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)

© 2017. The American Astronomical Society. All rights reserved.We present new observations of the low-mass companion to HD 984 taken with the Gemini Planet Imager as a part of the GPI Exoplanet Survey campaign. Images of HD 984 B were obtained in the J and H bands. Combined with archival epochs from 2012 and 2014, we fit the first orbit to the companion to find an 18 au orbit with a 68% confidence interval between 14 and 28 au, an eccentricity (...) of 0.18 with a 68% confidence interval between 0.05 and 0.47, and an inclination of 119°with a 68% confidence interval between 114°and 125°. To address the considerable spectral covariance in both spectra, we present a method of splitting the spectra into low and high frequencies to analyze the spectral structure at different spatial frequencies with the proper spectral noise correlation. Using the split spectra, we compare them to known spectral types using field brown dwarf and low-mass star spectra and find a best-fit match of a field gravity M6.5 ±1.5 spectral type with a corresponding temperature of K. Photometry of the companion yields a luminosity of log=2.88 ± 0.07 dex with DUSTY models. Mass estimates, again from DUSTY models, find an age-dependent mass of 34 ±1 to 95 ±4 M Jup. These results are consistent with previous measurements of the object. (shrink)

Progressive supranuclear palsy is a movement disorder with prominent tau neuropathology. Brain diseases with abnormal tau deposits are called tauopathies, the most common of which is Alzheimer's disease. Environmental causes of tauopathies include repetitive head trauma associated with some sports. To identify common genetic variation contributing to risk for tauopathies, we carried out a genome-wide association study of 1,114 individuals with PSP and 3,247 controls followed by a second stage in which we genotyped 1,051 cases and 3,560 controls for the (...) stage 1 SNPs that yielded P ≤ 10-3. We found significant previously unidentified signals associated with PSP risk at STX6, EIF2AK3 and MOBP. We confirmed two independent variants in MAPT affecting risk for PSP, one of which influences MAPT brain expression. The genes implicated encode proteins for vesicle-membrane fusion at the Golgi-endosomal interface, for the endoplasmic reticulum unfolded protein response and for a myelin structural component. © 2011 Nature America, Inc. All rights reserved. (shrink)

The current research investigates a combination of two instructional approaches, tutored problem solving and worked examples. Tutored problem solving with automated tutors has proven to be an effective instructional method. Worked‐out examples have been shown to be an effective complement to untutored problem solving, but it is largely unknown whether they are an effective complement to tutored problem solving. Further, while computer‐based learning environments offer the possibility of adaptively transitioning from examples to problems while tailoring to an individual learner, the (...) effectiveness of such machine‐adapted example fading is largely unstudied. To address these research questions, one lab and one classroom experiment were conducted. Both studies compared a standard Cognitive Tutor with two example‐enhanced Cognitive Tutors, in which the fading of worked‐out examples occurred either in a fixed way or adaptively. Results indicate that the adaptive fading of worked‐out examples leads to higher transfer performance on delayed posttests than the other two methods. (shrink)

We present here a direct elementary construction of continuous utility functions on perfectly separable totally preordered sets that does not make use of the well-known Debreu’s open gap lemma. This new construction leans on the concept of a separating countable decreasing scale. Starting from a perfectly separable totally ordered structure, we give an explicit construction of a separating countable decreasing scale, from which we show how to get a continuous utility map.

Mark Coeckelbergh (Int J Soc Robot 1:217–221, 2009) argues that robot ethics should investigate what interaction with robots can do to humans rather than focusing on the robot’s moral status. We should ask what robots do to our sociality and whether human–robot interaction can contribute to the human good and human flourishing. This paper extends Coeckelbergh’s call and investigate what it means to live with disembodied AI-powered agents. We address the following question: Can the human–AI interaction contribute to our moral (...) development? We present an empirically informed philosophical analysis of how the AI personal assistant Siri changes its users’ way of life, based on the responses obtained from 20 semi-directive individual interviews with Siri users. We identify changes in the users’ social interaction associated with the adoption of Siri. These changes include: (1) the indirect effect of reducing opportunities of human interaction, (2) the second-order effect of diminished expectations toward each other in a community, and (3) the acquired preference to obtain hassle-free interaction with Siri over human interaction. We examine them in relation to concerns that are voiced in the current debates over the rise of AI, namely the suspicion that humans could become overly reliant on AI (Danaher 2019) and the worry that social AI could impede on moral development (Fröding and Peterson, Ethics Inf Technol 23:207–214, 2012; Li, Ethics Inf Technol 23:543–550, 2021). We analyze the ethical costs that come from these changes in light of virtue ethics and address potential objections along the way. We end by offering directions for thinking about how to live with AI personal assistant while preserving favorable conditions for moral development. (shrink)

Inleiding in het denken van drie vroeg-christelijke auteurs, zoals dat zich ontwikkelde tijdens de confrontatie van het christendom met het jodendom en de hellenistische filosofie.

The Declaration of Helsinki and the Council of the International Organization of Medical Sciences provide guidance on standards of care and prevention in clinical trials. In the current and increasingly challenging research environment, the ethical status of a trial design depends not only on protection of participants, but also on social value, feasibility, and scientific validity. Using the example of a study assessing efficacy of a vaccine to prevent human papilloma virus in HIV-1 infected adolescent girls in low resource countries (...) without access to the vaccine, we compare several trial designs which rank lower on some criteria and higher on others, giving rise to difficult trade-offs. This case demonstrates the need for developing more nuanced guidance documents to help researchers balance these often conflicting criteria. (shrink)

Mind-body dualism conceptualizes mind and body as distinct, but there are different ways that dualism may be instantiated. In this study, we examined how Hierarchical Dualism (the belief that mind and body are distinct, and the mind is superior) and Mutual-Influence Dualism (the belief that mind and body are separate but interrelate) related to health behaviors and mental health in three student samples: exclusively queer, exclusively straight, and a mixed university subject pool (N = 535). Participants in each sample endorsed (...) Mutual-Influence Dualism at a higher rate than Hierarchical Dualism. Mutual-Influence dualism was consistently associated with greater engagement in health-promoting behaviors and greater well-being, whereas Hierarchical Dualism differed by sample. These results suggest that dualist beliefs do not uniformly shape the lives of those who hold them: rather, the relation between dualist beliefs and health differs as a function of the type of dualism and the identities we hold. (shrink)

Increasing ethical attention and debate is focusing on whether individuals who take part in clinical trials should be given access to post-trial care. However, the main focus of this debate has been upon drug trials undertaken in low-income settings. To broaden this debate, we report findings from interviews with individuals (n = 24) who participated in a clinical trial of a closed-loop system, which is a medical device under development for people with type 1 diabetes that automatically adjusts blood glucose (...) to help keep it within clinically recommended ranges. Individuals were recruited from UK sites and interviewed following trial close-out, at which point the closed-loop had been withdrawn. While individuals were stoical and accepting of the requirement to return the closed-loop, they also conveyed varying degrees of distress. Many described having relaxed diabetes management practices while using the closed-loop and having become deskilled as a consequence, which made reverting back to pre-trial regimens challenging. Participants also described unanticipated consequences arising from using a closed-loop. As well as deskilling, these included experiencing psychological and emotional benefits that could not be sustained after the closed-loop had been withdrawn and participants reevaluating their pre- and post-trial life in light of having used a closed-loop and now perceiving this life much more negatively. Participants also voiced frustrations about experiencing better blood glucose control using a closed-loop and then having to revert to using what they now saw as antiquated and imprecise self-management tools. We use these findings to argue that ethical debates about post-trial provisioning need to be broadened to consider potential psychological and emotional harms, and not just clinical harms, that may result from withdrawal of investigated treatments. We also suggest that individuals may benefit from information about potential nonclinical harms to help make informed decisions about trial participation. (shrink)