The aims of this study were to measure the readability of Australian based informed consent documents and determine whether informed consent readability guidelines have been established by Australian human research ethics committees (HRECs). A total of 20 informed consent documents, 10 HIV/AIDS and 10 type 2 diabetes, were measured for readability using the Simple Measure of Gobbledygook (SMOG) and Gunning Fog Index (Fog). Published guidelines and policy statements of the two local HREC who approved the 20 clinical trials under study (...) where examined to identify whether they had any formal policies/guidelines on the readability of informed consent documents. The two HRECs were contacted via e-mail to also determine whether they utilised any informal readability standards or “rules of thumb” that may not have been mentioned in the published documents. The HIV/AIDS and type 2 diabetes informed consent documents were, on average, written at a grade 13 reading level. Formal readability standards had not been established by the two local HRECs, however, they did verify the use of informal rules for assessing readability of informed consent documents. Based on Australian literacy data, the majority of informed consent documents were written well beyond the reading ability of many Australians. Unreadable informed consent documents may result in patients rejecting trial participation altogether or conversely may result in their participating in a trial with inadequate consent. Therefore, a step toward reducing the complexity of informed consent documents may be to implement objective readability assessments into the human research ethics application and review process. (shrink)

Jacques Derrida returns relentlessly to the question of literature which is already a prominent concern in early texts such as Writing and Difference. The focus of this article is the conception of literature in ‘Literature in Secret: An Impossible Filiation’, in which Derrida discusses filiation with reference to Abraham and Isaac, the fundamental necessity of secrecy and the notion of the pardon. Above all, it is Kafka's Letter to His Father which perhaps provides a paradigm for defining literature. In this (...) specular address, the promise of a heritage is in the balance. Writing incessantly on Kafka, Maurice Blanchot also reflects on literature. The notion of literature put forward by Derrida in ‘Literature in Secret: An Impossible Filiation’ is considered in this article, as well as reflections by Blanchot, to show what might be at stake in Kafka's Letter to His Father. (shrink)

Writing and that which it entails are the subject of countless texts by Maurice Blanchot. In particular, Blanchot has focused on the notion of the work, or more precisely on a groundlessness or an absence of the work, which he has designated from different perspectives over the course of more than half a century. In various ways, Blanchot has conceived of the work as an affirmation of its undoing. The question of narration, often about a confrontation with death, is fundamentally (...) important, as is evident for example in Blanchot’s Death Sentence, The Madness of the Day or The Instant of My Death. In a sense, it is bound up with the possibility of the work. Writing about Henry James in “The Turn of the Screw” 2 in The Book to Come, Blanchot discusses narration. What is described is indeed a certain absence of the work relating to the writer’s difficult struggle to narrate everything. I will examine Blanchot’s reading of James to expose this conception of narration centred on seizing the truth. It is apparent that Blanchot approaches the question very differently in “Narrative Voice ,” in The Infinite Conversation in which there is a decentring of the work. 3 I will show that this text as well as certain writings by Derrida make it possible to arrive at a conception of narration in Henry James’s The Turn of the Screw which strongly contrasts with the one put forward by Blanchot in The Book to Come. Thus, alongside Blanchot’s reading of The Turn of the Screw which relates to the project of realising the work as a totality, Blanchot makes possible a more radical approach to the text, illustrating the non-totalization of the work whose borders are uncertain. In this way, Blanchot can be shown to step beyond an impossible conception of the absence of the work. (shrink)

At the beginning of Derrida's ‘Before the Law’, a reading of Kafka's story with that title, is an epigraph from Montaigne's Essays: ‘… science does likewise (and even our law, it is said, has legitimate fictions on which it bases the truth of its justice)…’. Derrida again refers to this quotation in ‘Force of Law’, asking what a ‘legitimate fiction’ might be and what it would mean to establish the basis for the truth of justice. With reference to these writings (...) on the status of narrative and the law, as well as to other texts by Derrida, this paper examines the story of the judge-penitent in Camus' The Fall and, in particular, this ironic reading of the aporetic experience of standing ‘before the law’. What does the narrative, The Fall, entail? Camus writes that the man who speaks in this text is involved in a ‘calculated confession’. How are the borders between truth and fiction, justice and the law, negotiated in this reckoning ‘before the law’? (shrink)

The Department of Health's Review of the Human Fertilisation and Embryology Act 1990 is a comprehensive public consultation on the regulation of the storage and use of gametes and embryos for fertility treatment and research in the UK. The consultation considers a range of issues, including the model and scope of regulation and proposals for a single body, the Regulatory Authority for Tissue and Embryos, to replace both the Human Fertilisation and Embryology Authority and the Human Tissue Authority by April (...) 2008. The Department of Health published its report on the consultation in March 2006, and this is discussed here in relation to both the support and criticisms of the model and scope of the current and proposed regulatory frameworks, particularly with regard to policy decision-making by bodies such as HFEA and RATE. (shrink)

The American Journal of Bioethics, Volume 11, Issue 12, Page 64-65, December 2011.

BackgroundThe phenomenon of ‘moral distress’ has continued to be a popular topic for nursing research. However, much of the scholarship has lacked conceptual clarity, and there is debate about what it means to experience moral distress. Moral distress remains an obscure concept to many clinical nurses, especially those outside of North America, and there is a lack of empirical research regarding its impact on nurses in the United Kingdom and its relevance to clinical practice.Research aimTo explore the concept of moral (...) distress in nursing both empirically and conceptually.MethodologyFeminist interpretive phenomenology was used to explore and analyse the experiences of critical care nurses at two acute care trauma hospitals in the United Kingdom. Empirical data were analysed using Van Manen’s six steps for data analysis.Ethical considerationsThe study was approved locally by the university ethics review committee and nationally by the Health Research Authority in the United Kingdom.FindingsThe empirical findings suggest that psychological distress can occur in response to a variety of moral events. The moral events identified as causing psychological distress in the participants’ narratives were moral tension, moral uncertainty, moral constraint, moral conflict and moral dilemmas.DiscussionWe suggest a new definition of moral distress which captures this broader range of moral events as legitimate causes of distress. We also suggest that moral distress can be sub-categroised according to the source of distress, for example, ‘moral-uncertainty distress’. We argue that this could aid in the development of interventions which attempt to address and mitigate moral distress.ConclusionThe empirical findings support the notion that narrow conceptions of moral distress fail to capture the real-life experiences of this group of critical care nurses. If these experiences resonate with other nurses and healthcare professionals, then it is likely that the definition needs to be broadened to recognise these experiences as ‘moral distress’. (shrink)

This study appeared in full in the last issue of Research Ethics Review : 18). Rowena Jones is an obstetrician working in a busy hospital for women. Her research focuses on changes in women's brains during pregnancy1. Rowena plans to use magnetic resonance imaging to record images of the brains of women in the second and third trimesters and after birth at 6 and 24 weeks. Her sample consists of two groups of healthy women with uncomplicated and singleton pregnancies, (...) the first primigravid and the second multiparous. There will be a minimum of five and a maximum of ten women in each group. (shrink)

Mitochondrial donation poses the latest regulatory challenge for policy-makers in the context of assisted conception. Since 2010 the Human Genetics Commission, the Human Fertilisation and Embryology Authority and the Nuffield Council on Bioethics have all considered the policy implications of permitting use of these techniques in treatment. The Nuffield Council on Bioethics reported its recommendations in June 2012 following a consultation on the ethical issues raised by these techniques; and a separate consultation by the Human Fertilisation and Embryology Authority in (...) conjunction with Sciencewise-ERC followed in September 2012. Matters for consideration included the potential relationships created by the use of three parties’ genetic material and the associated ramifications, eg whether or not there is a need to establish records of such donations and, if so, to whom should information later be provided? Thus, mitochondrial donation poses both novel and familiar questions about the ‘genetic family’, ‘parentage’ and ‘identity’. This article explores some of the ways in which mitochondrial DNA is constructed as relatively significant in recent Parliamentary debates, policy and consultation documents. It reflects on the ways in which the role of some genetic connections, or lack thereof, are mediated in law and policy. (shrink)

The ArgumentIt is often observed by historians of postwar American art that painters and sculptors of the 1960s sought a more mechanized “look” for their art. I argue that the changes reflected in the art have their source in a deeper shift – a shift at the level of production, expressed in new studio practices as well as in the space of the artworks themselves.In the period immediately before, during, and after World War II, the dominant topos of the American (...) artist was that of a solitary genius, alone in his studio, sole witness to the miraculous creation of his art. I demonstrate that artists of the 1960s, against this backdrop of heroic modernism, engaged in a different rhetoric and practice, one based on the models of industry and business. The studio of Andy Warhol, named the “Factory,” is viewed as apodictic of this great change, with its rudimentary assembly line and highly social mode of production.The change in practice instantiated in Warhol's Factory is significant in and of itself, but I argue further that it expressed itself in the “place of knowledge” – the space within Warhol's paintings and objects, and the newly social space in which they signify. The context for that signification thus becomes crucial to our understanding of the “Warhol phenomenon” celebrated in popular and arthistorical texts. The ambivalencies embedded in Warhol's Factory, where the artist's role oscillated between manager and proletarian worker, are seen as a function of their context. Conflicting signals are also broadcast by the works of art, which speak in the dialect of mass production with the accent of the irreplaceably unique. (shrink)

Experience offers a reading experience like no other. A heat-sensitive cover by Olafur Eliasson reveals words, colors, and a drawing when touched by human hands. Endpapers designed by Carsten Holler are printed in ink containing carefully calibrated quantities of the synthesized human pheromones estratetraenol and androstadienone, evoking the suggestibility of human desire. The margins and edges of the book are designed by Tauba Auerbach in complementary colors that create a dynamically shifting effect when the book is shifted or closed. When (...) the book is opened, bookmarks cascade from the center, emerging from spider web prints by Tomas Saraceno. Experience produces experience while bringing the concept itself into relief as an object of contemplation. The sensory experience of the book as a physical object resonates with the intellectual experience of the book as a container of ideas. Experience convenes a conversation with artists, musicians, philosophers, anthropologists, historians, and neuroscientists, each of whom explores aspects of sensorial and cultural realms of experience. The texts include new essays written for this volume and classic texts by such figures as William James and Michel Foucault -- Provided by the publisher. (shrink)

This book offers numerous questions and answers about ethics in counselling and therapy, training, counselling supervision, research and other important issues. The authors bring psychodynamic, person-centred, integrative or eclectic approaches to their selection of questions and answers. They also bring a variety of experience from independent practice, institutional and voluntary agency settings. Between them they have experience as counsellors, psychotherapists, trainers, counselling supervisors and authors. The questions cover a range of issues that practitioners need to consider including: confidentiality, constraints and (...) the management of confidentiality; boundaries, dual and multiple relationships, relationships with former clients; non-discriminatory practice, issues for individuals and agencies; competence and the proper conduct of counsellors and therapists and the profession's responsibilities to deliver non-exploitative and non-abusive help to clients. Questions of Ethics in Counselling and Therapy also contains three appendices offering useful information. It is written in a clear, accessible style and is aimed at a wide readership in counselling and therapy, ranging from trainees to more experienced practitioners. (shrink)

Most books about ethics focus either on the origins of ethics, or on the application of ethical thinking to a single form of therapy. This book sets out to span a range of very different forms of therapy and explores the similarities and the differences between the ethical thinking of the practitioners concerned. By looking at ethical issues in different therapeutic settings the reader is challenged to reconsider the working assumptions which underpin familiar therapeutic practice. Readers of Forms of Ethical (...) Thinking in Therapeutic Practice are offered the unique opportunity to gain insights into the ethical thinking of experienced practitioners offering strikingly different services to their clients and working in contrasting contexts. Essential reading for all practitioners in counselling and the therapies, students, trainers, supervisors and providers of therapeutic services. (shrink)

Caroline of Ansbach, wife of George II, occupied a crucial position in the public life of early 18th-century Britain. She was seen to exert considerable influence on the politics of the court and, as mother to the Hanoverian dynasty's next generation, she became an important emblem for the nation's political well-being. This paper examines how such emblematic significance was challenged and qualified when Caroline's body could no longer be portrayed as healthy and life giving. Using private memoirs and (...) correspondence from the time of her death in 1737, the paper explores the metaphorical potential of the queen's strangulated hernia, as well as the particular problems it posed for the public image of her dynasty. Through these investigations, the paper will comment upon the haphazard nature of public discussion in the early 18th century, and reveal the complex relationship between political speculation and medical diagnosis. (shrink)

This study examines the conflation of terms such as “knowledge” and “understanding” in peer-reviewed literature, and tests the hypothesis that little current research clearly distinguishes between importantly distinct epistemic states. Two sets of data are presented from papers published in the journal Public Understanding of Science. In the first set, the digital text analysis tool, Voyant, is used to analyze all papers published in 2014 for the use of epistemic success terms. In the second set of data, all papers published (...) in Public Understanding of Science from 2010–2015 are systematically analyzed to identify instances in which epistemic states are empirically measured. The results indicate that epistemic success terms are inconsistently defined, and that measurement of understanding, in particular, is rarely achieved in public understanding of science studies. We suggest that more diligent attention to measuring understanding, as opposed to mere knowledge, will increase efficacy of scientific outreach and communication efforts. (shrink)

Austerity, by its very nature, imposes constraints by limiting the options for action available to us because certain courses of action are too costly or insufficiently cost effective. In the context of healthcare, the constraints imposed by austerity come in various forms; ranging from the availability of certain treatments being reduced or withdrawn completely, to reductions in staffing that mean healthcare professionals must ration the time they make available to each patient. As austerity has taken hold, across the United Kingdom (...) and Europe, it is important to consider the wider effects of the constraints that it imposes in healthcare. Within this paper, we focus specifically on one theorised effect—moral distress. We differentiate between avoidable and unavoidable ethical challenges within healthcare and argue that austerity creates additional avoidable ethical problems that exacerbate clinicians’ moral distress. We suggest that moral resilience is a suitable response to clinician moral distress caused by unavoidable ethical challenges but additional responses are required to address those that are created due to austerity. We encourage clinicians to engage in critical resilience and activism to address problems created by austerity and we highlight the responsibility of institutions to support healthcare professionals in such challenging times. (shrink)

This book offers both the theoretical background behind the minority effect, teachers' personal experiences as they experienced being a minority, and their analyses and insights for teaching diverse learners. This book uses real-life experiences of diverse people to illustrate that, if not understood and addressed, situational minorities at school or work are unlikely to perform at their highest potentials.

This systematic review identifies and critically evaluates instruments that have been developed to measure clinical trial informed consent comprehension in non-cognitively-impaired adults. Literature searches were carried out on Medline, PsycInfo, CINHAL, ERIC, ScienceDirect, and Cochrane Library for English language articles published between January 1980 and September 2008. Instruments were excluded if they focused on consent onto paediatric trials, the construct under study was primarily capacity or competency, or the instrument was developed specifically for psychiatric or cognitively-impaired populations. Instruments selected for (...) review were evaluated against the following criteria: method of item generation; type and format of test items; administration and interpretation of test results; and psychometric properties. Three instruments met our defined inclusion criteria: the Deaconess Informed Consent Comprehension Test, the Quality of Informed Consent questionnaire and the Brief Informed Consent Protocol. Each instrument varied in terms of content measured. Significantly, these are the first standardized instruments developed to assess comprehension in non-cognitively-impaired adults. Yet, each instrument had its own set of limitations such as the lack of generalizability and the absence of details pertaining to how test results should be used to guide clinical decision-making. Standardized clinical trial informed consent comprehension assessments have been developed to identify gaps in research participants' understanding and ensure that respect for patient autonomy is satisfied. (shrink)

New books by Caroline Arscott and Mike Sanders return to the vexed problem of Marxism and aesthetics. For some time, there has been an intense suspicion of aesthetic thought in Marxist circles, where it is perceived as an ideology perpetrating a false resolution of contradictions. Arscott and Sanders understand aesthetics to be at the heart of the communist imagination: Arscott offers a detailed investigation of how the body is inhabited in the art of William Morris and Edward Burne-Jones; (...) Sanders considers the figure of the poet in Chartism as a spur to radicalism. Engaging with these books, this review calls for a Marxist reconsideration of aesthetic thought and artistic practice. (shrink)

Imagine a world without things. There would be nothing to describe, nothing to explain, remark, interpret, or complain about. Without things, we would stop speaking; we would become as mute as things are alleged to be. In nine original essays, internationally renowned historians of art and of science seek to understand how objects become charged with significance without losing their gritty materiality. True to the particularity of things, each of the essays singles out one object for close attention: a Bosch (...) drawing, the freestanding column, a Prussian island, soap bubbles, early photographs, glass flowers, Rorschach blots, newspaper clippings, paintings by Jackson Pollock. Each is revealed to be a node around which meanings accrete thickly. But not just any meanings: what these things are made of and how they are made shape what they can mean. Neither the pure texts of semiotics nor the brute objects of positivism, these things are saturated with cultural significance. Things become talkative when they fuse matter and meaning; they lapse into speechlessness when their matter and meanings no longer mesh. Each of the nine objects examined in this book had its historical moment, when the match of this thing to that thought seemed irresistible. At these junctures, certain things become objects of fascination, association, and endless consideration; they begin to talk. Things that talk fleetingly realize the dream of a perfect language, in which words and world merge.Essays Lorraine Daston, Peter Galison, Anke te Heesen, Caroline A. Jones, Joseph Leo Koerner, Antoine Picon, Simon Schaffer, Joel Snyder, and M. Norton and Elaine M. Wise. Lorraine Daston is Director at the Max Planck Institute for the History of Science in Berlin, Germany. She is the coauthor of Wonders and the Order of Nature, 1150-1750. (shrink)

Imagine a world without things. There would be nothing to describe, nothing to explain, remark, interpret, or complain about. Without things, we would stop speaking; we would become as mute as things are alleged to be. In nine original essays, internationally renowned historians of art and of science seek to understand how objects become charged with significance without losing their gritty materiality. True to the particularity of things, each of the essays singles out one object for close attention: a Bosch (...) drawing, the freestanding column, a Prussian island, soap bubbles, early photographs, glass flowers, Rorschach blots, newspaper clippings, paintings by Jackson Pollock. Each is revealed to be a node around which meanings accrete thickly. But not just any meanings: what these things are made of and how they are made shape what they can mean. Neither the pure texts of semiotics nor the brute objects of positivism, these things are saturated with cultural significance. Things become talkative when they fuse matter and meaning; they lapse into speechlessness when their matter and meanings no longer mesh. Each of the nine objects examined in this book had its historical moment, when the match of this thing to that thought seemed irresistible. At these junctures, certain things become objects of fascination, association, and endless consideration; they begin to talk. Things that talk fleetingly realize the dream of a perfect language, in which words and world merge.Essays Lorraine Daston, Peter Galison, Anke te Heesen, Caroline A. Jones, Joseph Leo Koerner, Antoine Picon, Simon Schaffer, Joel Snyder, and M. Norton and Elaine M. Wise. Lorraine Daston is Director at the Max Planck Institute for the History of Science in Berlin, Germany. She is the coauthor of Wonders and the Order of Nature, 1150-1750. (shrink)