Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

There are many challenges to be met when writing an introductory treatise on an academic topic. The subject matter must be presented in a simple but not oversimplified manner. Enough theory must be included to ground the discussion of specific issues but not so much as to overwhelm or bore the readers. The text should be long enough to do justice to the subject matter but short enough to be readily accessible, especially for readers such as healthcare professionals, whose primary (...) concerns lie elsewhere.There are additional challenges in a relatively novel interdisciplinary field such as bioethics. The scope and methodology of bioethics are matters of great controversy, as are its relations with related subjects such as professionalism and human rights. The field is so broad that a single author cannot claim expertise on all topics. Rivalries between law and ethics and among medicine, other health professions, and disciplines such as philosophy complicate efforts to produce a broadly acceptable text. Finally, national and cultural differences pose major challenges to anyone trying to write for a truly international readership.The difficulty of meeting all these challenges in producing the WMA Medical Ethics Manual provides ample opportunity for criticism, especially from bioethics experts. The three expert reviewers of the manual in this issue of the journal are remarkably restrained in pointing out its shortcomings.1–3 I am grateful for both their positive evaluations and their constructive criticism. In what follows, I will respond to each of them in turn, focusing in particular on their suggestions as to how the Manual could have been improved.Before addressing these suggestions, I wish to clarify a matter raised by Søren Holm, namely, to what degree the manual …. (shrink)

Because the WMA’s new manual contains a partially partisan view of what constitutes medical ethics, if used for teaching it needs to be balanced by other materialsThe recent publication of the World Medical Association’s Medical Ethics Manual should be welcomed since it gives people all over the world, or at least those people who are on the internet and who have a reasonable printer, access to an introduction to medical ethics that can be used as the basis for an introductory (...) course in medical ethics or for self study.1 The manual covers a wide range of ethical issues in medicine, but much of the focus is on the interaction between the physician and other individual agents—for example, patients and other healthcare professionals.Although there is much that is uncontroversial in the manual, there are a number of places where it is either vague or straightforwardly tendentious. In my short review I will focus on some of these problematic sections.One problem in reviewing this publication is that it is not quite clear to what degree it reflects the views of the WMA. On page two we find the following disclaimer:"This Manual is a publication of the Ethics Unit of the World Medical Association. It was written by John R Williams, Director of Ethics, WMA. Its contents do not necessarily reflect the policies of the WMA, except where this is clearly and explicitly indicated ."In the foreword by the WMA Secretary General, however, we read that the manual is the result of:"… a process [that] was started to develop a basic teaching aid on medical ethics for all medical students and physicians that would be based on WMA policies, but not be a policy document itself ."I …. (shrink)

In a recent essay review of William R. Newman, Atoms and Alchemy (2006), Ursula Klein defends her position that philosophically informed corpuscularian theories of matter contributed little to the growing knowledge of "reversible reactions" and robust chemical species in the early modern period. Newman responds here by providing further evidence that an experimental, scholastic tradition of alchemy extending well into the Middle Ages had already argued extensively for the persistence of ingredients during processes of "mixture" (e.g. chemical reactions), and (...) that this corpuscular alchemical tradition bore important fruit in the work of early modern chymists such as Daniel Sennert and Robert Boyle. (shrink)

The social psychology of science is a compelling new area of study whose shape is still emerging. This erudite and innovative book outlines a theoretical and methodological agenda for this new field, and bridges the gap between the individually focused aspects of psychology and the sociological elements of science studies. Presenting a side of social psychology that, until now, has received almost no attention in the social sciences literature, this volume offers the first detailed and comprehensive study of the social (...) psychology of science, complete with a large number of empirical and theoretical examples. The volume's introductory section provides a detailed analysis of how modern social psychology might apply to the study of science. Chapters show how to analyze science in terms of social cognition, attribution theory, attitudes and attitude change, social motivation, social influence and social conformity, and intergroup relations, weaving extensive illustrations from the science studies literature into the theoretical analysis. The nature and role of experimentation are discussed, as are metaanalytic methods for summarizing the results of multiple studies. Ways to facilitate the generalization of causal inferences from experimental work are also examined. The book focuses on such topics as interactions among small groups of scientists, and the impact of social motivation, influence, and conformity on scientific work. Also covered are scientists' responses to ethical issues in research, differences in cognitive style distribution, creativity in research and development, and the sociologists's view of the social psychology of science and technology. In addition, the book provides two annotated bibliographies, one on the philosophy of science and the other on social psychology, to guide readers in both disciplines to salient recent works. Valuable to the entire science studies community, this text will be of special interest to philosophers, sociologists, psychologists, and historians of science interested in the nature of knowledge development in science. Because of its novel application of social psychological theories and methods, this book will be useful as a primary text or a secondary text in courses on science studies in psychology, sociology, or philosophy departments. (shrink)

Despite the fact that psychedelics were proscribed from medical research half a century ago, recent, early-phase trials on psychedelics have suggested that they bring novel benefits to patients in the treatment of several mental and substance use disorders. When beneficial, the psychedelic experience is characterized by features unlike those of other psychiatric and medical treatments. These include senses of losing self-importance, ineffable knowledge, feelings of unity and connection with others and encountering ‘deep’ reality or God. In addition to symptom relief, (...) psychedelic experiences often lead to significant changes in a patient’s personality and worldview. Focusing on the case of psilocybin, we argue that the peculiar features of psychedelics pose certain novel risks, which warrant an enhanced informed consent process–one that is more comprehensive than what may be typical for other psychiatric medications. We highlight key issues that should be focused on during the consent process and suggest discussion prompts for enhanced consent in psychedelic psychiatry. Finally, we respond to potential objections before concluding with a discussion of ethical considerations that will arise as psychedelics proceed from highly controlled research environments into mainstream clinical psychiatry. (shrink)

William R. Caspary makes the case for Dewey as a more discerning and challenging political theorist than this.

Domain constraint, the requirement that analogues be selected from "the same category," inheres in the popular saying "you can't compare apples and oranges" and the textbook principle "the greater the number of shared properties, the stronger the argument from analogy." I identify roles of domains in biological, linguistic, and legal analogy, supporting the account of law with a computer word search of judicial decisions. I argue that the category treatments within these disciplines cannot be exported to general informal logic, where (...) the relevance of properties, not their number, must be the logically prior criterion for evaluating analogical arguments. (shrink)

Why would a country strongly influenced by Buddhism's reverence for life allow legalized, widely used abortion? Equally puzzling to many Westerners is the Japanese practice of mizuko rites, in which the parents of aborted fetuses pray for the well-being of these rejected "lives." In this provocative investigation, William LaFleur examines abortion as a window on the culture and ethics of Japan. At the same time he contributes to the Western debate on abortion, exploring how the Japanese resolve their conflicting (...) emotions privately and avoid the pro-life/pro-choice politics that sharply divide Americans on the issue. (shrink)

Several prominent writers including Norman Daniels, James Sabin, Amy Gutmann, Dennis Thompson and Leonard Fleck advance a view of legitimacy according to which, roughly, policies are legitimate if and only if they result from democratic deliberation, which employs only public reasons that are publicised to stakeholders. Yet, the process described by this view contrasts with the actual processes involved in creating the Affordable Care Act (ACA) and in attempting to pass the Health Securities Act (HSA). Since the ACA seems to (...) be legitimate, as the HSA would have been had it passed, there seem to be counterexamples to this view. In this essay, I clarify the concept of legitimacy as employed in bioethics discourse. I then use that clarification to develop these examples into a criticism of the orthodox view–that it implies that legitimacy requires counterintuitively large sacrifices of justice in cases where important advancement of healthcare rights depends on violations of publicity. Finally, I reply to three responses to this challenge: (1) that some revision to the orthodox view salvages its core commitments, (2) that its views of publicity and substantive considerations do not have the implications that I claim and (3) that arguments for it are strong enough to support even counterintuitive results. My arguments suggest a greater role for substantive considerations than the orthodox view allows. (shrink)

The different ways in which the three medieval societies of Byzantium, Latin Christendom, and Islam institutionalized the charitable impulse present in their respective faiths reflected the fundamentally different religious values which motivated these civilizations as well as their different levels of material and intellectual development. All three societies exalted the relief of human suffering, especially the care of the sick, as a religiously sanctioned gesture; and all three invented or adopted institutional means for attaining this pious objective. The various medieval (...) counterparts of the modern “hospital”—the Byzantine nosocomeion or xenodocheion, the European hospitale, and the Islamic maristan—differed significantly, however, with respect to their organization and operation, the clientele which they served, and the ultimate intent of their charitable efforts. Accordingly, a comparison of these social welfare institutions reveals the contrasting ways in which the two Christendoms and Islam defined and applied the ideals of “piety” and “charity” during the middle ages. (shrink)

It no longer is true in a metaphorical sense only that a person can have a change of heart. We might grant this much — allow that a person may have one heart at one time and have another heart at still another time — and also resist the idea that a person can have a change of mind in anything other than a qualitative sense. In the discussion that follows, this standard view of the matter is called into question. (...) If the argument presented here is sound, it can happen both that one person has numerically different minds at different times and that different people have the same mind at different times. These possibilities, as I take them to be, call for reassessment of some well entrenched assumptions concerning personal identity and responsibility. In particular, they suggest that it may not be true that person A bears responsibility for making decisions person B previously made only on the condition that A is the same person as B. (shrink)

Sections include: experiments and generalised causal inference; statistical conclusion validity and internal validity; construct validity and external validity; quasi-experimental designs that either lack a control group or lack pretest observations on the outcome; quasi-experimental designs that use both control groups and pretests; quasi-experiments: interrupted time-series designs; regresssion discontinuity designs; randomised experiments: rationale, designs, and conditions conducive to doing them; practical problems 1: ethics, participation recruitment and random assignment; practical problems 2: treatment implementation and attrition; generalised causal inference: a grounded theory; (...) generalised causal inference: methods for single studies; generalised causal inference: methods for multiple studies; a critical assessment of our assumptions. (shrink)

Debates about the ethics of health care and medical research in contemporary pluralistic democracies often arise partly from competing religious and secular values. Such disagreements raise challenges of balancing claims of religious liberty with claims to equal treatment in health care. This paper proposes several mid-level principles to help in framing sound policies for resolving such disputes. We develop and illustrate these principles, exploring their application to conscientious objection by religious providers and religious institutions, accommodation of religious priorities in biomedical (...) research, and treatment of patients’ religious views in doctor–patient encounters. Given that no sound set of guiding principles yields precise solutions for every policy dispute, we explore how morally sound democracies might deliberatively resolve such policy issues, following our proposed principles. Taken together and carefully interpreted, these principles may help in guiding difficult decision making in the indefinitely large realm where government, medical providers, and patients encounter problems concerning religion and medicine. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Unconventional Guest: Masao Abe’s Dialogue with the American AcademyWilliam R. LaFleurDuring the two years we were together at Princeton I once took Masao Abe to meet my parents, then alive and living in New Jersey. I had told them some things in advance about Abe, about Zen, and about what in Abe’s ways could at times be unconventional. My mother, I knew, would put lots of effort into preparing (...) the Sunday dinner we ate on the day of our visit. At the meal’s conclusion Abe turned to my mother and declared: “Mrs. LaFleur, this meal has been simply outrageous! ” For a moment I thought he might have meant “delicious” and had landed on the wrong word. But then I saw his smiling eyes and mouth. He had meant what he said. Everyone laughed and my mother promptly thanked him for his “compliment.”Being at times a genially unconventional guest, one who also in academic or dialogic contexts would say surprising or even unsettling things, was something at which Abe excelled. He was also unconventional in his teaching. He frustrated us when we expected the usual approach. In the book edited by Donald Mitchell I told how in 1969 at the University of Chicago Abe aggravated those of us graduate students who wanted to do a survey of all of modern Japanese philosophy; Abe forced us to stay with certain sentences in Nishida, wanting our minds to be changed. He would not budge.1Some years later at Princeton he proved to be maddeningly insistent on this. Reading The Platform Sutra of the Sixth Patriarch with graduate students in 1977 who knew some Chinese and Japanese was not for Professor Abe going to be exercise in the usual historico-textual excavation; all that was available, he said, in the introduction and notes to Philip Yampolsky’s translation of that text. He was not interested in an “objectification” that put distance between the voice speaking through the text and the person being addressed by it today. For him the ancient text must read as if written for us and for us today. With Abe as teacher the dialogic mode of the seminar room had to replicate in its own way the lecture hall of the Ta-fan Temple! But graduate students at Princeton, inured as they were to the conventional mode of textual-historical analysis, were made clearly uncomfortable by this. Therefore, hoping I might serve as a mediator, they asked me to ask Abe if we might be more historical and move on more quickly. When, with some trepidation, I transmitted this request [End Page 127] to Abe, he merely chuckled and smiled, leaving me to guess why we should expect no change in his emphasis. What follows is my attempt to unpack what was involved in this... and why it remains relevant today.Even some more recent scholars of East Asian Buddhism in our academy today resemble those graduate students back then in Princeton. They, too, have been suggesting that there was something “behind the times” or in need of being updated in the dialogic teaching mode used so brilliantly by Abe—as well as by Hisamatsu Shin’ichi and D. T. Suzuki. However, there is, I think, something both laughably conventional and arrogantly neocolonialist in these critics’ assumptions. They believe that textual and historicist methods (of which Ideologiekritik is an extension) remain something that the West still needs to teach to the non-West, that these render all other methods outdated and irrelevant, and that they can be deployed to expose what remains flawed in the way that, for instance, Japanese such as Abe study and teach Buddhism and Zen.Ironically, this presumptuous stance itself crumbles under historical and textual analysis—at least when applied to Japan. In various studies, Michael Pye has shown that Tominaga Nakamoto’s studies of Buddhist texts, historical and critical to the core, were done in the early seventeenth century and show a solid tradition of scholarship in this mode arising there without any influence from Europe. As Pye shows, interest in the plurality of religions and an early stage of a “science of religions” were present in Japan... (shrink)

The author’s intent is not to elaborate an erudite paper but to offer information on this theme. In the present article it is pointed out the importance that is given nowadays to the theory of the covenant and of the social justice that is founded on it. Afterwards an introduction on the matter o..

The P family of transposable genetic elements is thought to be a recent addition to the Drosophila melanogaster genome. New evidence suggests that the elements came from another Drosophila species, possibly carried by parasitic mites. The transposition mechanism of P elements involves DNA gap repair which may have facilitated their rapid spread through D. melanogaster worldwide. These results provide new insight into the process of a transpo‐son's invasion into a new species and the potential risk of extinction such an invasion (...) might entail. (shrink)

Genetic diseases can be every bit as devastating as the diseases caused by bacteria or viruses, and in one way they are much worse: we pass them on to our children, generation after generation after generation. Science and medicine have provided us with clues to the treatment of a few genetic diseases, although by their very nature they have never been considered curable. But, as William R. Clark shows, that is about to change through one of the most profound (...) revolutions in modern medicine: gene therapy, a branch of the new field of molecular medicine. The New Healers is a clear and compelling introduction to a revolution in modern medicine that may lead to cures for cancer, AIDS, and nearly 4,000 previously incurable genetic diseases. Clark introduces us to the scientists working on the vast Human Genome Project, and outlines all the basic elements of molecular biology necessary to understand this remarkable new medicine. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:88 Reviews EPISTEMOLOGY OFMODERNISM WILLIAM R. EVERDELL History/ St. Ann'sSchool Brooklyn, NY 11201, USA [email protected] Ann Banfield. The Phantom Table:Woolf,Fry,Russelland the Epistemology of Modernism. Cambridge and New York: Cambridge U.P., 2000. £35.00; US$49.95. In Virginia Woolf's difficult masterpiece, The Waves(1931),each of several separate interior monologues-"streams of consciousness" in the American critical idiom-is separated from the next by an interpolated "Interlude". The interior monologues are assigned co different characters, (...) bur the Interludes are rendered from no perspectiveat all, verymuch like the "Time Passes"chapter of Woolf's earlier and better known novel, Tothe Lighthouse (1927).The passive voice and the demonstrative and indefinite pronotms are essential, removing from the scene not only the characters' points of view, but the author's as well. Numbered among the consequences of the new twentieth-century technique of interior monologue, the Interludes can be accepted today as one more trick of literary "Modernism", but for Woolf it was new, and the task of preventing any of her Interludes from becoming just another report from the rypical "omniscient narrator" of Victorian fiction was one of the most demanding she ever set herself as a writer. Like her friend the Post-Impressionist critic Roger Fry, she wanted to analyze the world outside the self into its smallest sensible elements, then show human selvesasthey formed by accumulating the experience of these myriad, random, discontinuous components, and finally to recombine these components in their two kinds, selvesand sense-able things, into a meaningful whole-a work of art. Rejecting both the idealism of Bradley and the British philosophical generation of the 1890sand the naive positivist materialism coming out of the 1850s, Bertrand Russell eventually settled on an ontology most philosophers call "realist " in that it rejected the view that the world accessible to the senses was no more than a mental construct and considered it naive to assign the origin of subjectivity to matter. The material world was, Russell thought, actually external -"out there". He did think, however,that all we knew of the external world was what wassensed by the sensesand pictured by the mind. He alsoconcluded (in essayslike "The Relation of Sense-data to Physics"written in 1910-17)d1at both that world and what we knew of it was presented in very small parts, and Reviews 89 analyzable down to them, or, in other words, that both ontology and epistemology were atomized. Each mind, with its senses, occupied, he thought, one of an infinite number of occupied and unoccupied "perspectives", each of which Lmiquely focused che "sensibilia"-whatever was perceived in che external world-like a Leibnizian monad. Machemacicallogic, on which Russell set che highest store, would be able, he thought, to bring together perspectives by providing a minimal secof cruchswhich, though abscracc,were objective in che sense chaccheywere noc private and could be agreed to by all. Something similar though rougher mighc be done for chesensibilia in cheworld "ouc chere" by che science of physics. Did Virginia Woolflearn from Bertrand Russell?To a latcer-dayacademic ic sounds too urrerly improbable, for che simple reason (obvious to academics) chat anyone who has made icto the upper levelsof English literature must have chosen cheseparticular heights to scale because the trail was so blessedlyfreeof chosenasry mathematical burrs and logical reazles,and the air so filledwith che pure chatter of French phenomenologisrs, that no hiker would ever have to struggle with analytical philosophy again. Lessmetaphorically, the separation of departments of literature from those of philosophy has come so close to divorce chat few in U.S. English Departments can make head or cail of che graduate thesis that one of Russell's philosophy students wrote on F.H. Bradley, and fewer still can trace the term "objective correlative" used by thac student (who was in fact T. S. Eliot) back to an early work of Husserl. Meanwhile, ic is taken for granted by those in Philosophy that there are no ideas worth discussing in Woolf, or, indeed, in any other novelise,greacthough she may be, Lmlessone is to descend from ontology and epistemology to the foothills of ethics and politics, or worse, aesthetics. (Among... (shrink)

This paper discusses using the Chernobyl Incident as a case study in engineering ethics instruction. Groups of students are asked to take on the role of a faction involved in the Chernobyl disaster and to defend their decisions in a mock debate. The results of student surveys and the Engineering and Science Issues Test indicate that the approach is very popular with students and has a positive impact on moral reasoning. The approach incorporates technical, communication and teamwork skills and has (...) many of the features suggested by recent literature. (shrink)