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)
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)
The General Data Protection Regulation (GDPR) was introduced in 2018 to harmonize data privacy and security laws across the European Union (EU). It applies to any organization collecting personal data in the EU. To date, service-level consent has been used as a proportionate approach for clinical trials, which implement low-risk, routine, service-wide interventions for which individual consent is considered inappropriate. In the context of public health research, GDPR now requires that individuals have the option to choose whether their data may (...) be used for research, which presents a challenge when consent has been given by the clinical service and not by individual service users. We report here on development of a pragmatic opt-out solution to this consent paradox in the context of a partner notification intervention trial in sexual health clinics in the UK. Our approach supports the individual’s right to withhold their data from trial analysis while routinely offering the same care to all patients. (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)
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)
Recent data show that human children (up to 8 years old) perform poorly when required to innovate tools. Our tool-rich culture may be more reliant on social learning and more limited by domain-general constraints such as ill-structured problem solving than otherwise thought.
In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both (...) distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19 . (shrink)
This paper responds to Dr Cassell's request for a fuller explanation of my argument in the paper, Against medical ethics: a philosopher's view. A distinction is made between two accounts of ethics in general, and the philosophical basis of health work ethics is briefly stated. The implications of applying this understanding of ethics to medical education are discussed.
This paper by Miles Little and colleagues identified the state they described as “liminal” within the trajectory of cancer survivorship. Since that time the concept of liminality has provided a powerful model to explore some of the difficulties experienced by people with severe and chronic illness. In this commentary I consider the expanding application of liminality not just to a widening range of medical conditions but to the consequences of therapeutic interventions as well and how this expansion has enriched and (...) challenged its use as a conceptual tool. (shrink)
This paper argues that the existence of a canon of established and privileged texts in the primary literacy curriculum in England can be traced historically and has informed current national policy and practice. This canonisation of a particular set of literature has served to marginalise popular cultural and media texts, often the preferred texts of children in contemporary society. The paper examines the historical development of an established, hegemonic body of texts and critically analyses current national curricula frameworks for primary (...) literacy in order to determine the way in which reading material is framed. It is argued that current national policy enshrines particular textual traditions at the expense of more popular forms of material and that this has major implications for the relevance of the future primary literacy curriculum. (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)
This article provides a critical comparative analysis of the substantive and procedural values and ethical concepts articulated in guidelines for allocating scarce resources in the COVID-19 pandemic. We identified 21 local and national guidelines written in English, Spanish, German and French; applicable to specific and identifiable jurisdictions; and providing guidance to clinicians for decision making when allocating critical care resources during the COVID-19 pandemic. US guidelines were not included, as these had recently been reviewed elsewhere. Information was extracted from each (...) guideline on: 1) the development process; 2) the presence and nature of ethical, medical and social criteria for allocating critical care resources; and 3) the membership of and decision-making procedure of any triage committees. Results of our analysis show the majority appealed primarily to consequentialist reasoning in making allocation decisions, tempered by a largely pluralistic approach to other substantive and procedural values and ethical concepts. Medical and social criteria included medical need, co-morbidities, prognosis, age, disability and other factors, with a focus on seemingly objective medical criteria. There was little or no guidance on how to reconcile competing criteria, and little attention to internal contradictions within individual guidelines. Our analysis reveals the challenges in developing sound ethical guidance for allocating scarce medical resources, highlighting problems in operationalising ethical concepts and principles, divergence between guidelines, unresolved contradictions within the same guideline, and use of naïve objectivism in employing widely used medical criteria for allocating ICU resources. (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)
Anesthesia research has focused on showing learning in the absence of awareness for good practical reasons. Crucially, continued learning during otherwise clinically adequate anesthesia may affect patients’ well-being on recovery. Theoretically, preserved perceptual priming during anesthesia offers a useful starting point for consciousness research by determining the limits of memory function during minimal consciousness. The big question for consciousness research is not to demonstrate absolutely unconscious processing, but rather to map out the cognitive and neurobiological processes that enable conscious experience (...) itself. (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)
This article explores what might constitute the good-enough reader of Maggie Nelson's The Argonauts. Prompted by Nelson's use of D.W. Winnicott's theory of the good-enough mother whose insufficiencies generate the infant's capacity to tolerate ordinary frustration and move beyond both idealizations and denigrations, I argue that the good-enough reader here would be the one who resists the temptation to idealize both the book and its author. This argument is presented as an attempt to open up some spaces for the discussion (...) of ambivalent responses to this book, beyond the rather deferential fandom that has characterized the psychic life of its reception. (shrink)
This paper describes a tool for assisting lawyers and paralegal teams during document review in eDiscovery. The tool combines a machine learning technology (CategoriX) and advanced multi-touch interface capable of not only addressing the usual cost, time and accuracy issues in document review, but also of facilitating the work of the review teams by capitalizing on the intelligence of the reviewers and enabling collaborative work.