ObjectiveMost young adults diagnosed with breast or gynecologic cancers experience adverse reproductive or sexual health outcomes due to cancer and its treatment. However, evidence-based interventions that specifically address the RSH concerns of young adult and/or LGBTQ+ survivor couples are lacking. Our goal is to develop a feasible and acceptable couple-based intervention to reduce reproductive and sexual distress experience by young adult breast and gynecologic cancer survivor couples with diverse backgrounds.MethodsWe systematically adapted an empirically supported, theoretically grounded couple-based intervention to address (...) the RSH concerns of young couples coping with breast or gynecologic cancer through integration of stakeholder perspectives. We interviewed 11 couples with a history of breast or gynecologic cancer to review and pretest intervention materials. Three of these couples were invited to review and comment on intervention modifications. Content experts in RSH and dyadic coping, clinicians, and community advisors participated throughout the adaptation process.ResultsFindings confirmed the need for an online, couple-based intervention to support young couples experiencing RSH concerns after breast or gynecologic cancer. Qualitative themes suggested intervention preferences for: A highly flexible intervention that can be tailored to couples’ specific RSH concerns; Active steps to help members of a dyad “get on the same page” in their relationship and family building plans; A specific focus on raising partners’ awareness about how cancer can affect body image and physical intimacy; and Accessible, evidence-based information about RSH for both partners. These results, along with feedback from stakeholders, informed adaptation and finalization of the intervention content and format. The resulting virtual intervention, Opening the Conversation, includes five weekly sessions offering training to couples in communication and dyadic coping skills for addressing RSH concerns.ConclusionThe systematic adaptation process yielded a theory-informed intervention for young adult couples facing breast and gynecological cancers, which will be evaluated in a randomized controlled trial. The long-term goal is to implement and disseminate Opening the Conversation broadly to reach young adult couples with diverse backgrounds who are experiencing RSH concerns in cancer survivorship. (shrink)

Technology has expanded genomic research and the complexity of extracted gene-related information. Health-related genomic incidental findings pose new dilemmas for nurse researchers regarding the ethical application of disclosure to participants. Consequently, informed consent specific to incidental findings is recommended. Critical Social Theory is used as a guide in recognition of the changing meaning of informed consent and to serve as a framework to inform nursing of the ethical application of disclosure consent in genomic nursing research practices.

The central theme of the volume is cultural diversity, a vast subject that is highly relevant today. The particular focus here is on the many ways in which this diversity is managed within the framework of State law. The twelve contributors to this book have a special interest in how cultural traditions and their various forms of expression are handled by the law. They were all participants in the 2009 Research Programme of the Centre for Studies and Research of the (...) Hague Academy of International Law. The breadth of the subject is reflected in the wide spectrum of perspectives from which the topic has been explored. Starting in each case from the existing State and international legal frameworks, the contributors explore how the interactions between positive law and other normative orders can be placed at the service of a legal system that is as fair as possible within a plural context. Contributors were asked to choose from two alternative approaches: either they could look at cultural diversity issues in the field of private (international) law, a fairly traditional field that is especially relevant to the legal treatment of cultural diversity; or they could situate cultural diversity within the wider and more theoretical area of "legal pluralism", whether on a local or regional level or at the international (United Nations) level. Edited by Marie-Claire Foblets and Nadjma Yassari With the contribution of: M. Ben Lamine; N. Bialostozky; R. Colavitti; L.-M. Crăciunean; I. Gallala-Arndt; P. Kruiniger; V. Mainetti; S. Ouechtati; J. Ringelheim; B. Truffin; J. Verhellen; A. Vigorito. Le th me au coeur de ce volume est la diversit culturelle, vaste sujet de grande actualit. L'int r t porte ici plus particuli rement sur les mani res disparates dont cette diversit est agenc e dans le droit (formel) des Etats. Les douze auteurs portent tous un int r t particulier pour la question du sort qui est r serv, en droit, aux traditions culturelles et leurs diverses formes d'expression. L'ouvrage est le fruit des travaux du Centre d' tude et de recherche de l'Acad mie de droit international de La Haye en 2009. Le choix des sujets abord s dans ce volume est vaste. Le point de d part de chaque contribution toutefois est le cadre normatif existant, tant le cadre tatique que les instruments internationaux, pour ensuite explorer les diverses mani res dont ceuxci se positionnent par rapport d'autres logiques normatives perceptibles dans la soci t et qui tendent, chacune sa mani re, obtenir une forme de reconnaissance de la part du droit tatique. Plusieurs pistes s'offraient aux auteurs: une premi re piste consistait s'int resser surtout aux questions de droit international priv, un domaine traditionnel du droit qui regorge d'int r t pour la question du traitement juridique de la diversit culturelle. Une autre piste tait de faire le jour sur les m canismes de protection juridique de la diversit culturelle travers le prisme du pluralisme juridique et de voir jouer celui-ci divers niveaux: local, r gional, national et international. Les contributions illustrent les liens signifiants existant entre l'ordre juridique d'un Etat et les multiples ordres juridiques parall les (religieux, philosophiques, ethniques, ou autres) pr sents sur son territoire. Originally published as Colloques / Workshops - Law Books of the Academy, Volume 33. (shrink)

(2006). Not 'Getting Some Guns and Doing Some Damage': Listening to Teens and Learning From a Ragtime Festival. Educational Studies: Vol. 39, No. 2, pp. 102-123.

The purpose of this study was to test a causal model of ethical conflict in practice and autonomy in a sample of 254 nurse practitioners working in the primary care areas of family health, pediatrics, adult health and obstetrics/gynecology in the state of Maryland. A test of the model was conducted using a path analytic approach with LISREL 8.30 hypothesizing individual, organizational and societal/market factors influencing ethical conflict in practice and autonomy. Maximum likelihood estimation was used to estimate the parameters (...) most likely to have generated the data. Forty-five percent of the total variance in ethical conflict was explained by the variables of ethical environment and ethical concern. Ethical concern, idealistic philosophy, ethics education in continuing education, percentage of client population enrolled in managed care, and market penetration explained 15% of the total variance in autonomy. The findings of this study indicate that the causal model of ethical conflict in practice and autonomy is consistent with the data and contributed to a fuller understanding of clinical decision making associated with practicing in a managed care environment. The final model supported a conceptual framework that is inclusive of three domains: individual, organizational and societal/market variables. (shrink)

Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources—a “cancer gene variant commons”—incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder (...) groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers. (shrink)

Alterations to cognitive function are often reported with depression and anxiety symptoms, yet few studies have examined the same associations with mental well-being. This study examined the association between mental well-being, depression and anxiety symptoms and cognitive function in 1502 healthy adult monozygotic and dizygotic twins, and the shared/unique contribution of genetic and environmental variance. Using linear mixed models, mental well-being was positively associated with sustained attention, inhibition, cognitive flexibility, motor coordination and working memory, whereas depression and anxiety symptoms were (...) associated with poorer sustained attention, inhibition, cognitive flexibility and executive function. Bivariate twin modelling showed well-being shared a small environmental correlation with motor coordination and a small genetic correlation with working memory. Trivariate twin modelling showed well-being shared a small genetic correlation with inhibition, whereas depression and anxiety symptoms shared a small environmental correlation with inhibition. The remaining variance was mostly driven by unique G and/or E variance. Overall, well-being and depression and anxiety symptoms show both independent and shared relationships with cognitive functions but this is largely attributable to unique G or E variance and small shared G/E variance between pairs of variables. (shrink)

Members of the Ethics and Public Policy Committee of the International Society of Nurses in Genetics prepared this article to assist nurses in interpreting the American Nurses Association (2015) Code of Ethics for Nurses with Interpretive Statements (Code) within the context of genetics/genomics. The Code explicates the nursing profession’s norms and responsibilities in managing ethical issues. The nearly ubiquitous application of genetic/genomic technologies in healthcare poses unique ethical challenges for nursing. Therefore, authors conducted literature searches that drew from various professional (...) resources to elucidate implications of the code in genetic/genomic nursing practice, education, research, and public policy. We contend that the revised Code coupled with the application of genomic technologies to healthcare creates moral obligations for nurses to continually refresh their knowledge and capacities to translate genetic/genomic research into evidence-based practice, assure the ethical conduct of scientific inquiry, and continually develop or revise national/international guidelines that protect the rights of individuals and populations within the context of genetics/genomics. Thus, nurses have an ethical responsibility to remain knowledgeable about advances in genetics/genomics and incorporate emergent evidence into their work. (shrink)

Executive functions (EFs) and impulsivity are dimensions of self-regulation that are both related to psychopathology. However, self-report measures of impulsivity and laboratory EF tasks typically display small correlations, and existing research indicates that impulsivity and EFs may tap separate aspects of self-regulation that independently statistically predict psychopathology in adulthood. However, relationships between EFs, impulsivity, and psychopathology may be different in childhood compared to adulthood. Here, we examine whether these patterns hold in the baseline assessment of the Adolescent Brain and Cognitive (...) Development (ABCD) sample, a national sample of over 11,000 children (including 749 twin pairs) ages 9–10 years. We examine the phenotypic and genetic relationships among latent variables for different components of EFs and multiple facets of impulsivity. Additionally, we assess how EFs and impulsivity relate to composite measures and latent variables of psychopathology derived from parent report. EFs were weakly correlated with impulsivity, and the strength varied by impulsivity facet, emphasizing their separability. We did not identify significant genetic and environmental correlations between EFs and impulsivity. Moreover, controlling for their small relationships with each other, both EFs and some facets of impulsivity statistically predicted an Externalizing factor, attention problems, and social problems, and twin analyses suggested these relationships were genetic in origin. These findings indicate that EFs and impulsivity represent phenotypically and genetically separable aspects of self-regulation that are both transdiagnostic correlates of psychopathology in childhood. (shrink)

Academic dishonesty, including cheating and plagiarism, is on the rise in colleges, particularly among engineering students. While students decide to engage in these behaviors for many different reasons, academic integrity training can help improve their understanding of ethical decision making. The two studies outlined in this paper assess the effectiveness of an online module in increasing academic integrity among first semester engineering students. Study 1 tested the effectiveness of an academic honesty tutorial by using a between groups design with a (...) Time 1- and Time 2-test. An academic honesty quiz assessed participants’ knowledge at both time points. Study 2, which incorporated an improved version of the module and quiz, utilized a between groups design with three assessment time points. The additional Time 3-test allowed researchers to test for retention of information. Results were analyzed using ANCOVA and t tests. In Study 1, the experimental group exhibited significant improvement on the plagiarism items, but not the total score. However, at Time 2 there was no significant difference between groups after controlling for Time 1 scores. In Study 2, between- and within-group analyses suggest there was a significant improvement in total scores, but not plagiarism scores, after exposure to the tutorial. Overall, the academic integrity module impacted participants as evidenced by changes in total score and on specific plagiarism items. Although future implementation of the tutorial and quiz would benefit from modifications to reduce ceiling effects and improve assessment of knowledge, the results suggest such tutorial may be one valuable element in a systems approach to improving the academic integrity of engineering students. (shrink)

Guided by concepts from life history (LH) theory, a large human research literature has tested the hypothesis that exposures to extrinsic mortality (EM) promote the development of faster LH strategies (e.g., earlier/faster reproduction, higher offspring number). A competing model proposes that, because EM in the past was intimately linked to energetic constraints, such exposures specifically led to the development of slower LH strategies. We empirically address this debate by examining (1) LH variation among small-scale societies under different environmental conditions; (2) (...) country-, regional- and community-level correlations between ecological conditions, mortality, maturational timing, and fertility; (3) individual-level correlations between this same set of factors; and (4) natural experiments leveraging the impact of externally-caused changes in mortality on LH traits. Partially supporting each model, we found that harsh conditions encompassing energetic stress and ambient cues to EM (external cues received through sensory systems) have countervailing effects on the development of LH strategies, both delaying pubertal maturation and promoting an accelerated pace of reproduction and higher offspring number. We conclude that, although energetics are fundamental to many developmental processes, providing a first tier of environmental influence, this first tier alone cannot explain these countervailing effects. An important second tier of environmental influence is afforded by ambient cues to EM. We advance a 2-tiered model that delineates this second tier and its central role in regulating development of LH strategies. Consideration of the first and second tier together is necessary to account for the observed countervailing shifts toward both slower and faster LH traits. (shrink)

Background Duty to care is integral to nursing practice. Personal obligations that normally conflict with professional obligations are likely amplified during a public health emergency such as COVID-19. Organizations can facilitate a nurse’s ability to fulfill the duty to care without compromising on personal obligations. Research Aim The study aimed to explore the relationships among duty to care, perception of supportive environment, perceived stress, and COVID-19-specific anxieties in nurses working directly with COVID-19 patients. Research Design The study design was a (...) cross-sectional descriptive study using an online survey. It was conducted at an ANCC Magnet® designated 385-bed acute care teaching hospital located in a suburban area. Participants and Research Context Included in this study were 339 medical surgical nurses working directly with COVID-19 patients during the early phase of the pandemic. Ethical Considerations The study was reviewed by the institution’s clinical research committee and determined to be exempt. A survey invitation letter with a voluntary implied consent agreement was sent to participants with a description of the research study attached to the anonymous survey. Results Nurses with specific COVID-19-related anxieties were more likely to agree that it was ethical to abandon the workplace during a pandemic. Conclusions Organizations can and ought to mitigate the negative effects of COVID-19 on duty to care in future pandemics and healthcare emergencies by incorporating several recommendations derived from this study. (shrink)

Previous studies of Zika virus (ZIKV) pathogenesis have focused primarily on virus‐driven pathology and neurotoxicity, as well as host‐related changes in cell proliferation, autophagy, immunity, and uterine function. It is now hypothesized that ZIKV pathogenesis arises instead as an (unintended) consequence of host innate immunity, specifically, as the side effect of an otherwise well‐functioning machine. The hypothesis presented here suggests a new way of thinking about the role of host immune mechanisms in disease pathogenesis, focusing on dysregulation of post‐transcriptional RNA (...) editing as a candidate driver of a broad range of observed neurodevelopmental defects and neurodegenerative clinical symptoms in both infants and adults linked with ZIKV infections. The authors collect and synthesize existing evidence of ZIKV‐mediated changes in the expression of adenosine deaminases acting on RNA (ADARs), known links between abnormal RNA editing and pathogenesis, as well as ideas for future research directions, including potential treatment strategies. (shrink)

Graphical AbstractAdenosine Deaminases Acting on RNA (ADARs) enzymes are prominent regulators of neural transcriptome diversity and play a role in the innate immune response. In article number 1800239, Piontkivska et al. outline how neurodevelopmental and neurodegenerative pathogenesis of Zika virus (ZIKV), including congenital Zika and Guillain-Barré syndromes, can be attributed to ADAR editing dysregulation triggered by ZIKV, Explaining Pathogenicity of Congenital Zika and Guillain-Barré Syndromes: Does Dysregulation of RNA Editing Play a Role? DOI: 10.1002/bies.201800239.

The Monographs produced by the International Agency for Research on Cancer (IARC) apply rigorous procedures for the scientific review and evaluation of carcinogenic hazards by independent experts. The Preamble to the IARC Monographs, which outlines these procedures, was updated in 2019, following recommendations of a 2018 expert Advisory Group. This article presents the key features of the updated Preamble, a major milestone that will enable IARC to take advantage of recent scientific and procedural advances made during the 12 years since (...) the last Preamble amendments. The updated Preamble formalizes important developments already being pioneered in the Monographs Programme. These developments were taken forward in a clarified and strengthened process for identifying, reviewing, evaluating and integrating evidence to identify causes of human cancer. The advancements adopted include strengthening of systematic review methodologies; greater emphasis on mechanistic evidence, based on key characteristics of carcinogens; greater consideration of quality and informativeness in the critical evaluation of epidemiological studies, including their exposure assessment methods; improved harmonization of evaluation criteria for the different evidence streams; and a single-step process of integrating evidence on cancer in humans, cancer in experimental animals and mechanisms for reaching overall evaluations. In all, the updated Preamble underpins a stronger and more transparent method for the identification of carcinogenic hazards, the essential first step in cancer prevention. (shrink)

_The Routledge Handbook of Neuroethics_ offers the reader an informed view of how the brain sciences are being used to approach, understand, and reinvigorate traditional philosophical questions, as well as how those questions, with the grounding influence of neuroscience, are being revisited beyond clinical and research domains. It also examines how contemporary neuroscience research might ultimately impact our understanding of relationships, flourishing, and human nature. The _Handbook_ features easy-to-follow chapters that appear here for the first time in print and—written by (...) 61 key scholars and fresh voices—represent the wide range of viewpoints in neuroethics. The volume spotlights new technologies and historical articulations of key problems, issues, and concepts, and includes cross-referencing between chapters to highlight the complex interactions of concepts and ideas within neuroethics. These features enhance the _Handbook_’s utility by providing readers with a contextual map for different approaches to issues, and a guide to further avenues of interest. (shrink)

Children’s literature was first published in the eighteenth century at a time when the philosophical ideas of Jean-Jacques Rousseau on education and childhood were being discussed. Ironically, however, the first generation of children’s literature (by Maria Edgeworth et al) was incongruous with Rousseau’s ideas since the works were didactic, constraining and demanded passive acceptance from their readers. This instigated a deficit or reductionist model to represent childhood and children’s literature as simple and uncomplicated and led to children’s literature being overlooked (...) and its contribution to philosophical discussions being undermined. Although Rousseau advocates freeing the child to develop, he does not feel that reading fiction promotes child development, which is a weakness in an otherwise strong argument for educational reform. Yet, rather ironically, the second generation of children’s writers, from Lewis Carroll onwards, more truly embraced Rousseau’s broader philosophical ideas on education and childhood than their predecessors, encouraging and freeing readers to imagine, reflect and actively engage in ontological enquiry. The emphasis had changed with the child being embraced in education and society as active participant rather than passive or disengaged recipient. Works deemed to be seminal to the canon of children’s literature such as Alice’s Adventures in Wonderland, Peter Pan and The Chronicles of Narnia challenge readers to work through conflicts many of which can be identified retrospectively as exhibiting postmodern characteristics. By exploring moral and spiritual dilemmas in their writing, Carroll, Barrie and Lewis’s works can be regarded as contributing to discussions on theodical postmodernism. The successes of The Lord of the Rings and Narnia films suggest that there is an interest in exploring moral dilemmas, fulfilling a need (perhaps for tolerance and understanding) in society at large. Children’s literature has an almost divine power to restore, to repair and to heal, all characteristics of theodical postmodernism but differing from the more widely held conception of postmodernism which pulls apart, exacerbates and exposes. Children’s literature therefore offers a healthy and constructive approach to working through moral dilemmas. In their deconstruction of childhood, these authors have brought children’s literature closer to aspects of enquiry traditionally found in the domain of adult mainstream literature. As the boundaries between childhood and adulthood become more fluid, less certain, debate is centring around whether the canon of children’s literature itself has become redundant or meaningless since there are no longer any restrictions on which subjects can be treated in children’s literature. Despite the fact that children’s literature clearly engages with difficult issues, it continues to be left out of the critical equation, not given serious attention, disregarded as simplistic and ignored in contemporary philosophical discussions concerning morality, postmodernism and the future of childhood. With children’s literature coming closer to mainstream literature, and exhibiting prominent features of postmodernism, however, it is only a matter of time before philosophical discussions actively engage with children’s literature and recognise its contribution to the resolution and reconciliation of ontological dilemmas. When this occurs, philosophy and children’s literature will re-engage, enriching contemporary investigations of existence, ethics and knowledge and fruitfully developing thought in these areas. This paper aims to contribute to this process. (shrink)

Purpose/methods: This study investigated the relationship between ethics education and training, and the use and usefulness of ethics resources, confidence in moral decisions, and moral action/activism through a survey of practicing nurses and social workers from four United States (US) census regions. Findings: The sample (n = 1215) was primarily Caucasian (83%), female (85%), well educated (57% with a master's degree). no ethics education at all was reported by 14% of study participants (8% of social workers had no ethics education, (...) versus 23% of nurses), and only 57% of participants had ethics education in their professional educational program. Those with both professional ethics education and in-service or continuing education were more confident in their moral judgments and more likely to use ethics resources and to take moral action. Social workers had more overall education, more ethics education, and higher confidence and moral action scores, and were more likely to use ethics resources than nurses. Conclusion: Ethics education has a significant positive influence on moral confidence, moral action, and use of ethics resources by nurses and social workers. (shrink)

This volume explores how Catholicism began and continues to open its doors to the wider world and to other confessions in embracing ecumenism, thanks to the vision and legacy of the Second Vatican Council. It explores such themes as the twentieth century context preceding the council; parallels between Vatican II and previous councils; its distinctively pastoral character; the legacy of the council in relation to issues such as church-world dynamics, as well as to ethics, social justice, economic activity. Several chapters (...) discuss the role of women in the church before, during, and since the council. Others discern inculturation in relation to Vatican II. The book also contains a wide and original range of ecumenical considerations of the council, including by and in relation to Free Church, Reformed, Orthodox, and Anglican perspectives. Finally, it considers the Council’s ongoing promise and remaining challenges with regard to ecumenical issues, including a groundbreaking essay on the future of ecumenical dialogue by Cardinal Walter Kasper. (shrink)

This book brings together scholars from a variety of epistemological perspectives to explore the multiple ways in which sexuality does indeed matter in the arena of public education.

The Search for the Legacy of the USPHS Syphilis Study at Tuskegee is a collection of essays from experts in a variety of fields seeking to redefine the legacy of the infamous Tuskegee Syphilis Study. The essayists place the legacy of the study within the evolution of racial and ethnic relations in the United States. Contributors include two leading historians on the study, two former United States Surgeons General, and other prominent scholars from a wide range of fields.

Social networks play a significant role in learning and thus in farmers’ adoption of new agricultural technologies. This study examined the effects of social network factors on information acquisition and adoption of new seed varieties among groundnut farmers in Uganda and Kenya. The data were generated through face-to-face interviews from a random sample of 461 farmers, 232 in Uganda and 229 in Kenya. To assess these effects two alternative econometric models were used: a seemingly unrelated bivariate probit model and a (...) recursive bivariate probit model. The statistical evaluation of the SUBP shows that information acquisition and adoption decisions are interrelated while tests for the RBP do not support this latter model. Therefore, the analysis is based on the results obtained from the SUBP. These results reveal that social network factors, particularly weak ties with external support, partially influence information acquisition, but do not influence adoption. In Uganda, external support, gender, farm size, and geographic location have an impact on information acquisition. In Kenya, external support and geographic location also have an impact on information acquisition. With regard to adoption, gender, household size, and geographic location play the most important roles for Ugandan farmers, while in Kenya information from external sources, education, and farm size affect adoption choice. The study provides insight on the importance of external weak ties in groundnut farming, and a need to understand regional differences along gender lines while developing agricultural strategies. This study further illustrates the importance of farmer participation in applied technology research and the impact of social interactions among farmers and external agents. (shrink)

Live donor kidney transplantation is the best treatment option for most patients with late-stage chronic kidney disease; however, the rate of living kidney donation has declined in the United States. A consensus conference was held June 5-6, 2014 to identify best practices and knowledge gaps pertaining to live donor kidney transplantation and living kidney donation. Transplant professionals, patients, and other key stakeholders discussed processes for educating transplant candidates and potential living donors about living kidney donation; efficiencies in the living donor (...) evaluation process; disparities in living donation; and financial and systemic barriers to living donation. We summarize the consensus recommendations for best practices in these educational and clinical domains, future research priorities, and possible public policy initiatives to remove barriers to living kidney donation. (shrink)

Although very young children have unprecedented access to touchscreen devices, there is limited research on how successfully they operate these devices for play and learning. For infants and toddlers, whose cognitive, fine motor, and executive functions are immature, several basic questions are significant: Can they operate a tablet purposefully to achieve a goal? Can they acquire operating skills and learn new information from commercially available apps? Do individual differences in executive functioning predict success in using and learning from the apps? (...) Accordingly, 31 2-year-olds were compared with 29 3-year-olds using two commercially available apps with different task and skill requirements: a shape matching app performed across 3 days, and a storybook app with performance compared to that on a matched paper storybook. Children also completed the Minnesota Executive Functioning Scale. An adult provided minimal scaffolding throughout. The results showed: toddlers could provide simple goal-directed touch gestures and the manual interactions needed to operate the tablet after controlling for prior experience with shape matching, toddlers’ increased success and efficiency, made fewer errors, decreased completion times, and required less scaffolding across trials, they recognized more story content from the e-book and were less distracted than from the paper book, executive functioning contributed unique variance to the outcome measures on both apps, and 3-year-olds outperformed 2-year-olds on all measures. The results are discussed in terms of the potential of interactive devices to support toddlers’ learning. (shrink)

Pediatric biobanking is considered important for generating biomedical knowledge and improving health care. However, the inclusion of children’s samples in biobanks involves specific ethical issues. One of the main concerns is how to appropriately engage children in the consent procedure. We suggest that children should be involved through a personalized assent procedure, which means that both the content and the process of assent are adjusted to the individual child. In this paper we provide guidance on how to put personalized assent (...) into pediatric biobanking practice and consider both the content and process of personalized assent. In the discussion we argue that the assent procedure itself is formative. Investing in the procedure should be a requirement for pediatric biobank research. Although personalized assent will require certain efforts, the pediatric community must be aware of its importance. The investment and trust earned can result in ongoing engagement, important longitudinal information, and stability in/for the research infrastructure, as well as increased knowledge among its participants about research activity. Implementing personalized assent will both respect the child and support biobank research. (shrink)

Cancer and its treatment pose challenges that affect not only patients but also their significant others, including intimate partners. Accumulating evidence suggests that couples’ ability to communicate effectively plays a major role in the psychological adjustment of both individuals and the quality of their relationship. Two key conceptual models have been proposed to account for how couple communication impacts psychological and relationship adjustment: the social-cognitive processing (SCP) model and the relationship intimacy (RI) model. These models posit different mechanisms and outcomes, (...) and thus have different implications for intervention. The purpose of this project is to test and compare the utility of these models using comprehensive and methodologically rigorous methods. Aims are: (1) to examine the overall fit of the SCP and RI models in explaining patient and partner psychological and relationship adjustment as they occur on a day-to-day basis and over the course of 1 year; (2) to examine the fit of the models for different subgroups (males vs. females, and patients vs. partners); and (3) to examine the utility of various methods of assessing communication by examining the degree to which baseline indices from different measurement strategies predict self-reported adjustment at 1-year follow up. The study employs a longitudinal, multi-method approach to examining communication processes including: standard self-report questionnaires assessing process and outcome variables collected quarterly over the course of 1 year; smartphone-based ecological momentary assessments to sample participant reports in real time; and laboratory-based couple conversations from which we derive observational measures of communicative behavior and affective expression, as well as vocal indices of emotional arousal. Participants are patients with stage II-IV breast, colon, rectal, or lung cancer and their spouses/partners, recruited from two NCI-designated comprehensive cancer centers. Results will be published in scientific journals, presented at scientific conferences, and conveyed to a larger audience through infographics and social media outlets. Findings will inform theory, measurement, and the design and implementation of efficacious interventions aimed at optimizing both patient and partner well-being. (shrink)

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.