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.

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.

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.

Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.

Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research Consortium. The authors then (...) negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death. (shrink)

The analysis presented in this article reveals an ambiguity and tension in human rights theory concerning the delusional person’s freedom of belief and thought. Firstly, it would appear that the concepts ‘opinion’ and ‘thought’ are defined in human rights discussion in such a way that they do include delusions. Secondly, the internal freedom to hold opinions and thoughts is defined in human rights discussion and international human rights covenants as an absolute human right which should not be restricted in any (...) situation for any reason. These views, if understood literally, imply that a person has an absolute right to hold a delusion. However, this kind of conclusion has not been made in mental health laws, the ethical principles guiding psychiatric care or the practice of psychiatry. Instead, they assume that the use of involuntary antipsychotic medication is justified even thought its purpose is to influence delusions. The ambiguity and tension in human rights theory concerning the freedom of belief and thought challenge us to develop this theory within an interdisciplinary discussion so that people with delusions are taken into account properly. (shrink)

The analysis presented in this article reveals an ambiguity and tension in human rights theory concerning the delusional person’s freedom of belief and thought. Firstly, it would appear that the concepts ‘opinion’ and ‘thought’ are defined in human rights discussion in such a way that they do include delusions. Secondly, the internal freedom to hold opinions and thoughts is defined in human rights discussion and international human rights covenants as an absolute human right which should not be restricted in any (...) situation for any reason. These views, if understood literally, imply that a person has an absolute right to hold a delusion. However, this kind of conclusion has not been made in mental health laws, the ethical principles guiding psychiatric care or the practice of psychiatry. Instead, they assume that the use of involuntary antipsychotic medication is justified even thought its purpose is to influence delusions. The ambiguity and tension in human rights theory concerning the freedom of belief and thought challenge us to develop this theory within an interdisciplinary discussion so that people with delusions are taken into account properly. (shrink)

My note on McShane's “Implementation” article indicates what I have learned from it (a) about its author, (b) about Lonergan, and (c) about implementation of Lonergan’s transcendental method. My sheaf of quotations from the article may offer a focus – not distorting, I hope – different from the reader’s own.

Bullying often results in negative coping in victims, including an increased consumption of alcohol. Recently, however, an increase in alcohol use has also been reported among perpetrators of bullying. The factors triggering this pattern are still unclear. We investigated the role of empathy in the interaction between bullying and alcohol use in an adolescent sample (IMAGEN) at age 13.97 (±0.53) years (baseline (BL), N = 2165, 50.9% female) and age 16.51 (±0.61) years (follow-up 1 (FU1), N = 1185, 54.9% female). (...) General empathic distress served as a significant moderator of alcohol use in perpetrators (F9, 493 = 17.978, p < 0.01), which was specific for males and FU1. Male perpetrators, who are generally less sensitive to distress, might thus be more vulnerable to alcohol abuse. (shrink)

What role did Humanism play in the emergence of English Protestantism? This question has remained a live issue for Reformation scholarship over the past four centuries. In The Ark, the Covenant, and the Poor Men's Chest, the author examines the issue in detail, utilizing categories drawn from the research of John W. O'Malley on the application of different modes of classical rhetoric to biblical interpretation during the Renaissance. Anyone interested in either the revival of classical learning during the Renaissance (...) or the religious upheaval of the English Reformation will benefit from reading this work. The book's focus on primary sources from the sixteenth century and the best insights from recent secondary scholarship yields insights that will be of great interest to specialists in the field of Renaissance and Reformation studies. The inclusion of a timeline of major events, a biographical index of major figures, and a glossary of theological terms make this work accessible and helpful for students with varying degrees of familiarity with early modern England. Comparing the exegetical writings of Erasmus and John Colet, the author illustrates the key differences between Erasmian and Italian Humanism. Erasmus' reliance upon deliberative oratory for the explication of scripture, and his preoccupation with a Platonic philosophia Christi, result in an oracular Christology, focused narrowly on the speech of Jesus. By contrast, Italian Humanism relies upon epideictic rhetoric, and yields a portrait of Christ that highlights the deeds of the Messiah and the paschal dimensions of His salvific work, as seen in the writings of John Colet. These divergent patterns of biblical interpretation are also characteristic of the writings of the two bishops of London during the Reformation, Edmund Bonner, and Nicholas Ridley. Their contrasting approaches to scriptural interpretation suggest that opting for either Italian or Erasmian Humanism may have been decisive, both for Ridley's Protestantism and Bonner's Catholicism. (shrink)

[1] The phenomenology of Edmund Husserl -- The existential philosophy of Albert Camus -- The existenz philosophy of Karl Jaspers -- The philosophy of Gabriel Marcel -- The philosophy of Martin Heidegger -- v. 2. The existential philosophy of Søren Kierkegaard -- The existential philosophy of Ortega y Gasset -- The philosophy of Martin Buber -- The existential philosophy of Nicolas Berdyaev -- The philosophy of Paul Ricoeur.

An Inquiry into the first principles of morals and justice: This book restores to us an understanding that was once settled in the 'moral sciences': that there are propositions, in morals and law, which are not only true but which cannot be ...

In the years 1961-1972 Marie-Thirhse d'Alverny published in "Archives d'Histoire Doctrinale et Littiraire du Moyen Age 11 fascicles of a study of the codicological tradition of the Latin Avicenna. In these she identifies and describes more than 150 Latin manuscripts of the Avicennan corpus preserved in European libraries, thus laying the foundation for work later published in the "Avicenna Latinus series. These fascicles are photomechanically reprinted here, together with hitherto unpublished material concerning another 30 manuscripts compiled from Professor d'Alverny's papers (...) by Simone van Riet and Pierre Jodogne. The compilers have also added a list of corrigenda as well as an index of manuscripts discussed and an index of names and works. (shrink)

The city of Cincinnati, we know, can be an engaging place, but federal judge Arthur Spiegel also found, in the mid-'90s, that it could be quite a vexing place. The city council of Cincinnati had passed what was called the Human Rights Ordinance of 1992, which barred virtually all species of discriminationAppalachian origin.sexual orientation.minority status” in the law. The framers of the amendment objected to the tendency to treat gays and lesbians on the same plane as groups that have suffered (...) discrimination based on race, religion, or gender. The proposal, known as Issue 3, drew wide support and passed in a referendum in 1993. It was, of course, challenged in the courts, which is why it found its way into the hands of Judge Spiegel. (shrink)

In the Philippines, all transplant centers are mandated by the Department of Health (DOH) to have a Hospital Transplant Ethics Committee (HTEC) to ensure that donations are altruistic, voluntary and free of coercion/commercial transactions. This study was undertaken primarily to describe the organizational and functional profile of existing HTECs and identify areas for improvement. This is a descriptive cross‐sectional study. There was variation in their logistical arrangements (support from hospital, filing systems, office spaces), operations (length and frequency of meetings, number (...) of referrals) and membership (composition, qualifications, occupation, training). The approval rate for donor‐recipient pairs is high with the majority of cases made by living non‐related donors. Appropriate reasons were cited for rejection. The perception of HTECs is that they are competent and confident in their decision‐making. However, there is a need to standardize HTEC composition, provide operating procedures and additional training which can be done by the DOH. (shrink)

Cosmopolitics, the concept of a world politics based on shared democratic values, is in an increasingly fragile state.

For James Schall, revelation becomes open to us, on the most important questions that revelation can address, when it is opened by people who “study politics,” as Samuel Johnson had it. For Plato, the best city, the best political order, was spun out in the world of speech. It is not a place we expect to inhabit. But Plato had Socrates say at the end of the Republic that, whether this City exists anywhere or not, it is the only city (...) in which the thoughtful man would wish to take part. But even so, as Schall says, revelation alerts us to the possibility that our true home will really be elsewhere. (shrink)

The flaws in social psychological research pointed out by Cesario have societal costs. These include ignoring crucial base rates thereby degrading the effectiveness of policy decisions, generalizing the conclusions derived from experiments on non-professionals thereby distorting the public's view of professional law enforcement personnel, questionable accusations of racism, and mis-attributions of the causes of racial differences in behavior.

"Charming, interesting, thought-provoking and a great read." Rosalind Hursthouse The daughter of a pacifist rector who answered "No!" when his congregation asked him "Is everything in the bible true?", perhaps Mary Midgley was destined to become a philosopher. Yet few would have thought this inquisitive, untidy, nature-loving child would become "one of the sharpest critical pens in the west." This is her remarkable story. Probably the only philosopher to have been in Vienna on the eve of its invasion by (...) Nazi Germany in 1938 and dance in Trafalgar Square on VE day seven year later, she studied philosophy at Oxford in the same year as Iris Murdoch, Elizabeth Anscombe and Philippa Foot, all of whom became close friends. Midgley tells us in vivid and humorous fashion how they cut a swathe through the arid landscape of 1950s British philosophy, writing and arguing - often with each other - about the grand themes of character, beauty and the meaning of rudeness while the spectral figure of Ludwig Wittgenstein hovered in the background. She also charts the highs and lows of philosophy and academia in Britain. On joining the Reading philosophy department on £400 a year in 1949, she doubled its staff complement. But her many years at Newcastle University - where Mike Brearley, who later captained England at cricket, also used to teach - were rewarded with the closure of the philosophy department in the 1980s. The mother of three children, her journey is also one of a woman who in the 1950s and 1960s was fighting to combine a professional career with raising a family. In startling contrast to many of the academic stars of her generation, we learn that Midgley nearly became a novelist and started writing philosophy only when in her fifties, suggesting that Minerva's owl really does fly at dusk. Plainly told like her philosophy, this is an elegiac and moving account of friendships found and lost, bitter philosophical battles and of a profound love of teaching all too rarely acknowledged today. (shrink)

After reestablishing the connection between morality and the law, the author develops a coherent position on many of the most controversial issues of urban life: the political uses of the streets; verbal assaults and the defamation of racial groups; the legitimate restriction of public speech; segregation, busing, and the use of racial quotas; education, housing, and the problem of the ghetto"; prostitution, gambling, and the "regulation of vices." Originally published in 1981. The Princeton Legacy Library uses the latest print-on-demand technology (...) to again make available previously out-of-print books from the distinguished backlist of Princeton University Press. These paperback editions preserve the original texts of these important books while presenting them in durable paperback editions. The goal of the Princeton Legacy Library is to vastly increase access to the rich scholarly heritage found in the thousands of books published by Princeton University Press since its founding in 1905. (shrink)

"Dialogue" is one of American religion's shopworn terms. Although we hear much talk about dialogue, very little of it actually takes place. Religious discourse - especially about politics and public affairs - is increasingly polarized, involving much contestation but little conversation. If truth are to be tested, however, there is no substitute for dialogue.

The psychological and neurobiological processes underlying moral judgement have been the focus of many recent empirical studies1–11. Of central interest is whether emotions play a causal role in moral judgement, and, in parallel, how emotion-related areas of the brain contribute to moral judgement. Here we show that six patients with focal bilateral damage to the ventromedial prefrontal cortex (VMPC), a brain region necessary for the normal generation of emotions and, in particular, social emotions12–14, produce an abnor- mally ‘utilitarian’ pattern of (...) judgements on moral dilemmas that pit compelling considerations of aggregate welfare against highly emotionally aversive behaviours (for example, having to sacrifice one person’s life to save a number of other lives)7,8. In contrast, the VMPC patients’ judgements were normal in other classes of moral dilemmas. These findings indicate that, for a selective set of moral dilemmas, the VMPC is critical for normal judgements of right and wrong. The findings support a necessary role for emotion in the generation of those judgements. (shrink)

Psychologists have emphasized children's acquisition of information through firsthand observation. However, many beliefs are acquired from others' testimony. In two experiments, most 4yearolds displayed sceptical trust in testimony. Having heard informants' accurate or inaccurate testimony, they anticipated that informants would continue to display such differential accuracy and they trusted the hitherto reliable informant. Yet they ignored the testimony of the reliable informant if it conflicted with what they themselves had seen. By contrast, threeyearolds were less selective in trusting a reliable (...) informant. Thus, young children check testimony against their own experience and increasingly recognise that some informants are more trustworthy than others. (shrink)

According to a simple form of consequentialism, we should base decision on our judgments about their consequences for achieving out goals. Our goals give us reason to endorse consequentialism as a standard of decision making. Alternative standards invariably lead to consequences that are less good in this sense. Yet some people knowingly follow decision rules that violate consequentialism. For example, they prefer harmful omissions to less harmful acts, they favor the status quo over alternatives they would otherwise judge to be (...) better, they provide third-party compensation on the basis of the cause of an injury rather than the benefit from the compensation, they ignore deterrent effects in decisions about punishment, and they resist coercive reforms they judge to be beneficial. I suggest that nonconsequentialist principles arise from overgeneralizing rules that are consistent with consequentialism in a limited set of cases. Commitment to such rules is detached from their original purposes. The existence of such nonconsequentialist decision biases has implications for philosophical and experimental methodology, the relation between psychology and public policy, and education. (shrink)

A basic assumption in current western medicine is that good healthcare involves informed choices. Indeed, making informed choices is not only viewed as “good practice” but a right to which each individual is entitled, a perspective only recently developed in the medical field.Moreover, in the case of ethical decisions, much of the discussion on the role of the family is cast within the autonomy paradigm of contemporary bioethics; that is, family members provide emotional support but do not make decisions for (...) the competent adult patient. The family Is uniformly viewed as an Important proxy decision maker for incompetent patients; but most bioethicists would eschew any decision-making role for the family of mentally competent adult patients. Underlying the discussion of autonomy is the basic assumption in western medicine that good healthcare Involves choices by Informed individuals. (shrink)

What is the nature of children's trust in testimony? Is it based primarily on evidential correlations between statements and facts, as stated by Hume, or does it derive from an interest in the trustworthiness of particular speakers? In this essay, we explore these questions in an effort to understand the developmental course and cognitive bases of children's extensive reliance on testimony. Recent work shows that, from an early age, children monitor the reliability of particular informants, differentiate between those who make (...) true and false claims and keep that differential accuracy in mind when evaluating new information from these people. We argue that this selective trust is likely to involve the mentalistic appraisal of speakers rather than surface generalizations of their behavior. Finally, we review the significance of children's deference to adult authority on issues of naming and categorization. In addition to challenging a purely inductive account of trust, these and other findings reflect a potentially rich set of tools brought by children to the task of learning from people's testimony. (shrink)

Cultural difference has been largely ignored within bioethics, particularly within the end-of-life discourses and practices that have developed over the past two decades in the U.S. healthcare system. Yet how should culturebe taken into account?

Can there be a global demos? The current debate about this topic is divided between two opposing camps: the “pessimist” or “impossibilist” camp, which holds that the emergence of a global demos is either conceptually or empirically impossible, and the “optimist” or “possibilist” camp, which holds that the emergence of a global demos is conceptually as well as empirically possible and an embryonic version of it already exists. However, the two camps agree neither on a common working definition of a (...) global demos, nor on the relevant empirical facts, so it is difficult to reconcile their conflicting outlooks. We seek to move the debate beyond this stalemate. We argue that existing conceptions of a demos are ill-suited for capturing what kind of a global demos is needed to facilitate good global governance, and we propose a new conception of a demos that is better suited for this purpose. We suggest that some of the most prominent conceptions of a demos have focused too much on who the members of a demos are and too little on what functional characteristics the demos must have in order to perform its role in facilitating governance within the relevant domain. Our new proposal shifts the emphasis from the first, “compositional” question to the second, “performative” one, and provides a more “agency-based” account of a global demos. The key criterion that a collection of individuals must meet in order to qualify as a demos is that it is not merely demarcated by an appropriate membership criterion, but that it can be organized, democratically, so as to function as a state-like agent. Compared to the existing, predominantly “compositional” approaches to thinking about the demos, this agency-based approach puts us into a much better position to assess the empirical prospects for the emergence of a global demos that can facilitate good global governance. (shrink)

Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual’s genome can implicate an exponential number of relatives at potential risk. This has renewed the dilemma over family access to research participant’s genetic results, since prevailing US practices treat these as private, controlled by the individual. These individual-based ethics contrast with the family-based ethics – in which genetic information, privacy, and autonomy are considered to be familial – (...) endorsed in UK genomic medicine and by participants in a multi-method study of US research participants presented here. The dilemma reflects a conflict between US legal and ethical frameworks that privilege “the individual” and exclude “the family” versus actual human genetics that are simultaneously individual and familial. Can human genetics succeed in challenging bioethics’ hegemonic individualism to recognize and place the family at the center of the room where bioethics happens? (shrink)

This book is a comprehensive and unique text and reference in medical ethics. By far the most inclusive set of primary documents and articles in the field ever published, it contains over 100 selections. Virtually all pieces appear in their entirety, and a significant number would be difficult to obtain elsewhere. The volume draws upon the literature of history, medicine, philosophical and religious ethics, economics, and sociology. A wide range of topics and issues are covered, such as law and medicine, (...) truth-telling by the physician, research, population policy, genetics, abortion, dying, and individual rights in medical care. The selections span the centuries, beginning with material from the works of Hippocrates, continuing through Thomas Percival, John Stuart Mill, and Claude Bernard, down to modern commentators like Henry K. Beecher, Walsh McDermott, David L. Bazelon, Paul Freund, H. L. A. Hart, John Rawls, Paul Ramsey, Richard McCormick, Rashi Fein, and Bernard Barber. The text has eight major divisions, beginning with sections on the ethical dimensions of the physician-patient relationship in history; the moral bases of medical ethics; and regulation, compulsion, and protection of the consumer in clinical medicine and public health. Each of these sections includes key essays that appear for the first time. All of the book's major divisions contain primary documents: codes such as the Hippocratic Oath, Medieval Law for the Regulation of Medicine, and the first as well as the most recent code of the American Medical Association; court decisions, including those on Karen Quinlan and on abortion in the United States and West Germany; government documents such as the statement of the National Commission on the Protection of Human Subjects, the Tuskegee Syphilis Report, the British Parliamentary debate on euthanasia, and the Council of Europe on rights of the sick and dying; and various published guidelines such as the Harvard Medical School brain death criteria, the American Hospital Association on patient's rights, and Pope Pius XII on the prolongation of life. Cases that illustrate moral dilemmas are provided for discussion purposes. Each section is preceded by a succinct editor's introduction. The documents and essays are of practical value for practitioners and students in medicine, law, ethics, and counselling, and for individual patients and groups concerned with medical care. Through encompassing divergent viewpoints, the essays and primary documents were selected to encourage humane practices and deepen understanding of the multiple traditions that shaped and do shape the development of medicine. (shrink)

How is hope to be found amid the ethical and political dilemmas of modern life? Writer and philosopher Mary Zournazi brought her questions to some of the most thoughtful intellectuals at work today. She discusses "joyful revolt" with Julia Kristeva, the idea of "the rest of the world" with Gayatri Spivak, the "art of living" with Michel Serres, the "carnival of the senses" with Michael Taussig, the relation of hope to passion and to politics with Chantal Mouffe and Ernesto (...) Laclau. A dozen stimulating minds weigh in with their visions of a better social and political order. The result is a collaboration - of writing, of thinking, and of politics - that demonstrates more clearly than any single-authored project could how ideas encountering one another can produce the vision needed for social change. (shrink)

As we look to the future in a world with porous borders and boundaries transgressed by technologies, an inevitable question is:Can there be a single, global bioethics? Intimately intertwined with this question is a second one: How might a global bioethics account for profound - and constantly transforming - sources of cultural difference? Can a uniform, global bioethics be relevant cross-culturally? These are not simple questions, rather, a multi-dimensional answer is required. It is important to distinguish between two meanings of (...) bioethics: the academic discipline of bioethics as opposed to bioethics as a set of practices governing clinical care and scientific research. There is growing evidence to support the notion of a shared global understanding of bioethics as a field of inquiry focused on the moral dimensions of science and biomedicine. (shrink)

As we look to the future in a world with porous borders and boundaries transgressed by technologies, an inevitable question is:Can there be a single, global bioethics? Intimately intertwined with this question is a second one: How might a global bioethics account for profound - and constantly transforming - sources of cultural difference? Can a uniform, global bioethics be relevant cross-culturally? These are not simple questions, rather, a multi-dimensional answer is required. It is important to distinguish between two meanings of (...) bioethics: the academic discipline of bioethics as opposed to bioethics as a set of practices governing clinical care and scientific research. There is growing evidence to support the notion of a shared global understanding of bioethics as a field of inquiry focused on the moral dimensions of science and biomedicine. (shrink)

We support Jaswal & Akhtar's interrogation of social motivational accounts of autism and discuss two sources of bias that contribute to how others construe autistic people's communications: an experience-based bias that limits our ability to discern the speaker's action as communicative and a prejudice against the credibility of certain speakers that limits a listener's willingness to believe their testimony.