Background Families whose child has unexplained intellectual or developmental differences often hope that a genetic diagnosis will lower barriers to community-based therapeutic and support services. However, there is little known about efforts to mobilize genetic information outside the clinic or how socioeconomic disadvantage shapes and constrains outcomes.Methods We conducted an ethnographic study with predominantly socioeconomically disadvantaged families enrolled in a multi-year genomics research study, including clinic observations and in-depth interviews in English and Spanish at multiple time points. Coding and thematic (...) development were used to collaboratively interpret fieldnotes and transcripts.Results Thirty-two families participated. Themes included familial expectations that a genetic diagnosis could be translated into information, understanding, and assistance to improve the quality of a child’s day-to-day life. After sequencing, however, genetic information was not readily converted into improved access to services beyond the clinic, with families often struggling to use a genetic diagnosis to advocate for their child.Conclusion Families’ ability to use a genetic diagnosis as an effective advocacy tool beyond the clinic was limited by the knowledge and resources available to them, and by the eligibility criteria used by therapeutic service providers’ – which focused on clinical diagnosis and functional criteria more than etiologic information. All families undertaking genomic testing, particularly those who are disadvantaged, need additional support to understand the limits and potential benefits of genetic information beyond the clinic. (shrink)

The two target articles in this issue bring into focus the struggle for governance over biomedical interventions that may offer some families more agency—the capacity to act—in the context of many...

Dispositional forgiveness is positively associated with many facets of wellbeing and has protective implications against depression and anxiety in adolescents. However, little work has been done to examine neurobiological aspects of forgiveness as they relate to clinical symptoms. In order to better understand the neural mechanisms supporting the protective role of forgiveness in adolescents, the current study examined the middle frontal gyrus, which comprises the majority of the dorsolateral prefrontal cortex and is associated with cognitive regulation, and its relationship to (...) forgiveness and clinical symptoms in a sample of healthy adolescents. In this cross-sectional study, larger MFG volume was significantly associated with higher self-reported dispositional forgiveness scores and lower levels of depressive and anxiety symptoms. Forgiveness mediated the relationship between MFG volume and both depressive and anxiety symptom levels. The mediating role of forgiveness in the relationship between MFG volume and clinical symptoms suggests that one way that cognitive regulation strategies supported by this brain region may improve adolescent mental health is via increasing a capacity for forgiveness. The present study highlights the relevance of forgiveness to neurobiology and their relevance to emotional health in adolescents. Future longitudinal studies should focus on the predictive quality of the relationship between forgiveness, brain volume and clinical symptoms and the effects of forgiveness interventions on these relationships. (shrink)

Science fiction is often held up as a particularly philosophical genre. For, beyond actualising mind-experiment-like fantasies, science fiction films also commonly toy with speculative ideas, or else engineer encounters with the strange and unknown. Denis Villeneuve's Arrival is a contemporary science fiction film that does exactly this, by introducing Lovecraft-esque tentacular aliens whose arrival on Earth heralds in a novel, but ultimately paralysing, inhuman perspective on the nature of time and reality. This article shows how this cerebral film invites viewers (...) to confront a counterintuitive model of time that at once recalls and reposes what Gilles Deleuze called a “third synthesis” of time, and that which J. M. E. McTaggart named the a-temporal “C series” of “unreal” time. We finally suggest that Arrival's a-temporal conception of the future as having already happened can function as a key to understanding the fate of humanity as a whole as we pass from the anthropocene, in which humans have... (shrink)

For many children with complex medical conditions, decisions regarding their goals of care lie in the zone of parental discretion. That is, clinicians appropriately recognize that in many cases whether to prioritize quantity of life or quality of life is a deeply personal, values-laden decision best made by those who are most deeply invested in the outcome. Once a family has committed to a goal, however, there may be new or ongoing conflict between parents and clinicians regarding the specific interventions (...) provided or not provided in support of that goal. To what extent is it ethically permissible for a seriously ill child’s surrogate decision makers to reject individual interventions that support their desired goal of care? This question might be best described thus: is pediatric healthcare “prix fixe,” in which clinicians help parents decide the best of one or more set combinations (“menus”) of interventions, or is it “à la carte,” in which parents are free to accept or reject each individual intervention? We argue that the concept of a “prix fixe” approach should be discussed with families early in the development of the clinical relationship, as an essential facet of shared decision making. (shrink)

One barrier to optimal pain management in the neonatal intensive care unit is how the healthcare community perceives, and therefore manages, neonatal pain. In this paper, we emphasise that healthcare professionals not only have a professional obligation to care for neonates in the NICU, but that these patients are intrinsically worthy of care. We discuss the conditions that make neonates worthy recipients of pain management by highlighting how neonates are vulnerable to pain and harm, and completely dependent on others for (...) pain management. We argue for a relational account of ethical decision-making in the NICU by demonstrating how an increase in vulnerability and dependence may be experienced by the healthcare community and the neonate’s family. Finally, an ethical framework for decisions around neonatal pain management is proposed, focussing on surrogate decision-making and the importance of compassionate action through both a reflective and an affective empathy. As empathy can be highly motivating against pain, we propose that, in addition to educational programs that raise awareness and knowledge of neonatal pain and pain management, healthcare professionals must cultivate empathy in a collective manner, where all members of the NICU team, including parents, are compassionate decision-makers. (shrink)

This volume is a collection of papers from the Third Consultation on Hermeneutics at Drew University. The goal of this conference was, in Hopper's words, to "question what kind of language, or thinking, is appropriate to a fundamental ontology, to a language that does not commit objectification, or reification, upon its subject matter in the very mode of its utterance." The first essay in the volume was not read at the conference, but is reprinted from a 1961 Harper's magazine, namely, (...) Norman O. Brown's "Apocalypse: the Place of Mystery in the Life of the Mind." It is unfortunate that Brown is given the place of honor in this collection, since his essay is somewhat offensive and irresponsible. Consider, for example: "Truth is what any fool can see. This is what is meant by so-called scientific method. So-called science is that attempt to democratize knowledge—the attempt to substitute method for insight, mediocrity for genius, by getting a standard operating procedure," or "Vacancy is not the worst condition of mind." Of the remaining papers in this book, the high-points are Kenneth Burke's "Theory of Terminology," a reader's key to his many fine writings on figurative language, Beda Allemann's "Metaphor and Antimetaphor," an interesting analysis of Kafka's prose style, and Owen Barfield's "Imagination and Inspiration," an essay on the difficulties of talking about spiritual experiences in understandable language. In fact, Barfield levels the most relevant criticism at this symposium when he cautions that "very different considerations apply to the exercise of the imagination on the one hand, and, on the other, any attempt to investigate its nature."—E. H. W. (shrink)

Science communication via testimony requires a certain level of trust. But in the context of ideologically-entangled scientific issues, trust is in short supply—particularly when the issues are politically ‘entangled’. In such cases, cultural values are better predictors than scientific literacy for whether agents trust the publicly-directed claims of the scientific community. In this paper, we argue that a common way of thinking about scientific literacy—as knowledge of particular scientific facts or concepts—ought to give way to a second-order understanding of science (...) as a process as a more important notion for the public’s trust of science. (shrink)

The scientific community, we hold, often provides society with knowledge—that the HIV virus causes AIDS, that anthropogenic climate change is underway, that the MMR vaccine is safe. Some deny that we have this knowledge, however, and work to undermine it in others. It has been common to refer to such agents as “denialists”. At first glance, then, denialism appears to be a form of skepticism. But while we know that various denialist strategies for suppressing belief are generally effective, little is (...) known about which strategies are most effective. We see this as an important first step toward their remediation. This paper leverages the approximate comparison to various forms of philosophical skepticism to design an experimental test of the efficacy of four broad strategies of denial at suppressing belief in specific scientific claims. Our results suggest that assertive strategies are more effective at suppressing belief than questioning strategies. (shrink)

Russell articulates compelling reasons that bioethicists and health care professionals should take individual responsibility for deconstructing structural injustices in healthcare through in...

Next SectionIn an online study conducted separately in the UK and the US, participants rated the acceptability and fairness of four interventions: two types of financial incentives and two types of medical interventions. These were stated to be equally effective in improving outcomes in five contexts: weight loss and smoking cessation programmes, and adherence in treatment programmes for drug addiction, serious mental illness and physiotherapy after surgery. Financial incentives were judged less acceptable and to be less fair than medical interventions (...) across all five contexts. Context moderated the relative preference between rewards and penalties: participants from both countries favoured rewards over penalties in weight loss and treatment for serious mental illness. Only among US participants was this relative preference moderated by perceived responsibility of the target group. Overall, participants supported funding more strongly for interventions when they judged members of the target group to be less responsible for their condition, and vice versa. These results reveal a striking similarity in negative attitudes towards the use of financial incentives, rewards as well as penalties, in improving outcomes across a range of contexts, in the UK and the USA. The basis for such negative attitudes awaits further study. (shrink)

1 Evidence-based policy requires researchers to provide the answers to ecological questions that are of interest to policy makers. To find out what those questions are in the UK, representatives from 28 organizations involved in policy, together with scientists from 10 academic institutions, were asked to generate a list of questions from their organizations. 2 During a 2-day workshop the initial list of 1003 questions generated from consulting at least 654 policy makers and academics was used as a basis for (...) generating a short list of 100 questions of significant policy relevance. Short-listing was decided on the basis of the preferences of the representatives from the policy-led organizations. 3 The areas covered included most major issues of environmental concern in the UK, including agriculture, marine fisheries, climate change, ecosystem function and land management. 4 The most striking outcome was the preference for general questions rather than narrow ones. The reason is that policy is driven by broad issues rather than specific ones. In contrast, scientists are frequently best equipped to answer specific questions. This means that it may be necessary to extract the underpinning specific question before researchers can proceed. 5 Synthesis and applications. Greater communication between policy makers and scientists is required in order to ensure that applied ecologists are dealing with issues in a way that can feed into policy. It is particularly important that applied ecologists emphasize the generic value of their work wherever possible. (shrink)

Brock Macdonald1, Evi Vakiani2, Rhonda K Yantiss3, Jun Lee4, Robert S Brown Jr5, Samuel H Sigal61Division of Gastroenterology, Department of Medicine, University of California-San Francisco, San Francisco, CA, 2Department of Pathology, Memorial Sloan–Kettering Cancer Center, New York, NY, 3Department of Pathology and Laboratory Medicine, New York Weill Cornell Medical College, New York, NY, 4Division of Nephrology, Department of Medicine, Weill Cornell Medical College, New York, NY, 5Division of Gastroenterology, Department of Medicine, Columbia University College of Physicians and Surgeons, New (...) York, NY, 6Division of Gastroenterology and Hepatology, Department of Medicine, New York University, New York, NY, USA: The use of sirolimus as an alternative to calcineurin inhibitors for posttransplant immunosuppression is associated with a variety of inflammatory conditions. In this report, we describe the case of a 34-year-old man who developed abnormal liver tests 6 years after live-donor kidney transplantation and 5 years after initiation of sirolimus-based immunosuppression. Elevated aminotransferase levels persisted after withdrawal of potentially hepatotoxic medications, and serologic evaluation for viral hepatitis, autoimmune disease, and genetic disorders was unrevealing. Liver biopsy revealed prominent hepatocellular injury associated with a mixed inflammatory infiltrate and liver tests normalized within 2 weeks of discontinuation of sirolimus. In this report, we review previous reports of sirolimus hepatotoxicity and propose a unifying hypothesis for the various inflammatory conditions that have been attributed to sirolimus.Keywords: sirolimus, immunosuppression, transplant, inflammatory conditions, hepatotoxicity. (shrink)

In recent years, we have seen a new concern with ethics training for research and development professionals. Although ethics training has become more common, the effectiveness of the training being provided is open to question. In the present effort, a new ethics training course was developed that stresses the importance of the strategies people apply to make sense of ethical problems. The effectiveness of this training was assessed in a sample of 59 doctoral students working in the biological and social (...) sciences using a pre–post design with follow-up and a series of ethical decision-making measures serving as the outcome variable. Results showed not only that this training led to sizable gains in ethical decision making but also that these gains were maintained over time. The implications of these findings for ethics training in the sciences are discussed. (shrink)

“Dance” has been associated with many psychophysiological and medical health effects. However, varying definitions of what constitute “dance” have led to a rather heterogenous body of evidence about such potential effects, leaving the picture piecemeal at best. It remains unclear what exact parameters may be driving positive effects. We believe that this heterogeneity of evidence is partly due to a lack of a clear definition of dance for such empirical purposes. A differentiation is needed between (a) the effects on the (...) individual when the activity of “dancing” is enjoyedas a dancerwithindifferent dance domains(e.g.,professional/”high-art”type of dance,eroticdance,religiousdance,clubdancing,Dance Movement Therapy(DMT), and what is commonly known ashobby, recreationalorsocialdance), and (b) the effects on the individual within these different domains, as a dancer of thedifferent dance styles(solo dance, partnering dance, group dance; and all the different styles within these). Another separate category of dance engagement is, not as a dancer, but as a spectator of all of the above. “Watching dance” as part of an audience has its own set of psychophysiological and neurocognitive effects on the individual, and depends on the context where dance is witnessed. With the help of dance professionals, we first outline some different dance domains and dance styles, and outline aspects that differentiate them, and that may, therefore, cause differential empirical findings when compared regardless (e.g., amount of interpersonal contact, physical exertion, context, cognitive demand, type of movements, complexity of technique and ratio of choreography/improvisation). Then, we outline commonalities between all dance styles. We identify six basic components that are part of any dance practice, as part of a continuum, and review and discuss available research for each of them concerning the possible health and wellbeing effects of each of these components, and how they may relate to the psychophysiological and health effects that are reported for “dancing”: (1) rhythm and music, (2) sociality, (3) technique and fitness, (4) connection and connectedness (self-intimation), (5) flow and mindfulness, (6) aesthetic emotions and imagination. Future research efforts might take into account the important differences between types of dance activities, as well as the six components, for a more targeted assessment of how “dancing” affects the human body. (shrink)

Background The use of lengthy, detailed, and complex informed consent forms is of paramount concern in biomedical research as it may not truly promote the rights and interests of research participants. The extent of information in ICFs has been the subject of debates for decades; however, no clear guidance is given. Thus, the objective of this study was to determine the perspectives of research participants about the type and extent of information they need when they are invited to participate in (...) biomedical research. Methods This multi-center, cross-sectional, descriptive survey was conducted at 54 study sites in seven Asia-Pacific countries. A modified Likert-scale questionnaire was used to determine the importance of each element in the ICF among research participants of a biomedical study, with an anchored rating scale from 1 to 5. Results Of the 2484 questionnaires distributed, 2113 were returned. The majority of respondents considered most elements required in the ICF to be ‘moderately important’ to ‘very important’ for their decision making. Major foreseeable risk, direct benefit, and common adverse effects of the intervention were considered to be of most concerned elements in the ICF. Conclusions Research participants would like to be informed of the ICF elements required by ethical guidelines and regulations; however, the importance of each element varied, e.g., risk and benefit associated with research participants were considered to be more important than the general nature or technical details of research. Using a participant-oriented approach by providing more details of the participant-interested elements while avoiding unnecessarily lengthy details of other less important elements would enhance the quality of the ICF. (shrink)

This chapter describes the potential far‐reaching consequences of contemplative higher education for the fields of science and medicine.

Evolutionary developmental biology (evo-devo) has undergone dramatic transformations since its emergence as a distinct discipline. This paper aims to highlight the scope, power, and future promise of evo-devo to transform and unify diverse aspects of biology. We articulate key questions at the core of eleven biological disciplines—from Evolution, Development, Paleontology, and Neurobiology to Cellular and Molecular Biology, Quantitative Genetics, Human Diseases, Ecology, Agriculture and Science Education, and lastly, Evolutionary Developmental Biology itself—and discuss why evo-devo is uniquely situated to substantially improve (...) our ability to find meaningful answers to these fundamental questions. We posit that the tools, concepts, and ways of thinking developed by evo-devo have profound potential to advance, integrate, and unify biological sciences as well as inform policy decisions and illuminate science education. We look to the next generation of evolutionary developmental biologists to help shape this process as we confront the scientific challenges of the 21st century. (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)

In this article, we outline a novel approach to understanding the role of responsibility in health promotion. Efforts to tackle chronic disease have led to an emphasis on personal responsibility and the identification of ways in which people can ‘take responsibility’ for their health by avoiding risk factors such as smoking and over-eating. We argue that the extent to which agents can be considered responsible for their health-related behaviour is limited, and as such, state health promotion which assumes certain forms (...) of moral responsibility should be avoided. This indicates that some approaches to health promotion ought not to be employed. We suggest, however, that another form of responsibility might be more appropriately identified. This is based on the claim that agents have prudential reasons to maintain their health, in order to pursue those things which make their lives go well—i.e. that maintenance of a certain level of health is rational for many agents, given their pleasures and plans. On this basis, we propose that agents have a self-regarding prudential responsibility to maintain their health. We outline the implications of a prudential responsibility approach to health promotion. (shrink)

Just Ecological Integrity presents a collection of revised and expanded essays originating from the international conference "Connecting Environmental Ethics, Ecological Integrity, and Health in the New Millennium" held in San Jose, Costa Rica in June 2000. It is a cooperative venture of the Global Ecological Integrity Project and the Earth Charter Initiative.

Properties sometimes attributed to the “particle” aspect of a neutron, e.g., mass and magnetic moment, cannot straightforwardly be regarded in the Bohm interpretation of quantum mechanics as localized at the hypothetical position of the particle. This is shown by examining a series of effects in neutron interferometry. A related thought-experiment also provides a variation of a recent demonstration that which-way detectors can appear to behave anomolously in the Bohm theory.