Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric (...) oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)

When the COVID-19 surge hit New York City hospitals, the Division of Medical Ethics at Weill Cornell Medical College, and our affiliated ethics consultation services, faced waves of ethical issues sweeping forward with intensity and urgency. In this article, we describe our experience over an eight-week period (16 March through 10 May 2020), and describe three types of services: clinical ethics consultation (CEC); service practice communications/interventions (SPCI); and organizational ethics advisement (OEA). We tell this narrative through the prism of time, (...) describing the evolution of ethical issues and trends as the pandemic unfolded. We delineate three phases: anticipation and preparation, crisis management, and reflection and adjustment. The first phase focused predominantly on ways to address impending resource shortages and to plan for remote ethics consultation, and CECs focused on code status discussions with surrogates. The second phase was characterized by the dramatic convergence of a rapid increase in the number of critically ill patients, a growing scarcity of resources, and the reassignment/ redeployment of staff outside their specialty areas. The third phase was characterized by the recognition that while the worst of the crisis was waning, its medium- and long-term consequences continued to pose immense challenges. We note that there were times during the crisis that serving in the role of clinical ethics consultant created a sense of dis-ease as novel as the coronavirus itself. In retrospect we learned that our activities far exceeded the familiar terrain of clinical ethics consultation and extended into other spheres of organizational life in novel ways that were unanticipated before this pandemic. To that end, we defined and categorized a middle level of ethics consultation, which we have termed service practice communication intervention (SPCI). This is an underappreciated dimension of the work that ethics consult services are capable of in times of crisis. We believe that the pandemic has revealed the many enduring ways that ethics consultation services can more robustly contribute to the ethical life of their institutions moving forward. (shrink)

BackgroundFor many decades, the debate on children’s competence to give informed consent in medical settings concentrated on ethical and legal aspects, with little empirical underpinnings. Recently, data from empirical research became available to advance the discussion. It was shown that children’s competence to consent to clinical research could be accurately assessed by the modified MacArthur Competence Assessment Tool for Clinical Research. Age limits for children to be deemed competent to decide on research participation have been studied: generally children of 11.2 (...) years and above were decision-making competent, while children of 9.6 years and younger were not. Age was pointed out to be the key determining factor in children’s competence. In this article we reflect on policy implications of these findings, considering legal, ethical, developmental and clinical perspectives.DiscussionAlthough assessment of children’s competence has a normative character, ethics, law and clinical practice can benefit from research data. The findings may help to do justice to the capacities children possess and challenges they may face when deciding about treatment and research options. We discuss advantages and drawbacks of standardized competence assessment in children on a case-by-case basis compared to application of a fixed age limit, and conclude that a selective implementation of case-by-case competence assessment in specific populations is preferable. We recommend the implementation of age limits based on empirical evidence. Furthermore, we elaborate on a suitable model for informed consent involving children and parents that would do justice to developmental aspects of children and the specific characteristics of the parent-child dyad.SummaryPrevious research outcomes showed that children’s medical decision-making capacities could be operationalized into a standardized assessment instrument. Recommendations for policies include a dual consent procedure, including both child as well as parents, for children from the age of 12 until they reach majority. For children between 10 and 12 years of age, and in case of children older than 12 years in special research populations of mentally compromised patients, we suggest a case-by-case assessment of children’s competence to consent. Since such a dual consent procedure is fundamentally different from a procedure of parental permission and child assent, and would imply a considerable shift regarding some current legislations, practical implications are elaborated. (shrink)

ConclusionThe common assumption that Becquerel had no special reason to study uranium compounds in his search for substances emitting penetrating radiation cannot explain (a) Becquerel's own accounts, which refer to his choice as due to “the peculiar harmonic series of bands”; (b) Becquerel's systematic test of all uranium compounds (and metallic uranium), in contrast to his neglect of other substances; and (c) Becquerel's belief in invisible phosphorescence as an explanation of the radiation emitted by uranium compounds, even after his discovery (...) that non-luminescent and metallic uranium also emit penetrating radiation.By comparing Becquerel's older studies of uranium to his radioactivity research, this paper has presented a reconstruction that can explain all of these points above. According to the historical evidence presented here, it is likely that Becquerel concentrated his attention on uranium and its compounds because the mechanical theory of luminescence opened up the possibility that, precisely in the case of uranium and its compounds, a violation of Stokes's law could occur, and penetrating short-wavelength radiation could be emitted through a special type of phosphorescence. (shrink)

As a general claim, most philosophers of science accept that science is not value-free. The disagreements lie in the proverbial details. The essays in Current Controversies in Values and Science, edited by Kevin Elliott and Daniel Steel focus on such details. Like other volumes in the Routledge Current Controversies in Philosophy’s series, this one asks ten well-known philosophers of science to engage with various questions. Each question receives roughly positive and negative responses, though the authors’ nuanced answers make clear that (...) the contrasting views also involve significant agreement.The first question asks whether we can distinguish epistemic from nonepistemic values. Hugh Lacey argues that such... (shrink)

The aim of this paper is to show that critics of biological explanations of human nature may be granting too much to those who propose such explanations when they argue that the truth of genetic determinism implies an end to critical evaluation and reform of our social institutions. This is the case because when we argue that biological determinism exempts us from social critique we are erroneously presupposing that our social values, practices, and institutions have nothing to do with what (...) makes biological explanations troublesome. My argument is that what constitutes a problem for those who are concerned with social justice is not the fact that particular behaviours may be genetically determined, but the fact that our value system and social institutions create the conditions that make such behaviours problematic. Thus, I will argue that even if genetic determinism were correct, the requirement of assessing and transforming our social practices and institutions would be far from superfluous. Biology is rarely destiny for human beings and the institutions they create. (shrink)

For decades, the discussion on children’s competence to consent to medical issues has concentrated around normative concerns, with little progress in clinical practices. Decision-making competence is an important condition in the informed consent model. In pediatrics, clinicians need to strike a proper balance in order to both protect children’s interests when they are not fully able to do so themselves and to respect their autonomy when they are. Children’s competence to consent, however, is currently not assessed in a standardized way. (...) Moreover, the correlation between competence to give informed consent and age in children has never been systematically investigated, nor do we know which factors exactly contribute to children’s competence. (shrink)

The aim of this paper is to show that critics of biological explanations of human nature may be granting too much to those who propose such explanations when they argue that the truth of genetic determinism implies an end to critical evaluation and reform of our social institutions. This is the case because when we argue that biological determinism exempts us from social critique we are erroneously presupposing that our social values, practices, and institutions have nothing to do with what (...) makes biological explanations troublesome. My argument is that what constitutes a problem for those who are concerned with social justice is not the fact that particular behaviours may be genetically determined, but the fact that our value system and social institutions create the conditions that make such behaviours problematic. Thus, I will argue that even if genetic determinism were correct, the requirement of assessing and transforming our social practices and institutions would be far from superfluous. Biology is rarely destiny for human beings and the institutions they create. (shrink)

The review by De Bie et al. (2023) provides an overview of the current ethical literature on artificial womb technology (AWT). Two characteristics stand out, and provide the basis for our commentar...

Current UK legislation is impacting upon the feasibility and cost-effectiveness of medical record-based research aimed at benefiting the NHS and the public heath. Whereas previous commentators have focused on the Data Protection Act 1998, the Health and Social Care Act 2001 is the key legislation for public health researchers wishing to access medical records without written consent. The Act requires researchers to apply to the Patient Information Advisory Group for permission to access medical records without written permission. We present a (...) case study of the work required to obtain the necessary permissions from PIAG in order to conduct a large scale public health research project. In our experience it took eight months to receive permission to access basic identifying information on individuals registered at general practices, and a decision on whether we could access clinical information in medical records without consent took 18 months. Such delays pose near insurmountable difficulties to grant funded research, and in our case £560 000 of public and charitable money was spent on research staff while a large part of their work was prohibited until the third year of a three year grant. We conclude by arguing that many of the current problems could be avoided by returning PIAG’s responsibilities to research ethics committees, and by allowing “opt-out” consent for many public health research projects. (shrink)

As of October 23, 2020, almost 42 million cases of COVID-19 have been reported globally. Although many different treatments have been applied in infected...

Experimental studies have suggested that variables such as aptness or conventionality are predictors of people’s preference for expressing a particular topic–vehicle pair as either a metaphor or a simile. In the present study, we investigated if such variables would also be predictive within a more naturalistic context, where other variables, such as the intention to include an explanation, may also influence people’s decision. Specifically, we investigated the production of metaphor and simile expressions on the Internet via the Google search engine (...) and checked for accompanying explanations, as well as the properties they expressed, to examine whether ratings such as aptness, conventionality, as well as participants’ own stated preference or the intention to produce an explanation, would predict which topic–vehicle pairs appeared more often as metaphor. We found that participants’ stated preference predicted metaphor dominance on the Internet, and that apt topic–vehicles occurred more often as metaphors. The explanations collected, however, occurred 82% of the time after similes, and familiar expressions were the most explained. Finally, comparing the properties expressed in these explanations to normed property lists, we found that simile explanations typically expressed a novel conception of the topic–vehicle relationship. Therefore, we found that Internet posters use metaphors to convey an apt relationship, as found in previous laboratory studies, but prefer using a simile frame when they want to express a relationship that readers will find novel. (shrink)

Background Genuine uncertainty on superiority of one intervention over the other is called equipoise. Physician-investigators in randomized controlled trials need equipoise at least in studies with more than minimal risks. Ideally, this equipoise is also present in patient-participants. In pediatrics, data on equipoise are lacking. We hypothesize that 1) lack of equipoise at enrolment among parents may reduce recruitment; 2) lack of equipoise during participation may reduce retention in patients assigned to a less favoured treatment-strategy. Methods We compared preferences of (...) parents/patients at enrolment, documented by a questionnaire, with preferences developed during follow-up by an interview-study to investigate equipoise of child-participants and parents in the BeSt-for-Kids-study. This trial in new-onset Juvenile Idiopathic Arthritis-patients consists of three strategies. One strategy comprises initial treatment with a biological disease-modifying-antirheumatic-drug, currently not standard-of-care. Semi-structured interviews were conducted with 23 parents and 7 patients, median 11 months after enrolment. Results Initially most parents and children were not in equipoise. Parents/patients who refused participation, regularly declined due to specific preferences. Many participating families preferred the biological-first-strategy. They participated to have a chance for this initial treatment, and would even consider stopping trial-participation when not randomized for it. Their conviction of superiority of the biological-first strategy was based on knowledge from internet and close relations. According to four parents, the physician-investigator preferred the biological-first-strategy, but the majority stated that she had no preferred strategy. In phase 2, preferences tended to change to the treatment actually received. Conclusions Lack of equipoise during enrolment did not reduce study recruitment, mainly due to the fact that preferred treatment was only available within the study. Still, when developing a trial it is important to evaluate whether the physicians’ research question is in line with preferences of the patient-group. By exploring so-called ‘informed patient-group’-equipoise, successful recruitment may be enhanced and bias avoided. In our study, lack of equipoise during trial-participation did not reduce retention in those assigned to a less favoured option. We observed a change for preference towards treatment actually received, possibly explained by comparable outcomes in all three arms. (shrink)

From its very beginning, Pope Francis’s Petrine ministry has been full of surprises and he has been a man of contradictions. He has given hope to many, Christians, other believers, and secular humanists, especially with his pastoral approach of mercy, but he has also met with fierce opposition, even among the upper echelon of the hierarchy, some of whom have publicly attacked his orthodoxy and called for his resignation. In his teachings on evangelization, marriage and sexuality, ecology, and social friendship, (...) Francis has opened new paths and challenged the church to make visible the merciful face of God to the world.On interreligious dialogue, the pope, as to be expected, has largely reiterated the teachings of Vatican II and so far has not issued an apostolic exhortation or encyclical on the subject. Consistent with his pastoral outlook he has emphasized the socio-political and cultural aspects of interreligious dialogue and has largely avoided still controverted doctrinal issues. On the other hand, his friendship with many non-Christian leaders and his several obiter dicta have enlarged the interreligious horizon and opened the door for further explorations in the theology of religion and the scope of the interreligious encounter. His explicit acknowledgment of non-Christian religions as “channels” of the Holy Spirit hints at their role as ways of salvation not only for their adherents but also in certain ways for Christians. Furthermore, the four principles of Francisian metaphysics suggest novel and effective ways of conducting interreligious dialogue. (shrink)

Cesarean sections are one of the most commonly performed surgical operations worldwide. Though evidence suggests that non-medically indicated cesarean sections raise the health risks for mothers and their babies and result in increased costs of health care compared with vaginal deliveries, reports are common that the frequency of performance of this surgical procedure is far above WHO recommendations. Of special concern has been the current increase of cesarean delivery rates in some Latin American countries. Here we focus on Monterrey, Mexico, (...) a city that has one of the highest rates of cesarean deliveries in the world. We explore aspects that relate to the practice of cesarean section that might shed light on determining why Monterrey has become the capital of cesarean sections. (shrink)

O artigo propõe analisar o problema da técnica moderna trabalhada pelo filósofo alemão Martin Heidegger em sua crítica a modernidade e à metafísica, elencando a questão da verdade, não metafísica, para Heidegger: alétheia. A questão da técnica nos leva a problemática de sua própria essência ge-stell, interpelação, o mundo, o ser humano e a natureza são forçados a se mostrarem como reservas, estoques, de acordo com sua demanda meramente econômica, científica, comercial, o próprio ser em sua essência é esquecido. O (...) artigo tem como método a análise bibliográfica de obras heideggerianas, sob objetivo de indagar sobre a essência da técnica moderna como interpelação que nos leva a um crescente perigo do esquecimento do ser, e, também, da degradação da própria natureza tida como mero objeto de armazenamento de recursos; assim como refletir sobre a necessidade do mistério como faceta constituinte da verdade do ser como alétheia, desvelamento, como forma de dar um passo atrás em relação à modernidade e sua visão matematizante científica, elevando o pensamento meditativo como de considerável importância. O artigo conclui que é necessário repensar nossa lida moderna com o próprio habitar, de forma a dar um salto da lógica tecnicista, onde se encontra o perigo, e estando no mesmo local des-velar um habitar mais próprio, autêntico. (shrink)

Nos escritos políticos de Guilhenne de Ockham surge com insistência a noção de líberdade, usada como argumento contra o absolutismo pontificio. A raiz deste conceito encontra-se, porém, nas obras filosófico-teológicas, onde, ao tratar do conhecimento divino dos futuros contincontigentes, o autor afirma que existe uma oposição entre o que afirma a filosofia e o que afinna a teologia a respeito.

O campo da avaliação psicológica para o porte de arma apresenta dificuldades e limitações em sua fundamentação e exercício profissional, com base na legislação brasileira vigente. Para que ela possa se desenvolver, fazse necessário sistematizar o que tem sido desenvolvido sobre o tema. Neste sentido, foi realizada uma revisão assistemática dos estudos nacionais que abordam à avaliação psicológica para porte de arma. Para tanto, foram realizadas buscas por meio da BVS-Psi de pesquisas que trouxessem, em seu título ou corpo, alguma (...) referência à avaliação psicológica para o porte de arma, utilizando como descritores porte de arma, avaliação psicológica, avaliação psicológica para porte de arma. Os resultados apontaram para 2 artigos de natureza empírica, 14 trabalhos de anais, 2 dissertações e 1 livro. Optou-se por não se limitar o período de publicação em razão da pequena quantidade de trabalhos sobre o tema. Concluise que as pesquisas sobre avaliação psicológica para porte de arma de fogo são escassas e trouxeram limitadas contribuições, denotando um campo carente da atenção científica. (shrink)

Psychiatric disorders present distinct clinical challenges which are partly attributable to their multifactorial aetiology and the absence of laboratory tests that can be used to confirm diagnosis or predict risk. Psychiatric disorders are highly heritable, but also polygenic, with genetic risk conferred by interactions between thousands of variants of small effect that can be summarized in a polygenic risk score. We discuss four areas in which the use of polygenic risk scores in psychiatric research and clinical contexts could have ethical (...) implications. First, there is concern that clinical use of polygenic risk scores may exacerbate existing health inequities. Second, research findings regarding polygenic risk could be misinterpreted in stigmatising or discriminatory ways. Third, there are concerns associated with testing minors as well as eugenics concerns elicited by prenatal polygenic risk testing. Fourth, potential challenges that could arise with the feedback and interpretation of high polygenic risk for a psychiatric disorder would require consideration. While there would be extensive overlap with the challenges of feeding back genetic findings in general, the potential clinical use of polygenic risk scoring warrants discussion in its own right, given the recency of this possibility. To this end, we discuss how lay interpretations of risk and genetic information could intersect. Consideration of these factors would be necessary for ensuring effective and constructive communication and interpretation of polygenic risk information which, in turn, could have implications for the uptake of any therapeutic recommendations. Recent advances in polygenic risk scoring have major implications for its clinical potential, however, care should be taken to ensure that communication of polygenic risk does not feed into problematic assumptions regarding mental disorders or support reductive interpretations. (shrink)

This study examines the case of community resource mobilization within the context of a farmers market incentive program in Washington D.C., USA to illustrate the ways in which providing opportunities for people impacted by food inequities to develop and lead programming can help to promote food access. Through an analysis of interviews with 36 participants in the Produce Plus program, some of whom also served as paid staff and volunteers with the program, this study examines the ways that group-level social (...) interactions among program participants helped to ensure the program was accessible and accountable to the primarily Black communities that it serves. Specifically, we explore a particular set of social interactions, which we collectively term social solidarity, as a community-level form of social infrastructure that program volunteers and participants mobilized to support access to fresh, local food in their communities. We also examine the elements of the Produce Plus program that contributed to the flow of social solidarity within the program, providing insight into the ways in which the structure of food access programs can serve as a social conduit to facilitate or hinder the mobilization of community cultural resources like social solidarity. (shrink)

BackgroundPreprint usage is growing rapidly in the life sciences; however, questions remain on the relative quality of preprints when compared to published articles. An objective dimension of quality that is readily measurable is completeness of reporting, as transparency can improve the reader’s ability to independently interpret data and reproduce findings.MethodsIn this observational study, we initially compared independent samples of articles published in bioRxiv and in PubMed-indexed journals in 2016 using a quality of reporting questionnaire. After that, we performed paired comparisons (...) between preprints from bioRxiv to their own peer-reviewed versions in journals.ResultsPeer-reviewed articles had, on average, higher quality of reporting than preprints, although the difference was small, with absolute differences of 5.0% [95% CI 1.4, 8.6] and 4.7% [95% CI 2.4, 7.0] of reported items in the independent samples and paired sample comparison, respectively. There were larger differences favoring peer-reviewed articles in subjective ratings of how clearly titles and abstracts presented the main findings and how easy it was to locate relevant reporting information. Changes in reporting from preprints to peer-reviewed versions did not correlate with the impact factor of the publication venue or with the time lag from bioRxiv to journal publication.ConclusionsOur results suggest that, on average, publication in a peer-reviewed journal is associated with improvement in quality of reporting. They also show that quality of reporting in preprints in the life sciences is within a similar range as that of peer-reviewed articles, albeit slightly lower on average, supporting the idea that preprints should be considered valid scientific contributions. (shrink)