In the history of palliative care, all roads lead back to Dame Cicely Saunders, a remarkable social worker/nurse/physician who promoted the concept of total pain and founded the first modern hospic...

There is little information about the content of ethics consultations in pediatrics. We sought to describe the reasons for consultation and ethical principles addressed during EC in pediatrics through retrospective review and directed content analysis of EC records at St. Jude Children's Research Hospital. Patient-based EC were highly complex and often involved evaluation of parental decision making, particularly consideration of the risks and benefits of a proposed medical intervention, and the physician's fiduciary responsibility to the patient. Nonpatient consultations provided guidance (...) in the development of institutional policies that would broadly affect patients and families. This is one of the few existing reviews of the content of pediatric EC and indicates that the distribution of ethical issues and reasons for moral distress are different than with adults. Pediatric EC often facilitates complex decision making among multiple stakeholders, and further prospective research is need.. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 18-20, October 2012.

PURPOSE: There is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants. METHODS: A multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer. Respondents indicated their preferred mode of communication of research results with respect to implications; timing, provider, and content of the results; reasons for and against (...) providing results; and barriers to providing results. RESULTS: Four hundred nine parents (including 19 of deceased children) and 86 adolescents responded. Most parents (n = 385; 94.2%) felt that they had a strong right to research results. For positive results, most wanted a letter or e-mail summary (n = 238; 58.2%) or a phone call followed by a letter (n = 100; 24.4%). If the results were negative, phone call (n = 136; 33.3%) or personal visits (n = 150; 36.7%) were preferred. Parents wanted the summary to include long-term sequelae and suggestions for participants (n = 341; 83.4%), effect on future treatments (n = 341; 83.4%), and subsequent research steps (n = 284; 69.5%). Understanding the researcher was a main concern about receiving results (n = 145; 35.5%). Parents felt that results provide information to support quality of life (n = 315; 77%) and raise public awareness of research (n = 282; 68.9%). Adolescents identified similar preferences. CONCLUSION: Parents of children with cancer and adolescents with cancer feel strongly that they have a right to be offered research results and have specific preferences of how and what information should be communicated. (shrink)

Background: Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. Methods: This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (...) (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Results: Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). Conclusions: AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials. (shrink)

How do newborns learn to recognize objects? According to temporal learning models in computational neuroscience, the brain constructs object representations by extracting smoothly changing features from the environment. To date, however, it is unknown whether newborns depend on smoothly changing features to build invariant object representations. Here, we used an automated controlled-rearing method to examine whether visual experience with smoothly changing features facilitates the development of view-invariant object recognition in a newborn animal model—the domestic chick. When newborn chicks were reared (...) with a virtual object that moved smoothly over time, the chicks created view-invariant representations that were selective for object identity and tolerant to viewpoint changes. Conversely, when newborn chicks were reared with a temporally non-smooth object, the chicks developed less selectivity for identity features and less tolerance to viewpoint changes. These results provide evidence for a “smoothness constraint” on the development of invariant object recognition and indicate that newborns leverage the temporal smoothness of natural visual environments to build abstract mental models of objects. (shrink)

In this book, Justin N. Bonanno builds off of the recent philosophical work on Walker Percy’s writings. While it is valuable to appreciate Percy as a novelist, Bonanno approaches Percy from the perspective of Continental philosophy and the rhetorical tradition. Unpacking the works of several key authors that influenced Percy (e.g. Sartre and Heidegger), Bonanno offers a fresh philosophical account of Percy's ideas concerning the relationship between symbols and existence. In particular, he focuses on how Percy’s ideas emerge from (...) the thought of Ernst Cassirer, Susanne Langer, Jacques Maritain, Jean-Paul Sartre, Gabriel Marcel, Martin Heidegger, Viktor Shklovsky, Søren Kierkegaard, and St. Thomas Aquinas. (shrink)

Gene discovery reveals new biology, expands the utility of marker‐assisted selection, and enables targeted mutagenesis. Still, such discoveries can take over a decade. We present a general strategy, “Agile Genetics,” that uses nested, structured populations to overcome common limits on gene resolution. Extensive simulation work on realistic genetic architectures shows that, at population sizes of >5000 samples, single gene‐resolution can be achieved using bulk segregant pools. At this scale, read depth and technical replication become major drivers of resolution. Emerging enrichment (...) methods to address coverage are on the horizon; we describe one possibility – iterative depth sequencing (ID‐seq). In addition, graph‐based pangenomics in experimental populations will continue to maximize accuracy and improve interpretation. Based on this merger of agronomic scale with molecular and bioinformatic innovation, we predict a new age of rapid gene discovery. (shrink)

Psychiatry is rapidly adopting digital phenotyping and artificial intelligence/machine learning tools to study mental illness based on tracking participants’ locations, online activity, phone and text message usage, heart rate, sleep, physical activity, and more. Existing ethical frameworks for return of individual research results (IRRs) are inadequate to guide researchers for when, if, and how to return this unprecedented number of potentially sensitive results about each participant’s real-world behavior. To address this gap, we convened an interdisciplinary expert working group, supported by (...) a National Institute of Mental Health grant. Building on established guidelines and the emerging norm of returning results in participant-centered research, we present a novel framework specific to the ethical, legal, and social implications of returning IRRs in digital phenotyping research. Our framework offers researchers, clinicians, and Institutional Review Boards (IRBs) urgently needed guidance, and the principles developed here in the context of psychiatry will be readily adaptable to other therapeutic areas. (shrink)

What role does experience play in the development of face recognition? A growing body of evidence indicates that newborn brains need slowly changing visual experiences to develop accurate visual recognition abilities. All of the work supporting this “slowness constraint” on visual development comes from studies testing basic‐level object recognition. Here, we present the results of controlled‐rearing experiments that provide evidence for a slowness constraint on the development of face recognition, a prototypical subordinate‐level object recognition task. We found that (1) newborn (...) chicks can rapidly develop view‐invariant face recognition and (2) the development of this ability relies on experience with slowly moving faces. When chicks were reared with quickly moving faces, they built distorted face representations that largely lacked invariance to viewpoint changes, effectively “breaking” their face recognition abilities. These results provide causal evidence that slowly changing visual experiences play a critical role in the development of face recognition, akin to basic‐level object recognition. Thus, face recognition is not a hardwired property of vision but is learned rapidly as the visual system adapts to the temporal structure of the animal's visual environment. (shrink)

The world’s third largest producer of scientific research, Germany, is the origin of the research university and the independent, extra-university research institute. Its dual-pillar research policy differentiates these organizational forms functionally: universities specialize in advanced research-based teaching; institutes specialize intensely on research. Over the past decades this policy affected each sector differently: while universities suffered a lingering “legitimation crisis,” institutes enjoyed deepening “favored sponsorship”—financial and reputational advantages. Universities led the nation’s reestablishment of scientific prominence among the highly competitive European and (...) global science systems after WWII. But sectoral analysis of contributions to science, technology, engineering, mathematics, and medical and health journal publications finds that Germany’s small to medium-sized independent research institutes have made significant, growing contributions, particularly in publishing in higher impact journals proportionally more than their size. Simultaneously—despite dual-pillar policy implications—the university sector continues to be absolutely and relatively successful; not eclipsed by the institutes. Universities have consistently produced two-thirds of the nation’s publications in the highest quality journals since at least 1980 and have increased publications at a logarithmic rate; higher than the international mean. Indeed, they led Germany into the global mega-science style of production. Contrary to assumed benefits of functional differentiation, our results indicate that relative to their size, each sector has produced approximately similar publication records. While institutes have succeeded, the larger university sector, despite much less funding growth, has remained fundamental to German science production. Considering these findings, we discuss the future utility of the dual-pillar policy. (shrink)

In recent years, cognitive neuroscientists have began to explore the process of how sensory information gains access to awareness. To further probe this process, event-related functional magnetic resonance imaging was used while testing subjects with a paradigm known as the “attentional blink.” In this paradigm, visually presented information sporadically fails to reach awareness. It was found that the magnitude and time course of activation within the anterior cingulate , medial prefrontal cortex , and frontopolar cortex predicted whether or not information (...) was consciously perceived during the critical period for the attentional blink. These results are discussed in light of a neural framework for conscious processing. (shrink)

Analysis of the mechanisms underlying sex determination and sex differentiation in Drosophila has provided evidence for a complex but comprehensible regulatory hierarchy governing these developmental decisions. It is suggested here that the pattern of sexual differentiation and dosage compensation characteristic of the male is a default regulatory state. Recent results have provided, in addition, some surprising and intriguing conclusions: (1) that several of the critical controlling genes produce more transcripts than was predicted from the genetic analyses; (2) that setting of (...) the alternative sex‐specific states of the doublesex (dsx) locus involves differential transcript processing; and (3) that some aspects of sexual differentation require the prolonged action of certain elements of the regulatory hierarchy. These findings are discussed in connection with the current model of sex determination in Drosophila. (shrink)

Intra- and intergroup conflict are likely to have been recurrent features of human evolutionary history; however, little research has investigated the factors that affect men’s combat alliance decisions. The current study investigated whether features of previous one-on-one combat with an opponent affect men’s interest in allying with that opponent for future group combat. Fifty-eight undergraduate men recruited from a psychology department subject pool participated in a one-on-one laboratory fight simulation. We manipulated fight outcome, perceived fighter health asymmetry, and the presence (...) of a witness over six sets of five rounds of fighting. Following each set, we asked men how interested they would be in allying with their opponent for future group combat. We found that men were more interested in allying with their opponent for future group combat if their opponent won the fight or if a witness was present, but perceived fighter-health asymmetry did not affect men’s decision to ally with their opponent. Exploratory analyses revealed a two-way interaction between fight outcome and the presence of a witness, such that winners without a witness present expressed less interest in allying with their opponent for future group combat. Our findings suggest that men attend to the benefits of allying with a man who has demonstrated relatively superior fighting ability. Alliance with a previous opponent for group combat may vary with the relationship value of the opponent and the utility of demonstrating cooperativeness to third-party observers. These findings inform our understanding of coalition formation. (shrink)

Many of us believe that we can and do have individual obligations to refrain from contributing to massive collective harms – say, from producing luxury greenhouse gas (GHG) emissions; however, our individual actions are so small as to be practically meaningless. Can we then, justify the intuition that we ought to refrain? In this paper, we argue that this debate may have been mis-framed. Rather than investigating whether or not we have obligations to refrain from contributing to collective action, perhaps (...) we should ask whether we have reason to do so. However, this framing brings challenges of its own, and so we close by asking what problems are generated if we focus on these questions of ‘contributory ethics’. (shrink)

Advances in technology are bringing greater insight into the mind, raising a host of privacy concerns. However, the basic psychological mechanisms underlying the perception of privacy violations are poorly understood. Here, we explore the relation between the perception of privacy violations and access to information related to one’s “self.” In two studies using demographically diverse samples, we find that privacy violations resulting from various monitoring technologies are mediated by the extent to which the monitoring is thought to provide access to (...) self-relevant information, and generally neuromonitoring did not rate among the more invasive monitoring types. However, brain monitoring was judged to be more of a privacy violation when described as providing access to self-relevant information than when no such access was possible, and control participants did not judge the invasiveness of neuromonitoring any differently than those told it provided no access to self-relevant information. (shrink)

This paper argues that individuals in many high-income countries typically have moral reasons to limit their beef consumption and consume plant-based protein instead, given the negative effects of beef production and consumption. Beef production is a significant source of agricultural greenhouse gas emissions and other environmental impacts, high levels of beef consumption are associated with health risks, and some cattle production systems raise animal welfare concerns. These negative effects matter, from a variety of moral perspectives, and give us collective moral (...) reasons to reduce beef production and consumption. But, as some ethicists have argued, we cannot draw a straight line from the ethics of production to the ethics of consumption: even if a production system is morally impermissible, this does not mean that any given individual has moral reasons to stop consuming the products of that system, given how miniscule one individual’s contributions are. This paper considers how to connect those dots. We consider three distinct lines of argument in support of the conclusion that individuals have moral reasons to limit their beef consumption and shift to plant-based protein, and we consider objections to each argument. This argument applies to individuals in high beef-consuming and high greenhouse gas-emitting high-income countries, though we make this argument with a specific focus on the United States. (shrink)

BackgroundThe wellbeing of people living with dementia and their family caregivers may be impacted by stigma, changing roles, and limited access to meaningful opportunities as a dyad. Group therapeutic songwriting and qualitative interviews have been utilized in music therapy research to promote the voices of people with dementia and family caregivers participating in separate songwriting groups but not together as dyads.ProceduresThis study aimed to explore how ten people with dementia/family caregiver dyads experienced a 6-week group TSW program. Dyads participated in (...) homogenous TSW groups involving 2–4 dyads who were either living together in the community or living separately because the person with dementia resided in a care home. The TSW program, informed by personhood, couplehood, family centered and group process frameworks, involved creating original lyrics through song parody and song collage. Qualified Music Therapists facilitated sessions and interviewed each dyad separately. Interviews were analyzed using interpretative phenomenological analysis.FindingsFive recurrent group themes were developed, indicating group TSW: was a positive shared experience, benefiting both members of the dyad and motivating further engagement with music; stimulated mental processes and reignited participants’ interests and skills; provided meaningful opportunities for reflection and connection with memories and life experiences; and prompted interaction and collaboration, leading to social connections, empathic relationships and experiences of inclusion. Participants also highlighted how: the facilitated process supported engagement, highlighting abilities and challenging doubts.ConclusionDyads identified group TSW as an opportunity to recognize strengths, voice ideas and opinions, share meaningful experiences, and do “more with music.” Participants valued TSW as a new, creative and stimulating experience that enabled connection with self and others and led to feelings of pride and achievement. Our findings further recognize how therapeutic intention and approach were reflected in participants’ engagement and responses regardless of dementia stage and type, dyad relationship, or musical background. This research may broaden perspectives and expand understanding about how people with dementia and their family caregivers access and engage in music therapy. (shrink)

ABSTRACTMemory bias is a risk factor for depression. In two independent studies, the efficacy of one CBM-Memory session on negative memory bias and depressive symptoms was tested in vulnerable samples. We compared positive to neutral CBM-Memory trainings in highly-ruminating individuals and individuals with elevated depressive symptoms. In both studies, participants studied positive, neutral, and negative Swahili words paired with their translations. In five study–test blocks, they were then prompted to retrieve either only the positive or neutral translations. Immediately following the (...) training and one week later, we tested cued recall of all translations and autobiographical memory bias; and also measured mood, depressive symptoms, and rumination. Retrieval practice resulted in training-congruent recall both immediately after and one week after the training. Overall, there was no differential decrease in symptoms or difference in autobiographical memory bias between the tra... (shrink)

When a fragmented line-drawing of an object moves relative to a background of randomly oriented lines, the previously hidden object can be segregated from the background and consequently enters awareness. In this shape-from-motion paradigm, the percept of the object briefly persists after the motion stops, demonstrating the maintenance of a bound percept in awareness. This study investigated how the manipulation of object features that are crucial to recognition influences both the binding process and the maintenance of objects in awareness. Overall, (...) we found that objects that took longer to recognize were nonetheless maintained in awareness for longer. We argue that this effect is mediated by additional elaborative processing that is required to bind these less recognizable forms, which generates stronger and more robust representations. These representations are then more easily maintained in awareness, suggesting an important role of elaborative mechanisms for conscious representations. (shrink)