Background Sharing of genomic data aims to make efficient use of limited resources, which may be particularly valuable in rare disease research. Adult research participants and parents of pediatric research participants have shown support for data sharing with protections, but little is known about adolescent attitudes on genomic privacy and data sharing.Methods In-depth interviews were conducted with 10 adolescents and 18 parents of children enrolled in a pediatric genomic research repository. Interview transcripts were analyzed for themes on attitudes toward genomic (...) privacy, restricted-access data sharing, and open-access data sharing. Findings in adolescent and parent participants were compared and contrasted.Results No adolescents endorsed privacy concerns for restricted-access data sharing. Both adolescents and parents saw value in data sharing for reaching the goals of research and discussed trust in institutions and researchers to protect their data and use it as intended. Adolescents were more likely than parents to accept open-access data sharing, including after risks were discussed.Conclusions In this exploratory study, adolescents and parents enrolled in a genomic research repository shared many attitudes about genomic data sharing, but adolescents were less concerned about privacy and more agreeable toward open-access data sharing. Future research is needed to investigate this hypothesis in expanded populations and settings, and to clarify whether adolescent attitudes change with age and experiences. (shrink)

Newborn screening (NBS) began in the 1960s by testing all newborns for a single condition—phenylketonuria, or PKU—which, when identified and treated early, significantly reduces morbidity. Over the...

In their target article, Galasso (2024) highlights the limitations of upstream inclusion in precision medicine research to produce downstream benefits to participants and proposes precision public...

Harms and risks to groups and third-parties can be significant in the context of research, particularly in data-centric studies involving genomic, artificial intelligence, and/or machine learning technologies. This article explores whether and how United States federal regulations should be adapted to better align with current ethical thinking and protect group interests. Three aspects of the Common Rule deserve attention and reconsideration with respect to group interests: institutional review board (IRB) assessment of the risks/benefits of research; disclosure requirements in the informed (...) consent process; and criteria for waivers of informed consent. In accordance with respect for persons and communities, investigators and IRBs should systematically consider potential group harm when designing and reviewing protocols, respectively. Research participants should be informed about any potential group harm in the consent process. We call for additional public discussion, empirical research, and normative analysis on these issues to determine the right regulatory and policy path forward. (shrink)

Epigenetics – the study of mechanisms that influence and modify gene expression – is providing unique insights into how an individual’s social and physical environment impact the body at a molecular level, particularly in populations that experience stigmatization and trauma. Researchers are employing epigenetic studies to illuminate how epigenetic modifications lead to imbalances in health outcomes for vulnerable populations. However, the investigation of factors that render a population epigenetically vulnerable present particular ethical and methodological challenges. Here we are concerned with (...) demonstrating how, in targeting certain populations for epigenetic research, this research may be pathologizing socio-cultural and medical practices in those populations in a way that increases their vulnerability. Using a case study approach, this article examines three vulnerable populations currently of interest to epigenetic researchers – Indigenous, autistic, and transgender populations – in order to highlight some of the challenges of conducting non-stigmatizing research in epigenetics. (shrink)

Bowman-Smart et al. (2023) argue for a framework to examine the ethical issues associated with genetic screening for non-medical traits in the context of noninvasive prenatal testing (NIPT). Such s...

El rompecabezas de la divagación voluntaria plantea que la divagación mental intencional implica la contradicción de dos modos opuestos de pensamiento: dirigido y no-dirigido a un objetivo o tarea. Sin embargo, existe evidencia empírica que respalda los casos de divagación mental intencional. ¿Cómo es esto posible? En el presente trabajo abordaré dos teorías filosóficas de la divagación mental intencional: la teoría del meta-control y la teoría de la omisión intencional. Mi principal objetivo es analizar cómo podrían articularse para superar el (...) rompecabezas. Además, mostraré que tal articulación es una teoría fuerte, ya que propone una explicación promisoria a dos de los problemas más generales sobre el tema en la filosofía y las ciencias cognitivas: la agencia en la divagación mental intencional y la opacidad definicional del concepto de divagación mental. (shrink)

The literature on affective determinants of physical activity is growing rapidly. The present paper aims to provide greater clarity regarding the definition and distinctions among the various affect-related constructs that have been examined in relation to PA. Affective constructs are organized according to the Affect and Health Behavior Framework, including: affective response to PA; incidental affect; affect processing; and affectively charged motivational states. After defining each category of affective construct, we provide examples of relevant research showing how each construct may (...) relate to PA behavior. We conclude each section with a discussion of future directions for research. (shrink)

Since psychiatry remains a descriptive discipline, it is essential for its practitioners to understand how the language of psychiatry came to be formed. This important book, written by a psychiatrist-historian, traces the genesis of the descriptive categories of psychopathology and examines their interaction with the psychological and philosophical context within which they arose. The author explores particularly the language and ideas that have characterised descriptive psychopathology from the mid-nineteenth century to the present day. He presents a masterful survey of the (...) history of the main psychiatric symptoms, from the metaphysics of classical antiquity to the operational criteria of today. Tracing the evolution of concepts such as memory, consciousness, will and personality, and of symptoms ranging from catalepsy and aboulia to anxiety and self-harm, this book provides fascinating insights into the subjective nature of mental illness, and into the ideas of British, Continental and American authorities who sought to clarify and define it. (shrink)

This article examines the regulation of nonsteroidal anti-inflammatory drugs, with particular focus on products approved for marketing in the United Kingdom, while denied marketing approval in the United States on safety grounds, and then subsequently withdrawn from the UK market on those grounds. Using international comparison of regulatory data never before accessed outside government and companies, together with interviews with relevant industry scientists and regulators, the article demonstrates the importance of regulatory expectations, deficits and paradigms. It is argued both that (...) these sociological concepts can be enriched by their application to detailed comparative case study of regulatory science, and that they provide an important policy-relevant framework with which to understand discrepant drug regulatory processes in a sociohistorical context. It is found that regulatory expectations and paradigms may be regarded as mediating factors between political culture and structural interests, on the one hand, and the outcomes of regulatory science, on the other. (shrink)

Ruben Berrios Queen’s University Belfast Anti-realism and Aesthetic Cognition Abstract At the core of the debate between scientific realism and anti-realism is the question of the relation between scientific theory and the world. The realist possesses a mimetic conception of the relation between theory and reality. For the realist, scientific theories represent reality. The anti-realist, in contrast, seeks to understand the relations between theory and world in non-mimetic terms. We will examine Cartwright’s simulacrum account of explanation in order to (...) illuminate the anti-realist position. Science consists of phenomenological and theoretical laws. The former are concerned with appearances, or those phenomena that can be directly observed; the latter involve the unobservable reality that is alleged to underlie appearances, and are capable only of indirect confirmation. Phenomenological laws are said to be descriptive, whilst theoretical laws are understood as explanatory. Cartwright is concerned with the theoretical. She claims that the standard realist account of the explanatory efficacy of theoretical laws is faulty. The explanatory power of theoretical laws consists in their ability to provide an explanation of physical phenomena. According to Cartwright, the realist claims that laws explain phenomena by providing an abstract description of them, in terms of their micro-structural features, that is alleged to be true. On this view, explanatory power is entirely dependent on descriptive adequacy. As phenomenological laws describe appearances, so theoretical laws describe the fundamental reality that governs appearances. Cartwright rejects the preceding view and in its place proposes a simulacrum account of explanation. According to Cartwright, the explanatory power of theoretical laws is related not to descriptive adequacy, but rather to the construction of adequate models. To explain a phenomenon is to construct a model which best or most adequately accommodates the phenomenon to a theory. The model will consist of various posited objects that serve to explain the phenomena in terms that are consistent with a set of theoretical laws. Cartwright claims that theoretical laws are true of, or describe, the objects of the model. The objects of the model, however, are not descriptive of reality. They are simulacra. They have, that is, the form or appearance of things, without possessing their substance or proper qualities. In light of the foregoing account we can summarise the distinction between scientific realism and anti-realism as follows. The realist claims that theoretical laws literally represent real objects. The anti-realist claims that laws represent objects of a model that are simulacra of reality. Anti-realism has an aesthetic dimension. The movement from realism to anti-realism is also the movement from the mimetic conception of the scientist as holding a mirror to nature to the constructionist view of the scientist as engaging with nature through invention. There is a lot of the artist in the anti-realist’s view of the scientist. This is true for Cartwright as well as, for example, Van Fraassen in his doctrine of constructive empiricism. It would appear, then, that the philosophy of science has absorbed some concepts that are ordinarily housed in aesthetics. And it has done so profitably. The aim of this paper is to reverse the direction of disciplinary influence. Can art, in relation to its status as a cognitive enterprise, be illuminated by scientific anti-realism? I will argue that it can. In an unexpected reference to the Nicomachean Ethics, Cartwright draws a suggestive parallel between theoretical laws and general moral principles, on the one hand, and physical phenomena and everyday moral conduct, on the other hand. If we add to this the claim that a central component of art’s value is cognitive, then we have the basic materials with which to flesh out a broadly anti-realist view of art. In the production of art, artists can construct models that mediate between everyday ethical phenomena and general ethical tendencies. These models reveal the ways in which there are implicit consistencies or inconsistencies, conflicts or congruences and so forth, between the phenomena and the tendencies. On this basis art can contribute to the reflective understanding of ethical life. This constitutes to a large degree art’s status as a cognitive enterprise. To apprehend art cognitively as artist or critic is to engage in aesthetic cognition. (shrink)

Sección I. Aportes desde las epistemologías feministas -- Sección II. Posturas éticas en las antropologías feministas -- Sección III. Protagonistas diversas, voces multisituadas -- Sección IV. La antropología y el feminismo: narraciones en primera persona sobre experiencias de investigación y docencia -- Sección V. Expresiones contemporáneas de la violencia.

0. Between Literary Theory and a General Poetics 0.1. A Methodological Assessment of Modern Literary Theory. The Starting Point: A Conflictive Present At...

Data sharing between housing and education agencies will provide housing agencies with resources to assist them with efforts to decrease segregation and mitigate the adverse health outcomes experienced by people of color. The Fair Housing Act has the potential to fulfill its original integrationist purpose if housing and education agencies combine resources and data to create and implement fair housing plans. The Biden Administration’s restored rule to affirmatively further fair housing pursuant to the Fair Housing Act of 1968 which seeks (...) to reduce segregation and increase housing equity. However, it omits most of the processes set forth by the Obama Administration whereby federal agencies provide the proper tools to housing agencies so that they are able to make data-based decisions about housing policies. This article advocates for the sharing of data between housing and education agencies to optimize the positive impact of fair housing not only within housing, but also on the education, employment, and health opportunities for communities of color. (shrink)

This study uses remote viewing in a predictive manner within the context of a novel experimental design to describe eleven target events spread out over a year, each of which occurs approximately one month after the remote-viewing sessions are completed. The study was conducted at The Farsight Institute using 12 highly experienced remote viewers who were trained in the use of four remote-viewing methodologies that are the same as or derived from those previously used by the United States military for (...) espionage purposes. While prediction using remote viewing has a long and spotted history, the current investigation is aimed at enhancing our understanding of the remote-viewing phenomenon by utilizing a temporal outbounder approach to tasking in order to improve the description of future events. In this design, the tasker is located in time after the remote-viewing sessions are completed and after the occurrence of the chosen target event. Exploiting one of the largest bodies of remote-viewing data ever collected using military-related viewing methodologies, this study finds strong support for hypothesis that experimental designs utilizing a temporal outbounder as a tasker greatly enhances the accuracy of remote-viewing descriptions of future events. The causal mechanism for why this might occur is left to be determined by future research. (shrink)

Journal of Philosophy of Education, EarlyView.

ABSTRACTSince the release of the Final Report of the Canadian Truth and Reconciliation Commission, many non-Indigenous Canadians, politicians, and educational and cultural institutions have embraced reconciliation. Yet, many Indigenous people in Canada remain skeptical. In this article, I examine six reasons Indigenous people may resist reconciliation. Reconciliation may aim to restore a relationship that never existed in the first place, and may limit an Indigenous future. Reconciliation may look more like adaptation than transformation. Reconciliation may serve as a government project (...) whose primary aim is to bolster state legitimacy. Reconciliation may reflect the desire, for settler-descendants, for expiation or a ‘move to innocence.’ Ultimately, reconciliation is about living together, which may be incompatible with more transformative political projects, such as decolonization. (shrink)

Between 1989 and 1998, The Fund for Animals organized protests and acts of civil disobedience against the largest pigeon shoot in this country. During this long campaign, The Fund used a variety of approaches to argue for its position. This article focuses on two distinct enactments of civil disobedience at the Hegins shoot. Through an historical comparative analysis, the article describes the acts of civil disobedience and the context within which they took place for both 1992 and 1996. The article (...) focuses on audience reaction, including media representatives, in order to discern why onlookers may have found one instance of civil disobedience more compelling than another. The findings suggest that the effectiveness of civil disobedience may be determined in part by the way it is enacted. Specifically, civil disobedience is more persuasive when enacted in clearly nonviolent/non-threatening ways and when participants demonstrate not only a willingness to suffer for their beliefs but also an interest in communicating that suffering to onlookers. (shrink)

Feminist sociologists claim that while feminist insights have been incorporated in sociological paradigms and women sociologists have been well-integrated into academia, sociological frameworks have not been transformed, a process known as the missing feminist revolution. Yet, few have examined how the missing feminist revolution operates in specific subdisciplines and the mechanisms that sustain it. This article undertakes these tasks by analyzing religion and gender scholarship published in six sociology journals over the past 32 years. We find evidence of partial integration (...) and continued marginalization. However, we also document disparate networks of interlocutors that operate in two distinct intellectual fields—religion and gender. We argue that this bifurcation partially explains the missing feminist revolution and that insularity of feminist conversations likely contributes to this process. Our findings shed light on obstacles to transforming mainstream disciplines. (shrink)

This paper focuses on the graphic pathogeographies in David B.’s Epileptic and David Small’s Stitches: A Memoir to highlight the significance of geographic concepts in graphic novels of health and disease. Despite its importance in such works, few scholars have examined the role of geography in their narrative and structure. I examine the role of place in Epileptic and Stitches to extend the academic discussion on graphic novels of health and disease and identify how such works bring attention to the (...) role of geography in the individual’s engagement with health, disease, and related settings. (shrink)

This work has been selected by scholars as being culturally important, and is part of the knowledge base of civilization as we know it. This work was reproduced from the original artifact, and remains as true to the original work as possible. Therefore, you will see the original copyright references, library stamps (as most of these works have been housed in our most important libraries around the world), and other notations in the work. This work is in the public domain (...) in the United States of America, and possibly other nations. Within the United States, you may freely copy and distribute this work, as no entity (individual or corporate) has a copyright on the body of the work. As a reproduction of a historical artifact, this work may contain missing or blurred pages, poor pictures, errant marks, etc. Scholars believe, and we concur, that this work is important enough to be preserved, reproduced, and made generally available to the public. We appreciate your support of the preservation process, and thank you for being an important part of keeping this knowledge alive and relevant. (shrink)

In this paper I examine the intracultural variability of parental and alloparental caregiving among the Aka foragers of the Central African Republic. It has been suggested that maternal kin offer higher frequencies of allocare than paternal kin and that maternal investment in infants will decrease when alloparental assistance is provided. Behavioral observations were conducted on 15 eight- to twelve-monthold infants. The practice of brideservice and the flexibility of Aka residence patterns offered a means to test the effect of maternal residence (...) on parental and alloparental investment. There was significant variation in the frequency of investment and who supplied care to infants depending on whether mothers resided with their kin or their husbands’ kin. However, in spite of the variation in allocare, when all categories of caregivers were examined collectively, infants received similar overall levels of care. (shrink)

The U.S. government embraces the concepts of privatization and market competition, but the realm of contracting shows that it has not always been able to put its principles into practice. Although the contracting system is supposed to be open and competitive, in recent years the government has often awarded contracts with little or no competitive bidding, has chosen to award mostly cost-plus type contracts that force the government to assume more of the risk, and lacked efficiency in monitoring and overseeing (...) private contractors. While the number and value of contracts have increased, the workforce to oversee these contracts has been reduced, preventing the government from adequately enforcing compliance with the contractors, and the government has not made use of past performance evaluations in its contracting system. Private contractors that do business with the U.S. government are for the most part well-established firms with ample resources and inside contacts; many contracts are still being awarded on preferential treatment and to the larger and well-established contractors. (shrink)

Tracing the political origins of the Mexican indigenous rights movement, from the colonial encounter to the Zapatista uprising, and from Chiapas to Geneva, Courtney Jung locates indigenous identity in the history of Mexican state formation. She argues that indigenous identity is not an accident of birth but a political achievement that offers a new voice to many of the world's poorest and most dispossessed. The moral force of indigenous claims rests not on the existence of cultural differences, or identity, (...) but on the history of exclusion and selective inclusion that constitutes indigenous identity. As a result, the book shows that privatizing or protecting such groups is a mistake and develops a theory of critical liberalism that commits democratic government to active engagement with the claims of culture. This book will appeal to scholars and students of political theory, philosophy, sociology, and anthropology studying multiculturalism and the politics of culture. (shrink)