Background: Clinical genomic implementation studies pose challenges for informed consent. Consent forms often include complex language and concepts, which can be a barrier to diverse enrollment, and these studies often blur traditional research-clinical boundaries. There is a move toward self-directed, web-based research enrollment, but more evidence is needed about how these enrollment approaches work in practice. In this study, we developed and evaluated a literacy-focused, web-based consent approach to support enrollment of diverse participants in an ongoing clinical genomic implementation study. (...) Methods: As part of the Cancer Health Assessments Reaching Many (CHARM) study, we developed a web-based consent approach that featured plain language, multimedia, and separate descriptions of clinical care and research activities. CHARM offered clinical exome sequencing to individuals at high risk of hereditary cancer. We interviewed CHARM participants about their reactions to the consent approach. We audio recorded, transcribed, and coded interviews using a deductively and inductively derived codebook. We reviewed coded excerpts as a team to identify overarching themes. Results: We conducted 32 interviews, including 12 (38%) in Spanish. Most (69%) enrolled without assistance from study staff, usually on a mobile phone. Those who completed enrollment in one day spent an average of 12 minutes on the consent portion. Interviewees found the information simple to read but comprehensive, were neutral to positive about the multimedia support, and identified increased access to testing in the study as the key difference from clinical care. Conclusions: This study showed that interviewees found our literacy-focused, web-based consent approach acceptable; did not distinguish the consent materials from other online study processes; and valued getting access to testing in the study. Overall, conducting empirical bioethics research in an ongoing clinical trial was useful to demonstrate the acceptability of our novel consent approach but posed practical challenges. (shrink)

Ever since Plato’s ‘Republic’ was written over two thousand years ago, one of the main concerns of social philosophy and later empirical social science was to understand the moral nature of human beings. The faculty to think and act in terms of overarching moral values is as much a defining hallmark of our species as is our intelligence, so _homo moralis_ is no less an appropriate term to describe humans as _homo sapiens_. This volume makes a case for the pivotal (...) role of social psychology as the core discipline for studying morality. The book is divided into four parts. First, the role of social psychological processes in moral values and judgments is discussed, followed by an analysis of the role of morality in interpersonal processes. The sometimes paradoxical, ironic effects of moral beliefs are described next, and in the final section the role of morality in collective and group behavior is considered. This book will be of interest to students and researchers in the social and behavioral sciences concerned with moral behavior, as well as professionals and practitioners in clinical, counseling, organizational, marketing and educational psychology where issues of ethics and morality are of importance. (shrink)

BackgroundHIV prevention research in resource-limited countries is associated with a variety of ethical dilemmas. Key amongst these is the question of what constitutes an appropriate standard of health care (SoC) for participants in HIV prevention trials. This paper describes a community-focused approach to develop a locally-appropriate SoC in the context of a phase III vaginal microbicide trial in Mwanza City, northwest Tanzania.MethodsA mobile community-based sexual and reproductive health service for women working as informal food vendors or in traditional and modern (...) bars, restaurants, hotels and guesthouses has been established in 10 city wards. Wards were divided into geographical clusters and community representatives elected at cluster and ward level. A city-level Community Advisory Committee (CAC) with representatives from each ward has been established. Workshops and community meetings at ward and city-level have explored project-related concerns using tools adapted from participatory learning and action techniques e.g. chapati diagrams, pair-wise ranking. Secondary stakeholders representing local public-sector and non-governmental health and social care providers have formed a trial Stakeholders' Advisory Group (SAG), which includes two CAC representatives.ResultsKey recommendations from participatory community workshops, CAC and SAG meetings conducted in the first year of the trial relate to the quality and range of clinic services provided at study clinics as well as broader standard of care issues. Recommendations have included streamlining clinic services to reduce waiting times, expanding services to include the children and spouses of participants and providing care for common local conditions such as malaria. Participants, community representatives and stakeholders felt there was an ethical obligation to ensure effective access to antiretroviral drugs and to provide supportive community-based care for women identified as HIV positive during the trial. This obligation includes ensuring sustainable, post-trial access to these services. Post-trial access to an effective vaginal microbicide was also felt to be a moral imperative.ConclusionParticipatory methodologies enabled effective partnerships between researchers, participant representatives and community stakeholders to be developed and facilitated local dialogue and consensus on what constitutes a locally-appropriate standard of care in the context of a vaginal microbicide trial in this setting.Trial registrationCurrent Controlled Trials ISRCTN64716212. (shrink)

Behavior, language, development, identity, and science—all of these phenomena are commonly characterized as 'social' in nature. But what does it mean to be 'social'? Is there any intrinsic 'mark' of the social shared by these phenomena? In the first book to shed light on this foundational question, twelve distinguished philosophers and social scientists from several disciplines debate the mark of the social. Their varied answers will be of interest to sociologists, anthropologists, philosophers, psychologists, and anyone interested in the theoretical foundations (...) of the social sciences. (shrink)

The contributors to The Moral of the Story, all preeminent political theorists, are unified by their concern with the instructive power of great literature. This thought-provoking combination of essays explores the polyvalent moral and political impact of classic world literatures on public ethics through the study of some of its major figures-including Shakespeare, Dante, Cervantes, Jane Austen, Henry James, Joseph Conrad, Robert Penn Warren, and Dostoevsky. Positing the uniqueness of literature's ability to promote dialogue on salient moral and intellectual (...) virtues, editor Henry T. Edmonson III has culled together a wide-ranging exploration of such fundamental concerns as the abuse of authority, the nature of good leadership, the significance of "middle class virtues" and the needs of adolescents. This collection reinvigorates the study of classic literature as an endeavor that is not only personally intellectually satisfying, but also an inimitable and unique way to enrich public discourse. (shrink)

Over 40 years of research have shown that traumatic brain injury affects brain volume. However, technical and practical limitations made it difficult to detect brain volume abnormalities in patients suffering from chronic effects of mild or moderate traumatic brain injury. This situation improved in 2006 with the FDA clearance of NeuroQuant®, a commercially available, computer-automated software program for measuring MRI brain volume in human subjects. More recent strides were made with the introduction of NeuroGage®, commercially available software that is based (...) on NeuroQuant® and extends its utility in several ways. Studies using these and similar methods have found that most patients with chronic mild or moderate traumatic brain injury have brain volume abnormalities, and several of these studies found—surprisingly—more abnormal enlargement than atrophy. More generally, 102 peer-reviewed studies have supported the reliability and validity of NeuroQuant® and NeuroGage®. Furthermore, this updated version of a previous review addresses whether NeuroQuant® and NeuroGage® meet the Daubert standard for admissibility in court. It concludes that NeuroQuant® and NeuroGage® meet the Daubert standard based on their reliability, validity, and objectivity. Due to the improvements in technology over the years, these brain volumetric techniques are practical and readily available for clinical or forensic use, and thus they are important tools for detecting signs of brain injury. (shrink)

Humanist sociologists are activists rooted in the reality of history and change and guided by a concern for the 'real life' problems of equality, peace, and social justice. They view people as active shapers of social life, capable of creating societies in which everyone's potential can unfold. Alfred McClung Lee introduces this volume with 'Sociology: Humanist and Scientific' and develops the theme that a sociology that is humanist is also scientific. The other nine selections are grouped into four parts: 'The (...) Individual and Social Life;' 'Social Institutions: Technology, Science, and Formal Organization;' 'Political Structures: Issues of Justice and Equality;' and 'Methodological Critiques and Counterproposals.'. (shrink)

Husserl's Original View on Phenomenological Psychology* JOSEPH J.KOCKELMANS Some forty years ago Edmund Husserl spoke publicly for the first time of a ...

"This fine work's ample documentation should gladden the scholarly reader while its accessible prose & well-organized presentation will make it useful for ...

Despite the supreme political and economic significance of boundaries--and ongoing challenges to existing national boundaries--scant attention has been paid to their ethics. This volume explores how diverse ethical traditions understand the political and property rights reflected in territorial and jurisdictional boundaries. It is the first book to bring together thinkers from a range of traditions, both religious and secular, to discuss the ethics of boundaries. Each contributor represents a tradition's views on questions surrounding the use of boundaries to delimit property (...) and political rights. What does it mean to own something? What resources should not be privately owned? What justifies the erection of political boundaries between one people and another? How ''hard'' should such boundaries be? What rights extend to minorities within a state? Should territorial boundaries coincide with social ones? Does national autonomy have an ethical basis, or is it an aspect of modern power politics? Should we aim for a more inclusive community than that afforded by modern nation-states? Cross-chapter dialogue and a substantive conclusion draw out similarities and differences among the traditions represented, traditions that include Christianity, classical liberalism, Confucianism, international law, Islam, Judaism, liberal egalitarianism, and natural law. In addition to the editors, the contributors are Nigel Biggar, Joseph Boyle, Joseph Chan, Russell Hardin, Will Kymlicka, Loren Lomasky, Robert McCorquodale, Richard B. Miller, David Novak, Sulayman Nyang, Michael Nylan, Raul C. Pangalangan, Daniel Philpott, Jeremy Rabkin, Hillel Steiner, M. Raquibuz Zaman, and Noam J. Zohar. (shrink)

This book was completed by the early 1960s and published in 1984 but it has not lost its topicality, for it contains an important re-assessment of the relations of two main streams of contemporary philosophy - the Analytical and the Dialectic. Adherents and critics of these traditions tend to assurnethat they are diametrically opposed, that their roots, concerns and approaches contradict each other, and that no reconciliation is possible. In contradistinction Russell derives both traditions from the common root of the (...) dissatisfaction with the arguments against speculative philosophy. These according to the author leave a lacuna - certain elementsof our Weltanschaaung have been removed, but they cannot be removed without replacement lest we have an incomplete world view, so incomplete in fact that it cannot be viable. According to Russell part of this vacuum is taken up by the analytical tradition but this tradition is not capable of taking up the remainder of it. That portion of the vacant space is however taken up by the dialectical tradi tion, which in turn cannot itself handle the whole of the problem. Thus the two reactions to the demise of speculative philosophy appear to be complementary in at least this sense. But the author goes further, for according to hirn the analytical arguments themselves clearly point to the emergence of dialectical problems, and the dialectical problems themselves need some such background to arise. (shrink)

In Heidegger's "Being and Time", the author locates the main themes of Heidegger's seminal work within their historical context and, in the process, familiarizes the reader with the terminology and background information relevant to understanding Heidegger's text. This study of what is arguably the greatest philosophical text of the century takes the ontological view of Heidegger's work. Here the author presents a precise formulation of the genuine problem of the meaning of Being, an explanation of the fact that Being is (...) for us problematic and should be so, and a precise determination and articulation of the mode of Being of man (using the hermeneutical and transcendental analytic of Dasein). Contents: I. The Preparatory Fundamental nalysis of Dasein II. Dasein and Temporality. Bibliography. Index. Co-published with The Center for Advanced Research in Phenomenology. (shrink)

Building upon an earlier critique of the Food and Drug Adminstration (FDA) granting of a humanitarian device exemption for deep brain stimulation in treatment-resistant obsessive compulsive disorder, this article considers how we regulate and finance DBS. It suggests that these devices are mosaic in nature: both potentially therapeutic and probative and that their dual roles need to be appreciated to maximize their therapeutic and investigational potential.

Emotional action and communication are integral to the development of morality, here conceptualized as our concerns for the well-being of other people and the ability to act on those concerns. Focusing on the second year of life, this article suggests a number of ways in which young children’s emotions and caregivers’ emotional communication contribute to early forms of helping, empathy, and learning about prohibitions. We argue for distinguishing between moral issues and other normative issues also in the study of early (...) moral development, for considering a wider range of emotional phenomena than the “moral emotions” most commonly studied, and for paying more attention to how specific characteristics of early emotional interactions facilitate children’s development of a concern for others. (shrink)

In this essay, the author reflects on a decade’s old essay on baseball and bioethics inspired by a conversation with the late David Thomasma. In a reprise of his earlier paper, Fins worries that modernity has come to baseball with the advent of the pitch clock and that this innovation brings age discrimination to a timeless pastime.

Emotion regulation is one of the major foci of study in the fields of emotion and emotional development. This article proposes that to properly study emotion regulation, one must consider not only an intrapersonal view of emotion, but a relational one as well. Defining properties of intrapersonal and relational approaches are spelled out, and implications drawn for how emotion regulation is conceptualized, how studies are designed, how findings are interpreted, and how generalizations are drawn. Most research to date has been (...) conducted from an intrapersonal perspective, and the shortcomings of this approach for understanding emotion regulation are highlighted. The article emphasizes major conceptual and methodological steps required for a fuller description of the process of emotion regulation. (shrink)

Although clinical ethics consultation is a high-stakes endeavor with an increasing prominence in health care systems, progress in developing standards for quality is challenging. In this article, we describe the results of a pilot project utilizing portfolios as an evaluation tool. We found that this approach is feasible and resulted in a reasonably wide distribution of scores among the 23 submitted portfolios that we evaluated. We discuss limitations and implications of these results, and suggest that this is a significant step (...) on the pathway to an eventual certification process for clinical ethics consultants. (shrink)

Edmund Husserl EDMUND GUSTAVE ALBRECHT HUSSERL was born in Prossnitz, Moravia, on April 8, 1859. After receiving his secondary education in Vienna, ...

In Edmund Husserl's Phenomenology, Joseph J. Kockelmans provides the reader with a biographical sketch and an overview of the salient features of Husserl's thought. Kockelmans focuses on the essay for the Encyclopedia Britannica of 1928, Husserl's most Important effort to articulate the aims of phenomenology for a more general audience. Included are Husserl's text -- in the original German and in English translation on facing pages -- a synopsis, and an extensive commentary that relates Husserl's work as a whole (...) to the essay for the Encyclopedia. (shrink)

As scholars envision a new regulatory or statutory neurorights schema it is important to imagine unintended consequences if reforms are implemented before their implications are fully understood. This paper critically evaluates provisions proposed for a new Chilean Constitution and evaluates this movement against efforts to improve the diagnosis of, and treatment for, individuals with disorders of consciousness within the broader context of disability law, international human rights, and a capabilities approach to health justice as advanced by Amartya Sen and Martha (...) Nussbaum. Framed in this way, any neurorights regime would need to satisfy several criteria. First it would be obliged to balance both positive and negative rights in the furtherance of human capabilities. Second, it would need to be future oriented and informed about the science it sought to regulate and not fall prey to science fiction fantasies that remain ungrounded in reality. Third, it would need to be specific and avoid generalizations that would lead to conceptual confusion and litigation that could delay scientific progress. Finally, it would need to harmonize novel neurorights with long-established norms in international disability and human rights law. A failure to meet these criteria will destine any novel neurorights regime to the periphery. At this juncture Chile’s nascent constitutional venture into neurorights fails to satisfy these criteria. While there yet may be a role for a more capacious and bivalent articulation of neurorights that account for capabilities and precedent, the current Chilean neurorights reforms are vague and premature. As such they should undergo additional scholarly scrutiny and should not be adopted by other jurisdictions. (shrink)

Many theories of complex cognitive-motor skill learning are built on the notion that basic cognitive processes group actions into easy-to-perform sequences. The present work examines predictions derived from laboratory-based studies of motor chunking and motor preparation using data collected from the real-time strategy video game StarCraft 2. We examined 996,163 action sequences in the telemetry data of 3,317 players across seven levels of skill. As predicted, the latency to the first action is delayed relative to the other actions in the (...) group. Other predictions, inspired by the memory drum theory of Henry and Rogers, received only weak support. (shrink)

: This paper presents a method of moral problem solving in clinical practice that is inspired by the philosophy of John Dewey. This method, called "clinical pragmatism," integrates clinical and ethical decision making. Clinical pragmatism focuses on the interpersonal processes of assessment and consensus formation as well as the ethical analysis of relevant moral considerations. The steps in this method are delineated and then illustrated through a detailed case study. The implications of clinical pragmatism for the use of principles in (...) moral problem solving are discussed. (shrink)

This breakthrough volume integrates European, British, and American scholarship in advanced areas of philosophy and decision theory. Contributions cover a broad area of economics--from criticism of institutional economics to examination of the role of induction in economic forecasting.

Jacques Rancière: An Introduction offers the first comprehensive introduction to the thought of one of today's most important and influential theorists. Joseph Tanke situates Rancière's distinctive approach against the backdrop of Continental philosophy and extends his insights into current discussions of art and politics. Tanke explains how Rancière's ideas allow us to understand art as having a deeper social role than is customarily assigned to it, as well as how political opposition can be revitalized. The book presents Rancière's body (...) of work as a coherent whole, tracing key notions such as the distribution of the sensible, the aesthetics of politics, and the supposition of equality from his earliest writings through to his most recent interventions. Tanke concludes with a series of critical questions for Rancière's work, indicating how contemporary thought might proceed after its encounter with him. The book provides readers new to Rancière with a clear overview of his enormous intellectual output. Engaging with many un-translated and unpublished sources, the book will also be of interest to Rancière's long-time readers. (shrink)

The application of neuroimaging technology to the study of the injured brain has transformed how neuroscientists understand disorders of consciousness, such as the vegetative and minimally conscious states, and deepened our understanding of mechanisms of recovery. This scientific progress, and its potential clinical translation, provides an opportunity for ethical reflection. It was against this scientific backdrop that we convened a conference of leading investigators in neuroimaging, disorders of consciousness and neuroethics. Our goal was to develop an ethical frame to move (...) these investigative techniques into mature clinical tools. This paper presents the recommendations and analysis of a Working Meeting on Ethics, Neuroimaging and Limited States of Consciousness held at Stanford University during June 2007. It represents an interdisciplinary approach to the challenges posed by the emerging use of neuroimaging technologies to describe and characterize disorders of consciousness. (shrink)

It has been said that a good book reads you. And so it is with John H. Evans's The History and Future of Bioethics: A Sociological View. As a physician-ethicist I was fascinated by this sociologica...

If ever I summon before me my highest ideals of men and medicine, I find them sprung from the spirit of Osler. —Wilder Penfield, M.D. Neuroethics is a recently coined term that is shaping our cultu...