A medical information commons is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

Clinical next generation sequencing is a term that refers to a variety of technologies that permit rapid sequencing of large numbers of DNA segments, up to and including entire genomes. As an approach that is playing an increasingly important role in obtaining genetic information from patients, it may be viewed by public and private payers either positively, as an enabler of the promised benefits of personalized medicine, or as “the perfect storm” resulting from the confluence of high market demand, an (...) uproven technology, and an unprepared delivery system. A number of recent studies have noted that coverage and reimbursement will be critical for clinical integration of NGS, yet the evidentiary pathway for payer decision-making is unclear. Although there are multiple reasons for this uncertain reimbursement environment, the situation stems in large part from a long-standing lack of alignment between the information needs of regulators and post-regulatory decision-makers such as payers. (shrink)

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a “Medical Information Commons”. We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participants. Although most interviewees supported engagement, they distinguished between individual versus collective forms. They also noted challenges including representation and perceived inefficiency, prompting reflection on political aspects of engagement and efficiency concerns.

Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.

Human Specialization in Design and Technology explores emerging trends in learning and training-standardization, customization, personalization-with a unique focus on human needs and conditions. Analyzing evidence from current academic research as well as the popular press, this concise volume defines and examines the trajectory of instructional design and technologies toward more human-centered and specialized products, services, processes, environments, and systems. Examples from education, healthcare, business, and other sectors offer real-world demonstrations for scholars and graduate students of educational technology, instructional design, ICT, (...) and business development. (shrink)

This text provides a unique collection of case studies across a wide range of organizations (higher education, K-12 education, military, state and local government administration, non-profit institutions, and agency management, etc.). These cases examine ethical decision-making and organizational and leadership behavioral concepts that are practiced in these organizations. The cases cover topics facing our workforce today and ask the reader to solve the dilemma. Through a discussion of these cases, students apply decision making and organizational and leadership strategies to analyze (...) each case and therefore gain a better understanding of how to effectively lead and manage within their organizations. This text challenges students to think critically and analytically. Students are encouraged to reflect on options a practitioner could use to solve the problem. All of the cases end with an open scenario and a set of questions, allowing students to offer a wide range of opinions and participate in reflective and robust discussions. (shrink)

We describe and analyze 13 cases handled by our ethics consultation service (ECS) in which families requested continuation of physiological support for loved ones after death by neurological criteria (DNC) had been declared. These ethics consultations took place between 2005 and 2013. Patients’ ages ranged from 14 to 85. Continued mechanical ventilation was the focal intervention sought by all families. The ECS’s advice and recommendations generally promoted “reasonable accommodation” of the requests, balancing compassion for grieving families with other ethical and (...) moral concerns such as stewardship of resources, professional integrity, and moral distress. In cases we characterized as finitegoal accommodation, a “reasonable accommodation” strategy proved effective in balancing stakeholders’ interests and goals, enabling steady progress toward resolution. When a family objected outright to a declaration of DNC and asked for an indefinite accommodation, the “reasonable accommodation” approach offered clinicians little practical direction, and resolution required definitive action by either the family or the clinical team. Based on our analysis and reflections on these 13 cases, we propose ethically justified and practical guidelines to assist healthcare professionals, administrators, and ECSs faced with similar cases. (shrink)

Gottlob Frege famously rejects the methodology for consistency and independence proofs offered by David Hilbert in the latter's Foundations of Geometry. The present essay defends against recent criticism the view that this rejection turns on Frege's understanding of logical entailment, on which the entailment relation is sensitive to the contents of non-logical terminology. The goals are (a) to clarify further Frege's understanding of logic and of the role of conceptual analysis in logical investigation, and (b) to point out the extent (...) to which his understanding of logic differs importantly from that of the model-theoretic tradition that grows out of Hilbert's work. (shrink)

This paper examines the connection between model-theoretic truth and necessary truth. It is argued that though the model-theoretic truths of some standard languages are demonstrably ''''necessary'''' (in a precise sense), the widespread view of model-theoretic truth as providing a general guarantee of necessity is mistaken. Several arguments to the contrary are criticized.

This paper defends the view that Frege’s reduction of arithmetic to logic would, if successful, have shown that arithmetical knowledge is analytic in essentially Kant’s sense. It is argued, as against Paul Benacerraf, that Frege’s apparent acceptance of multiple reductions is compatible with this epistemological thesis. The importance of this defense is that (a) it clarifies the role of proof, definition, and analysis in Frege’s logicist works; and (b) it demonstrates that the Fregean style of reduction is a valuable tool (...) for those who would investigate the nature of arithmetical knowledge. (shrink)

Studies on informed consent to medical research conducted in low or middle-income settings have increased, including empirical investigations of consent to genetic research. We investigated voluntary participation and comprehension of informed consent among women involved in a genetic epidemiological study on breast cancer in an urban setting of Nigeria comparing women in the case and control groups.

Designing for culture through intelligent tutoring systems is on the rise. The needs of military personnel to communicate and understand cultures other than their own in deployments, missions, and work-related assignments have strongly encouraged the creation of culturally aware tutoring systems (CATS) that teach about other cultures. This paper critically analyzes three systems (i.e., ELECT-BiLAT, Tactical Iraqi, and VECTOR) and the frameworks that guided the design and development process. The examination reveals that there is a need for comprehensive guidelines to (...) build CATS. Therefore, the Culture Based Model is offered as a framework to guide the design of culture-based information and communication technologies. (shrink)

Abstract:This essay suggests that the word decolonial offers analytic power for feminist historians of women. As a category, it creates interpretive space for female experience beyond the elite/subaltern binary, where arguably most women live and work in the modern period. As a reading practice, the decolonial fosters intellectual awareness of social and intellectual practices that neither address the state, as in “anti-imperialism,” nor proffer counter nationalism or counter racialization as responses to coloniality. Offering examples from the archive, the media, and (...) teaching, this essay describes the decolonial as a productive site of women's agency in domains all too easily overlooked when historians focus on the conventional categories of state and nation. (shrink)

A comprehensive look at fictive letters in Greek literature from Homer to Philostratus, first published in 2001. It includes both embedded epistolary narratives in a variety of genres, and works consisting solely of letters, such as the pseudonymous letter collections and the invented letters of the Second Sophistic. The book challenges the notion that Ovid 'invented' the fictional letter form in his Heroides and considers a wealth of Greek antecedents for the later European epistolary novel tradition. Epistolary technique always problematizes (...) the boundaries between fictionality and reality. Based on a process of selection and self-censorship, the letter is a construction, not a reflection, of reality. The author bypasses the question of sincerity for a close look at epistolary self-representation, the function of the letter form and the nature of the relationship between writer and reader in a wide range of ancient Greek texts. (shrink)

. Current debates concerning the concept of mental disorder involve many different philosophical issues. However, it is not always clear from these discussions how, or whether, these issues relate to one another, or in exactly what way they are important for the definition of disorder. This article aims to sort through some of the philosophical issues that arise in the current literature and provide a clarification of how these issues are related to one another and whether they are necessary for (...) defining disorder. I argue that the main concern in defining disorder, namely demarcation, is obscured by a number of these other philosophical issues and that a focus on demarcation gives us a means of placing these other issues in a clarifying context. (shrink)

In 1785, George Washington described a “knowing farmer” as “one who can convert every thing he touches into manure, as the first transmutation towards Gold.” With these words, Washington linked the “knowing farmer” to the alchemist who endeavored to transform base metals into gold with the aid of a philosopher's stone. In each instance, the challenge was to convert raw materials into something new and precious.Today, the “knowing bioethicist” is in a similar position. American bioethics harbors a variety of ethical (...) methods that emphasize different ethical factors, including principles, circumstances, character, interpersonal needs, and personal meaning. Each method reflects an important aspect of ethical experience, adds to the others, and enriches the ethical imagination. (shrink)

In 1785, George Washington described a “knowing farmer” as “one who can convert every thing he touches into manure, as the first transmutation towards Gold.” With these words, Washington linked the “knowing farmer” to the alchemist who endeavored to transform base metals into gold with the aid of a philosopher's stone. In each instance, the challenge was to convert raw materials into something new and precious.Today, the “knowing bioethicist” is in a similar position. American bioethics harbors a variety of ethical (...) methods that emphasize different ethical factors, including principles, circumstances, character, interpersonal needs, and personal meaning. Each method reflects an important aspect of ethical experience, adds to the others, and enriches the ethical imagination. (shrink)

The theologies of the saints of Hans Urs Von Balthasar and Karl Rahner are grounded in the theologians' distinct articulations of the relationship between nature and grace, Rahner's shaped by his response to the Nouvelle Théologie and Von Balthasar's influenced by his engagement with Henri De Lubac and Karl Barth. It is a generalization, but one useful for drawing contrasts, that for Rahner the saints are mediators of the Mediator and that for Von Balthasar they are revealers of the Revealer. (...) While the theologies can be reconciled, a richer understanding of the function of saints can emerge by maintaining the contrasts. The symbolic capacity of saints in Rahner's thought and the saints' exemplary abandonment to personal mission in Von Balthasar's thought are each an emphasis valuable in communicating saints' instructional and efficacious presence for others in the ecclesial Body. (shrink)

Callimachus' Victoria Berenices has received a good deal of scholarly attention since its first publication in 1976, both from textual critics, attempting to clarify uncertain readings, and from specialists in Latin poetry, eager to trace allusions to Callimachus in Vergil, Statius, or Ovid. While the search for Callimachean influence on the later texts has proved quite fruitful, it opens up the possibility of reading certain issues inappropriately backwards into the Hellenistic material. The discovery of parallels may lead to an assumption (...) of complete agreement that misrepresents the earlier, more fragmentary text. I would like to consider one particular incident in the Victoria Berenices that has fallen prey to this fate, namely the reception of Heracles by the farmer Molorcus. (shrink)

Callimachus' Victoria Berenices has received a good deal of scholarly attention since its first publication in 1976, both from textual critics, attempting to clarify uncertain readings, and from specialists in Latin poetry, eager to trace allusions to Callimachus in Vergil, Statius, or Ovid. While the search for Callimachean influence on the later texts has proved quite fruitful, it opens up the possibility of reading certain issues inappropriately backwards into the Hellenistic material. The discovery of parallels may lead to an assumption (...) of complete agreement that misrepresents the earlier, more fragmentary text. I would like to consider one particular incident in the Victoria Berenices that has fallen prey to this fate, namely the reception of Heracles by the farmer Molorcus. (shrink)

Faculty in a large, urban school of engineering designed a longitudinal study to assess the critical thinking skills of undergraduate students as they progressed through the engineering program. The Paul-Elder critical thinking framework was used to design course assignments and develop a holistic assessment rubric. This paper presents the analysis of the freshman course artifacts (baseline and course critical thinking assignments) and associated faculty scoring sessions for all three cohorts. A total of 649 first semester freshman students at least 18 (...) years old agreed to participate in the study. The majority were white males with a mean high school grade point average of 3.73, ACT composite score of 28.33, and final freshman engineering course grade of 3.57. There was a statistically significant positive relationship between the freshman course artifacts and the faculty scores. Data from the study are being used to enhance the critical thinking experiences for undergraduate engineering students. (shrink)

Faculty in a large, urban school of engineering designed a longitudinal study to assess the critical thinking skills of undergraduate students as they progressed through the engineering program. The Paul-Elder critical thinking framework was used to design course assignments and develop a holistic assessment rubric. This paper presents the analysis of the freshman course artifacts (baseline and course critical thinking assignments) and associated faculty scoring sessions for all three cohorts. A total of 649 first semester freshman students at least 18 (...) years old agreed to participate in the study. The majority were white males with a mean high school grade point average of 3.73, ACT composite score of 28.33, and final freshman engineering course grade of 3.57. There was a statistically significant positive relationship between the freshman course artifacts and the faculty scores. Data from the study are being used to enhance the critical thinking experiences for undergraduate engineering students. (shrink)

The severe shortage of organs for transplantation and the continual reluctance of the public to voluntarily donate has prompted consideration of alternative strategies for organ procurement. This paper explores the development of market approaches for procuring human organs for transplantation and considers the social and moral implications of organ donation as both a gift of life and a commodity exchange. The problematic and paradoxical articulation of individual autonomy in relation to property rights and marketing human body parts is addressed. We (...) argue that beliefs about proprietorship over human body parts and the capacity to provide consent for organ donation are culturally constructed. We contend that the political and economic framework of biomedicine, in western and non-western nations, influences access to transplantation technology and shapes the form and development of specific market approaches. Finally, we suggest that marketing approaches for organ procurement are and will be negotiated within cultural parameters constrained by several factors: beliefs about the physical body and personhood, religious traditions, economic conditions, and the availability of technological resources. (shrink)

Much of the fascination that Petronius' Satyricon holds for its readers originates in the work's gleeful violation of traditional categories of classical genres. Critical terminology makes explicit the issue of unconventionality, as it is reduced to the neutral word ‘work’ in describing the Satyricon, which, as far as we can tell, belongs to no single category , but appropriates elements from many sources in both poetry and prose. Perhaps if we had more evidence with which to compare the work, such (...) as a greater selection of Menippean satire or proto-novels from antiquity, we might be able to identify it more accurately. But the suspicion remains that the intense variety of its evocations, allusions, and parodic passages differentiates it clearly from its component genres without allowing it to settle firmly in any one established genre. A certain amount of ‘Kreuzung der Gattungen’ is, of course, typical of both Alexandrian and consequently Roman texts. But the Satyricon seems to revel in its generic instability; it plays with the notion of ‘literariness’ by revealing impulses from non-literary forms such as mime and subliterary prose fiction, raising this material to an unfamiliar level of literary sophistication even as it debases other traditional genres through parodic techniques. One of the results of this open experimentation with style and decorum is an extremely dense fabric of literary allusion which some would label ‘literary opportunism’. The reader quickly learns to expect intertextual pyrotechnics, swift changes from the sublime to the ridiculous, and humorous incongruities in plot and form, as the stylistic disorder of the text reflects the topsyturvy Petronian world. The modern reader's response to this profusion of referents is to explore the recognizable categories and sources embedded in the work, to tease out the familiar elements in the hope of gaining a better understanding of the whole. Since a great deal of the allusion in the Satyricon functions parodically, there is yet another step necessary in the interpretation, namely taking into account the effect of the decontextualization of language and events from the source material and their recombination and transformation into the new text. (shrink)

The primary purpose behind effectiveness research is to determine whether a treatment with demonstrated efficacy has utility when administered to the general population. The main questions these studies are meant to answer are these: Can the typical patient respond to treatment? Is the treatment acceptable to the typical patient? Can the treatment be administered safely and in its entirety in the typical treatment setting? Is the treatment under study significantly better than the community standard of care both from a cost (...) and outcome perspective? Answering these questions is meant to provide sufficient information to providers and policymakers so that effective interventions can be adopted and become the new community standard. For this research to make a meaningful impact on a provider and policymaker's decision to change the status quo, study interventions should be compared to the existing community standard of treatment, often referred to as treatment as usual (TAU). From an ethical perspective, this decision may not always be the safest choice. In some populations, TAU may mean no treatment at all, and in others TAU may be worse than withholding treatment. The effectiveness researcher is then caught between the pull to do no harm and the need for research to have an impact on change. The purpose of this article is to highlight certain conditions when TAU is ethically acceptable and to discuss alternatives when TAU may be an unethical treatment condition. For purposes of precision, we focus exclusively on psychotherapy effectiveness research rather than system-intervention research or medication-intervention research. (shrink)