Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

Critical discourse analysis is a useful and productive qualitative methodology but has been underutilized within nursing research. In order to redress this deficiency the research presented in this article represents an exploration of the way in which critical discourse analysis may be applied to the analysis of public debates around policy for nursing practice. In this article the author discusses the history of the application of critical discourse analysis and provides an example of its application to the debate around the (...) use of nurse practitioners within the Australian healthcare system. (shrink)

In another tumultuous term of the United States Supreme Court in 2022-2023 a series of critical cases implicate instant and forthcoming changes in multiple fronts that collectively shift the national public health law and policy environment.

The development of the Functional Genomics Investigation Ontology (FuGO) is a collaborative, international effort that will provide a resource for annotating functional genomics investigations, including the study design, protocols and instrumentation used, the data generated and the types of analysis performed on the data. FuGO will contain both terms that are universal to all functional genomics investigations and those that are domain specific. In this way, the ontology will serve as the “semantic glue” to provide a common understanding of data (...) from across these disparate data sources. In addition, FuGO will reference out to existing mature ontologies to avoid the need to duplicate these resources, and will do so in such a way as to enable their ease of use in annotation. This project is in the early stages of development; the paper will describe efforts to initiate the project, the scope and organization of the project, the work accomplished to date, and the challenges encountered, as well as future plans. (shrink)

This book's importance is derived from three sources: careful conceptualization of teacher induction from historical, methodological, and international perspectives; systematic reviews of research literature relevant to various aspects of teacher induction including its social, cultural, and political contexts, program components and forms, and the range of its effects; substantial empirical studies on the important issues of teacher induction with different kinds of methodologies that exemplify future directions and approaches to the research in teacher induction.

The Ontology for Biomedical Investigations (OBI) is an ontology that provides terms with precisely defined meanings to describe all aspects of how investigations in the biological and medical domains are conducted. OBI re-uses ontologies that provide a representation of biomedical knowledge from the Open Biological and Biomedical Ontologies (OBO) project and adds the ability to describe how this knowledge was derived. We here describe the state of OBI and several applications that are using it, such as adding semantic expressivity to (...) existing databases, building data entry forms, and enabling interoperability between knowledge resources. OBI covers all phases of the investigation process, such as planning, execution and reporting. It represents information and material entities that participate in these processes, as well as roles and functions. Prior to OBI, it was not possible to use a single internally consistent resource that could be applied to multiple types of experiments for these applications. OBI has made this possible by creating terms for entities involved in biological and medical investigations and by importing parts of other biomedical ontologies such as GO, Chemical Entities of Biological Interest (ChEBI) and Phenotype Attribute and Trait Ontology (PATO) without altering their meaning. OBI is being used in a wide range of projects covering genomics, multi-omics, immunology, and catalogs of services. OBI has also spawned other ontologies (Information Artifact Ontology) and methods for importing parts of ontologies (Minimum information to reference an external ontology term (MIREOT)). The OBI project is an open cross-disciplinary collaborative effort, encompassing multiple research communities from around the globe. To date, OBI has created 2366 classes and 40 relations along with textual and formal definitions. The OBI Consortium maintains a web resource providing details on the people, policies, and issues being addressed in association with OBI. (shrink)

A medical information commons is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

Preparing the Next Generation of Oral Historians is an invaluable resource to educators seeking to bring history alive for students at all levels. Filled with insightful reflections on teaching oral history, it offers practical suggestions for educators seeking to create curricula, engage students, gather community support, and meet educational standards. By the close of the book, readers will be able to successfully incorporate oral history projects in their own classrooms.

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

Philosophical theorizing is often, either tacitly or explicitly, guided by intuitions about cases. Theories that accord with our intuitions are generally considered to be prima facie better than those that do not. However, recent empirical work has suggested that philosophically significant intuitions are variable and unstable in a number of ways. This variability of intuitions has led naturalistically inclined philosophers to disparage the practice of relying on intuitions for doing philosophy in general (e.g. Stich & Weinberg 2001) and for doing (...) moral philosophy in particular (Appiah 2008; Doris & Stich 2005; Horowitz 1998; Nadelhoffer & Feltz 2008; Sinnott Armstrong 2008). In this paper, we will draw on naturalistic considerations to offer some solace to philosophers who rely on intuitions. We wouldn’t call this a defense of intuitions, exactly, since we are sympathetic with much of the naturalists’ critique. But we want to introduce into the debate some neglected naturalistic reasons to be optimistic about intuitions, focusing especially on ethical intuitions. (shrink)

It is commonly thought that moral rules and principles, such as ‘Keep your promises,’ ‘Respect autonomy,’ and ‘Distribute goods according to need ,’ should play an essential role in our moral deliberation. Particularists have challenged this view by arguing that principled guidance leads us to engage in worse decision making because principled guidance is too rigid and it leads individuals to neglect or distort relevant details. However, when we examine empirical literature on the use of rules and principles in other (...) domains, we find that people can learn to use rules discriminately and that rule-based models tend to outperform even expert judgment. I argue that this evidence poses a problem for the moral particularist. If the particularist claims that we should not rely on decision-making rules when making practical decisions and it turns out that these rules help us make better decisions, then the particularists’ prescriptive account is deficient. However, if the particularist claims that we should rely on practical decision-making rules but not on moral rules, she needs to explain how practical rules are different from moral rules and why we should rely on the former but not the latter. (shrink)

Without proper recognition of the dual pandemics of COVID-19 and racism that Asian Americans and other racial minorities in the United States are facing, we cannot successfully address structural b...

Hannah Arendt's and Charlotte Delbo's writings about the Holocaust trouble our preconceptions about those who do evil and those who suffer evil. Their jarring terms “banal evil” and “useless knowledge” point to limitations and temptations facing scholars of evil. While Arendt helps us to resist the temptation to mythologize evil, Delbo helps us to resist the temptation to domesticate suffering.

Recent, well-publicized scandals, involving unethical conduct have rekindled interest in academic misconduct. Prior studies of academic misconduct have focussed exclusively on situational factors (e.g., integrity culture, honor codes), demographic variables or personality constructs. We contend that it is important to also examine how␣these classes of variables interact to influence perceptions of and intentions relating to academic misconduct. In a sample of 217 business students, we examined how integrity culture interacts with Prudence and Adjustment to explain variance in estimated frequency of (...) cheating, suspicions of cheating, considering cheating and reporting cheating. Age, integrity culture, and personality variables were significantly related to different criteria. Overall, personality variables explained the most unique variance in academic misconduct, and Adjustment interacted with integrity culture, such that integrity culture had more influence on intentions to cheat for less well-adjusted individuals. Implications for practice are discussed and future research directions are offered. (shrink)

Why do we find agents less blameworthy when they face mitigating circumstances, and what does this show about philosophical theories of moral responsibility? We present novel evidence that the tendency to mitigate the blameworthiness of agents is driven both by the perception that they are less normatively competent—in particular, less able to know that what they are doing is wrong—and by the perception that their behavior is less attributable to their deep selves. Consequently, we argue that philosophers cannot rely on (...) the case strategy to support the Normative Competence theory of moral responsibility over the Deep Self theory. However, we also outline ways in which further empirical and philosophical work would shift the debate, by showing that there is a significant departure between ordinary concepts and corresponding philosophical concepts, or by focusing on a different type of coherence with ordinary judgments. (shrink)

This paper shares findings of a qualitative project exploring teacher candidates’ reflections on their own social studies inquiry teaching using video capture and annotation technology (VCAT). Teacher candidates’ annotated video and written reflections were collected and analyzed. Findings include important understandings of teacher candidates’ scholarship-aligned recognitions of strengths and areas for growth as well as areas where they had underdeveloped or novice negotiated conceptions of inquiry-centered instruction.

This paper offers a close reading of PAW Media animation My Name is Danny. Drawing across a growing body of recent Central and Western Desert experimental cinema, this paper asks what is at stake in the turn to animation. Rather than escapism or otherworldly fabrications which have little to do with lived experience of the “real,” animation in this context has potent everyday exigencies and politics. The capacity for bringing to life literally – animate – is here linked to the (...) primacy of a sentient landscape; an object world already alive and enlivened with motion, movement, sensation. The question for contemporary filmmaking is how to engage country and its viscera today. How to keep country/ancestor/story alive literally through sentient forms of affective exchange; a project which animation, as this paper will explore, uniquely provides. Drawing on the phenomenology of Merleau-Ponty and Deleuze, as well as the animation theory of Cholodenko, Lemarre and others, this paper argues for a radical reconsideration of animation not as incompatible with tradition but in fact as facilitating traditional ontologies of affect and sensation in a national context of remote Aboriginal Australia “under occupation.”. (shrink)

: Hannah Arendt's and Charlotte Delbo's writings about the Holocaust trouble our preconceptions about those who do evil and those who suffer evil. Their jarring terms "banal evil" and "useless knowledge" point to limitations and temptations facing scholars of evil. While Arendt helps us to resist the temptation to mythologize evil, Delbo helps us to resist the temptation to domesticate suffering.

As countries around the world work to restrict unhealthy food and beverage marketing to children, the U.S. remains reliant on industry-self regulation. The First Amendment’s protection for commercial speech and previous gutting of the Federal Trade Commission’s authority pose barriers to restricting food marketing to children. However, false, unfair, and deceptive acts and practices remain subject to regulation and provide an avenue to address marketing to young children, modern practices that have evaded regulation, and gaps in the food and beverage (...) industry’s self-regulatory approach. (shrink)

The evolution of modern human life history has involved substantial changes in the overall length of the subadult period, the introduction of a novel early childhood stage, and many changes in the initiation, termination, and character of the other stages. The fossil record is explored for evidence of this evolutionary process, with a special emphasis on middle childhood, which many argue is equivalent to the juvenile stage of African apes. Although the “juvenile” and “middle childhood” stages appear to be the (...) same from a broad comparative perspective, in that they begin with the eruption of the first molar and the achievement of the majority of adult brain size and end with sexual maturity, the detailed differences in the expression of these two stages, and how they relate to the preceding and following stages, suggest that a distinction should be maintained between them to avoid blurring subtle, but important, differences. (shrink)

Becoming a Candidate: Political Ambition and the Decision to Run for Office explores the factors that drive political ambition at the earliest stages. Using data from a comprehensive survey of thousands of eligible candidates, Jennifer L. Lawless systematically investigates what compels certain citizens to pursue elective positions and others to recoil at the notion. Lawless assesses personal factors, such as race, gender and family dynamics, that affect an eligible candidate's likelihood of considering a run for office. She also focuses (...) on eligible candidates' professional lives and attitudes toward the political system. (shrink)

The evidence reveals that young children are targeted by food and beverage advertisers but are unable to comprehend the commercial context and persuasive intent of marketing. Although the First Amendment protects commercial speech, it does not protect deceptive and misleading speech for profit. Marketing directed at children may fall into this category of unprotected speech. Further, children do not have the same First Amendment right to receive speech as adults. For the first time since the Federal Trade Commission's original attempt (...) to regulate marketing to children in the 1970s , the political, scientific, and legal climate coalesce to make the time well-suited to reevaluate the FTC's authority for action. This paper analyzes the constitutional authority for the FTC to regulate television food marketing directed at children as deceptive in light of the most robust public health evidence on the subject. (shrink)

In response to the obesity epidemic, much discussion in the public health and child advocacy communities has centered on restricting food and beverage marketing practices directed at children. A common retort to appeals for government regulation is that such advertising and marketing constitutes protected commercial speech under the First Amendment. This perception has allowed the industry to function largely unregulated since the Federal Trade Commission 's foray into the topic, termed KidVid, was terminated by an act of Congress in 1981. (...) The FTC has since focused on self-regulation as a potential solution to such concerns. However, this method of control has proven ineffective to protect children, and has led to growing recognition that federal regulation may be necessary.Since KidVid, the evidence has only mounted that children are uniquely vulnerable to the effects of advertising. Over the same time period, the exposition of commercial speech jurisprudence has plateaued, as the Supreme Court has not decided a pure commercial speech case since 2002. (shrink)

Lapses in ethical conduct by those in corporate and public authority worldwide have given business researchers and practitioners alike cause to re-examine the antecedents to personal ethical values. We explore the relationship between ethical values and an individual’s long-term orientation or LTO, defined as the degree to which one plans for and considers the future, as well as values traditions of the past. Our study also examines the role of work ethic and conservative attitudes in the formation of a person’s (...) long-term orientation and consequent ethical beliefs. Empirically testing these hypothesized relationships using data from 292 subjects, we find that long-term perspectives on tradition and planning indeed engender higher levels of ethical values. The results also support work ethic’s role in fostering tradition and planning, as well as conservatism’s positive association with planning. Additionally, we report how tradition and planning mediate the influence of conservatism and work ethic on the formation of ethical values. Limitations of the study and future research directions, as well as implications for business managers and academics, are also discussed. (shrink)

The menopause transition is associated with an increased risk of depressed mood. Preliminary evidence suggests that increased sensitivity to psychosocial stress, triggered by exaggerated perimenopausal estradiol fluctuation, may play a role. However, accurately quantifying estradiol fluctuation while minimizing participant burden has posed a methodological challenge in the field. The current pilot project aimed to test the feasibility of capturing perimenopausal estradiol fluctuation via 12 weekly measurements of estrone-3-glucuronide (E1G), a urinary metabolite of estradiol, using participant-collected urine samples in 15 euthymic (...) perimenopausal women ages 45-55 years. Furthermore, it aimed to correlate E1G fluctuation (standard deviation across the 12 E1G measurements) with weekly mood and cardiovascular, salivary cortisol, and subjective emotional responses to the Trier Social Stress Test (TSST) at weeks 4, 8 and 12. Protocol acceptability and adherence was high; furthermore, E1G fluctuation was positively associated with anhedonic depressive symptoms and weekly negative affect. E1G fluctuation was also associated with increased heart rate throughout the TSST as well as higher levels of rejection, anger, and sadness. E1G fluctuation was not significantly associated with TSST blood pressure or cortisol levels. This study suggests a feasible method of assessing estradiol fluctuation in the menopause transition and provides support for the hypothesis that perimenopausal estradiol fluctuation increases sensitivity to psychosocial stress and vulnerability to depressed mood. (shrink)

There is growing interest in the processes by which entrepreneurial opportunities are cocreated between entrepreneurs and their stakeholders. The longitudinal case study of de novo firm Wakefield Seafoods seeks to understand the underlying dynamics of phenomena that play out over time as stakeholders emerge and their contributions become essential to the opportunity formation process. The king crab data show that under conditions of uncertainty, characterized by incomplete or missing knowledge, entrepreneurial processes of experimentation, failure, and learning were effective in forming (...) and exploiting an opportunity. Moreover, contrary to existing literature that either emphasizes heroic entrepreneurs or downplays their value, this article shows that both the vision of the entrepreneur and the stakeholder contributions are critical. This detailed examination of process data shows that the cumulative actions made by entrepreneurs in concert with their stakeholders formed an opportunity that coalesced into a new market. (shrink)

This paper is one of four interrelated action papers resulting from the 2008 National Summit on Legal Preparedness for Obesity Prevention and Control. Summit participants engaged in discussions on the current state of the law with respect to obesity, nutrition and food policy, physical activity, and physical education. Participants also identified gaps in the law at all jurisdictional levels and relevant to numerous sectors and disciplines that have a stake in obesity prevention and control.The companion paper, “Assessment of Laws and (...) Legal Authorities for Obesity Prevention and Control,”identified numerous laws and policies enacted to target the three domains of healthy lifestyles, healthy places, and healthy societies. That paper identified several gaps in the law that require attention and action. This paper addresses those gaps and presents applicable laws and legal authorities that public health professionals and lawyers can consider to implement to close the gaps. (shrink)

Previous research reveals that when leaders enact environmentally specific transformational leadership, they positively affect corporate environmental responsibility. While this research provides important insights into how leaders create and shape corporate environmental responsibility, confidence in the validity of these findings is limited because the psychometric properties of the measurement of environmentally specific transformational leadership has not yet been assessed. The goal of the current research was to develop and validate a measure of environmentally specific transformational leadership. To this end, four studies (...) were conducted, which together produced a reliable and valid scale from which future research can stem. Theoretical and practical limitations are discussed. (shrink)

For Pascal, how are human beings related, or how do they relate themselves, to the summum bonum in this life? In what sense do they share in it, and how do they come to share in it? These are questions that emerge in many ways in Pascal’s writing, significantly in his concept of repos. To answer these questions, especially by elucidating what repos is for human beings in this life, I would like to begin with Graeme Hunter’s “Motion and Rest (...) in the Pensées”. Hunter’s account of Pascal is important because his purpose is to specifically address how certain aspects of modernity affect how Pascal understood repos. Hunter is certainly correct when he argues that for Pascal, repos is an orderly, directed seeking of truth—what Hunter designates as “search.” However, Hunter’s account of Pascal’s repos falls short of completion, because he neglects a crucial part of Pascal’s articulation of repos: his emphasis on the role of God’s grace in searching. By neglecting Pascal’s emphasis on grace, Hunter inadvertently depicts Pascal as reducing repos to motion, rather than envisioning them together in dialectical unity. I argue that for Pascal, it is correct to say that someone who is anxiously searching has indeed “already found,” but this cannot be solely due to human efforts: rather, it because the whole enterprise is entirely infused by grace. (shrink)

This special issue of Science, Technology, & Human Values contains articles concerned with ethics in and around scientific practice. These articles ask how organizational routines both produce and diffuse concerns about the risks and benefits of scientific research and products, and why context remains elusive in formal ethical analysis. These cases are from diverse settings, with several touching on issues of economic inequality and participation in scientific research. Each article describes in some way how cultural and institutional configurations shape ethical (...) thinking and the distribution of goods and harms in science. (shrink)

We discuss the authors' conceptualization of replication, in particular the false dichotomy of direct versus conceptual replication intrinsic to it, and suggest a broader one that better generalizes to other domains of psychological research. We also discuss their approach to the evaluation of replication results and suggest moving beyond their dichotomous statistical paradigms and employing hierarchical/meta-analytic statistical models.

The First Amendment to the US Constitution protects commercial speech from government interference. Commercial speech has been defined by the US Supreme Court as speech that proposes a commercial transaction, such as marketing and labeling. Companies that produce products associated with public health harms, such as alcohol, tobacco, and food, thus have a constitutional right to market these products to consumers. This article will examine the evolution of US law related to the protection of commercial speech, often at the expense (...) of public health. It will then identify outstanding questions related to the commercial speech doctrine and the few remaining avenues available in the United States to regulate commercial speech including the use of government speech and addressing deceptive and misleading commercial speech. (shrink)

Living with cancer: a state of perpetual emergency -- Notes -- References -- PART IV: Environmental aesthetics and resistance -- 12. The great turning -- 13. The underestimated power effects of the discourses and practices of the food justice movement -- Pessimist premise -- General system failure -- The transformative strength of the three Foucaults -- How practices and discourses of the food justice movement illustrate the three Foucaults -- The biopolitical disaster of industrial agriculture -- Via Campesina: peasant knowledge, (...) land and power -- Urban agriculture: eaters' resistance and practices for a new food system -- Slow Food: putting eaters' culture back into "agriculture" -- Conclusion: get your hands dirty! -- Acknowledgements -- References -- 14. Interrogating the neoliberal biopolitics of the sustainable development-resilience nexus -- The political genealogy of sustainable development -- From security to resilience -- The disastrous and politically debased subject of resilience -- Conclusion: development contra neoliberalism? -- References -- 15. The aesthetics of triage: Towards life beyond survival -- Mechanism of a triage -- Photographic triage -- The cinematic triage -- Beyond survival -- References -- 16. End piece: Dealing with disastrous life -- Extra/ordinary disasters -- Dread life -- Towards a new critical framework? -- References -- Index. (shrink)