Large-scale sequencing tests, including whole-exome and whole-genome sequencing, are rapidly moving into clinical use. Sequencing is already being used clinically to identify therapeutic opportunities for cancer patients who have run out of conventional treatment options, to help diagnose children with puzzling neurodevelopmental conditions, and to clarify appropriate drug choices and dosing in individuals. To evaluate and support clinical applications of these technologies, the National Human Genome Research Institute and National Cancer Institute have funded studies on clinical and research sequencing under (...) the Clinical Sequencing Exploratory Research program as well as studies on return of results. Most of these studies use sequencing in real-world clinical settings and collect data on both the application of sequencing and the impact of receiving genomic findings on study participants. They are occurring in the context of controversy over how to obtain consent for exome and genome sequencing. (shrink)

Life history theory is a fruitful source of testable hypotheses about human individual differences. However, this field of study is beset by unresolved debates about basic concepts and methods. One of these controversies concerns the usefulness of instruments that purport to tap a unidimensional life history factor based on a set of self-reported personality, social, and attitudinal variables. Here, we take a novel approach to analyzing the psychometrics of two variants of the Arizona Life History Battery: the Mini-K and the (...) K-SF-42. Psychological network analysis generates models in which psychological variables comprise the nodes of a network, while partial correlation coefficients between these variables comprise the edges of the network. Centrality indices operationalize each node’s importance based on the pattern of the connections in which that node plays a role. Because childhood environments are hypothesized to influence adult LH, we tested the hypothesis that among the Mini-K items, and the K-SF-42 scales, those that tap relationships with parents are central to the networks constructed from these instruments. In an MTurk sample and an undergraduate sample that completed the Mini-K, and an MTurk sample that completed the K-SF-42, this hypothesis was falsified. Indeed, the “relationships with parents” items were among the most peripheral in all three networks. We propose that network analysis, as an alternative to latent variable modeling, offers considerable potential to test hypotheses about the input-output mappings of specific evolved psychological mechanisms. (shrink)

Working memory is the system responsible for maintaining and manipulating information, in the face of ongoing distraction. In turn, WM span is perceived to be an individual-differences construct reflecting the limited capacity of this system. Recently, however, there has been some evidence to suggest that WM capacity can increase through training, raising the possibility that training can functionally alter the neural structures supporting WM. To address the hypothesis that the neural substrates underlying WM are targeted by training, we conducted a (...) meta-analysis of functional magnetic resonance imaging studies of WM training using Activation Likelihood Estimation. Our results demonstrate that WM training is associated exclusively with decreases in blood oxygenation level-dependent responses in clusters within the fronto-parietal system that underlie WM, including the bilateral inferior parietal lobule, middle and superior frontal gyri, and medial frontal gyrus bordering on the cingulate gyrus. We discuss the various psychological and physiological mechanisms that could be responsible for the observed reductions in the BOLD signal in relation to WM training, and consider their implications for the construct of WM span as a limited resource. (shrink)

Science, technology, engineering, and mathematics disciplines commonly illustrate 3D relationships in diagrams, yet these are often challenging for students. Failing to understand diagrams can hinder success in STEM because scientific practice requires understanding and creating diagrammatic representations. We explore a new approach to improving student understanding of diagrams that convey 3D relations that is based on students generating their own predictive diagrams. Participants’ comprehension of 3D spatial diagrams was measured in a pre- and post-design where students selected the correct 2D (...) slice through 3D geologic block diagrams. Generating sketches that predicated the internal structure of a model led to greater improvement in diagram understanding than visualizing the interior of the model without sketching, or sketching the model without attempting to predict unseen spatial relations. In addition, we found a positive correlation between sketched diagram accuracy and improvement on the diagram comprehension measure. Results suggest that generating a predictive diagram facilitates students’ abilities to make inferences about spatial relationships in diagrams. Implications for use of sketching in supporting STEM learning are discussed. (shrink)

The nonmetaphysical interpretation of Hegel's philosophy asserts that the metaphysical reading is not credible and so his philosophy must be rationally reconstructed so as to elide its metaphysical aspects. This article shows that the thesis of the extended mind approaches the metaphysical reading, thereby undermining denials of its credibility and providing the resources to articulate and defend the metaphysical reading of Hegel's philosophy. This fully rehabilitates the metaphysical Hegel. The article does not argue for the truth of the metaphysical Hegel's (...) claims. Rather, it defends the correctness of reading his philosophy as metaphysical. (shrink)

Gliomas are diffuse and invasive brain tumors with the nefarious ability to evade even seemingly draconian treatment measures. Here we introduce a simple mathematical model for drug delivery of chemotherapeutic agents to treat such a tumor. The model predicts that heterogeneity in drug delivery related to variability in vascular density throughout the brain results in an apparent tumor reduction based on imaging studies despite continual spread beyond the resolution of the imaging modality. We discuss a clinical example for which the (...) model-predicted scenario is relevant. The analysis and results suggest an explanation for the clinical problem of the long-standing confounding observation of shrinkage of the lesion in certain areas of the brain with continued growth in other areas. (shrink)

We seek to constitute the extended mind’s fourth wave, socially distributed group cognition, and we do so by thinking with Hegel. The extended mind theory’s first wave invokes the parity principle, which maintains that processes that occur external to the organism’s skin should be considered mental if they are regarded as mental when they occur inside the organism. The second wave appeals to the complementarity principle, which claims that what is crucial is that these processes together constitute a cognitive system. (...) The first two waves assume that cognitive systems have well-defined territories or boundaries, and that internal and external processes do not switch location. The third wave rejects these assumptions, holding instead that internal processes are not privileged, and internal and external processes can switch, and that processes can be distributed among individuals. The fourth wave would advocate socially distributed group cognition. Groups are deterritorialized collective agents; they are ineliminatively and irreducibly real, they have mental states. Individuals constitute groups, but groups also constitute individuals. What counts as an individual and a group is a function of the level of analysis. And they are conflicted. (shrink)

The nonmetaphysical interpretation of Hegel's philosophy asserts that the metaphysical reading is not credible and so his philosophy must be rationally reconstructed so as to elide its metaphysical aspects. This article shows that the thesis of the extended mind approaches the metaphysical reading, thereby undermining denials of its credibility and providing the resources to articulate and defend the metaphysical reading of Hegel's philosophy. This fully rehabilitates the metaphysical Hegel. The article does not argue for the truth of the metaphysical Hegel's (...) claims. Rather, it defends the correctness of reading his philosophy as metaphysical. (shrink)

Obstructive sleep apnea (OSA) severely impacts sleep and has long-term health consequences. Treating sleep apnea with continuous positive airway pressure (CPAP) not only relieves obstructed breathing, but also improves sleep. CPAP improves sleep by reducing apnea-induced awakenings. CPAP may also improve sleep by enhancing features of sleep architecture assessed with electroencephalography (EEG) that maximize sleep depth and neuronal homeostasis, such as the slow oscillation and spindle EEG activity, and by reducing neurophysiological arousal during sleep (i.e., beta EEG activity). We examined (...) cross-sectional differences in quantitative EEG characteristics of sleep, assessed with power spectral analysis, in 29 adults with type 2 diabetes treated with CPAP and 24 adults undergoing SHAM CPAP treatment (total n = 53). We then examined changes in spectral characteristics of sleep as the SHAM group crossed over to active CPAP treatment (n = 19). Polysomnography (PSG) from the CPAP titration night was used for the current analyses. Analyses focused on EEG frequencies associated with sleep maintenance and arousal. These included the slow oscillation (0.5–1 Hz), sigma activity (12–16 Hz, spindle activity), and beta activity (16–20 Hz) in F3, F4, C3, and C4 EEG channels. Whole night non-rapid eye movement (NREM) sleep and the first period of NREM spectral activity were examined. Age and sex were included as covariates. There were no group differences between CPAP and SHAM in spectral characteristics of sleep architecture. However, SHAM cross-over to active CPAP was associated with an increase in relative 12–16 Hz sigma activity across the whole night and a decrease in average beta activity across the whole night. Relative slow oscillation power within the first NREM period decreased with CPAP, particularly for frontal channels. Sigma and beta activity effects did not differ by channel. These findings suggest that CPAP may preferentially enhance spindle activity and mitigate neurophysiological arousal. These findings inform the neurophysiological mechanisms of improved sleep with CPAP and the utility of quantitative EEG measures of sleep as a treatment probe of improvements in neurological and physical health with CPAP. (shrink)

In much the same way that genomic technologies are changing the complexion of biomedical research, the issues they generate are changing the agenda of IRBs and research ethics. Many of the biggest challenges facing traditional research ethics today — privacy and confidentiality of research subjects; ownership, control, and sharing of research data; return of results and incidental findings; the relevance of group interests and harms; the scope of informed consent; and the relative importance of the therapeutic misconception — have become (...) important policy issues over the last 20 years because of the ways they have been magnified by genomic research efforts. Research that examines the ethical, legal, and social implications of human genomics research has become a burgeoning international field of scholarship over the last 20 years, thanks in part to its support first by the genome research funding bodies in the U.S. and then by national science agencies in other countries. (shrink)

When applied in the health sector, AI-based applications raise not only ethical but legal and safety concerns, where algorithms trained on data from majority populations can generate less accurate or reliable results for minorities and other disadvantaged groups.

The proliferation of multistakeholder initiatives (MSIs) over the past years has sparked an intense debate on the political role of corporations in the governance of global business conduct. To gain a better understanding of corporate political behavior in multistakeholder governance, this article investigates how firms construct a political identity when participating in MSIs. Based on an in-depth case study of the Accord on Fire and Building Safety in Bangladesh—an MSI established after the collapse of the Rana Plaza garment factory complex (...) in 2013 to improve working conditions in the Bangladeshi garment industry—we introduce the construct of a political CSR (corporate social responsibility) identity (PCSRI) and explore how firms construct their PCSRIs in MSIs. Employing a qualitative, inductive theory-building method, we analyze interviews and archival data to develop a framework that elucidates how companies construct their PCSRIs within a continuum ranging from conservative to progressive. We show that constructing a PCSRI involves enacting specific, yet interrelated, political strategies that are themselves shaped by several forces over time. This article contributes to the literature by providing a political perspective on organizational identity construction that extends the emerging integrative perspective in political corporate social responsibility (PCSR) research. We suggest that MSIs should be conceptualized as inherently political governance mechanisms that are driven by multidirectional and dynamic political processes of identity construction. Our study shows that corporate political engagement in MSIs is a more nuanced and complex phenomenon than presently theorized. (shrink)

Socially assistive robotics is a growing area of research. Evaluating SAR systems presents novel challenges. Using a robot for a socially assistive task can have various benefits and ethical implications. Many questions are important to understanding whether a robot is effective for a given application domain. This paper describes several benchmarks for evaluating SAR systems. There exist numerous methods for evaluating the many factors involved in a robot’s design. Benchmarks from psychology, anthropology, medicine, and human–robot interaction are proposed as measures (...) of success in evaluating a given SAR system and its impact on the user and broader population. (shrink)

Socially assistive robotics is a growing area of research. Evaluating SAR systems presents novel challenges. Using a robot for a socially assistive task can have various benefits and ethical implications. Many questions are important to understanding whether a robot is effective for a given application domain. This paper describes several benchmarks for evaluating SAR systems. There exist numerous methods for evaluating the many factors involved in a robot’s design. Benchmarks from psychology, anthropology, medicine, and human–robot interaction are proposed as measures (...) of success in evaluating a given SAR system and its impact on the user and broader population. (shrink)

It is shown that Russell's Paradox can be solved without advocating the Theory of Types, and also that the Liar's Paradox can be solved in much the same way. Neither solution requires that any of our commonsense-based beliefs be revised, let alone jettisoned. It is also shown that the Theory of Types is false.

Federal policies on human subjects research have undergone a progressive transformation. In the early decades of the twentieth century, federal policies largely relied on the discretion of investigators to decide when and how to conduct research. This approach gradually gave way to policies that augmented investigator discretion with externally imposed protections. We may now be entering an era of even more stringent external protections. Whether the new policies effectively absolve investigators of personal responsibility for conducting ethical research, and whether it (...) is wise to do so, remains to be seen. (shrink)

Background: When a genetic mutation is identified in a family member, internationally, it is usually the proband’s or another responsible family member’s role to disclose the information to at-risk relatives. However, both active and passive non-disclosure in families occurs: choosing not to communicate the information or failing to communicate the information despite intention to do so, respectively. The ethical obligations to prevent harm to at-risk relatives and promote the duty of care by genetic health professionals is in conflict with Privacy (...) laws and professional regulations that prohibits disclosure of information to a third party without the consent of the proband. In New South Wales, Australia, amendments to Privacy legislation permits such disclosure to living genetic relatives with the process defined under guidelines although there is no legal duty to warn. This study assessed NSW GHP’s awareness and experience of the legislation and guidelines. Methods: An online survey collected demographics; theoretical knowledge; clinical scenarios to assess application knowledge; attitudes; confidence; experience with active non-disclosure. A link to correct answers was provided after completion. Knowledge scores above the median for non-parametric data or above the mean for parametric data were classified as ‘good’ or ‘poor’. Chi square tests assessed associations between confidence and knowledge scores. Results: While many of the 37 participants reported reading the guidelines, there was limited awareness of their scope and clinical application; that there is no legal duty to warn; and that the threat does not need to be imminent to warrant disclosure. No association between confidence and ‘good’ theoretical or applied clinical knowledge was identified. Uncertainty of their professional responsibility was identified and in the several case examples of active non-disclosure that were reported this uncertainty reflected the need for further understanding of the guidelines in regard to the processes required before disclosure was initiated. Conclusions: There is a need for further education and training about the guidelines associated with the legislation that would be relevant to support disclosure. The findings may inform future strategies to support introduction of policy changes in other jurisdictions where similar regulatory regimes are introduced. (shrink)

ABSTRACT:Bioethicists today are taking a greater role in the design and implementation of emerging technologies by "embedding" within the development teams and providing their direct guidance and recommendations. Ideally, these collaborations allow ethical considerations to be addressed in an active, iterative, and ongoing process through regular exchanges between ethicists and members of the technological development team. This article discusses a challenge to this embedded ethics approach—namely, that bioethical guidance, even if embraced by the development team in theory, is not easily (...) actionable in situ. Many of the ethical problems at issue in emerging technologies are associated with preexisting structural, socioeconomic, and political factors, making compliance with ethical recommendations sometimes less a matter of choice and more a matter of feasibility. Moreover, incentive structures within these systemic factors maintain them against reform efforts. The authors recommend that embedded bioethicists utilize principles from behavioral science (such as behavioral economics) to better understand and account for these incentive structures so as to encourage the ethically responsible uptake of technological innovations. (shrink)

Ethiopian agriculture is changing as new actors, relationships, and policies influence the ways in which small-scale, resource-poor farmers access and use information and knowledge in their agricultural production decisions. Although these changes suggest new opportunities for smallholders, too little is known about how changes will ultimately improve the wellbeing of smallholders in Ethiopia. Thus, we examine whether these changes are improving the ability of smallholders to innovate and thus improve their own welfare. In doing so, we analyze interactions between smallholders (...) and other actors to provide new perspectives on the role played by smallholder innovation networks in the agricultural sector by drawing on data from community case studies conducted in 10 localities. Findings suggest that public extension and administration exert a strong influence over smallholder networks, potentially crowding out market-based and civil society actors, and thus limiting beneficial innovation processes. From a policy perspective, the findings suggest the need to further explore policies and programs that create more space for market and civil society to participate in smallholder innovation networks and improve welfare. From a conceptual and methodological perspective, our findings suggest the need to incorporate rigorous applications of social network analysis into the application of innovation systems theory. (shrink)

The ethical principle of ‘respect for persons’ in clinical research has traditionally focused on protecting individuals’ autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals’ rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English or Spanish (...) about their experiences with respect in the study and perceptions of how researchers in a hypothetical observational study could convey respect or a lack thereof. Most interviewees were female, identified as Hispanic/Latino or non-Hispanic white, reported annual household income under US$60 000 and did not have a Bachelor’s degree ; 30% had limited health literacy. We identified four key domains for demonstrating respect: personal study team interactions, with an emphasis on empathy, appreciation and non-judgment; study communication processes, including following up and sharing results with participants; inclusion, particularly ensuring materials are understandable and procedures are accessible; and consent and authorisation, including providing a neutral informed consent and keeping promises regarding privacy protections. While the experience of respect is inherently subjective, these findings highlight four key domains that may meaningfully demonstrate respect to potential and current research participants. Further empirical and normative work is needed to substantiate these domains and evaluate how best to incorporate them into the practice of research. (shrink)

Through case studies that highlight the type of information that is seldom reported in the news, Faces of Environmental Racism exposes the type and magnitude of environmental racism, both domestic and international. The essays explore the justice of current environmental practices, asking such questions as whether cost-benefit analysis is an appropriate analytic technique and whether there are alternate routes to sustainable development in the South.

Through case studies that highlight the type of information that is seldom reported in the news, Faces of Environmental Racism exposes the type and magnitude of environmental racism, both domestic and international. The essays explore the justice of current environmental practices, asking such questions as whether cost-benefit analysis is an appropriate analytic technique and whether there are alternate routes to sustainable development in the South.

Background: Clinical genomic implementation studies pose challenges for informed consent. Consent forms often include complex language and concepts, which can be a barrier to diverse enrollment, and these studies often blur traditional research-clinical boundaries. There is a move toward self-directed, web-based research enrollment, but more evidence is needed about how these enrollment approaches work in practice. In this study, we developed and evaluated a literacy-focused, web-based consent approach to support enrollment of diverse participants in an ongoing clinical genomic implementation study. (...) Methods: As part of the Cancer Health Assessments Reaching Many (CHARM) study, we developed a web-based consent approach that featured plain language, multimedia, and separate descriptions of clinical care and research activities. CHARM offered clinical exome sequencing to individuals at high risk of hereditary cancer. We interviewed CHARM participants about their reactions to the consent approach. We audio recorded, transcribed, and coded interviews using a deductively and inductively derived codebook. We reviewed coded excerpts as a team to identify overarching themes. Results: We conducted 32 interviews, including 12 (38%) in Spanish. Most (69%) enrolled without assistance from study staff, usually on a mobile phone. Those who completed enrollment in one day spent an average of 12 minutes on the consent portion. Interviewees found the information simple to read but comprehensive, were neutral to positive about the multimedia support, and identified increased access to testing in the study as the key difference from clinical care. Conclusions: This study showed that interviewees found our literacy-focused, web-based consent approach acceptable; did not distinguish the consent materials from other online study processes; and valued getting access to testing in the study. Overall, conducting empirical bioethics research in an ongoing clinical trial was useful to demonstrate the acceptability of our novel consent approach but posed practical challenges. (shrink)