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)

A diagnosis of Fetal Alcohol Spectrum Disorder ascribes cause to developmental disability; however, there are logical issues in causation with ethical implications. This article focuses on the use of fallacious logic in FASD, focusing on the Canadian Guidelines for diagnosis, and knowledge translation issues from science to practice. The clinician’s logical fallacy is an ethical issue of veracity in the clinician–patient relationship; this then leads to issues of nonmaleficence, because the diagnosis in turn blames the mother for her child’s difficulties. (...) Suggestions for revised diagnostic practices that avoid allusions to causation and responsibility are discussed. (shrink)

Postural instability in Parkinson’s disease (PD) is characterized by impaired postural responses to transient perturbations, increased postural sway in stance and difficulty transitioning between tasks. In addition, some studies suggest that loss of dopamine in the basal ganglia due to PD results in difficulty using proprioceptive information for motor control. Here, we quantify the ability of subjects with PD and age-matched control subjects to use and re-weight sensory information for postural control during steady-state conditions of continuous rotations of the stance (...) surface or visual surround. We measure the postural sway of subjects in response to a pseudorandom, surface-tilt stimulus with eyes closed, and in response to a pseudorandom, visual-tilt stimulus. We use a feedback control model of the postural control system to interpret our results, focusing on sensory weighting as a function of stimulus amplitude. We find that subjects with PD can re-weight their dependence upon sensory information in response to changes in surface- or visual-stimulus amplitude. Specifically, subjects with PD behaved like age-matched control subjects by decreasing proprioceptive contribution to stance control with increasing surface-tilt amplitude, and decreasing visual contribution with increasing visual-tilt amplitude. However, subjects with PD do not decrease their reliance on proprioception as much as age-matched controls for small increases in surface-stimulus amplitudes. Levodopa medication did not affect sensory re-weighting behaviors for postural control. The impairment in PD subject’s ability to respond differently to small changes in surface rotation amplitudes is consistent with an increased threshold for perceiving proprioceptive signals, which may result from decreased signal-to-noise in the dopaminergic pathways associated with sensory processing and/or sensory integration. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Eclecticism and the Technologies of Discernment in Pietist PedagogyKelly J. WhitmerWhile the Franckesche Stiftungen (the Francke Foundations) of Halle/Saale are perhaps best known today as the institutional centre of German Pietism, throughout much of the eighteenth century they were widely regarded as a pedagogically innovative Schulstadt (or city of schools). The founder of this Schulstadt, August Hermann Francke (1663–1727), was many things to many people: Pietist, radical Lutheran, theologian, (...) pedagogue, professor of Greek and Oriental languages, preacher, member of the Berlin Academy of Sciences and proponent of a Protestant mission. Like most participants in what was initially a grassroots movement oriented around the personality of Philipp Jakob Spener (1635–1705), a minister active in Frankfurt am Main around 1670 who sought to breathe new life into the Lutheran church,2 Francke rarely referred to himself as a Pietist. From his post at the University of Halle (founded in 1694), this Spenerian prote´gé set out to create a new "universal seminar" that would make the assimilation of many diverse points of view, identities, and competing strands of knowledge its [End Page 545] defining mandate. "My purpose," Francke wrote in a letter to a Pastor Ring from Grünebartau (October 29, 1712), "is to develop a universal institution, useful for bringing into a good and holy order all that is important for the Christianity of all orders of society and relates, in some way, to the healing power of the soul."3 His Schulstadt would "bring into order" a myriad of relationships around a single point and relied, quite deliberately I propose, on an eclectic methodology to do this.In recent years, the relationship of Francke's Schulstadt to the implementation of Brandenburg-Prussia's first compulsory schooling system and teacher training institutes has been better documented than in the past.4 Scholars of education have paid closer attention to the methodological innovations of Pietist pedagogy, and its points of convergence with the ideas of John Locke (1632–1704), Jean-Jacques Rousseau (1712–1778) and Johann Heinrich Pestalozzi (1746–1827) have become subjects of mounting interest.5 Francke's significance for the history of education has been assessed mainly in terms of his ability to realize the pedagogically inclined reform projects of seventeenth-century figures, such as Johann Amos Comenius (1592–1670).6 We know that the thousands of children who participated in the life of the Schulstadt very often left Halle to become actively involved as teachers and ministers throughout the German states. Several played pivotal roles in the development of the late eighteenth-century educational reform movement known as Philanthropismus and its associated practices and institutions.7 [End Page 546]Perhaps the most striking feature of Francke's Schulstadt was its curriculum, which featured innovative training regimens in applied mathematics for children from diverse social backgrounds.8 The scale and rigor of these programs were to be found nowhere else at the time and can be linked to the overtly pedagogical mandate of the Berlin Academy of Sciences (f. 1701). These regimens deliberately juxtaposed artisanal and learned knowledge and stressed the importance of the eye as a conciliatory medium.9 Despite having acquired largely anti-empiricist reputations over the years due to their lingering interest in alchemy and their roles in securing the banishment of the "rationalist" mathematician and philosopher, Christian Wolff (1679–1754), from their community in 1723, careful consideration of what Halle Pietists were teaching in their schools suggests a different view. These historical actors reconciled categories of knowledge production and transmission often framed as oppositional—despite what several scholars have recently shown to be their clear interconnectedness.10I argue here for the predominance of eclecticism in the Schulstadt, including a pronounced emphasis on the "middling" mathematical and mechanical sciences as tools of conciliation and self-improvement. I seek to illustrate how eclecticism was much more than a Philosophiebegriff that was well received by some Pietists, as Walter Sparn has argued, but that it is better understood as a set of conciliatory practices, traces of which resonate in Pietist lesson plans.11 Teachers in Francke's schools integrated experimental philosophy into an educational program that was introducing children to the exercises of... (shrink)

Alternative food networks are emerging in opposition to industrial food systems, but are criticized as being exclusive, since customers’ ability to patronize these market spaces is premised upon their ability to pay higher prices for what are considered the healthiest, freshest foods. In response, there is growing interest in widening the demographic profile given access to these alternative foods. This research asks: what barriers do alternative food businesses face in providing access and inclusion for low income consumers? Surveys and interviews (...) with 45 alternative food businesses in British Columbia, Canada uncovered five key barriers. The findings indicate that the barriers are symptomatic of structural issues in the Canadian food and social welfare systems. Although opportunities exist for business operators to widen access for low income shoppers, these alone cannot meaningfully ameliorate food-access inequality. Rather, these barriers underscore issues of income-disparity, poverty, and food-access inequality more broadly, and require structural and societal change to rectify. (shrink)

Previous research has demonstrated that reversing the contrast of the eye region, which includes the eyebrows, affects the N170 ERP. To selectively assess the impact of just the eyes, the present study evaluated the N170 in response to reversing contrast polarity of just the iris and sclera in upright and inverted face stimuli. Contrast reversal of the eyes increased the amplitude of the N170 for upright faces, but not for inverted faces, suggesting that the contrast of eyes is an important (...) contributor to the N170 ERP. (shrink)

There has been an explosion of interest in “innovation-oriented knowledge” and utility in early modern knowledge economies. Despite this, a healthy skepticism surrounding the category of “useful knowledge” persists, at least in part because of its association with intentional concealment. Helpful in many ways, this skepticism has fostered a tendency to overlook a variety of efforts to teach “useful knowledge” in the period: efforts that were anchored in engagement with the real and involved the cultivation of an ability to direct (...) the powers of the imagination. Indeed, for some the imagination served as a faculty central to an epistemology of use. This article takes as its example a handbook written by an early political economist who endeavored to teach readers how to imagine uses for things they observed in collections while traveling so they would be better prepared to participate in a new, transnational culture of innovation. (shrink)

ArgumentBy the year 1720, one could visit at least three large-scale wooden models of Solomon's Temple in the cities of Amsterdam, Hamburg, and Halle. For short periods of time, the Amsterdam and Hamburg Temple models were exhibited in London, where they attracted a great deal of attention. The Halle model, on the other hand, never moved from its original location: a complex of schools known today as the Francke Foundations (die Franckesche Stiftungen). This article explores the reasons for the Halle (...) model's striking immobility by considering its position at the center of a long-distance network, also referred to as the Danish-Halle mission. In this article I argue that the Halle Temple model functioned as an effigy and memory theater that helped proponents of this mission make a case for the Temple's status as the world's first information technology. Young people moved around the wooden model; they took virtual pilgrimages with it and internalized its infrastructure by memorizing its various components. The model's position at the center of the complex's striking ethnographical collection and curricula exposes relations between the Danish-Halle mission, Christian philosophy, and an irenical turn as public policy in early eighteenth-century Brandenburg-Prussia. (shrink)

This unique publication outlines the development of legal theory from pre-Roman times to the twentieth century. It aims to relate the evolution of legal theory to parallel developments in political history, and accordingly offers the reader an account of relevant contemporaneous political, religious, and economic events. Each chapter commences with a general historical background for the relevant period, and discusses how political events and political and legal theory are both related to one another and occasionally influence one another.No other English (...) publication aims to anchor legal theory to contemporary general history in this way, shunning the more conventional approach to legal theory via the study of 'traditions' or 'schools', and it is hoped that this study will provide a much-needed basic text for students of jurisprudence, legal theory and politics. (shrink)

Values are numerous, interrelated and hard to discern in professional practice. This article reports on key findings from research into locating professional values within health social work practice in Aotearoa New Zealand. The research explores how 15 health social workers experience and negotiate value demands when working with newborn infants. A staged methodology underpinned by constructivist grounded theory was utilised to generate theoretical knowledge through two phases of semi-structured individual interviews. The research firmly located health social workers practice in the (...) middle ground of a complex, tension-ridden practice environment with health social workers courageously striving to balance competing requirements. Within a health model influenced by neoliberal policy, key tensions related to challenges faced due to professionals oversimplifying social circumstances in risk-laden situations. This resulted in issues of judgements, bias and racism being a central concern for the participants’ social work practice. Despite these tensions, the place of social justice as a primary organising value was affirmed by the research. A stronger focus on the profession’s values would strengthen the collective voice of health social workers and their identity, in order to better address the systemic drivers of health inequities. (shrink)

Personal stories and concrete advice for how to make the transition from an academic career to the larger marketplace of careers from those who have successfully done it.

When researchers encounter preexisting psychological distress in participants, ethical codes provide little guidance on how to balance issues of beneficence and autonomy. Although researchers may inform participants what will occur given responses indicating distress, this information may lead to biased self-reports. This important issue was addressed in this study by manipulating consent form information regarding the type of psychopathology to be assessed and various levels of possible follow-up. In comparing responses on self-report measures of anxiety, depression, and general psychological distress, (...) men who believed depression was the focus of the study reported fewer symptoms of depression and less trait anxiety as intrusiveness of experimenter follow-up increased. These results are discussed within the framework of socialization theory. Given that half of the sample did not correctly answer questions regarding information contained in the consent form, guidelines to improve consent form comprehension are offered. (shrink)

This study argues for the historical existence of Jesus of Nazareth as a radical Jewish pacifist who angered both the orthodox religious establishment and those who advocated violent insurrection against the Romans. The author asserts that Jesus' views were based on belief in a non-retributive, omnibenevolent God, challenging not only the Mosaic Law but assumptions about eternal punishment and the divine sanction of the state and its retributive institutions of war and punishment. The volume also interprets Paul as being the (...) first Christian revisionist. As a result, orthodox Christianity, through the influence of Paul (and thus Augustine, Aquinas, Luther, and Calvin), has mistakenly promoted the "just war" and "divinely ordained state" doctrines in the name of a thinker whose conclusions were in the opposite direction. (shrink)

Using a three-dimensional ethical role-specific model, this article considers the dual loyalty conflict between following military orders and professional codes of practice in an operational military environment when a patient soldier refuses life-saving medical treatment and where their legal capacity is questionable. The article suggests that although every competent patient has the right to refuse medical treatment even though they may die as a consequence. Ordinarily, it is unethical to exert any undue influence on a patient to accept medical treatment, (...) in a military operational environment where attack from the enemy is likely, it may be reasonable and understandable to exert undue influence over a patient when they lack legal capacity. (shrink)