The child was 2 years, 8 months old and weighed 25 pounds, one-fifth the weight of her mother, for whom she was to be the bone marrow donor. The mother had suffered a relapse of acute myelogenous leukemia; her physicians recommended a bone marrow transplant. The child was the closest human leukocyte antigen match and thus the best donor candidate for her mother's transplant.

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)

Congenital deafness is one of the most common birth defects reported. Approximately 70% of congenital deafness is non-syndromic, and approximately 80% of non-syndromic hearing loss results from a genetic cause. Middleton et al.’s1998 study highlighted the negative attitudes of culturally Deaf individuals towards genetic testing for genes known to cause hearing loss. While studies concerning genetic testing for deafness genes reference Middleton’s study, to our knowledge a re-evaluation of the attitudes of Deaf individuals towards genetic testing has not been conducted (...) recently. The purpose of this study is to re-establish attitudes of Deaf individuals towards genetic testing of genes known to cause hearing loss. A computer-based questionnaire was distributed to members of the Deaf community. Responses of participants were recorded and analyzed. The primary investigator then attended Deaf community events and the 2015 Alabama Association of the Deaf Conference, and recruited individuals interested in participating in the study. The surveys were distributed to these individuals and their anonymous responses were analyzed. Our results show there are more positive attitudes within the Deaf community towards genetic counseling, genetic testing, and prenatal testing of genes known to cause hearing loss than were previously documented, although negative attitudes are still present. Additionally, our study shows there is a desire among members of the Deaf community to learn more about and potentially receive these services, despite the fact they are rarely offered by healthcare providers. (shrink)

Confirmed COVID-19 cases in the United States increased exponentially, quickly leading to a pandemic in 2020, which created a serious public-health emergency. During the period in which the COVID-1...

Given its non-invasive nature, there is increasing interest in the use of transcutaneous vagus nerve stimulation across basic, translational and clinical research. Contemporaneously, tVNS can be achieved by stimulating either the auricular branch or the cervical bundle of the vagus nerve, referred to as transcutaneous auricular vagus nerve stimulation and transcutaneous cervical VNS, respectively. In order to advance the field in a systematic manner, studies using these technologies need to adequately report sufficient methodological detail to enable comparison of results between (...) studies, replication of studies, as well as enhancing study participant safety. We systematically reviewed the existing tVNS literature to evaluate current reporting practices. Based on this review, and consensus among participating authors, we propose a set of minimal reporting items to guide future tVNS studies. The suggested items address specific technical aspects of the device and stimulation parameters. We also cover general recommendations including inclusion and exclusion criteria for participants, outcome parameters and the detailed reporting of side effects. Furthermore, we review strategies used to identify the optimal stimulation parameters for a given research setting and summarize ongoing developments in animal research with potential implications for the application of tVNS in humans. Finally, we discuss the potential of tVNS in future research as well as the associated challenges across several disciplines in research and clinical practice. (shrink)

Given its non-invasive nature, there is increasing interest in the use of transcutaneous vagus nerve stimulation across basic, translational and clinical research. Contemporaneously, tVNS can be achieved by stimulating either the auricular branch or the cervical bundle of the vagus nerve, referred to as transcutaneous auricular vagus nerve stimulation and transcutaneous cervical VNS, respectively. In order to advance the field in a systematic manner, studies using these technologies need to adequately report sufficient methodological detail to enable comparison of results between (...) studies, replication of studies, as well as enhancing study participant safety. We systematically reviewed the existing tVNS literature to evaluate current reporting practices. Based on this review, and consensus among participating authors, we propose a set of minimal reporting items to guide future tVNS studies. The suggested items address specific technical aspects of the device and stimulation parameters. We also cover general recommendations including inclusion and exclusion criteria for participants, outcome parameters and the detailed reporting of side effects. Furthermore, we review strategies used to identify the optimal stimulation parameters for a given research setting and summarize ongoing developments in animal research with potential implications for the application of tVNS in humans. Finally, we discuss the potential of tVNS in future research as well as the associated challenges across several disciplines in research and clinical practice. (shrink)

In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often‐ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science—including genomewide association studies and polygenic indexes—can and cannot tell us, as well as its risks and potential benefits. They conclude with a discussion of responsible behavior in the context of SBG research. (...) SBG research that compares individuals within a group according to a “sensitive” phenotype requires extra attention to responsible conduct and to responsible communication about the research and its findings. SBG research (1) on sensitive phenotypes that (2) compares two or more groups defined by (a) race, (b) ethnicity, or (c) genetic ancestry (where genetic ancestry could easily be misunderstood as race or ethnicity) requires a compelling justification to be conducted, funded, or published. All authors agree that this justification at least requires a convincing argument that a study's design could yield scientifically valid results; some authors would additionally require the study to have a socially favorable risk‐benefit profile. (shrink)

Experiential evidence shows that pain is associated with common meanings. These include a meaning of threat or danger, which is experienced as immediately distressing or unpleasant; cognitive meanings, which are focused on the long-term consequences of having chronic pain; and existential meanings such as hopelessness, which are more about the person with chronic pain than the pain itself. This interdisciplinary book - the second in the three-volume Meanings of Pain series edited by Dr Simon van Rysewyk - aims to better (...) understand pain by describing experiences of pain and the meanings these experiences hold for the people living through them. The lived experiences of pain described here involve various types of chronic pain, including spinal pain, labour pain, rheumatic pain, diabetic peripheral neuropathic pain, fibromyalgia, complex regional pain syndrome, endometriosis-associated pain, and cancer-related pain. Two chapters provide narrative descriptions of pain, recounted and interpreted by people with pain. Language is important to understanding the meaning of pain since it is the primary tool human beings use to manipulate meaning. As discussed in the book, linguistic meaning may hold clues to understanding some pain-related experiences, including the stigmatisation of people with pain, the dynamics of patient-clinician communication, and other issues, such as relationships between pain, public policy and the law, and attempts to develop a taxonomy of pain that is meaningful for patients. Clinical implications are described in each chapter. This book is intended for people with pain, their family members or caregivers, clinicians, researchers, advocates, and policy makers. (shrink)

L.A. Paul has argued that an ordinary, natural way of making a decision -- by reflecting on the phenomenal character of the experiences one will have as a result of that decision -- cannot yield rational decision in certain cases. Paul's argument turns on the (in principle) epistemically inaccessible phenomenal character of certain experiences. In this paper I argue that, even granting Paul a range of assumptions, her argument doesn't work to establish its conclusion. This is because, as I argue, (...) the phenomenal character of an experience supervenes on epistemically accessible facts about its non-phenomenal character plus what the deciding agent is like. Because there are principles that link the non-phenomenal character of experiences (together with what a particular agent is like) to the phenomenal character of experiences, agents can reasonably form expectations about the valence of the phenomenal character of the experiences that they are deciding whether to undergo. These reasonable expectations are, I argue, enough to make the ordinary, natural way of making a decision yield rational decision. (shrink)

D’où vient la transparence et où va-t-elle? Quelles sont ses méthodes? Quels types de savoirs doivent être constitués pour nous la fournir? Cet article propose la description d’un tableau de bord informationnel, c’est-à-dire d’une interface de plus en plus souvent déployée dans les initiatives relevant de la transparence. Cet Index des Clés Performatives aide à percevoir l’emprise des régimes de mesure et de gestion de performance sur notre monde. Pour expliquer le parcours allant de la transparence à la gestion de (...) performance à travers les tableaux de bord, cet article revient sur un scandale récent de la politique britannique qui a déclenché une nouvelle poussée d’appels à la transparence, et finalement à la multiplication des tableaux de bords. (shrink)

This article examines an eighteenth-century historical work, Antoine-Yves Goguet's De L'origine des loix, des arts, et des sciences, et de leurs progrès chez les anciens peuples. Goguet studied ancient cultures, but maintained that they were inferior to modern European civilization. His methodology, wide erudition, and detailed footnotes were praised at the time, including by the customarily critical Edward Gibbon. Goguet's work was translated into several languages and was influential into the beginning of the nineteenth century, although he was later all (...) but forgotten. The article discusses his work in the context of eighteenth-century scholarship. (shrink)

Think as If Your Life Depends on It puts Barbara Branden’s lectures on the Principles of Efficient Thinking in print at last, along with three later lectures. In Roger Bissell’s excellent transcription, the ten lectures introduce readers to psycho-epistemology, the difference between directed and undirected thinking, the role of the subconscious in problem-solving, common faults in thinking, and motivational issues that interfere with thinking. Her contributions were effectively erased from Objectivism after the Nathaniel Branden Institute closed; the original lectures (...) were the most significant part of the Objectivist corpus that remained to be recovered. (shrink)

This bibliography constitutes the most extensive compilation of references on Nathaniel Branden yet published.

. The coeditors of this special double issue of the journal focus attention on the need to reassess the work and legacy of Ayn Rand's friend and collaborator Nathaniel Branden. This introduction explains why they asked a diverse group of scholars to examine Branden's entire body of work—from his Randian period through his years as the “father” of the self-esteem movement.

Nathaniel Hawthorne’s short stories “The Birthmark” (1843) and “Rappaccini’s Daughter” (1844) encourage critical thinking about science and scientific research as forms of social power. In this collaborative activity, students work in small groups to discuss the ways in which these stories address questions of human experimentation, gender, manipulation of bodies, and the role of narrative in mediating perceptions about bodies. Students collectively adduce textual evidence from the stories to construct claims and present a mini-argument to the class, thereby strengthening (...) their skills in communication and cooperative interpretation of ethical dilemmas. This exercise is adaptable to shorter and longer periods of instruction, and it is ideal for instructors who collaborate across areas of expertise. (shrink)

A new reading of a crucial chapter in the history of social and political thought – the transition from the late Enlightenment to early liberalism.

Can a rule be followed by one person who has lived all his life in as complete isolation from other human beings as is consistent with his mere physical survival? This question divides philosophers as sharply today as it did over thirty years ago when, prompted by their reading of Wittgenstein, they first asked it. My aim here is to suggest a way of reconciling the two opposing sides in the current debate. I also hope to explain why it was (...) that Wittgenstein did not concern himself with the complexities I am about to discuss, which none the less are, I believe, at the root of the difficulties we experience when we try to understand what Wittgenstein said about following a rule and to think clearly about this question. (shrink)

Can a rule be followed by one person who has lived all his life in as complete isolation from other human beings as is consistent with his mere physical survival?This question divides philosophers as sharply today as it did over thirty years ago when, prompted by their reading of Wittgenstein, they first asked it. My aim here is to suggest a way of reconciling the two opposing sides in the current debate. I also hope to explain why it was that (...) Wittgenstein did not concern himself with the complexities I am about to discuss, which none the less are, I believe, at the root of the difficulties we experience when we try to understand what Wittgenstein said about following a rule and to think clearly about this question. (shrink)

"Let a Kantian view of empirical truth be any view according to which the truth of empirical claim depends on the truth of non-empirical claims, because subjects (consciously or not) constitute the empirical when applying the non-empirical to experience. Historically the most important such view is Immanuel Kant’s. It is not the only. Rudolf Carnap, Thomas Kuhn, and Donald Davidson held such views. Conversely, Willard van Orman Quine’s view was contrastingly instructive. My aim is to briefly sort all this out (...) in search of lessons about the nature of empirical truth generally. Keywords: anthropocentric; ethnocentric; idiocentric; Kant; Immanuel; logocentric; truth. ". (shrink)

Statements of identity with a plural subject, of the form ‘They are the same person,’ as illustrated in each of the answers to the above two questions, give rise to a philosophical problem.

Logical Forms explains both the detailed problems involved in finding logical forms and also the theoretical underpinnings of philosophical logic. In this revised edition, exercises are integrated throughout the book. The result is a genuinely interactive introduction which engages the reader in developing the argument. Each chapter concludes with updated notes to guide further reading.

In several articles, Mumma has presented a formal diagrammatic system Eu meant to give an account of one way in which Euclid's use of diagrams in the Elements could be formalized. However, largely because of the way in which it tries to limit case analysis, this system ends up being inconsistent, as shown here. Eu also suffers from several other problems: it is unable to prove several wide classes of correct geometric claims and contains a construction rule that is probably (...) computationally intractable and that may not even be decidable. (shrink)

The mesostriatal dopamine system is prominently implicated in model-free reinforcement learning, with fMRI BOLD signals in ventral striatum notably covarying with model-free prediction errors. However, latent learning and devaluation studies show that behavior also shows hallmarks of model-based planning, and the interaction between model-based and model-free values, prediction errors, and preferences is underexplored. We designed a multistep decision task in which model-based and model-free influences on human choice behavior could be distinguished. By showing that choices reflected both influences we could (...) then test the purity of the ventral striatal BOLD signal as a model-free report. Contrary to expectations, the signal reflected both model-free and model-based predictions in proportions matching those that best explained choice behavior. These results challenge the notion of a separate model-free learner and suggest a more integrated computational architecture for high-level human decision-making. (shrink)