We investigated family members’ lived experience of Parkinson’s disease aiming to investigate opportunities for well-being. A lifeworld-led approach to healthcare was adopted. Interpretative phenomenological analysis was used to explore in-depth interviews with people living with PD and their partners. The analysis generated four themes: It’s more than just an illness revealed the existential challenge of diagnosis; Like a bird with a broken wing emphasizing the need to adapt to increasing immobility through embodied agency; Being together with PD exploring the kinship (...) within couples and belonging experienced through support groups; and Carpe diem! illuminated the significance of time and fractured future orientation created by diagnosis. Findings were interpreted using an existential-phenomenological theory of well-being. We highlighted how partners shared the impact of PD in their own ontological challenges. Further research with different types of families and in different situations is required to identify services required to facilitate the process of learning to live with PD. Care and support for the family unit needs to provide emotional support to manage threats to identity and agency alongside problem-solving for bodily changes. Adopting a lifeworld-led healthcare approach would increase opportunities for well-being within the PD illness journey. (shrink)

This article examines the various pedagogic models suggested by widely used texts and finds them to be predominately rule-based or rule directed. These approaches to the subject matter of business ethics are quite valuable ones, but we find them to leave no room for the study of the virtues. We intend to articulate our reasons for supporting a central if not exclusive role for virtue ethics.

The following article consists of an introduction by the first author, an annotated translation by the second, and then an analysis by the first, of the earliest known Scandinavian response to the Vampire phenomenon of Medvedia in 1732 by Nicolaus Boye, a state-employed physician residing in Stockholm. The translation shows that Boye’s own article, which constitutes a complete refutation of Johann Flückinger’s claims, was meticulously organised, abstracting and arguing against the major themes which he observed in the Visum et Repertum, (...) while the analysis shows that Boye was working under the topical medical theories of the Dutch botanist and physician Herman Boerhaave. The analysis also demonstrates the extent to which Boye’s rationalism in refuting the Visum at Repertum is informed by his Lutheranism and belief in the Day of Judgement, and concludes by showing examples of the impact his work exerted on other academics in the 1730s. (shrink)

This project tested a two-way model of communication between lay groups and experts about genetic medicine in Perth, Western Australia. Focus group discussion with community group participants was followed by a communication workshop between community group participants and experts. Four groups of concerns or themes emerged from discussion: clinical considerations; legislative concerns; research priorities, and ethical and wider considerations. Community group concerns are not always met by the actions of "experts". This is, in part, because of the differing life-worlds of (...) each group. However, the communication workshop showed the potential of two-way communication for both lay and expert members in understanding the others' viewpoint. Further, the approach developed here offers one possible way for community groups to participate in a substantial way in policy formulation processes. (shrink)

Bioethical dilemmas can emerge in research and clinical settings, from end-of-life decision-making to experimental therapies. The COVID-19 pandemic raised serious ethical challenges for healthcare organizations, highlighting the need to conduct needs assessments of the bioethics infrastructures of healthcare organizations. Clinical ethics committees (CECs) also create equitable policies, train staff on ethics issues, and play a consultative role in resolving the difficulty of complex individual cases. The main objective of this project was to conduct a needs assessment of the bioethics infrastructure (...) within a comprehensive hospital system. A cross-sectional anonymous online survey, including quantitative and qualitative formatted questions. The survey was sent to five key leaders from the organization’s hospitals. Survey questions focused on the composition, structure, function, and effectiveness of their facilities’ bioethics infrastructure and ethics-related training and resources. Positive findings included that most facilities have active CECs with multidisciplinary membership; CECs address critical issues and encourage team members to express clinical ethics concerns. Areas of concern included uncertainty about how CECs function and the process for resolving clinical ethics dilemmas. Most reported no formal orientation process for CEC members, and many said there was no ongoing ethics education process. The authors conclude that if CECs are a critical institutional resource where the practice of medicine and mission intersect, having well-functioning ethics committees with trained and oriented members demonstrates an essential commitment to the mission. The survey revealed that more needs to be done to bolster the bioethics infrastructure of this institution. (shrink)

I describe my current thinking on two old questions—the causal role of appraisals and the relationship of appraisal theories to basic emotions theories and constructivist theories, and three (sort of) new questions—the completeness of appraisals, the role of language, and the development of automaticity in emotional responses.

How are data science systems made to work? It may seem that whether a system works is a function of its technical design, but it is also accomplished through ongoing forms of discretionary work by many actors. Based on six months of ethnographic fieldwork with a corporate data science team, we describe how actors involved in a corporate project negotiated what work the system should do, how it should work, and how to assess whether it works. These negotiations laid the (...) foundation for how, why, and to what extent the system ultimately worked. We describe three main findings. First, how already-existing technologies are essential reference points to determine how and whether systems work. Second, how the situated resolution of development challenges continually reshapes the understanding of how and whether systems work. Third, how business goals, and especially their negotiated balance with data science imperatives, affect a system’s working. We conclude with takeaways for critical data studies, orienting researchers to focus on the organizational and cultural aspects of data science, the third-party platforms underlying data science systems, and ways to engage with practitioners’ imagination of how systems can and should work. (shrink)

As participatory research practices are increasingly taken up in health research, claims related to experiential authority and expertise are frequently made. Here, in an exploration of what grounds such claims, we consider how feminist standpoint theory might apply to the psy sciences (psychiatry, psychology, psychotherapy, psychoanalysis, and so on). Standpoint theory claims that experiences of marginalization and critical engagement can lead to a standpoint that offers an epistemic advantage within a domain of knowledge. We examine experiences of marginalization and critical (...) engagement in the mental health system, as well as evidence for epistemic advantages resulting from these experiences. This evidence, found in the identification of problematic assumptions and the development of new tools and theories in the field, grounds our argument that standpoint theory is indeed relevant to the psy sciences and that many of those who have experienced marginalization and have engaged critically have an epistemic advantage when it comes to knowledge-production. The implications of this argument are significant: those who have attained a standpoint within the psy sciences ought to be included in research and given both tools and funding to develop research programs. However, we must be wary of the risks of tokenization, cooptation, and essentialization that are likely to accompany such a transformation. (shrink)

In this Current Controversy article, I describe and analyse the imminent move to a system of deemed consent for deceased organ donation in England and similar planned changes in Scotland, in light of evidence from Wales, where the system changed in 2015. Although the media has tended to focus on the potential benefits and ethical issues relating to the main change from an opt-in default to an opt-out one, other defaults will also change, while some will remain the same. Interaction (...) of these other defaults with the principal one raise several ethical issues that may complicate efforts to use deemed consent to increase donation rates. Most significantly, changing the main default will have the effect of changing the default for patients' families, who play a vital role in the consent process. (shrink)

The practice of medically assisted dying has long been contentious, and the question of what to call it has become increasingly contentious as well. Particularly among U.S. proponents of legalizing the practice, there has been a growing push away from calling it “physician‐assisted suicide,” with assertions that medically assisted dying is fundamentally different from suicide. Digging deeper into this claim about difference leads to an examination of the difference between two kinds of suffering—suffering from physical conditions and suffering from psychological (...) conditions—and therefore leads also toward an examination of whether requests for medical assistance in dying by those suffering from psychological conditions and those suffering from physical conditions should be painted with the same brush. In this article, I aim both to illuminate some of the considerations that ought to be included in discussions related to medically assisted dying and to shed light on what the indirect effects of such discussions can be. I consider some of the reasons commonly given for holding that suicide and medically assisted dying differ fundamentally and then whether the conclusion that medically assisted dying should not be called “suicide” follows from the premises. I ask what else might justify the conclusion that the two acts ought to be called by different names, and I examine possible justifications for accepting this premise, as well as what justifications might exist for emphasizing how the acts are alike. Finally, I argue that we should be cautious before concluding that medically assisted dying should not be called “suicide.” We need more evidence either that the two acts are fundamentally different or that emphasizing differences between them is not likely to do more harm than good. (shrink)

This article describes James’s distaste for taxonomic classification of emotion and argues that he would not have been pleased by current scholarship which still focuses on the definition and classification of discrete emotions, distracting scholars from more fundamental underlying processes. I argue that as in James’s time, current taxonomies are still arbitrary and still constrain the kinds of questions psychologists ask.

During the COVID-19 pandemic, several hospitals implemented “birthing alone” policies, banning companions from accompanying individuals giving birth. We offer an ethical analysis of these policies. First, we examine them through a consequentialist framework of risks and benefits. Second, we consider the significance of birth, highlighting the unique ways in which risks, relationships, and rights are understood in the context of obstetrics. We conclude that birthing alone policies are largely unjustified, as the harm they are certain to cause outweighs their possible (...) benefits and because they fail to take into account what matters to mothers. (shrink)

Institutional review boards, tasked with facilitating ethical research, are often pulled in competing directions. In what we call the protection-inclusion dilemma, we acknowledge the tensions IRBs face in aiming to both protect potential research participants from harm and include under-represented populations in research. In this manuscript, we examine the history of protectionism that has dominated research ethics oversight in the United States, as well as two responses to such protectionism: inclusion initiatives and critiques of the term vulnerability. We look at (...) what we know about IRB decision-making in relation to protecting and including “vulnerable” groups in research and examine the lack of regulatory guidance related to this dilemma, which encourages protection over inclusion within IRB practice. Finally, we offer recommendations related to how IRBs might strike a better balance between inclusion and protection in research ethics oversight. (shrink)

This article reflects on the relevance and applicability of the Belmont Report nearly four decades after its original publication. In an exploration of criticisms that have been raised in response to the report and of significant changes that have occurred within the context of biomedical research, five primary themes arise. These themes include the increasingly vague boundary between research and practice, unique harms to communities that are not addressed by the principle of respect for persons, and how growing complexity and (...) commodification in research have shed light on the importance of transparency. The repercussions of Belmont's emphasis on the protection of vulnerable populations is also explored, as is the relationship between the report's ethical principles and their applications. It is concluded that while the Belmont Report was an impressive response to the ethical issues of its day, the field of research ethics involving human subjects may have outgrown it. (shrink)

This article provides a brief introduction to psychological emotion theories, particularly appraisal theory. According to appraisal theory emotions are combinations of a person’s appraisal of the novelty, valence, certainty, goal conduciveness, causal agency, controllability, and morality of a situation. These dimensions correspond to elements of the stories attorneys attempt to create in arguing a case. Appraisal theory puts specific content into the vague concept of reappraisal, accounting for emotional changes that go beyond the changes in valence and intensity generally studied (...) by law and emotions scholars. (shrink)

This paper argues against incorporating assessments of individual responsibility into healthcare policies by expanding an existing argument and offering a rebuttal to an argument in favour of such policies. First, it is argued that what primarily underlies discussions surrounding personal responsibility and healthcare is not causal responsibility, moral responsibility or culpability, as one might expect, but biases towards particular highly stigmatised behaviours. A challenge is posed for proponents of taking personal responsibility into account within health policy to either expand the (...) debate to also include socially accepted behaviours or to provide an alternative explanation of the narrowly focused discussion. Second, a critical response is offered to arguments that claim that policies based on personal responsibility would lead to several positive outcomes including healthy behaviour change, better health outcomes and decreases in healthcare spending. It is argued that using individual responsibility as a basis for resource allocation in healthcare is unlikely to motivate positive behaviour changes, and is likely to increase inequality which may lead to worse health outcomes overall. Finally, the case of West Virginia's Medicaid reform is examined, which raises a worry that policies focused on personal responsibility have the potential to lead to increases in medical spending overall. (shrink)

Hastings Center Report, Volume 52, Issue 1, Page 28-31, January/February 2022.

In recent years, the possible benefits of mindfulness meditation have sparked much public and academic interest. Mindfulness emphasizes cultivating awareness of our immediate experience and has been associated with compassion, empathy, and various other prosocial traits. However, neurobiological evidence pertaining to the prosocial benefits of mindfulness in social settings is sparse. In this study, we investigate neural correlates of trait mindful awareness during naturalistic dyadic interactions, using both intra-brain and inter-brain measures. We used the Muse headset, a portable electroencephalogram device (...) often used to support mindfulness meditation, to record brain activity from dyads as they engaged in naturalistic face-to-face interactions in a museum setting. While we did not replicate prior laboratory-based findings linking trait mindfulness to individual brain responses, self-reported mindful awareness did predict dyadic inter-brain synchrony, in theta and beta frequencies. These findings underscore the importance of conducting social neuroscience research in ecological settings to enrich our understanding of how neural correlates of social traits such as mindful awareness manifest during social interaction, while raising critical practical considerations regarding the viability of commercially available EEG systems. (shrink)

William James was not a basic emotion theorist in that he did not propose a list of basic emotions or concern himself with the question of which emotions were really basic. He may have believed that some emotions evolved earlier and spread more widely than others; whether this makes him a basic emotion theorist is a matter of taste.

Suetonius’ Lives of the Caesars usually begin with a family tree. These family trees are often rhetorical, foreshadowing in the ancestors character traits that will be themes of the rest of the Life. This particular rhetorical strategy relies upon an older phenomenon of ‘family identity’—namely, the literary application of similar characteristics to people in the same family—such as the one that tells us that the Claudii are proud and the Domitii Ahenobarbi are ferocious. Gary Farney studied ‘family identity’ as a (...) phenomenon of the Republic. There, it was the association of a family with a certain characteristic, a kind of ‘branding’. It would be perfectly obvious for Suetonius to use the family identities already in use for well-known families, but, as I show here, Suetonius’ selection of ancestors creates different family identities rather than simply using the traditional ones he would have found in other sources. In this study I concentrate on Nero and Tiberius. I focus on these two emperors because they are individuals where there is a known family identity in other sources and they also have the most detailed and elaborate ancestry sections in Suetonius’ Caesars. Family identity seems to be most interesting to Suetonius when it goes against expectations, and that is when Suetonius’ family trees are most elaborate. (shrink)

In recent years social financiers have been increasingly investing in alternative food systems to improve sustainability outcomes. However, social finance for alternative food systems remains small and marginalized. This article seeks to understand why this approach is not yet making a larger impact towards food system transformation. It does so by investigating a specific application of social finance through the case of Slow Money to get answers as to why social finance occupies a niche role in food system transformation. These (...) answers provide helpful lessons for Alternative Food Networks (AFNs) seeking to transform food systems towards greater sustainability. This study tracks the intended impacts of these initiatives and provides insights about the potential role of social finance for promoting AFNs. Key themes emerged regarding the ability of social financing initiatives to support AFNs and transform the food system for greater sustainability. These themes resonate with the literature on AFNs in meaningful ways, but also highlight an important contradiction between systemic change and individual action. The findings show that the Slow Money model contains some useful elements for radical transformation but is ultimately limited in its ability to support deeper, transformative change. The conclusion advances recommendations for ways of enhancing the transformative potential of community financing initiatives in light of the findings, emphasizing the role of public investments. (shrink)

In their target article, Zamina Mithani, Jane Cooper, and J. Wesley Boyd make a compelling case for the importance of “counter storytelling” in bioethics. They obse...

It is argued here that the practice of medical students performing pelvic exams on women who are under anesthetic and have not consented is immoral and indefensible. This argument begins by laying out the ethical justification for the practice of informed consent, which can be found in autonomy and basic rights. Foregoing the process of consent within medicine can result in violations of both autonomy and basic rights, as well as trust, forming the basis of the wrong of unauthorized pelvic (...) examinations. Several objections to this argument are considered, all of which stem from the idea that this practice constitutes an exception to the general requirement of informed consent. These objections suggest that nonconsensual pelvic examinations on women under anesthetic are ethically acceptable on utilitarian grounds, in that they offer benefits either to the patient or to society, or on the grounds of triviality, in that consent is already presumed, or the practice is insignificant. Each of these objections is rejected and the practice is deemed indefensible. (shrink)

Racial disparities in pain treatment are well documented. Such disparities are explained with reference to factors related to providers, health care structures, and patient behaviors. Racial differences in pain experiences, although well documented, are less well understood. Explanations for such differences usually involve genetic or psychological factors. Here, we argue that racial differences in pain experiences might also be explained by disparities in pain treatment. Based on what we know about the nature of pain, particularly the cognitive and affective aspects (...) of the phenomenon, it is likely that disparities in the treatment of racialized patients can lead to significant racial differences in pain experience that show up at the population level. We argue that the failure of research programs to consider this causal factor is an example of white ignorance. We also consider several implications of the link between racial disparities in pain treatment and racial differences in pain experience. (shrink)

This paper offers a critical analysis of several accounts of the placebo effect that have been put forward. While the placebo effect is most often thought of as a control in research and as a deceptive tool in practice, a growing body of research suggests that it ought to be thought of as a powerful phenomenon in its own right. Several accounts that aim to draw boundaries around the placebo effect are evaluated in relation to current evidence and it is (...) argued that none of them adequately capture the variability and potency of the phenomenon. Two accounts, however, that point towards the underlying mechanisms of the placebo effect, are shown to offer promise in terms of developing a more comprehensive account of the placebo effect. (shrink)

Some thoughts on the nature of networks, the prevalence of emotional experiences, and the importance of new questions.

Philosophy and Phenomenological Research, EarlyView.