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)

This is a fascinating book. It uses tuberculosis to look at the balance between individual liberty and the public good: the tensions created between personal liberty and social responsibility, a strong theme in all work in public health. The context is New York in the 1990s, but as Coker states, “This book uses the lens of tuberculosis control, and in particular the detention of non-infectious individuals, to examine America's response to its most vulnerable and marginalised citizens, and asks the question: (...) `is detention of non-infectious, non-compliant individuals right from ethical, legal, and public health perspectives'”. The book is divided into nine chapters. It …. (shrink)

A unifying theory of general anesthetic-induced unconsciousness must explain the common mechanism through which various anesthetic agents produce unconsciousness. Functional-brain-imaging data obtained from 11 volunteers during general anesthesia showed specific suppression of regional thalamic and midbrain reticular formation activity across two different commonly used volatile agents. These findings are discussed in relation to findings from sleep neurophysiology and the implications of this work for consciousness research. It is hypothesized that the essential common neurophysiologic mechanism underlying anesthetic-induced unconsciousness is, as with (...) sleep-induced unconsciousness, a hyperpolarization block of thalamocortical neurons. A model of anesthetic-induced unconsciousness is introduced to explain how the plethora of effects anesthetics have on cellular functioning ultimately all converge on a single neuroanatomic/neurophysiologic system, thus providing for a unitary physiologic theory of narcosis related to consciousness. (shrink)

Generalized anxiety disorder (GAD) and social phobia (SP) are major anxiety disorders identified by the Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV). They are comorbid, overlap in symptoms, yet present with distinct features (worry in GAD and fear of embarrassment in SP). Both have also been explained in terms of conditioning-based models. However, there is little reasoning currently to believe that GAD in adulthood reflects heightened conditionability or heightened threat processing—though patients with SP may show heightened processing (...) of social threat stimuli. Moreover, the computational architectures that maintain these disorders in adulthood are different. For GAD this may reflect the development of an inefficient “worrying” strategy of emotional regulation. For SP this appears to reflect the atypical processing of self-referential information. (shrink)

This article presents the new German law on advance directives from 1 September 2009. The history of the parliamentary process of this law is described, the present regulations are explained, their relevance for medical practice discussed and shortcomings are identified. Finally, the new law is compared with other regulations in the international context. Previously established legal practice in Germany has now become largely confirmed by the new law: An advanced directive must be respected in any decision concerning medical treatment, regardless (...) of the stage of the illness. It can be informally revoked at any time, even with limited decision-making capacity. Nobody may be obliged to issue a directive in any way. Advance directives do not need notarisation or routine updating after certain time intervals. Provided that the patient, who is no longer mentally competent, has issued a lasting power of attorney, or provided that the patient has been appointed a healthcare proxy by the courts, this authorised surrogate must assert the patient's will. The role of the guardianship court is clarified: it only needs to be involved in cases of disagreement as to the patient's will. The new German law thus combines more legal certainty with a liberal emphasis on patient autonomy and flexible, adaptable regulations. (shrink)

Theological schools are well situated to create intentional cultures for the purpose of spiritual formation. Indeed, most schools of theology have this goal as an essential part of their mission as well as a requirement for continued accreditation. And yet, the measurement of spiritual formation over time is fraught with challenges. This article seeks to address some of these challenges by means of developing a meta-theory of positive change/growth which would eventually serve as a theoretical basis for the development of (...) a generalizable and reliable measurement tool. (shrink)

In our pursuit of a good life (eubios), both individuals and societies, need to educate themselves on the pursuit of love of life in all domains, self-love, love of others, loving good and love of life. In this paper I reflect on my own journey through growing up in Christchurch, and experiences around the world, that are the basis for that conclusion. In our efforts to pursuit bioethics education we can enhance peaceful and harmonius coexistence in our world, through nurturing (...) good decisions that we should all make. (shrink)

The four short works in Untimely Meditations were published by Nietzsche between 1873 and 1876.They deal with such broad topics as the relationship between popular and genuine culture, strategies for cultural reform, the task of philosophy, the nature of education, and the relationship between art, science and life. They also include Nietzsche's earliest statement of his own understanding of human selfhood as a process of endlessly 'becoming who one is'. As Daniel Breazeale shows in his introduction to this new edition (...) of R. J. Hollingdale's translation of the essays, these four early texts are key documents for understanding the development of Nietzsche's thought and clearly anticipate many of the themes of his later writings. Nietzsche himself always cherished his Untimely Meditations and believed that they provide valuable evidence of his 'becoming and self-overcoming' and constitute a 'public pledge' concerning his own distinctive task as a philosopher. (shrink)

In this Introduction, Alexander and his work are outlined in its historical context with an account of his place in the history of philosophy. The background and motivation of the work is given along with a description of the organisation and content of the chapters that follow. Justification is also given for the inclusion of three posthumous papers by Alexander and how these posthumous papers relate to the newly commissioned essays.

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