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.

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.

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.

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)

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)

Because of historical mistreatment of ethnic minorities by research and medical institutions, it is particularly important for researchers to be mindful of ethical issues that arise when conducting research with ethnic minority populations. In this article, we focus on the ethical issues related to the inclusion of ethnic minorities in clinical trials of psychosocial treatments. We highlight 2 factors, skepticism and mistrust by ethnic minorities about research and current inequities in the mental health care system, that researchers should consider when (...) developing psychosocial interventions studies that include ethnic minorities. (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.

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)

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)

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)

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)

While sympathetic to Tilley’s call for a practical philosophy of religion, I raise three questions: Does Tilley think that one can do philosophy of religion from a position other than that of a committed believer? Does Tilley’s description of the ordinary believer disburden most people from doubt and answerability? Does Tilley’s description of the role of the theologian place too much trust in the theologian? I suggest that some insights from contemporary phenomenology and hermeneutics would lead to a clearer understanding (...) of the role that philosophy of religion can play in the development of a practical philosophy of religion. (shrink)

While sympathetic to Tilley’s call for a practical philosophy of religion, I raise three questions: Does Tilley think that one can do philosophy of religion from a position other than that of a committed believer? Does Tilley’s description of the ordinary believer disburden most people from doubt and answerability? Does Tilley’s description of the role of the theologian place too much trust in the theologian? I suggest that some insights from contemporary phenomenology and hermeneutics would lead to a clearer understanding (...) of the role that philosophy of religion can play in the development of a practical philosophy of religion. (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)

Cartesian Views is a fitting tribute to a man of many parts, to use Alison Wylie’s apt description . Richard A. Watson has provoked, evoked, and invoked new directions in Cartesian scholarship—both methodologically and substantively. Watson’s Downfall of Cartesianism and its sequel, The Breakdown of Metaphysics , have become required reading for students of early modern philosophy and are largely responsible for the revival of many “minor” Cartesians, while serving as sourcebook for methodological attention to history and rational reconstruction. Cartesian (...) Views is an important collection that hearkens a forty-year retrospective of Cartesian studies while simultaneously turning our sights to what lies in the future.Although an eclectic collection, each paper in the volume reflects some counterpoint to, advancement of, or commentary upon some aspect, claim, argument, or theme found in Watson’s philosophical works. The opening paper by Nadler questions Watson’s view that dualism and the problem of mind-body interaction was the central issue that stimulated. (shrink)

This thesis is an examination of Frege's logicism, and of a number of objections which are widely viewed as refutations of the logicist thesis. In the view offered here, logicism is designed to provide answers to two questions: that of the nature of arithmetical truth, and that of the source of arithmetical knowledge. ;The first objection dealt with here is the view that logicism is not an epistemologically significant thesis, due to the fact that the epistemological status of logic itself (...) is not well understood. I argue to the contrary that on Frege's conception of logic, logicism is of clear epistemological importance. ;The second objection examined is the claim that Godel's first incompleteness theorem falsifies logicism. I argue that the incompleteness theorem has no impact on logicism unless the logicist is compelled to hold that logic is recursively enumerable. I argue, further, that there is no reason to impose this requirement on logicism. ;The third objection concerns Russell's paradox. I argue that the paradox is devastating to Frege's conception of numbers, but not to his logicist project. I suggest that the appropriate course for a post-Fregean logicist to follow is one which divorces itself from Frege's platonism. ;The conclusion of this thesis is that logicism has of late been too easily dismissed. Though several critical aspects of Frege's logicism must be altered in light of recent results, the central Fregean thesis is still an important and promising view about the nature of arithmetic and arithmetical knowledge. (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)

A proof of pragmatism is proposed in Peirce's 1903 lecture series on Pragmatism as a Principle and Method of Right Thinking. It is necessary first to define what pragmatism is, a task for which a practitioner of the pragmatic maxim would be fitted, but which, however, must be highly problematic to a potential practitioner who does not yet know its full meaning. In order to clarify its meaning, Peirce uses a method he recommends for such conundrums in his 1891 article, (...) “The Architecture of Theories,” that is, “to make a systematic study of the conceptions out of which a philosophical theory may be built, in order to ascertain what place each conception may fitly occupy in such a theory and to what uses it is adapted”. Peirce's systematic study of the basis of logic and pragmatism in relation to it begins to appear around 1898 and peaks in 1903 when pragmatism's definition and role within the sciences is established in these lectures. (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)

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)

In lieu of an abstract, here is a brief excerpt of the content:The Truth Will Set You Free, or How a Troubled Philosophical Theory May Help to Understand How People Talk About Their AddictionPatricia A. Ross (bio)Keywordsveridicality of narrative, contingency of theories, belief-behavior, causal connectionConsider the following proposition: If one were to recognize the unsatisfactory implications of maintaining a certain theoretical position, one would thereby be motivated to accept a more adequate theory, which would alter one's beliefs and, in turn, (...) alter the behaviors that are based upon those beliefs. Faith in this proposition is what motivates many of us to teach. But, alas...Allison Mitchell's argument for rethinking addiction intervention—in particular, rethinking twelve-step programs—is premised on this proposition. According to her argument, addicts function with an impoverished sense of self that is reflective of a grossly simplified form of philosophical materialism. By recognizing the limitations of this philosophically unconvincing view, and by, in effect, accepting a better, more complete materialism, addicts can come to modify their self-conception. This modification is instrumental to recovery.A careful consideration of the chain of events being proposed, and the problems with it, is helpful for understanding the limitations of her argument. There are four points that I consider in turn: (1) considering narratives can tell us something about the self-conception of addicts, (2) philosophical materialism can help us to understand and explain something about an addict's self-conception and how it is inadequate, (3) this sense of self is distinct from nonusers and the way in which it is distinct helps to understand the problem of addiction, and (4) a change in self-conception with respect to materialism helps recovery and, thus, our best intervention is one based on having addicts accept a full materialist theory of the self and not a pretheoretic one. [End Page 227]With respect to the first point, it should be noted that Mitchell's overall argument does not depend on whether or not it is true that narratives of addiction tell us something veridical about the self-conception of addicts. Such narratives may simply provide us with a potential theory—a possible worlds scenario—of how addicts conceive of themselves. Mitchell points this out herself. The narratives and the interpretation that she provides of these narrative, "are meant only to highlight a certain pattern of self-expression and conception that may in fact be common in persons who use mind-altering substances; the readings do not establish any empirical matters of fact or philosophical truths, nor do they prove any conclusions about how such persons (must) express themselves or conceive their nature" (Mitchell 2006, 214).Thus, what the argument is actually concerned with are the theoretical claims about the self-conception of addicts that are garnered from these narratives. Nevertheless, because the narratives provide the starting point for Mitchell's argument, it is worth thinking carefully about the epistemic status of this body of literature. In particular, could a consideration of such literature lead us astray in our endeavors to understand how addicts might misconceive of themselves and, if so, in what way? What sort of epistemic status does this information hold?Mitchell is motivated by Wittgensteinian analyses of the relationship between thought and language. The particular idea that she employs from Wittgenstein is that every act of self-expression, whether it is verbal or written narrative, reveals something about the conceptual framework with which the author is working. Thus, one can learn about the author of a narrative—one can acquire a sense of how that individual conceives of him- or herself—by looking at the language that is employed to talk about and describe him- or herself.Mitchell enumerates some problems with this approach. She mentions that the author may fail to make his or her intended sense clear to readers; that the reader's narrative expectations determine the interpretation given to the narrative; that literary narrative may be less direct, less ordinary than everyday uses of language; and that interpreting such narrative via philosophical framework may ascribe to people positions that are more precise and sophisticated than they actually intend (p. 213).Aside from these quite serious problems, it is necessary to recognize... (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)

Richard C. Atkinson’s eight-year tenure as president of the University of California reflected the major issues facing California itself: the state’s emergence as the world’s leading knowledge-based economy and the rapidly expanding size and diversity of its population. As this selection of President Atkinson’s speeches and papers reveals, his administration was marked by innovative approaches that deliberately shaped U.C.’s role in this changing California. These writings tell the story of the national controversy over the SAT and Atkinson’s successful challenge to (...) the dominance of the seventy-five-year-old college entrance examination. They also highlight other issues with national significance: U.C.’s experiments with race-neutral admissions programs; the challenges facing academic libraries and the University’s pioneering activities with the California Digital Library; and the University’s involvement in new paradigms of industry-university research. Together, these speeches and papers open a window on an eventful period in the history of the nation’s leading public research university and the history of American higher education. (shrink)

In this essay, I attempt to solve the problem of the existence of evil in a world created by an omniscient, omnibenevolent, omnipotent God. I conclude that evil exists because God wanted to create moral creatures. Because choice is necessary for morality, God created creatures with enormous capacities for choice—and therefore enormous capacities for evil. Material creatures are subject to pain and death because, for such creatures, moral choices are deeply serious. The laws that underlie the material world and from (...) which material life arises are such that, from their workings out on a planet that can support life, natural evils happen. (shrink)

In Phylogenetic Systematics (1966), Willi Hennig conflates the Linnaean hierarchy with what Hennig refers to as the divisional hierarchy. In doing so, he lays the foundations of that school of biological taxonomy known as cladism on a philosophically ambiguous basis. This paper compares and contrasts the two hierarchies and demonstrates that Hennig conflates them. It shows that Hennig's followers also conflate them. Finally, it illuminates five persistent problems in cladism by suggesting that they arise from Hennig's original confusion.