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)

Lee emphasizes the need to better understand the moral relationship between researchers and participants connoted by precision medicine, with the framework of “the gift” offering bioethics a...

When phenomenological descriptions of perceptual experience are given it often seems that the distinction between mode and content of perceptual experience is not given the attention it deserves and that consequently certain philosophical difficulties develop which might have been avoided. While it will no doubt be admitted that the distinction between the “how” and the “what” of appearing is of importance in the phenomenology of perception, at first sight the making of such a distinction may seem so simple as to (...) be hardly worth discussing. It may seem to involve a mere matter of distinguishing modifiers of the verb “to perceive” from this verb's direct objects and their modifiers, but further consideration shows the situation is not that simple. In some cases there are alternative ways of phenomenological description such that what one description seems to indicate to be content is what the other description seems to indicate to be mode, and yet the two descriptions are seen to be equivalent in intent. If we analyze one expression in accordance with its grammar then the alternative expression must be considered idiomatic, that is, not analyzable in accordance with its grammar, for otherwise the two expressions could not be considered compatible. (shrink)

Freedom interpreted as absence of restraints, as such, is a vacuous ideal. It requires reference to some setting and course of action in order to distinguish those restraints that block human effort from those, say, that support it. More broadly, this notion of freedom has little meaning and less value without some external criterion for evaluating human action and its conditions. Many thinkers have argued that the. criterion must be the absolute Truth ? truth that is unconditioned, indubitable, and imperative. (...) They have often argued that there is no freedom of error, and that the many persons who do not know such Truth are free only in obeying the few who do. This concept of freedom is often regarded as intolerable. A third possibility is to interpret freedom as a name for a range of significant alternatives for thought and action. Freedom, here, is compatible with truth interpreted in terms of the process of inquiry, rather than as substantive possession. It is a necessary condition for judging which restraints are real obstacles and which courses of action may be harmless, legitimate or good. The third meaning, especially, is illustrated with reference to the freedoms of utterance (expression) and speech (communication). (shrink)

Although Donald Davidson is best known for his account of motivating reasons, towards the end of his life he did write about normative reasons, arguing for a novel form of realism we might call anomalous naturalism: anomalous, because it is not just non-reductive but also non-revisionary, refusing to compromise in any way on the thought that the prescriptive authority of normative reasons is objective and reaches to all possible agents; naturalism, because it still treats normative properties as perfectly ordinary causal (...) properties, and thus avoids many of the epistemological problems that bedevil realisms of the sort recently advanced by Thomas Nagel, Derek Parfit, and T. M. Scanlon. In the first section of the paper, I discuss Davidson’s understanding of objective prescriptivity and one important challenge that it faces. In the second section, I show how an answer to this challenge can be found in Davidson’s holism of the mental. As we shall see, Davidson’s holism of the mental makes the possibility of strongly prescriptive properties much easier to take seriously. In the final section of the paper, I take up various grounds for doubting that such properties could also be causal. (shrink)

This, the third edition of Fundamentals of Experimental Design, has five added chapters - those on regression (Chapters 12, 14, and 15), multivariate analysis (Chapter 18), and the matrix algebra appropriate to the level of presentation of this material (Chapter 13). I have noted in the preface other additions in this third edition. The added material should enhance the value of the book as a textbook and a reference. Given these additions, however, alternative approaches in using the current edition as (...) a textbook may merit consideration. It may help to note that Chapters 16 and 17 (analysis of covariance, trend analysis) do not depend on the material in Chapters 12 through 15, although the student should know something about simple linear regression to be able to understand fully the material in Chapters 16 and 17. In any event, the instructor who wants to teach only the material in the first two editions can do so by dropping the added chapters - 12 through 15, and 18 - from the syllabus. (shrink)

What is the value of having medical students engage in creative production as part of their learning? Creating something new requires medical students to take risks and even to fail--something they tend to be neither accustomed to nor comfortable with doing. “Making stuff” can help students prepare for such failures in a controlled environment that doesn’t threaten their professional identities. Furthermore, doing so can facilitate students becoming resilient and creative problem-solvers who strive to find new ways to address vexing questions. (...) Though creating something new can be fun, this is not the main outcome of interest. Rather, the principle reason we recommend devoting precious curricular time to creative endeavors is because it helps medical students become better doctors. (shrink)

In recent years more support has been given to the idea of Health Education and there are strong reasons for believing that such schemes of prevention may receive much more financial backing from governments. It is being realised, also, that many of our 'ills' may be attributed to an over-reliance on medical technology. There is reason to believe that in years to come the emphasis will be placed on the fostering of mental health in programmes of Health Education enabling the (...) individual to take a responsible attitude in learning how to seek out health hazards for himself without over-reliance on others. (shrink)

Motivated by a recent proof of free choices in linking equations to the experiments they describe, I clarify some relations among purely mathematical entities featured in quantum mechanics (probabilities, density operators, partial traces, and operator-valued measures), thereby allowing applications of these entities to the modeling of a wider variety of physical situations. I relate conditional probabilities associated with projection-valued measures to conditional density operators identical, in some cases but not in others, to the usual reduced density operators. While a fatal (...) obstacle precludes associating conditional density operators with general non-projective measures, tensor products of general positive operator-valued measures (POVMs) are associated with conditional density operators. This association together with the free choice of probe particles allows a postulate of state reductions to be replaced by a theorem. An application shows an equivalence between one form of quantum key distribution and another with respect to certain eavesdropping attacks. (shrink)

The study seeks to determine the influence of economic reward on unethical behavior with the help of a Reward Punishment Model. The model postulates that ethical or unethical behavior depends on the relationship among three factors: economic reward or benefit that a businessperson receives from the unethical practice, the severity of punishment the society imposes for such wrong-doing, and the probability of receiving the punishment. A short survey, which contained a hypothetical ethical situation, was administered to 251 respondents. The findings (...) indicate that the probability of risk-taking decreases as the level of punishmentand the chance of being caught increases. (shrink)

In recent years sense–datum theories have received much criticism, but there is one type of error frequently involved in the sense–datum concept which is in need of further consideration. This error consists in a category confusion of such a nature that what is properly regarded as perceptual mode is treated as though it were the attribute of a thing. The mode or manner of perception is mistakenly transferred to the sense–datum with results which a little careful reflection shows to be (...) absurd. In what follows a specific case of this error connected with the notion of phenomenal organization will be discussed. (shrink)

Most computational theories of cognition lack a representation of physiology. Understanding the cognitive effects of compounds present in the environment is important for explaining and predicting changes in cognition and behavior given exposure to toxins, pharmaceuticals, or the deprivation of critical compounds like oxygen. This research integrates physiologically based pharmacokinetic (PBPK) model predictions of caffeine concentrations in blood and tissues with ACT-R's fatigue module to predict the effects of caffeine on fatigue. Mapping between the PBPK model parameters and ACT-R model (...) parameters is informed by the neurophysiological literature and established associations between ACT-R modules and brain regions. The results from three such parameter mappings are explored to explain observed data from sleep-deprived participants performing the psychomotor vigilance test with and without caffeine. Predicted caffeine concentrations in the brain are used to modulate procedural parameters in the fatigue module to explain caffeine's effects on multiple performance metrics. (shrink)