The Proceedings of the National Summit on Legal Preparedness for Obesity Prevention and Control is based on a two-part conceptual framework composed of public health and legal perspectives. The public health perspective comprises the six target areas and intervention settings that are the focus of the obesity prevention and control efforts of the Centers for Disease Control and Prevention.This paper presents the legal perspective. Legal preparedness in public health is the underpinning of the framework for the four “assessment” papers and (...) the four “action” papers that are integral to the application of public health law to any particular health issue. In addition, this paper gives real-world grounding to the legal framework through examples that illustrate the four core elements of legal preparedness in public health that are at work in obesity prevention and control. (shrink)

The Proceedings of the National Summit on Legal Preparedness for Obesity Prevention and Control is based on a two-part conceptual framework composed of public health and legal perspectives. The public health perspective comprises the six target areas and intervention settings that are the focus of the obesity prevention and control efforts of the Centers for Disease Control and Prevention.This paper presents the legal perspective. Legal preparedness in public health is the underpinning of the framework for the four “assessment” papers and (...) the four “action” papers that are integral to the application of public health law to any particular health issue. In addition, this paper gives real-world grounding to the legal framework through examples that illustrate the four core elements of legal preparedness in public health that are at work in obesity prevention and control. (shrink)

Although theoretically rigorous, the book is comprehensible to the beginning qualitative researcher.

This article examines factors related to husbands' contribution to housework when their wives become newly impaired. Data are from a sample of 319 married couples who participated in the National Survey of Families and Households, and in which wives developed physical limitations between baseline and five-year follow-up interviews. Using ordinary least squares regression, we found that husbands who have egalitarian attitudes toward marital roles and are happy in their marriage at baseline do more housework at follow-up than husbands who are (...) traditional and/or are less happy. Given the slow rate of change in household division of labor, the lack of public policies to support people with impairment and family caregiving disproportionately burdens women. (shrink)

Individuals with a variety of disabilities benefit greatly from the ADA provision of easy public access with their service dogs. However, the growing problem of non-disabled individuals passing off their pets as service dogs both threatens public safety and can result in denial of access for legitimate service dog teams. We argue that requiring certification of service dog teams and furnishing qualified teams with state-issued ID tags, following a process similar to that for obtaining accessible-parking placards, is the least intrusive (...) way to protect access for legitimate teams and protect public safety. While some consider a certification requirement for service dog teams to be burdensome, balanced against the harms posed by easy public access for untrained or inappropriate dogs, the mild burden is justified. (shrink)

At first glance the three eukaryotic protein translocation machineries – the ER‐associated degradation (ERAD) transport apparatus of the endoplasmic reticulum, the peroxisomal importomer and SELMA, the pre‐protein translocator of complex plastids – appear quite different. However, mechanistic comparisons and phylogenetic analyses presented here suggest that all three translocation machineries share a common ancestral origin, which highlights the recycling of pre‐existing components as an effective evolutionary driving force.Editor's suggested further reading in BioEssays ERAD ubiquitin ligases Abstract.

The avocado (Persea americana) is a major crop commodity worldwide. Moreover, avocado, a paleopolyploid, is an evolutionary “outpost” among flowering plants, representing a basal lineage (the magnoliid clade) near the origin of the flowering plants themselves. Following centuries of selective breeding, avocado germplasm has been characterized at the level of microsatellite and RFLP markers. Nonetheless, little is known beyond these general diversity estimates, and much work remains to be done to develop avocado as a major subtropical‐zone crop. Among the goals (...) of avocado improvement are to develop varieties with fruit that will “store” better on the tree, show uniform ripening and have better post‐harvest storage. Avocado transcriptome sequencing, genome mapping and partial genomic sequencing will represent a major step toward the goal of sequencing the entire avocado genome, which is expected to aid in improving avocado varieties and production, as well as understanding the evolution of flowers from non‐flowering seed plants (gymnosperms). Additionally, continued evolutionary and other comparative studies of flower and fruit development in different avocado strains can be accomplished at the gene expression level, including in comparison with avocado relatives, and these should provide important insights into the genetic regulation of fruit development in basal angiosperms. BioEssays 30:386–396, 2008. © 2008 Wiley Periodicals, Inc. (shrink)

Background Nurses experienced intense ethical and moral challenges during the COVID-19 pandemic. Our 2020 qualitative parent study of frontline nurses’ experiences during the COVID-19 pandemic identified ethics as a cross-cutting theme with six subthemes: moral dilemmas, moral uncertainty, moral distress, moral injury, moral outrage, and moral courage. We re-analyzed ethics-related findings in light of refined definitions of ethics concepts. Research aim To analyze frontline U.S. nurses’ experiences of ethics during the COVID-19 pandemic. Research design Qualitative analysis using a directed content (...) methodology. Participants and research context The study included 43 nurses from three major metropolitan academic medical centers and one community hospital in the northeastern, mid-Atlantic, midwestern, and western United States. Ethical considerations Participant privacy and data confidentiality were addressed. Findings Moral dilemmas arose from many situations, most frequently related to balancing safety and patient care. Moral uncertainty commonly arose from lacking health information or evidence about options. Moral distress occurred when nurses knew the right thing to do, but were prevented from doing so, including with end-of-life issues. Moral injury (accompanied by suffering, shame, or guilt) occurred after doing, seeing, or experiencing wrongdoing, often involving authority figures. Nurses expressed moral outrage at events and people within and outside healthcare. Despite difficult ethical situations, some nurses exemplified moral courage, sometimes by resisting policies they perceived as preventing compassionate care, guided by thinking about what was best for patients. Discussion This content analysis of ethics-related subthemes revealed conceptual characteristics and clarified distinctions with corresponding exemplars. Conceptual clarity may inform responses and interventions to address ethical quandaries in nursing practice. Conclusions Ethics education in nursing must address the moral dilemmas of pandemics, disasters, and other crises. Nurses need time and resources to heal from trying to provide the best care when no ideal option was available. (shrink)

The Drosophila salivary gland has emerged as an outstanding model system for the process of organ formation. Many of the component steps, from initial regional specification through cell specialization and morphogenesis, are known and many of the genes required for these different processes have been identified. The salivary gland is a relatively simple organ; the entire gland comprises of only two major cell types, which derive from a single contiguous primordium. Salivary cells cease dividing once they are specified, and organ (...) growth is achieved simply by an increase in size of individual cells, thus eliminating concerns about the potential unequal distribution of determinants during mitosis. Drosophila salivary glands form by the same cellular mechanisms as organs in higher organisms, including regulated cell shape changes, cell intercalation and directed cell migration. Thus, learning how these events are coordinated for tissue morphogenesis in an organism for which the genetic and molecular tools are unsurpassed should provide excellent paradigms for dissecting related processes in the more intricate organs of more complicated species. BioEssays 23:901–911, 2001. © 2001 John Wiley & Sons, Inc. (shrink)

Concerns regarding corporate ethics have grown steadily throughout the past decade. In order to remain competitive, many organizational leaders are faced with the challenge of creating an ethical environment within their organization. A model is presented showing the process and elements necessary for the institutionalization of organizational ethics. The transformational leadership style lends itself well to the creation of an ethical environment and is suggested as a means to facilitate the institutionalization of corporate ethics. Finally, the benefits of using transformational (...) leadership are demonstrated through the components of a psychological contract, organizational commitment, and ethical culture to institutionalize organizational ethics. (shrink)

A fictional text is commonly viewed as constituting an invitation to play a certain game of make-believe, with the individual sentences written by the author providing the propositions we are to imagine and/or accept as true within the fiction. However, we can’t always take the text at face value. What narratologists call ‘unreliable narrators’ may present a confused or misleading picture of the fictional world. Meanwhile there has been a debate in philosophy about so-called ‘imaginative resistance’ in which we are (...) inclined to resist imagining (or even accepting as true in the fiction) what’s explicitly stated in the text. But if we can’t take the text’s word for it, how do we determine what’s true in a fiction? We propose an account of fiction interpretation in a dynamic setting (a version of DRT with a mechanism for opening, updating, and closing temporary ‘workspaces’) and combine this framework with belief revision logic. With these tools in hand we turn to modelling imaginative resistance and unreliable narrators. (shrink)

The Intergovernmental Platform on Biodiversity and Ecosystem Services have recently launched themselves as the UN-sanctioned instrument for conserving nature. They seek to establish themselves as the authority in this field alongside the well-known Intergovernmental Panel on Climate Change in climate science. Quickly following or even before recent publication of their conceptual framework in two biology journals, they were already underway building upon it. This headlong push, we believe, is ill advised. We show how the framework is unsound as a foundation (...) for further work—in a number of ways and perhaps even by its authors’ own lights. It is therefore urgent that the IPBES thoroughly and thoughtfully reconsider their framework before too much effort is wasted. (shrink)

An understanding of the nature of advanced industrial economies is derived from this extensive investigation of the ways in which the boundaries of the political have changed in Europe since the 1960s.

Ideas of love within religion are usually driven by one of two mythologies – either a personal God who commands love or a mystical God of ineffable love – but both are inadequate for motivating love of neighbour. The first tends towards legalism and the second offers no cognitive guidance. The situation is further complicated by there being different understandings of love of neighbour in the various Abrahamic religions, as exemplified in the approaches of two philosophers, Søren Kierkegaard and Emmanuel (...) Levinas. A better approach is therefore to explore actual practices of love in everyday life, and to discover how love might be performed openly and creatively. One such practice is recognition of vulnerability, and this too is often driven by a mythology, in this case one marked by fear, and by a violence either imposed or avoided. One paradigmatic example is the vulnerability felt by speakers, especially women, in front of an audience. A turning from wilful ignorance of vulnerability and a turning to reliance on collective work, modelled on an awareness of mutual vulnerability and openness to the unknown, will help to change our philosophical and social imaginary. The dark myth of vulnerability can be transformed into finding opportunities in vulnerability for openness to affection and so to an enhancement of life. It is only from the perspective of this new imaginary, and from everyday practices of it, that the double love-command – love of God and love of neighbour – will function as any kind of common ground between religions. (shrink)

Nature conservation in the Anthropocene predominantly supposes that human-caused changes have worsened nature’s condition, which warrants undertaking conservation projects that actively manage or manipulate nature to improve it in quality or quantity. This essay surveys, by category, reasons and arguments for pursuing these projects. It finds key reasons to be normatively unimportant and key arguments incomplete or invalid. Conservation on this basis does not take nature seriously because it acts “for no good reason.” Finally, by attending to underlying sources of (...) this general failure, the essay suggests how a different view of the value of nature and its conservation may achieve a sounder footing. (shrink)

Author of "Kubla Khan" and the epic "The Rime of the Ancient Mariner," Samuel Taylor Coleridge is remembered principally for his contributions as a romantic poet. This innovative reconsideration of Coleridge's thought and career not only demonstrates his importance as a philosopher but also recovers romanticism as both an aesthetic and a political movement. Pamela Edwards radically departs from classic theories of Coleridge's development and reads his writing within the framework of a constantly shifting political and social landscape. Drawing (...) on the ideology, rhetoric, and institutional theory at the turn of the late British Enlightenment, Edwards unearths the fundamental continuities in Coleridge's writing during the revolutionary period of 1794 to 1834, paying particular attention to the rhetoric of Coleridge's pamphlet and miscellaneous writings, the journalism of the Napoleonic years, his philosophical and ultimately political treatises within the contexts of his notebooks and letters, and his readings and intellectual friendships. What emerges is a clearer understanding of Coleridge's political philosophy and his contributions to the origins and ideology of British Liberalism. Coleridge's interest in history, nature, and law as inherently interconnected projects producing an ideal or scientific reading of society reveals a developed progressive social and cultural state theory anchored in individual conscience, moral autonomy, and a civic and participatory human agency. If the Statesman could understand and finally master this scientific view of the world, he would be able not only to adjust political and social institutions to comprehend the historical contingencies of the moment but to see through the problem of the moment to the dynamic of change itself. (shrink)

Nature conservation in the Anthropocene predominantly supposes that human-caused changes have worsened nature’s condition, which warrants undertaking conservation projects that actively manage or manipulate nature to improve it in quality or quantity. This essay surveys, by category, reasons and arguments for pursuing these projects. It finds key reasons to be normatively unimportant and key arguments incomplete or invalid. Conservation on this basis does not take nature seriously because it acts “for no good reason.” Finally, by attending to underlying sources of (...) this general failure, the essay suggests how a different view of the value of nature and its conservation may achieve a sounder footing. (shrink)

Background and aims: Recent investigations have highlighted the value of neuropsychological testing for the assessment and screening of Alcohol-Related Brain Damage. The aim of the present study was to evaluate the suitability of the Addenbrooke’s Cognitive Examination and the Repeatable Battery for the Assessment of Neuropsychological Status for this purpose. Methods: Comparing 28 participants with ARBD and 30 alcohol-dependent participants without ARBD we calculated Area Under the Curve statistics, sensitivity and specificity values, base-rate adjusted predictive values, and likelihood ratios for (...) both tests. Results: High levels of screening accuracy were found for the total scores of both the ACE-III and RBANS at multiple cut-off points. Removing participants with a history of polysubstance from the samples improved the diagnostic capabilities of the RBANS substantially, while only minor improvements to the ACE-III’s accuracy were observed. Conclusions: Overall, both the ACE-III and RBANS are suitable tools for ARBD screening within an alcohol-dependent population, though the RBANS is the superior of the two. Clinicians using these tools for ARBD screening should be cautious of false-positive outcomes and should therefore combine them with other assessment methods and more detailed neuropsychological testing before reaching diagnostic decisions. (shrink)

Computing with logic / Maier, D., Warren, D.S.

This essay explores a previously unexplored suggestion for combining consideration of aesthetics with considerations of vice and virtue to justify, not merely claims about nature’s beauty or its preservation, but landscape-transforming conservation projects. Its discussion is not univocal. On the one hand, it suggests that vices associated with humans assisting a creature’s journey to a new landscape make that organism’s presence on that landscape ugly. According to this suggestion, the creature may be regarded as trash, which would be virtuous to (...) remove. On the other hand, it worries that the argument ultimately traces this circle: It is wrong to fail to remove the creature because this failure would be blameworthy; and failure to remove would be blameworthy because wrong. (shrink)

Assisted migration, an ecosystem engineering technology, is receiving increasing attention and significant support as a means to save biodiversity in a changing climate. Few substantive, or not obviously deficient, reasons have been offered for why pursuing this conservation goal via these means might be good. Some proponents of AM, including those who identify themselves as “pragmatists,” even suggest there is little need for such argument. We survey the principal reasons offered for AM, as well as reasons offered for not offering (...) reasons. As exemplified by the case for translocating whitebark pine, which may at first seem especially strong, we note the incongruence of framing the goal of AM in terms of “saving biodiversity,” neglect of some crucial moral questions, marginalization of normative and scientific context when AM is cast as the lesser of two evils in a “crisis,” doubtful validity and, in any case, marginal importance of arguments that AM projects ought to be undertaken, inconsistent use of scientific facts, and omission of science that counters sanguine assessments. All told—even in cases such as whitebark pine for which AM may seem most defensible—there is little reason to think that AM projects are good as means to “save biodiversity,” or good as means to other goals that have accreted into arguments for these projects. (shrink)

Introduction : last stands -- The world is weary of the past -- Reconstruction on a world scale -- The human zoo -- States of exception, exceptional states -- Postscript : toward Leviathan 3.0?

In the classical Turing test, participants are challenged to tell whether they are interacting with another human being or with a machine. The way the interaction takes place is not direct, but a distant conversation through computer screen messages. Basic forms of interaction are face-to-face and embodied, context-dependent and based on the detection of reciprocal sensorimotor contingencies. Our idea is that interaction detection requires the integration of proprioceptive and interoceptive patterns with sensorimotor patterns, within quite short time lapses, so that (...) they appear as mutually contingent, as reciprocal. In other words, the experience of interaction takes place when sensorimotor patterns are contingent upon one’s own movements, and vice versa. I react to your movement, you react to mine. When I notice both components, I come to experience an interaction. Therefore, we designed a “minimal” Turing test to investigate how much information is required to detect these reciprocal sensorimotor contingencies. Using a new version of the perceptual crossing paradigm, we tested whether participants resorted to interaction detection to tell apart human from machine agents in repeated encounters with these agents. In two studies, we presented participants with movements of a human agent, either online or offline, and movements of a computerized oscillatory agent in three different blocks. In each block, either auditory or audiovisual feedback was provided along each trial. Analysis of participants’ explicit responses and of the implicit information subsumed in the dynamics of their series will reveal evidence that participants use the reciprocal sensorimotor contingencies within short time windows. For a machine to pass this minimal Turing test, it should be able to generate this sort of reciprocal contingencies. (shrink)

Patient report of functioning is one component of the neurocognitive exam following traumatic brain injury, and standardized patient-reported outcomes measures are useful to track outcomes during rehabilitation. The Traumatic Brain Injury Quality of Life measurement system is a TBI-specific extension of the PROMIS and Neuro-QoL measurement systems that includes 20 item banks across physical, emotional, social, and cognitive domains. Previous research has evaluated the responsiveness of the TBI-QOL measures in community-dwelling individuals and found clinically important change over a 6-month assessment (...) interval in a sample of individuals who were on average 5 years post-injury. In the present study, we report on the responsiveness of the TBI-QOL Cognition–General Concerns and Executive Function item bank scores and the Cognitive Health Composite scores in a recently injured sample over a 1-year study period. Data from 128 participants with complicated mild, moderate, or severe TBI within the previous 6 months were evaluated. The majority of the sample was male, white, and non-Hispanic. The participants were 18–92 years of age and were first evaluated from 0 to 5 months post-injury. Eighty participants completed the 1-year follow-up assessment. Results show acceptable standard response mean values for all measures and minimal detectable change values ranging from 8.2 to 8.8 T-score points for Cognition–General Concerns and Executive Functioning measures. Anchor rating analysis revealed that changes in scores on the Executive Function item bank and the Cognitive Health Composite were meaningfully associated with participant-reported changes in the areas of attention, multitasking, and memory. Evaluation of change score differences by a variety of clinical indicators demonstrated a small but significant difference in the three TBI-QOL change scores by TBI injury severity grouping. These results support the responsiveness of the TBI-QOL cognition measures in newly injured individuals and provides information on the minimal important differences for the TBI-QOL cognition measures, which can be used for score interpretation by clinicians and researchers seeking patient-reported outcome measures of self-reported cognitive QOL after TBI. (shrink)

This volume contains an array of essays that reflect, and reflect upon, the recent revival of scholarly interest in the self and consciousness. Various relevant issues are addressed in conceptually challenging ways, such as how consciousness and different forms of self-relevant experience develop in infancy and childhood and are related to the acquisition of skill; the role of the self in social development; the phenomenology of being conscious and its metapsychological implications; and the cultural foundations of conceptualizations of consciousness. Written (...) by notable scholars in several areas of psychology, philosophy, cognitive neuroscience, and anthropology, the essays are of interest to readers from a variety of disciplines concerned with central, substantive questions in contemporary social science, and the humanities. (shrink)

Physicians and other health care providers owe ethical and legal duties to patients to maintain the secrecy of the information learned during the course of patient care. This obligation is fulfilled by limiting access to such information to only those involved in the patient's care-that is, to those within the “circle of confidentiality.” As a general rule, providers may only disclose to others with the written prior consent of the patient. Exceptions may be “ethically and legally justified because of overriding (...) social considerations,” when permitted or compelled by law. For example, eleven states permit providers to disclose identified records to approved researchers.’ Many states compel disclosure in cases where a patient threatens serious bodily harm to another; require reporting to health or law enforcement authorities of communicable diseases, gunshot or knife wounds, or child abuse; and mandate reporting of cancer or other health care cases to state registries. (shrink)

Physicians and other health care providers owe ethical and legal duties to patients to maintain the secrecy of the information learned during the course of patient care. This obligation is fulfilled by limiting access to such information to only those involved in the patient's care-that is, to those within the “circle of confidentiality.” As a general rule, providers may only disclose to others with the written prior consent of the patient. Exceptions may be “ethically and legally justified because of overriding (...) social considerations,” when permitted or compelled by law. For example, eleven states permit providers to disclose identified records to approved researchers.’ Many states compel disclosure in cases where a patient threatens serious bodily harm to another; require reporting to health or law enforcement authorities of communicable diseases, gunshot or knife wounds, or child abuse; and mandate reporting of cancer or other health care cases to state registries. (shrink)

Many assume that we can be responsible only what is voluntary. This leads to puzzlement about our responsibility for our beliefs, since beliefs seem not to be voluntary. I argue against the initial assumption, presenting an account of responsibility and of voluntariness according to which, not only is voluntariness not required for responsibility, but the feature which renders an attitude a fundamental object of responsibility (that the attitude embodies one’s take on the world and one’s place in it) also guarantees (...) that it could not be voluntary. It turns out, then, that, for failing to be voluntary, beliefs are a central example of the sort of thing for which we are most fundamentally responsible. (shrink)

In researching women’s involvement in economic crime, the concept of the ‘economic’ is problematic. Women’s crime for economic gain and women’s crime in economic terms are inadequately catered for. In reviewing criminologists’ uses of the notion of ‘economic crime’ I suggest that criminological understandingin relation to crime for economic gain is poor and that gender freedom/blindness/specificity variously operate. This article provides an original feminist reading of contemporary work on crime and markets and rational choicetheory and relates this to feminist economic (...) critiques in order to achieve agendering of the economy. The broad aims of the article are to illustratethe problematics of economic classifications and definitions in criminologyand to mount an argument that suggests the whole notion of the economic within criminology demands (feminist) critique. (shrink)

According to ‘Excluders’, descriptive uncertainty – but not normative uncertainty – matters to what we ought to do. Recently, several authors have argued that those wishing to treat normative uncertainty differently from descriptive uncertainty face a dependence problem because one's descriptive uncertainty can depend on one's normative uncertainty. The aim of this paper is to determine whether the phenomenon of dependence poses a decisive problem for Excluders. I argue that existing arguments fail to show this, and that, while stronger ones (...) can be found, Excluders can escape them. (shrink)

This paper proposes an intermediate account of personhood, based on the capacity to participate in intersubjective interactions. We articulate our proposal as a reply to liberal and restrictive accounts, taking Mark Rowlands’ and Stephen Darwall’s proposals as contemporary representatives of each view, respectively. We argue that both accounts fall short of dealing with borderline cases and defend our intermediate view: The criteria of personhood based on the second-person perspective of mental state attribution. According to it, a person should be able (...) to participate in intersubjective interactions. We apply our proposal to the borderline cases of non-human primates and human infants. (shrink)

This work examines the dynamics through which women are marginalized and impoverished, and offers a constructive proposal for addressing women's socio-economic vulnerability. Part One surveys the economic status of women globally and discerns both common threads of subordination and significant differences among women. Part Two reviews the social-justice positions of the Roman Catholic church and the World Council of Churches in light of this survey. Part Three identifies theoretical resources that adequately address women's socio-economic vulterability. Brubaker advances her own theoretical (...) approach, which illuminates and engages women's impoverishment. She concludes with a discussion of how placing women's economic condition at the center of Christian economic ethics would affect social analysis, economic policy, and social vision. (shrink)

The paper presents evidence in bacteria for the utility of Godfrey-Smith’s environmental complexity thesis, using certain kinds of signal transduction systems as proxies for cognitive/behavioral complexity. Microbiologists already accept that the number of signal transduction proteins in a bacterial genome indicates the level of ecological complexity to which the organism is subject: the more signalling proteins, the greater the complexity. Sheer numbers are not always a reliable indicator of behavioral complexity, however. The paper proposes a new, ECT-based procedure for identifying, (...) from genomic sequence and signalling repertoire, novel bacterial candidates likely to exhibit behavioral complexity in response to a complex ecological niche. (shrink)

In honoring Carroll Izard’s contributions to emotion research, we discuss infant facial activity and emotion expression. We consider the debated issue of whether infants are biologically prepared to express specific emotions. We offer a perspective that potentially integrates differing viewpoints on infant facial expression of emotion. Specifically, we suggest that evolution has prepared infants with innate action readiness patterns, which are crucial for early infant–caregiver social interaction, and in the course of social interaction specific facial configurations acquire functional significance, becoming (...) associated with specific emotions. Research has not confirmed the presence of innate neurophysiological action patterns that map onto discrete emotions but evidence indicates that the possibility has not been ruled out. (shrink)

Much research on women’s religious participation centers on their abilities to act within constricted institutional spaces. Drawing on five years of ethnographic fieldwork, this study analyzes how African American Muslim women use the mosque as a physical space to enact public performances of religious identity. By occupying, protecting, and appropriating spaces in the mosque for meaningfully gender-specific ways of engaging Islam, the women further a project of religious self-making that bonds African American Muslim women together. In their maneuverings of different (...) forms of physical space as a sisterhood, the women enable themselves to resist gender, economic, and racial oppression. This study reveals that even within men-dominated religious organizations with limited symbolic and material spaces for women, women participants successfully exert agency over their own religious experiences. (shrink)

BackgroundBiobanking biospecimens and consent are common practice in paediatric research. We need to explore children and young people’s (CYP) knowledge and perspectives around the use of and consent to biobanking. This will ensure meaningful informed consent can be obtained and improve current consent procedures.MethodsWe designed a survey, in co-production with CYP, collecting demographic data, views on biobanking, and consent using three scenarios: 1) prospective consent, 2) deferred consent, and 3) reconsent and assent at age of capacity. The survey was disseminated (...) via the Young Person’s Advisory Group North England (YPAGne) and participating CYP’s secondary schools. Data were analysed using a qualitative thematic approach by three independent reviewers (including CYP) to identify common themes. Data triangulation occurred independently by a fourth reviewer.ResultsOne hundred two CYP completed the survey. Most were between 16–18 years (63.7%, N = 65) and female (66.7%, N = 68). 72.3% had no prior knowledge of biobanking (N = 73).Acceptability of prospective consent for biobanking was high (91.2%, N = 93) with common themes: ‘altruism’, ‘potential benefits outweigh individual risk’, 'frugality', and ‘(in)convenience’.Deferred consent was also deemed acceptable in the large majority (84.3%, N = 86), with common themes: ‘altruism’, ‘body integrity’ and ‘sample frugality’. 76.5% preferred to reconsent when cognitively mature enough to give assent (N = 78), even if parental consent was previously in place. 79.2% wanted to be informed if their biobanked biospecimen is reused (N = 80).ConclusionProspective and deferred consent acceptability for biobanking is high among CYP in the UK. Altruism, frugality, body integrity, and privacy are the most important themes. Clear communication and justification are paramount to obtain consent. Any CYP with capacity should be part of the consenting procedure, if possible. (shrink)