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.

Initiated by Robert Wesson, _Evolution and Human Values_ is a collection of newly written essays designed to bring interdisciplinary insight to that area of thought where human evolution intersects with human values. The disciplines brought to bear on the subject are diverse - philosophy, psychiatry, behavioral science, biology, anthropology, psychology, biochemistry, and sociology. Yet, as organized by co-editor Patricia A. Williams, the volume falls coherently into three related sections. Entitled Evolutionary Ethics, the first section brings contemporary research to an (...) area first explored by Herbert Spencer. Evolutionary ethics looks to the theory of evolution by natural selection to find values for human living. The second section, Evolved Ethics, discusses the evolution of language and religion and their impact on moral thought and feeling. Evolved ethics was partly Charles Darwin's subject in _The Descent of Man._ The last section bears the title Scientific Ethics. A nascent field, scientific ethics asks about the evolution of human nature and the implications of that nature for ethical theory and social policy. Together, the essays collected here provide important contemporary insights into what it is - and what it may be - to be human. (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.

WARD Joseph Joubert and the Critical Tradition Platonism and Romanticism LIBRAIRIE DROZ SA 11, rue Massot GENEVE 1980 ...

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)

In the field of bioethics, scholars have begun to consider carefully the impact of structural issues on global population health, including socioeconomic and political factors influencing the disproportionate burden of disease throughout the world. Human rights and social justice are key considerations for both population health and biomedical research. In this paper, I will briefly explore approaches to human rights in bioethics and review guidelines for ethical conduct in international health research, focusing specifically on health research conducted in resource-poor settings. (...) I will demonstrate the potential for addressing human rights considerations in international health research with special attention to the importance of collaborative partnerships, capacity building, and respect for cultural traditions. Strengthening professional knowledge about international research ethics increases awareness of ethical concerns associated with study design and informed consent among researchers working in resource-poor settings. But this is not enough. Technological and financial resources are also necessary to build capacity for local communities to ensure that research results are integrated into existing health systems. Problematic issues surrounding the application of ethical guidelines in resource-poor settings are embedded in social history, cultural context, and the global political economy. Resolving the moral complexities requires a commitment to engaged dialogue and action among investigators, funding agencies, policy makers, governmental institutions, and private industry. (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)

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)

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)

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 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)

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)

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)

This chapter contains sections titled: Introduction European Personalism American Personalism Conclusion Works cited.

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)

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)

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)

This paper considers the ethical implications of applying three major ethical theories to the memory structure of an artificial companion that might have different embodiments such as a physical robot or a graphical character on a hand-held device. We start by proposing an ethical memory model and then make use of an action-centric framework to evaluate its ethical implications. The case that we discuss is that of digital artefacts that autonomously record and store user data, where this data are used (...) as a resource for future interaction with users. (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)

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.

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)

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)