Clinical Ethics Committees, as distinct from Research Ethics Committees, were originally established with the aim of supporting healthcare professionals in managing controversial clinical ethical issues. However, it is still unclear whether they manage to accomplish this task and what is their impact on clinical practice. This systematic review aims to collect available assessments of CECs’ performance as reported in literature, in order to evaluate CECs’ effectiveness. We retrieved all literature published up to November 2019 in six databases, following PRISMA guidelines. (...) We included only articles specifically addressing CECs and providing any form of CECs performance assessment. Twenty-nine articles were included. Ethics consultation was the most evaluated of CECs’ functions. We did not find standardized tools for measuring CECs’ efficacy, but 33% of studies considered “user satisfaction” as an indicator, with 94% of them reporting an average positive perception of CECs’ impact. Changes in patient treatment and a decrease of moral distress in health personnel were reported as additional outcomes of ethics consultation. The highly diverse ways by which CECs carry out their activities make CECs’ evaluation difficult. The adoption of shared criteria would be desirable to provide a reliable answer to the question about their effectiveness. Nonetheless, in general both users and providers consider CECs as helpful, relevant to their work, able to improve the quality of care. Their main function is ethics consultation, while less attention seems to be devoted to bioethics education and policy formation. (shrink)

As people grow old, many risk becoming chronically lonely which is associated with e.g. depression, dementia, and increased mortality. Whoever else should help to protect them from this risk, various philosophers have argued that any children that they might have will often be among them. Proceeding on this assumption, this article considers what filial duties to protect ageing parents from loneliness consist of, or might consist of. I develop my answer by showing that a view that may be intuitively plausible, (...) namely that they simply require children to visit their ageing parents regularly when they can do so at reasonable cost and call, text, and/or email them from time to time, is defective in three respects. First, it ignores children’s potential responsibilities to encourage and/or facilitate social interaction between their parents and third parties. Second, it ignores their potential responsibilities to help provide their parents with non-human companionship. Third, it elides over their duties to coordinate their efforts to offer loneliness protection with others. What I end up proposing instead, then, is an approach for protecting ageing parents from loneliness that is multi-faceted. (shrink)

The number of people who survive critical illness is increasing. In parallel, a growing body of literature reveals a broad range of side-effects following intensive care treatment. Today, more attention is needed to improve the quality of survival. Based on nine individual stories of illness experiences given by participants in two focus groups and one individual interview, this paper elaborates how former critically ill patients craft and recraft their personal stories throughout their illness trajectory. The analysis was conducted from a (...) phenomenological perspective and led to the meaning structure; a quest to find oneself after critical illness. In this structure, illness represented a breakdown of the participants’ lives, forcing them to develop a new understanding of themselves. Despite acute illness, they felt safe in hospital. Coming home, however, meant a constant balancing between health and illness, and being either in or out of control. To gain a deeper understanding of the participants’ narratives of survival, the meaning structure was developed from a phenomenological life world perspective, Heidegger’s concept of homelikeness and Arthur Frank’s typologies of illness narratives. In conclusion listening to and acknowledging the patients’ lived experiences of critical illness may support the patient efforts to establish the newly defined self and hence be vital for recovery. Phenomenology is one approach facilitating care tailored to the patients’ lived experience of critical illness and its aftermaths. (shrink)

In their 2008 paper, Persson and Savulescu suggest that for moral bioenhancement to be effective at eliminating the danger of ‘ultimate harm’ the intervention would need to be compulsory. This is because those most in need of MBE would be least likely to undergo the intervention voluntarily. By drawing on concepts and theories from epidemiology, this paper will suggest that MBE may not need to be universal and compulsory to be effective at significantly improving the collective moral standing of a (...) human populace and reducing the threat of ultimate harm. It will identify similarities between the mechanisms that allow biological contagions and behaviours to develop, spread, and be reinforced within a population. It will then go onto suggest that, just as with the epidemiological principle of herd immunity, if enough people underwent MBE to reach a minimum threshold then the incidence and spread of immoral behaviours could be significantly reduced, even in those who have not received MBE. (shrink)

One barrier to optimal pain management in the neonatal intensive care unit is how the healthcare community perceives, and therefore manages, neonatal pain. In this paper, we emphasise that healthcare professionals not only have a professional obligation to care for neonates in the NICU, but that these patients are intrinsically worthy of care. We discuss the conditions that make neonates worthy recipients of pain management by highlighting how neonates are vulnerable to pain and harm, and completely dependent on others for (...) pain management. We argue for a relational account of ethical decision-making in the NICU by demonstrating how an increase in vulnerability and dependence may be experienced by the healthcare community and the neonate’s family. Finally, an ethical framework for decisions around neonatal pain management is proposed, focussing on surrogate decision-making and the importance of compassionate action through both a reflective and an affective empathy. As empathy can be highly motivating against pain, we propose that, in addition to educational programs that raise awareness and knowledge of neonatal pain and pain management, healthcare professionals must cultivate empathy in a collective manner, where all members of the NICU team, including parents, are compassionate decision-makers. (shrink)

The lived body has structures of ability built up over time through habit. Serious illness, injury, and incapacity can disrupt these capacities, and thereby, one’s relationship to the body, and to time itself. This paper focuses attention on a series of healing strategies individuals then employ on the “chessboard” of possibilities intrinsic to lived embodiment. This can include restoring past abilities ; and/or transforming one’s bodily structure or use-patterns, or the external environment, to compensate. With many conditions, including progressive aging, (...) no full rehabilitation is possible. Nevertheless, one can also seek consolation, richness, or hope by remembering the past; anticipating the future; or presencing, that is, living fully in the now. Insofar as past, present, and future are interwoven in one’s life experience, many also meet adversity by a life-story revision, constructing a new narrative to render events meaningful. Some also access a sense of transpersonal timelessness, whether through anticipation of an afterlife, or a sense of the eternal present. There is a literature on the adaptive coping mechanism used by the chronically ill, but with its diverse patient populations, methodologies, and categories, it has proved difficult to systematize. This article suggests that the structures of lived embodiment, as explored by phenomenology, provide a way to understand the modes of wholeness individuals access over time, and in relation to time—what is here termed chronic healing. (shrink)

Since a number of years, popular and scientific interest in resilience is rapidly increasing. More recently, also neuroscientific research in resilience and the associated neurobiological findings is gaining more attention. Some of these neuroscientific findings might open up new measures to foster personal resilience, ranging from magnetic stimulation to pharmaceutical interventions and awareness-based techniques. Therefore, bioethics should also take a closer look at resilience and resilience research, which are today philosophically under-theorized. In this paper, we analyze different conceptualizations of resilience (...) and argue that especially one-sided understandings of resilience which dismiss social and cultural contexts of personal resilience do pose social and ethical problems. On a social level such unbalanced views on resilience could hide and thereby stabilize structural social injustices, and on an individual level it might even lead to an aggravation of stress-related mental health problems by overexerting the individual. Furthermore, some forms of fostering resilience could be a latent form of human enhancement and trigger similar criticisms. (shrink)

An enduring ethical dispute accompanies prenatal screening and testing technologies. This ethical debate focuses on notions of reproductive choice. On one side of the dispute are those who have supported PST as a way to empower women’s reproductive choice, while on the other side are those who argue that PST, particularly when made a routine part of prenatal care, limits deliberate choice. Empirical research does not resolve this ethical debate with evidence both of women for whom PST enhances their choices (...) but also persistent evidence of recurrent problems between PST and women’s autonomous decision-making. While there have been attempts to remove challenges to reproductive choice, it has been argued that these challenges cannot be removed entirely. In this paper I provide a historical review of PST technologies’ development and in doing so provide a detailed insight into the root causes of this tension between the opposing sides of this debate. This historical account provides evidence that those who championed the early use of these technologies did so in order to achieve a number of wholly different goals other than women’s choice and empowerment. These different aims focus on scientific discovery and eugenic goals and, I argue, are irreconcilable with women’s choice and empowerment. It thus may not be surprising that the resulting practice of PST continues to resist compatibility with women’s choice and empowerment. Ultimately, by understanding the historical foundations of PST we can more effectively assess how to reconcile women’s reproductive autonomy with routine prenatal screening. (shrink)

Doctors have been treating infectious diseases for hundreds of years, but the risk they and other medical professionals are exposed to in an epidemic has always been high. At the front line of the present war against COVID-19, medical teams are endangering their lives as they continue to treat patients suffering from the disease. What is the degree of danger that a medical team must accept in the face of a pandemic? What are the theoretical justifications for these risks? This (...) article offers answers to these questions by citing opinions based on Jewish ethical thought that has been formulated down through the ages. According to Jewish ethics, the obligation to assist and care for patients is based on many commandments found in the Bible and on rulings in the Responsa literature. The ethical challenge is created when treating the sick represents a real existential danger to the caregivers and their families. This consideration is relevant for all dangerous infectious diseases and particularly for the coronavirus that has struck around the world and for which there is as yet no cure. Many rabbis over the years have offered the religious justifications for healing in a general sense and especially in cases of infectious diseases as they have a bearing on professional and communal obligations. They have compared the ethical expectations of doctors to those of soldiers but have not sanctioned taking risks where there is insufficient protection or where there is a danger to the families of the medical professionals. (shrink)

Jacobson finds two distinct meanings of “dignity” in the literature on dignity and health: intrinsic human dignity and social dignity constituted through interactions with caregivers. Especially the latter has been central in empirical health research and warrants further exploration. This article focuses on the social dignity of people marginalized by mental illness, substance abuse and comparable conditions in extramural settings. 35 studies published between 2007 and 2017 have addressed this issue, most of them identifying norms for social dignity: civilized interactions, (...) non-stigmatizing treatment, treatment as unique individuals, being taken seriously, maintaining a positive identity, experiencing independence, relating to others, and participating in daily life. We argue that these norms belong to ideal theory, whereas we agree with Robeyns and others that improving practice is better served by non-ideal theory. Towards this end, we derive from the literature four building blocks for a non-ideal theory of dignity: avoid violations of dignity rather than seeking to promote it; dignity is not a goal to be reached; it requires ongoing effort; promoting dignity is a balancing act; contradictory norms can make it impossible to realize; and dignity can be undermined by organizational and discursive constraints. (shrink)

The Covid-19 pandemic creates an unprecedented threatening situation worldwide with an urgent need for critical reflection and new knowledge production, but also a need for imminent action despite prevailing knowledge gaps and multilevel uncertainty. With regard to the role of research ethics in these pandemic times some argue in favor of exceptionalism, others, including the authors of this paper, emphasize the urgent need to remain committed to core ethical principles and fundamental human rights obligations all reflected in research regulations and (...) guidelines carefully crafted over time. In this paper we disentangle some of the arguments put forward in the ongoing debate about Covid-19 human challenge studies and the concomitant role of health-related research ethics in pandemic times. We suggest it might be helpful to think through a lens differentiating between risk, strict uncertainty and ignorance. We provide some examples of lessons learned by harm done in the name of research in the past and discuss the relevance of this legacy in the current situation. (shrink)

Retractions of COVID-19 literature in both preprints and the peer-reviewed literature serve as a reminder that there are still challenging issues underlying the integrity of the biomedical literature. The risks to academia become larger when such retractions take place in high-ranking biomedical journals. In some cases, retractions result from unreliable or nonexistent data, an issue that could easily be avoided by having open data policies, but there have also been retractions due to oversight in peer review and editorial verification. As (...) COVID-19 continues to affect academics and societies around the world, failures in peer review might also constitute a public health risk. The effectiveness by which COVID-19 literature is corrected, including through retractions, depends on the stringency of measures in place to detect errors and to correct erroneous literature. It also relies on the stringent implementation of open data policies. (shrink)

This paper examines the prevalence of the ideal of “independence” in intellectual disability care in the Netherlands. It responds to a number of scholars who have interrogated this ideal through the lens of Michel Foucault’s vocabulary of governmentality. Such analyses hold that the goal of “becoming independent” subjects people with intellectual disabilities to various constraints and limitations that ensure their continued oppression. As a result, these authors contend, the commitment to the ideal of “independence” – the “ethic of autonomy” – (...) actually threatens to become an obstacle to flourishing in the group home. This paper offers an alternative analysis. It does so by drawing on a case study taken from an ethnographic study on group home life in the Netherlands. Briefly put, the disagreement stems from differing conceptualizations of moral life. Put in the vocabulary of moral anthropologist Cheryl Mattingly, the authors propose to approach the group home more from a “first-person” perspective rather than chiefly from a “third-person” perspective. They then draw on Mattingly to cast the group home as a “moral laboratory” in which the ethic of autonomy is not just reproduced but also enacted, and in which the terms of dependence constantly get renegotiated in practice. What emerges is not only a new perspective on the workings of the “ethic of autonomy” in the group home, but also an argument about the possible limitations of the vocabulary of governmentality for analysing care practices. (shrink)

An effective method to increase the number of potential cadaveric organ donors is to make people donors by default with the option to opt out. This non-coercive public policy tool to influence people’s choices is often justified on the basis of the as-judged-by-themselves principle: people are nudged into choosing what they themselves truly want. We review three often hypothesized reasons for why defaults work and argue that the as-judged-by-themselves principle may hold only in two of these cases. We specify further (...) conditions for when the principle can hold in these cases and show that whether those conditions are met is often unclear. We recommend ways to expand nationwide surveys to identify the actual reasons for why defaults work and discuss mandated choice policy as a viable solution to many arising conundrums. (shrink)