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 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)

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 (Ovid), 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: (1) method of item generation; (2) type and format of test items; (3) administration and interpretation of test results; and (4) psychometric properties.Three instruments met our defined inclusion criteria: the Deaconess Informed Consent Comprehension Test (DICCT), the Quality of Informed Consent (QuIC) questionnaire and the Brief Informed Consent Protocol (BICEP). 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)

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)

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)

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)

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)