Within the research community, it is generally accepted that consent processes for research should be culturally appropriate and tailored to the context, yet researchers continue to grapple with what valid consent means within specific stakeholder groups. In this study, we explored the consent practices and attitudes regarding essential information required for the consent process within hospital-based trial communities from four referral hospitals in Vietnam. We collected surveys from and conducted semi-structured interviews with study physicians, study nurses, ethics committee members, and (...) study participants and family members regarding their experiences of participating in research, their perspectives toward research, and their views about various elements of the consent process. In our findings, we describe three interrelated themes related to the consent process: words and regulation; reimbursement, suspicions, and joining; and responsibilities. In general, stakeholders had highly varied perspectives of nghiên cứu and researchers used varying levels of detail regarding all aspects of the study in the consent process to build trust with and/or promote potential research participants’ choices about taking part in research. Findings additionally highlight how researchers felt that offering financial reimbursements in a hospital setting, where payment for services was routine, would be unfamiliar to participants and could raise suspicions about the research. Participants, however, focused their discussions on reimbursement or alternative reasons for joining the study, such as health related benefits or altruism. Finally, participants often relied on their physician to help them decide about joining a study or not. Further research is needed to understand how researchers and participants make sense of and practice consent, and how that impacts participants’ decision-making about research participation. To promote valid consent within this context, it is important to engage with hospital-based trial communities as a whole. The data from this study will inform future research on consent, guide the revisions of consent related policies within our research sites and point to several larger issues surrounding researcher-participant expectations, communication, and trust. (shrink)

Background Achieving meaningful consent can be challenging, particularly in contexts of diminished literacy, yet is a vital part of participant protection in global health research. Method We explored the challenges and potential solutions of achieving meaningful consent through a qualitative study in a predominantly hill tribe ethnic minority population in northern Thailand, a culturally distinctive population with low literacy. Semi-structured interviews were conducted with 37 respondents who had participated in scrub typhus clinical research, their family members, researchers and other key (...) informants. A thematic analysis was conducted. Results Our analysis identified four interrelated themes surrounding participants’ ability to give consent: varying degrees of research understanding, limitations of using informal translators, issues impacting decisions to join research, and voluntariness of consent. Suggestions for achieving more meaningful consent included the use of formal translators and community engagement with research populations. Conclusions Participant’s agency in decision making to join research should be supported, but research information needs to be communicated to potential participants in a way that they can understand. We found that improved understanding about the study and its potential benefits and harms goes beyond literacy or translation and requires attention to social and cultural factors. (shrink)

Emotion recognition skills and the ability to understand the mental states of others are crucial for normal social functioning. Conversely, delays and impairments in these processes can have a profound impact on capability to engage in, maintain, and effectively regulate social interactions. Therefore, this study aimed to compare the performance of 42 autistic children, 45 unaffected siblings, and 41 typically developing controls on the Affect Recognition and Theory of Mind subtests of the Developmental Neuropsychological Assessment Battery. There were no significant (...) differences between siblings and TD controls. Autistic children showed significantly poorer performance on AR when compared to TD controls and on TOM when compared to both TD controls and unaffected siblings. An additional comparison of ASD, unaffected sibling and TD control subsamples, matched on full-scale IQ, revealed no group differences for either AR or TOM. AR and TOM processes have received less research attention in siblings of autistic children and remain less well characterized. Therefore, despite limitations, findings reported here contribute to our growing understanding of AR and TOM abilities in siblings of autistic children and highlight important future research directions. (shrink)

Community engagement has been recognised as an important aspect of the ethical conduct of biomedical research, especially when research is focused on ethnically or culturally distinct populations. While this is a generally accepted tenet of biomedical research, it is unclear what components are necessary for effective community engagement, particularly in the context of genomic research in Africa.

This July 2020 issue of JME introduces a new section, “COVID-19 Current Controversies,” which will be a recurring section in each issue for the foreseeable future. This issue reflects on some of the most pressing ethical issues that have arisen roughly 6 months into the pandemic. Kathleen Liddell and colleagues examine important legal considerations at play in ventilator allocation decisions raised by the pandemic.1 They point out that ethics-based triage protocols that argue from the principle of “saving the most lives” (...) by withholding or withdrawing ventilators from certain patients could violate the law (U.K. and elsewhere). Patients’ legal rights are not suspended during this crisis, they remind us. The mere action of ventilator removal (extubation and proning) may constitute battery without consent, for example. Moreover, there may be problems with “evidentiary weakness” in some of the prognostic models used to inform such decisions. And, decisions that are inconsistent, subjective, and/or discriminatory may be deemed illegal. Those developing policies need to consider and consult various areas of law including criminal law (eg, murder, battery, negligence, manslaughter), human rights law, civil law (eg, battery, negligence, duty of care, consent), public and administrative law (eg, discrimination, case law), law on decision-making for incapacitated adults, professional regulations, and derogations from current law (eg, immunities and indemnities). Liddell et al offer 10 concrete, legally informed recommendations for those developing triage-policies to consider. Michael Parker and colleagues take on the issue of contact tracing using mobile apps and point out that such apps can enable people to emerge more safely from lockdowns, which provides a strong autonomy-based argument in favour …. (shrink)

BackgroundCommunity engagement is increasingly promoted as a marker of good, ethical practice in the context of international collaborative research in low-income countries. There is, however, no widely agreed definition of community engagement or of approaches adopted. Justifications given for its use also vary. Community engagement is, for example, variously seen to be of value in: the development of more effective and appropriate consent processes; improved understanding of the aims and forms of research; higher recruitment rates; the identification of important ethical (...) issues; the building of better relationships between the community and researchers; the obtaining of community permission to approach potential research participants; and, the provision of better health care. Despite these diverse and potentially competing claims made for the importance of community engagement, there is very little published evidence on effective models of engagement or their evaluation.MethodsIn this paper, drawing upon interviews with the members of a Community Advisory Board on the Thai-Myanmar border, we describe and critically reflect upon an approach to community engagement which was developed in the context of international collaborative research in the border region.Results and conclusionsDrawing on our analysis, we identify a number of considerations relevant to the development of an approach to evaluating community engagement in this complex research setting. The paper also identifies a range of important ways in which the Community Advisory Board is in practice understood by its members to have morally significant roles and responsibilities beyond those usually associated with the successful and appropriate conduct of research. (shrink)

In this paper, I provide the framework for an account of group assertion. On my view, there are two kinds of group assertion, coordinated and authority-based, with authority-based group assertion being the core notion. I argue against a deflationary view, according to which a group’s asserting is understood in terms of individual assertions, by showing that a group can assert a proposition even when no individual does. Instead, I argue on behalf of an inflationary view, according to which it is (...) the group itself that asserts, a conclusion supported by the fact that paradigmatic features of assertion apply only at the level of the group. A central virtue of my account is that it appreciates the important relationship that exists between most groups and their spokespersons, as well as the consequences that follow from this relationship. My view, thus, provides the framework for distinguishing when responsibility for an assertion lies at the collective level, and when it should be shouldered by an individual simply speaking for herself. (shrink)

Introduction -- From paideia to humanism -- Pietism and the problem of human craft (Menschen-Kunst) -- The harmonious harp-playing of humanity: J. G. Herder -- Ethical formation and the invention of the religion of art -- The rise of the Bildungsroman and the commodification of literature -- Authorship and its resignation in Goethe's Wilhelm Meister -- "The Bildung of self-consciousness itself towards science": Hegel.

Numerous laws have passed to move away from criminalising youth who trade sex. Specialised courts have also been established to support youth. Despite proponents' contention that specialised, trauma-informed courts are less punitive than typical interventions, research is limited. This article explores one specialised dependency court's efforts to assist youth ‘at risk’. Drawing on interviews and ethnographic observations, I argue that laws and trauma-informed court interventions intensify the supervision of youth and families while inadvertently concealing the gendered-racialised effects of child welfare (...) system involvement. Ethnographic findings contribute to sociolegal and anti-carceral feminist research on carceral control beyond the criminal legal system. This work also explores the ethics of carceral-trauma entanglements that accompany decriminalisation’s afterlife. (shrink)

In this paper I shall first expose a weakness shared by several philosophical discussions of self-deception: I shall show that these discussions have failed to give it a complete analysis. The apparent phenomenon of self-deception is all too familiar, and yet its adequate characterization in general terms is wanting. More exactly, I shall argue that to understand self-deception statically, as these accounts have done, has been—and must be—to fail to give a characterization of it as a state of mind, sufficient (...) to distinguish it from other mental states not born of self-deception. (shrink)

In this paper, I will argue that there is a deep connection between home-based care, technology, and the self. Providing the means for persons to receive care at home is not merely a kindness that respects their preference to be at home: it is an important means of extending their selfhood and respecting the unique selves that they are. Home-based technologies like telemedicine and robotic care may certainly be useful tools in providing care for persons at home, but they also (...) have important implications for sustaining selfhood in ways that are of value to individuals and those who care for them. I will argue, by appealing to Hilde Lindemann’s notion of “holding” persons’ identities in place, that technological interventions are not only useful tools for improving and sustaining health and good care at home, but that they may also help to extend our personal identities and relational capacities in ways that are practically and ethically good. Because of these important goods, I will claim that there is a prima facie moral duty to do this “holding” work and that it is best done by family members and loved ones who are well suited to the job because of their history and relationship with the individual that needs to be “held” in place. (shrink)

How to characterize the relationship between science and technology has been a sensitive issue for historians of technology. This essay uses a recent and controversial piece by Paul Forman as a springboard for reexamining the concept of applied science and asks whether “applied science” remains a useful term. Scholars have often taken “applied science” to mean the subordination of technological knowledge to scientific knowledge—and thus the subordination of history of technology to history of science. This essay argues that the historical (...) moment for sensitivity on the subject of applied science has passed, that even in instances where technology can accurately be described as subordinate to science it need not follow that its history is subordinate, and that the concept can be useful in addressing issues in the history and contemporary practice of engineering education. (shrink)

Emotional arousal and negative affect enhance recall of central aspects of an event. However, the role of discrete emotions in selective memory processing is understudied. Undergraduates were asked to recall and rate autobiographical memories of eight emotional events. Details of each memory were rated as central or peripheral to the event. Significance of the event, vividness, reliving and other aspects of remembering were also rated for each memory. Positive affect enhanced recall of peripheral details. Furthermore, the impairment of peripheral recall (...) was greatest in memories of anger, not of fear. Reliving the experience at retrieval was negatively correlated with recall of peripheral details for some emotions (e.g., anger) but not others (e.g., fear), irrespective of similarities in affect and intensity. Within individuals, recall of peripheral details was correlated with less belief in the memory's accuracy and more likelihood to recall the memory from one's own eyes (i.e., a field perspective). (shrink)

Commentators often claim that medical research subjects are coerced into participating in clinical studies. In recent years, such claims have appeared especially frequently in ethical discussions of research in developing countries. Medical research ethics is more important than ever as we move into the 21st century because worldwide the pharmaceutical industry has grown so much and shows no sign of slowing its growth. This means that more people are involved in medical research today than ever before, and in the future (...) even more will be involved. However, despite the pressing need for reflection on research ethics, it is important to carefully identify the concerns we have about research. Otherwise we run the risk that the moral language we use, and which we hear other people use, may do our moral thinking for us. We argue that many recent claims about the occurrence of coercion in medical research are misguided and misuse the word "coercion." We try to identify the real problems, and urge people to attend carefully to the implications of their descriptions of moral problems in research. (shrink)

Book synopsis: The aim of this collection of papers is to present different philosophical perspectives on the mental, exploring questions about how to define, explain and understand the various kinds of mental acts and processes, and exhibiting, in particular, the contrast between naturalistic and non-naturalistic approaches. There is a long tradition in philosophy of clarifying concepts such as those of thinking, knowing and believing. The task of clarifying these concepts has become ever more important with the major developments that have (...) taken place over the last century in the human and cognitive sciences - most notably, psychology, sociology, linguistics, neurophysiology, AI, and cognitive science itself. In all these sciences, there is a need to delineate the domain of the mental and to elucidate the key concepts and underlying assumptions. This need is widely recognized, but approaches and answers vary significantly. Some stress the representational features involved in most of our mental processes, others the inferential dimension; some stress the necessity of using empirical data, others the need to refine ideas before pursuing and drawing on empirical research. The papers collected in this volume are grouped into four parts, on language and thought, on knowledge, belief and action, on intentionality, and on naturalism. The volume will be welcomed by all those engaged and interested in debates about the mental in philosophy and the human and cognitive sciences. (shrink)

Bien que les minorités sexuelles et de genre courent un risque accru de problèmes de santé, on dispose de peu de données sur les interactions patient-prestataire de soins. Dans cette étude, nous avons exploré les perspectives des patients LGBTQ et leurs rencontres avec les médecins afin d’améliorer notre compréhension des expériences patient-médecin. À l’aide d’une sélection ciblée de patients LGBTQ auto-identifiés, nous avons réalisé quatorze entrevues semi-structurées en profondeur sur des sujets comme l’orientation sexuelle et l’identité de genre, ainsi que (...) leur rôle perçu dans la relation patient-fournisseur. Un codage utilisant une approche modifiée de la théorie ancrée a été effectuée pour générer des thèmes. Nous avons identifié trois grands thèmes qui démontrent la complexité des expériences vécues par les patients LGBTQ. La première, le manque de confiance, identifie la méfiance et la perte de la relation médecin-patient résultant d’une mauvaise communication des médecins ou d’un jugement porté sur eux, ou du fait que les médecins font des suppositions sur le genre, utilisent des pronoms incorrects et ne reconnaissent pas l’hétérogénéité dans la communauté transgenre. Un deuxième thème, être vulnérable, décrit les défis et les craintes liés au réconfort des patients face à la divulgation de leur orientation sexuelle ou de leur identité de genre. Un dernier thème, la discrimination sélective, met en relief la discrimination raciale ou ethnique qui crée un fardeau supplémentaire en plus de la maladie et de l’identité stigmatisée. Nos résultats révèlent les besoins complexes des personnes aux multiples identités stigmatisées lorsqu’il s’agit d’établir des relations avec les prestataires. En utilisant une perspective intersectionnelle qui tient compte de la pluralité des identités des patients, les prestataires peuvent aider à améliorer leurs relations avec les patients LGBTQ. L’intégration d’une formation intersectionnelle pour les étudiants en médecine et les résidents pourrait grandement profiter aux patients LGBTQ et à leurs médecins. (shrink)

Internet-based health research is increasing, and often offers financial incentives but fraudulent behavior by participants can result. Specifically, eligible or ineligible individuals may enter the study multiple times and receive undeserved financial compensation. We review past experiences and approaches to this problem and propose several new strategies. Researchers can detect and prevent Internet research fraud in four broad ways: through the questionnaire/instrument ; through participants' non-questionnaire data and seeking external validation through computer information,, and 4) through study design. These approaches (...) each have pros and cons, and raise ethical, legal, and logistical questions, given that ethical tensions can emerge between preserving the integrity of research vs. protecting the privacy and confidentiality of study respondents. While past discussions concerning the ethics of online research have tended to focus on the participants' ability to trust the researchers, needs now arise to examine researchers' abilities to trust the participants. This analysis has several critical implications for future practice, policy, and research. (shrink)

The Federal Trade Commission has an important role to play in the governmental oversight of mobile health apps, ensuring consumer protections from unfair and deceptive trade practices and curtailing anti-competitive methods. The FTC’s consumer protection structure and authority is outlined before reviewing the recent FTC enforcement activities taken on behalf of consumers and against developers of mhealth apps. The article concludes with identification of some challenges for the FTC and modest recommendations for strengthening the consumer protections it provides.

In this paper I argue that excising a final end from accounts of virtue does them more harm than good. I attempt to establish that the justification of contemporary virtue ethics suffers if moved this one step too far from the resources in traditional accounts. This is because virtue, as we tend to describe it, rests on an account of practical rationality wherein the role of the final end is integral. I highlight the puzzles that are generated by the ellipsis (...) that is “the role of a final end” in contemporary theories of virtue. The authors of these theories devise ad hoc solutions for these puzzles, puzzles that do not exist for traditional final end-based accounts. Recent critics of virtue ethics have certainly not been satisfied the explanations being offer in lieu of references to a final end. As a remedy, I recommend that the role of a final end be reintroduced in contemporary virtue ethics. I hope to explain that there is nothing to be frightened of and much to be gained. (shrink)

This volume argues that educational problems have their basis in an ideology of binary opposites often referred to as dualism, and that it is partly because mainstream schooling incorporates dualism that it is unable to facilitate the thinking skills, dispositions and understandings necessary for autonomy, democratic citizenship and leading a meaningful life. Bleazby proposes an approach to schooling termed social reconstruction learning, in which students engage in philosophical inquiries with members of their community in order to reconstruct real social problems, (...) arguing that this pedagogy can better facilitate independent thinking, imaginativeness, emotional intelligence, autonomy, and active citizenship. (shrink)

Self-compassion is a mechanism of symptom improvement in post-traumatic stress disorder, however, the underlying neurobiological processes are not well understood. High levels of self-compassion are associated with reduced activation of the threat response system. Physiological threat responses to trauma reminders and increased arousal are key symptoms which are maintained by negative appraisals of the self and self-blame. Moreover, PTSD has been consistently associated with functional changes implicated in the brain’s saliency and the default mode networks. In this paper, we explore (...) how trauma exposed individuals respond to a validated self-compassion exercise. We distinguish three groups using the PTSD checklist; those with full PTSD, those without PTSD, and those with subsyndromal PTSD. Subsyndromal PTSD is a clinically relevant subgroup in which individuals meet the criteria for reexperiencing along with one of either avoidance or hyperarousal. We use electroencephalography alpha-asymmetry and EEG microstate analysis to characterize brain activity time series during the self-compassion exercise in the three groups. We contextualize our results with concurrently recorded autonomic measures of physiological arousal, parasympathetic activation and self-reported changes in state mood and self-perception. We find that in all three groups directing self-compassion toward oneself activates the negative self and elicits a threat response during the SC exercise and that individuals with subsyndromal PTSD who have high levels of hyperarousal have the highest threat response. We find impaired activation of the EEG microstate associated with the saliency, attention and self-referential processing brain networks, distinguishes the three PTSD groups. Our findings provide evidence for potential neural biomarkers for quantitatively differentiating PTSD subgroups. (shrink)

The doctrine of the image of God is often regarded as grounding human dignity in something permanent and unchanging that transcends our attitudes and behaviors. Yet we persistently encounter the argument that particular human individuals or groups have acted so as to forfeit their moral standing as fellow humans. They are bestialized, categorized as non-human animals, lifting ordinary restraints on punishment. I examine the logic of this argument in John Locke, Thomas Aquinas, and contemporary felony disenfranchisement, showing how it involves (...) slippage between the unobjectionable notion that specific rights may in particular circumstances be forfeited, and the deeply troubling claim that one’s moral standing as human can as such be forfeited. I argue that an apparently similar rhetoric of dehumanization employed by Frederick Douglass, in contrast, refrains from stripping the opponent of moral considerability. (shrink)

Market incentives in capitalist economies and public health requirements are contradictory. In the COVID-19 pandemic, market-rewarded self-interested behavior has been exposed as a source of mortality and morbidity. Profit-motivated behaviors can keep people from accessing necessities for health thereby harming individuals and possibly damaging population health. The profit motive can also undermine healthcare system capacity by maldistributing goods that are inputs to healthcare. Furthermore, because profit-seeking is economically rational in capitalism, capitalist imperatives may be incompatible with public health. The ways (...) markets misallocate resources provide a rationale for state responsibility for health, which is a public good. (shrink)

Philosophical Issues, Volume 31, Issue 1, Page 188-209, October 2021.

Although gender differences in attitudes toward animal research have been reported in the literature for some time, exploration into the nature of these differences has received less attention. This article examines gender differences in responses to a survey of attitudes toward the use of animals in research. The survey was completed by college students and consisted of items intended to tap different issues related to the animal research debate. Results indicated that women were more likely than men to support tenets (...) of the animal protection movement. Likewise, women were more likely than men to favor increased restrictions on animal use and were more concerned than men about the suffering of research animals. Analysis of item contents suggested that women endorsed items reflecting a general caring for animals, were more willing than men to make personal sacrifices such as giving up meat and medical benefits in an effort to protect animals, and were more likely than men to question the use of animals in research on scientific grounds. Men, on the other hand, tended to emphasize the potential benefits arising from the use of animals in research. (shrink)