public de l'université de Rennes 1. (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)
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.
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)
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)
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)
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)
La correspondance de 1911 entre Dilthey et Husserl et, en 1925, les Conférences prononcées par Heidegger à Cassel portent sur la question de « l’historicité ». Elles permettent d’interroger la nature et les limites de l’inspiration diltheyenne de la phénoménologie dans le premier quart du XXe siècle. Interrompue par le décès de Dilthey, la correspondance de 1911 avec Husserl a pour arrière-plan leur rencontre de 1905.De leur côté, les Conférences de Cassel constituent le point culminant d’une réception qui avait contribué (...) à l’élaboration de l’herméneutique de la vie facticielle. Première ébauche d’Être et temps, elles invitent explicitement à répéter la question diltheyenne relative à l’histoire sur le sol de la phénoménologie, et Heidegger ira jusqu’à reconnaître à Dilthey le sens de la question de l’être.Cette réception de Dilthey par Husserl et Heidegger permet en retour de penser la spécificité d’une séquence phénoménologique de la pensée herméneutique allemande. (shrink)
J.-M. Pigeaud, « Du rythme dans le corps. Quelques notes sur l'interprétation du pouls par le médecin Hérophile. » In : Bulletin del'Association Guillaume Budé, n° 3, octobre 1978, pp. 258-267. La littérature sur le pouls a été très abondante ; elle est maintenant réservée à l'archéologie de la médecine ; les philologues et les historiens de la philosophie auraient intérêt à la consulter. Nous voudrions réfléchir quelque peu à la définition du pouls par Hérophile. Ce médecin fut sans doute (...) le premier à mesurer - Médecine – Nouvel article. (shrink)