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)

Healing Emotions is the record of an extraordinary series of encounters between the Dalai Lama and prominent Western psychologists, physicians, and meditation teachers that sheds new light on the mind-body connection. Edited by Pulitzer Prize nominee and best-selling author Daniel Goleman.

Ample research links mothers’ postpartum depression (PPD) to adverse interactions with their infants. However, most studies relied on general population samples, whereas a substantial number of women are at elevated depression risk. The purpose of this study was to describe mothers’ interactions with their 6- and 12-month-old infants among women at elevated risk, although with a range of symptom severity. We also identified higher-order factors that best characterized the interactions and tested longitudinal consistency of these factors from 6 to 12 (...) months of infant age. We leveraged data from eight projects across the United States (n = 647), using standardized depression measures and an adaptation of the NICHD Mother-Infant Interaction Scales. Overall, these depression-vulnerable mothers showed high levels of sensitivity and positive regard and low levels of intrusiveness, detachment, and negative regard with their infants. Factor analyses of maternal behaviors identified two overarching factors—“positive engagement” and “negative intrusiveness” that were comparable at 6 and 12 months of infant age. Mothers’ ability to regulate depressed mood was a key behavior that defined “positive engagement” in factor loadings. An exceptionally strong loading of intrusiveness on the second factor suggested its central importance for women at elevated depression risk. Mothers with severe depressive symptoms had significantly more “negative intrusiveness” and less “positive engagement” with their 6-month-old infants than women with moderate or fewer depressive symptoms, suggesting a potential tipping point at which symptoms may interfere with the quality of care. Results provide the foundation for further research into predictors and moderators of women’s interactions with their infant among women at elevated risk for PPD. They also indicate a need for evidence-based interventions that can support more severely depressed women in providing optimal care. (shrink)

In the United States, the implementation of a successful system of mandated reporting of suspected child abuse continues to be plagued by the absence of a clear standard for when one must report. All 50 states of the U.S. have laws requiring certain individuals to report suspected child abuse. However, at present, there are variable thresholds for mandated reporting and no clear consensus on how existing thresholds should be interpreted. Because “child abuse” is often present as a possible etiology for (...) injuries and non-infectious conditions that beset children, it is problematic to suggest that “the mere possibility of child abuse” qualifies as cause to report. In an effort to move toward a more effective system of mandated reporting of child maltreatment, this paper discusses how the absence of a clear threshold affects mandated reporters, examines the relevant legal and conceptual issues, and suggests future directions for policy, practice, and research. (shrink)

A father brings his six-year-old daughter and her older sister to their pediatrician to be evaluated for a history of cough, runny nose, and low-grade fever. In addition to signs of a cold, the girl's nasal bridge is quite swollen and bruised. When asked how her nose was injured, she shrugs, and her father's only conjecture is that she sleepwalks and might have bumped into something. The father sits impatiently and as questioning progresses becomes increasingly defensive, at one point angrily (...) declaring, “We don't beat our kids, if that's what you’re asking.” Further complicating the situation is information from nurses that this family is “on the brink” socially and financially, and that additional stress is likely “to blow this family apart.” A careful physical exam identifies no other injuries, and a thorough review reveals no evidence of prior suspicious injuries, frequent visits to the emergency room, or bleeding abnormalities. The evidence does not point to abuse as the most likely explanation for the injury, but it clearly is not ruled out. Should one report this family for suspected abuse? Is one required to report? (shrink)

In a pioneering study Georges Duby showed how the system of justice that had prevailed in the Carolingian era ceased to function in the Mâconnais of the tenth century. His observations about the breakdown of public institutions opened up a new field of research, for they suggested the development in the tenth century of a unique set of judicial institutions and practices, different in kind from the traditional public order of the Roman and Roman-influenced Carolingian worlds. This was an important (...) change, and a number of scholars turned their attention to the developments described by Duby. (shrink)

The COVID-19 pandemic has inspired numerous opportunities for telehealth implementation to meet diverse healthcare needs, including the use of virtual communication platforms to facilitate the growth of and access to clinical ethics consultation (CEC) services across the globe. Here we discuss the conceptualization and implementation of two different virtual CEC services that arose during the COVID-19 pandemic: the Clinical Ethics Malaysia COVID-19 Consultation Service and the Johns Hopkins Hospital Ethics Committee and Consultation Service. A common strength experienced by both platforms (...) during virtual delivery included improved ability for local practitioners to address consultation needs for patient populations otherwise unable to access CEC services in their respective locations. Additionally, virtual platforms allowed for enhanced collaboration and sharing of expertise among ethics consultants. Both contexts encountered numerous challenges related to patient care delivery during the pandemic. The use of virtual technologies resulted in decreased personalization of patient-provider communication. We discuss these challenges with respect to contextual differences specific to each service and setting, including differences in CEC needs, sociocultural norms, resource availability, populations served, consultation service visibility, healthcare infrastructure, and funding disparities. Through lessons learned from a health system in the United States and a national service in Malaysia, we provide key recommendations for health practitioners and clinical ethics consultants to leverage virtual communication platforms to mitigate existing inequities in patient care delivery and increase capacity for CEC globally. (shrink)

In the first year of life, infants' speech perception becomes attuned to the sounds of their native language. This process of early phonetic learning has traditionally been framed as phonetic category acquisition. However, recent studies have hypothesized that the attunement may instead reflect a perceptual space learning process that does not involve categories. In this article, we explore the idea of perceptual space learning by implementing five different perceptual space learning models and testing them on three phonetic contrasts that have (...) been tested in the infant speech perception literature. We reproduce and extend previous results showing that a perceptual space learning model that uses only distributional information about the acoustics of short time slices of speech can account for at least some crosslinguistic differences in infant perception. Moreover, we find that a second perceptual space learning model, which benefits from word‐level guidance. performs equally well in capturing crosslinguistic differences in infant speech perception. These results provide support for the general idea of perceptual space learning as a theory of early phonetic learning but suggest that more fine‐grained data are needed to distinguish between different formal accounts. Finally, we provide testable empirical predictions of the two most promising models and show that these are not identical, making it possible to independently evaluate each model in experiments with infants in future research. (shrink)

Benchmarks against which healthcare ethics consultation (HCEC) services can assess their performance are needed. As first-generation benchmarks continue to be developed, it is the obligation of the field to continually evaluate how these measures reflect the performance of any single HCEC service. This will be possible only with widespread reporting of standardized data points. In their article in this issue of The Journal of Clinical Ethics, Glover and colleagues provide a valuable preliminary approach for assessing appropriate consult volumes for a (...) HCEC service. The limitations of their study read as a call to action for the field of clinical ethics to expand and standardize data reporting so that more robust metrics can be developed. In response to this call by Glover and colleagues, the Cleveland Clinic HCEC service provides consult data from 2015 through 2019 for one of its medical centers, and offers an additional volumebased metric, consult-to-ICU-to-bed ratio (CiBR), that may add nuance to any normative assessment of HCEC service consult volume. Given that volume-based metrics are the native language of the clinical environment, efforts to improve such metrics in the field through transparency and standardization are warranted. However, the expositive power of volume-based metrics is limited; additional domains related to quality and outcomes are needed. (shrink)

We report the identification of a recurrent, 520-kb 16p12.1 microdeletion associated with childhood developmental delay. The microdeletion was detected in 20 of 11,873 cases compared with 2 of 8,540 controls and replicated in a second series of 22 of 9,254 cases compared with 6 of 6,299 controls. Most deletions were inherited, with carrier parents likely to manifest neuropsychiatric phenotypes compared to non-carrier parents. Probands were more likely to carry an additional large copy-number variant when compared to matched controls. The clinical (...) features of individuals with two mutations were distinct from and/or more severe than those of individuals carrying only the co-occurring mutation. Our data support a two-hit model in which the 16p12.1 microdeletion both predisposes to neuropsychiatric phenotypes as a single event and exacerbates neurodevelopmental phenotypes in association with other large deletions or duplications. Analysis of other microdeletions with variable expressivity indicates that this two-hit model might be more generally applicable to neuropsychiatric disease. © 2010 Nature America, Inc. All rights reserved. (shrink)

For Emily Dickinson, perhaps no more so than for the rest of us, there was a powerful discrepancy between what was "inner than the Bone"1 and what could be acknowledged. To the extent that her poems are a response to that discrepancy—are, on one hand, a defiant attempt to deny that the discrepancy poses a problem and, on the other, an admission of defeat at the problem's enormity—they have much to teach us about the way in which language articulates our (...) life. There is indeed a sense in which these poems test the limits of what we might reveal if we tried and also of what, despite our exertions, will not give itself over to utterance. The question of the visibility of interior experience is one that will concern me in this essay, for it lies at the heart of what Dickinson makes present to us. In "The Dream of Communication," Geoffrey Hartman writes: "Art represents a self which is either insufficiently present or feels itself as not presentable."2 On both counts one thinks of Dickinson, for her poems disassemble the body in order to penetrate to the places where the feelings lie as if hidden, and they tell us that bodies are not barriers the way we sometimes think they are. Despite the staggering sophistication with which we discuss complex issues, like Dickinson we have few words, if any, for what happens inside us. Perhaps this is because we have been taught to conceive of ourselves as perfectly inexplicable or, if explicable, then requiring the aid of someone else to scrutinize what we are explicating to validate it. We have been taught that we cannot see for ourselves—this despite the current emphasis on our proprioceptive functions. But Dickinson tells us that we can see. More important, she tells us how to name what we see. · 1. The Complete Poems of Emily Dickinson, ed. Thomas H. Johnson , n. 321.· 2. Geoffrey Hartman, "The Dream of Communication," in I. A. Richards: Essays in His Honor, ed. Reuben Brower et al. , p. 173. Sharon Cameron, associate professor of English at Johns Hopkins University, is currently preparing a theoretical study of the lyric and is examining the relationship between obsession and lyrical structures. The present essay is part of her Lyric Time: Dickinson and the Limits of Genre. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Leviathan after 350 YearsSharon VaughanTom Sorell and Luc Foisneau, editors. Leviathan after 350 Years. Oxford: Clarendon Press, 2004. Pp. x + 308. Cloth, $74.00The editors introduce this collection as a testament to the continuing importance of Leviathan in political thought. Divided into three parts, these twelve essays are some of the papers presented at a May 2001 conference to mark the 350th anniversary of Leviathan's publication. Readers might (...) expect a discussion about Leviathan's endurance and relevance as a fundamental text of political philosophy, but this is not the book's main thrust. Instead, the authors engage in a discussion concerning some of the most provocative and controversial questions about Leviathan. Much of the debate centers on how one should interpret it, forcing readers not only to reconsider crucial parts of Hobbes's philosophy, but also the act of interpretation.Part one examines the place that Leviathan holds among Hobbes's political writings. Karl Schumann argues that one should not think of Leviathan as a radical departure from De Cive and that it did not mark the culmination of Hobbes's development as a political philosopher (14). Schumann's essay is not convincing because he effectively points out the consequential ways that Leviathan is distinct. Ted H. Miller suggests, "Leviathan's uniqueness is rooted in its poetic-philosophical innovations"(103). He points out that David Johnston, Quentin Skinner, and others have stressed the significance of its rhetorical style. Miller, however, proposes that it was the context and the company that Hobbes kept during this time that influenced his writing style. Kinch Hoekstra suggests that Hobbes is an unusual de facto theorist and Luc Foisneau believes that Leviathan is unique because of its theory of justice.Part two is devoted to investigating passions and politics in Leviathan. Richard Tuck believes that Hobbes's political philosophy is utopian because it demands a radical transformation of humans as passionate beings. Tuck says that while the Leviathan provides citizens with security, "they are also going to live a life without pride, their sense of their own individual importance reduced to nothing in the face of their commonwealth" (138). Tuck's essay stands in contrast to Tom Sorrell's analysis of the burdens on the sovereign. He concludes that he must be an individual with little, if any, regard for his own ambitions and passions (196). What one is left with is a Hobbesian version of a philosopher king who has his personal appetites in check always looking out for what benefits his subjects. Is [End Page 210] there any guarantee that the sovereign will be non-egotistical and public-spirited? No, because the sovereign has absolute freedom. Sorrell believes, however, that it is in the sovereign's best interest to be unselfish if she is to maintain her sovereignty (193).Quentin Skinner analyzes the classical theory of laughter, relating it to Hobbes's complicated views about it. Political agency in Leviathan is Yves Zarka's topic. It seems that the citizen is merely a subject, but Zarka cautions that one must carefully read the text and remember that certain rights are inalienable. How far one may take what Zarka interprets as the "the right of resistance" remains a debatable question (182). He believes that one might rethink Leviathan as a more complex piece of political philosophy by practicing "back-to front reading" as opposed to a direct-method reading of the text (182). Zarka thinks that citizens may have a more complex and passionate role than commonly thought (182). This is an alluring suggestion, but it is difficult to accept in light of Hobbes's preoccupation with security and obedience.The role of biblical and political authority is the theme for part three. Edwin Curley argues that Hobbes's treatment of covenants with God was possibly a vehicle for him to arouse skepticism about Christianity among his readers. A. P. Martinich rejects Curley's claim and concludes that not only does his argument fail on grounds of logic, but also it requires far too much "reading between the lines" (223). Martinich's analytic rigor and his attention to the process of interpretation raise serious doubts about Curley... (shrink)

Doing Science + Culture is a groundbreaking book on the cultural study of science, technology and medicine. Outstanding contributors including life and physical scientists, anthropologists, sociologists, literature/communication scholars and historians of science who focus on the analysis of science and scientific discourses within culture: what it means to "do" science. The essays are organized into three broad topics: transnational science and globalization (the movements of people, material resources and knowledges that underwrite scientific practices within and across borders of nation-states and (...) regions); emerging subjects and subjectivities (of research and researchers); and postdisciplinary pedagogies and curricula (the institutional settings of classroom, laboratory, department and academic division). Contributors: Itty Abraham, Anne Balsamo, Karen Barad, Michael M.J. Fischer, Joan H. Fujimura, Scott F. Gilbert, Emily Martin, Jackie Orr, Roddey Reid, Molly Rhodes and Sharon Traweek. (shrink)

This study examines values and value types as well as scores in levels of moral reasoning for␣students enrolled in a business program. These two factors are measured using the Schwartz Personal Values␣Questionnaire and the Defining Issues Test 2. No statistically significant differences in levels of moral␣reasoning, rankings of values, and value types could be attributed to gender. However, eight significant correlations between value types and levels of moral reasoning provide evidence that a systematic relationship exists. The relationships are not only (...) internally consistent but also consistent with the model of values based on motivational goals (Schwartz S. H. and K. Boenke: 2004, Journal of Research in Personality , 38 230–255). (shrink)

This study examines values and value types as well as scores in levels of moral reasoning for␣students enrolled in a business program. These two factors are measured using the Schwartz Personal Values␣Questionnaire and the Defining Issues Test 2. No statistically significant differences in levels of moral␣reasoning, rankings of values, and value types could be attributed to gender. However, eight significant correlations between value types and levels of moral reasoning provide evidence that a systematic relationship exists. The relationships are not only (...) internally consistent but also consistent with the model of values based on motivational goals (Schwartz S. H. and K. Boenke: 2004, Journal of Research in Personality, 38 230–255). (shrink)

We describe the structure, operation, and experience of the Massachusetts General Hospital ethics committee, formally called the Edwin H. Cassem Optimum Care Committee, from January 2007 through December 2013. Founded in 1974 as one of the nation’s first hospital ethics committees, this committee has primarily focused on the optimum use of life-sustaining treatments. We outline specific sociodemographic and clinical characteristics of consult patients during this period, demographic differences between the adult inpatient population and patients for whom the ethics committee was (...) consulted, and salient features of the consults themselves. We include three case studies that illustrate important consult themes during this period. Our findings expand knowledge about the structure and workings of hospital ethics committees and illustrate how one ethics committee has developed and utilized policies on end-of-life care. More generally, we model a sociological approach to the study of clinical ethics consultation that could be utilized to contextualize institutional practices over time. (shrink)

Stanley Fish opens the collection with a persuasive argument for the role of intention and biography. Michael McKeon, Gordon Turnbull, and Jerome Christensen are concerned with the late eighteenth--and early nineteenth-century English cultural discourse that gave rise to the nearly simultaneous emergence of literary biography, Romantic sensibility, and reflexive human consciousness. The essays by Alison Booth, Cheryl Walker, and Sharon O'Brien reveal that the recognition or lack thereof the biographical subject has received and remains both a problem and an (...) opportunity for women writers and readers. The essays by Valerie Ross, Rob Wilson, Steven Weiland, and William Epstein pursue the question of difference and cultural reification in the theory and practice of a specifically American biography and biographical criticism. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:François H. Lapointe PHILOSOPHY AND LITERATURE: A BIBLIOGRAPHIC SURVEY ThL· survey is limited to articles written in English that have appeared in journals published between 1 January 1974 and 31 December 1976. Abbott, Don. "Marxist Influences on the Rhetorical Theory of Kenneth Burke." Philosophy and Rhetoric 7 (1974): 217-33. Abel, Lionel. "Jacques Derrida: His 'Difference' With Metaphysics." Salmagundi no. 25 (1974): 3-21. Adamowski, T. H. "Character and Consciousness: D. (...) H. Lawrence, Wilhelm Reich, and Jean-Paul Sartre." University of Toronto Quarterly 43 (1974): 31 1-34. Adams, D. J. "Style and Social Ideas in Jacques le fataliste." Studies in Voltaire & the Eighteenth Century 124 (1974): 231-48. Adams, Hazard. "Contemporary Ideas of Literature: Terrible Beauty or Rough Beast?" Contemporary Literature 17 (1976): 349-77. Adorno, Theodor W. "Lyric Poetry and Society." Telos no. 20 (1974): 56-71. Ages, Arnold. "Bonald and the Jews." Revue de l'Université d'Ottawa 44 (1974): 32-43. Allen, Diogenes. "The Experience of Existence: Jean-Paul Sartre and Iris Murdoch." International Philosophical Quarterly 14 (1974): 181-87. Allen, Marcus. "Character Development in the Oreste of Voltaire and Les Mouches of Jean-Paul Sartre." CLA Journal 18 (1974): 1-21. Alter, Jean. "A (Terrorist) System of the Novel." Diacritics 6 (1976): 10-15. Altieri, Charles. "Wittgenstein on Consciousness and Language: A Challenge to Derridean Literary Theory." MLN 91 (1976): 1397-1423. Altieri,Charles. "Wordsworth's 'Preface' as Literary Theory." Criticism 18 (1976): 122-146. [On Wordworth and Wittgenstein.] Ames, Van Meter. "Art for Art's Sake Again?" Journal of Aesthetics and Art Criticism 33 (1975): 303-307. Appleman, Philip. "The Dread Factor: Eliot, Tennyson, and the Shaping of Science." Columbia Forum, N. S. 3 (1974): 32-38. Armstrong, Paul B. " E. M. Forster's Howard's End: The Existential Crisis of the Liberal Imagination." Mosaic 8 (1974): 183-99. Arnold, A. James. "La Condition humaine as Nietzschean Tragedy." Mélanges Malraux Miscellany 6 (1974): 15-24. 366 François H. Lapointe367 Aronson, Ronald. "L'Idiot de la famille: The Ultimate Sartre?" Telos no. 20 (1974): 90-107. Arthos, John. "Du Bartas, Petrarch and the Poetry of Deism." Rice University Studies 60 (1974): 1-17. Artz, Johannes. "Newman as Philosopher." International Philosophical Quarterly 16 (1976): 263-88. Ausmus, Harry J. "Schopenhauer's Philosophy of Language." The Midwest Quarterly 18 (1977): 169-86. Ayala, Francisco. "Ortega y Gasset, Literary Critic." Critical Inquiry 1 (1974): 395-414. Bakalar, H. Nicholas. "The Cartesian Legacy to the Eighteenth-century Grammarians." MLN 91 (1976): 698-721. Barnes, Hazel. "Apotheosis and Deification in Plato, Nietzsche and Huxley." Philosophy and Literature 1 (1976): 3-24. Baron, Dennis E. "Role Structure and the Language of Literature." Journal of Literary Semantics 4 (1975): 43-52. Barooskian, Vahan D. "The Aesthetics of the Russian Revolutionary Theatre 1917-1921." British Journal of Aesthetics 15 (1975): 99-117. Bart, B. F. "Hypercreativity in Stendhal and Balzac." Nineteenth Century French Studies 3 (1974-75): 18-39. Barthes, Roland. "An Introduction to the Structural Analysis of Narrative." New Literary History 6 (1975): 237-72. Bashford, Bruce. "The Rhetorical Method in Literary Criticism." Philosophy and Rhetoric 9 (1976): 133-46. Bass, Alan. "Time and the Witch: Femininity, Metapsychology and the Temporality of the Unconscious." MLN 91 (1976): 871-912. Bassett, Sharon. "Towards a Critique of Romanticism: Wordsworth, Pater and the 'Anima Mundi'." Criticism 17 (1975): 262-75. Batchelor, R. "Literature, Society and the Concept of Revolt." European Studies Review 5 (1975): 395-427. Battin, M. Pabst. "Aristotle's Definition of Tragedy in the Poetics, Part 1." Journal of Aesthetics and Art Criticism 33 (1974): 155-70, and Part II in Ibid. 33 (1975): 293-302. Bauer, George. "Sartre and the 'Sugars' of History." L'Esprit Créateur 15 (1975): 377-86. Baumgarten, Murray. "The Historical Novel: Some Postulates." Clio 4 (1975): 173-82. Beauchamp, Gorman. "Gulliver's Return to the Cave: Plato's Republic and Book IV of Gulliver's Travels." The Michigan Academician 7 (1974): 201-10. Bennett, Jonathan. "The Conscience of Huckleberry Finn." Philosophy 48 (1974): 123-34. Benzon, William. "Cognitive Networks and Literary Semantics." MLN 91 (1976): 952-82. Bergonzi, Bernard. "A Grid of Codes: Views of Structuralism." Encounter 45 (1975): 52-58. Berry, Wanda Warren. "The... (shrink)

The move from good to ought, a premise form found in many justifications of environmental ethics, is itself in need of justification. Of the potential moves from good to ought surveyed, some have considerable promise and others less or none. Those without much promise include extrapolations of obligations based on human goods to nonsentient natural entities, appeals to educated judgment, precautionary arguments, humanistic consequentialist arguments, and justifications that assert that our obligations to natural entities are neither directly to those entities (...) nor derived from our obligations to humans. Some arguments that extrapolate obligations based on goods involving sentience from humans to sentient animals are promising, but whether they are sufficient is controversial. Gandhian andAristotlian arguments are also promising, provided we can justify their ought premises. (shrink)