The literature on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises concerns that these technologies may affect personality, mood, and behavior. We conducted semi-structured interviews with researchers (n = 23) involved in developing next-generation DBS systems, exploring their perspectives on ethics and policy topics including whether DBS/aDBS can cause such changes. The majority of researchers reported being aware of personality, mood, or behavioral (PMB) changes in recipients of DBS/aDBS. Researchers offered varying estimates of the frequency of PMB changes. A (...) smaller majority reported changes in personality specifically. Some expressed reservations about the scientific status of the term ‘personality,’ while others used it freely. Most researchers discussed negative PMB changes, but a majority said that DBS/aDBS can also result in positive changes. Several researchers viewed positive PMB changes as part of the therapeutic goal in psychiatric applications of DBS/aDBS. Finally, several discussed potential causes of PMB changes other than the device itself. (shrink)

The expansion of research on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises important neuroethics and policy questions related to data sharing. However, there has been little empirical research on the perspectives of experts developing these technologies. We conducted semi-structured, open-ended interviews with aDBS researchers regarding their data sharing practices and their perspectives on ethical and policy issues related to sharing. Researchers expressed support for and a commitment to sharing, with most saying that they were either sharing their data (...) or would share in the future and that doing so was important for advancing the field. However, those who are sharing reported a variety of sharing partners, suggesting heterogeneity in sharing practices and lack of the broad sharing that would reflect principles of open science. Researchers described several concerns and barriers related to sharing, including privacy and confidentiality, the usability of shared data by others, ownership and control of data (including potential commercialization), and limited resources for sharing. They also suggested potential solutions to these challenges, including additional safeguards to address privacy issues, standardization and transparency in analysis to address issues of data usability, professional norms and heightened cooperation to address issues of ownership and control, and streamlining of data transmission to address resource limitations. Researchers also offered a range of views on the sensitivity of neural activity data (NAD) and data related to mental health in the context of sharing. These findings are an important input to deliberations by researchers, policymakers, neuroethicists, and other stakeholders as they navigate ethics and policy questions related to aDBS research. (shrink)

Background: Nurses are the largest professional group in healthcare and those who make more decisions. In 2014, the Committee on Bioethics of the Council of Europe launched the “Guide on the decision-making process regarding medical treatment in end-of-life situations”, aiming at improving decision-making processes and empowering professionals in making end-of-life decisions. The Guide does not mention nurses explicitly. Objectives: To analyze the ethical principles most valued by nurses working in palliative care when making end-of-life decisions and investigate if they are (...) consistent with the framework and recommendations of the Guide; to identify what disputed/controversial issues are more frequent in these nurses’ current end-of-life care practices. Design: Qualitative secondary analysis. Participants/context: Three qualitative datasets including 32 interviews from previous studies with nurses working in palliative care in Portugal. Ethical consideration: Ethical approval was obtained from the Ethics Research Lab of the Instituto de Bioética. Ethical procedures are thoroughly described. Findings: All participant nurses referred to autonomy as an ethical principle paramount in end-of-life decision-making. They were commonly involved in end-of-life decision-making. Palliative sedation and communication were the most mentioned disputed/controversial issues. Discussion: Autonomy was highly valued in end-of-life care and decision-making. Nurses expressed major concerns in assessing patients’ preferences, wishes, and promoting advance care planning. Nurses working in palliative care in Portugal were highly involved in end-of-life decision-making. These processes embraced a collective, inclusive approach. Palliative sedation was the most mentioned disputed issue, which is aligned with previous findings. Communication also emerged as a sensitive ethical issue; it is surprising, however, that only three nurses referred to it. Conclusion: While the Guide does not explicitly mention nurses in its content, this study shows that nurses working in palliative care in Portugal are involved in these processes. Further research is needed on nurses’ involvement and practices in end-of-life decision-making. (shrink)

Burnout is a phenomenon characterized by fatigue and frustration, usually related to work stress and dedication to a cause, a way of life that does not match the person’s expectations. Although it seems to be associated with risk factors stemming from a professional environment, this problem may affect any person. Palliative care is provided in a challenging environment, where professionals often have to make demanding ethical decisions and deal with death and dying. This article reports on the findings of a (...) systematic review aimed at identifying described burnout levels in palliative care nurses and physicians, and the related risks and protective factors. The main findings indicate that burnout levels in palliative care, or in health care settings related to this field, do not seem to be higher than in other contexts. (shrink)

While the NSIGHT program was driven by a desire to define and gather data about both the benefits and harms of introducing genomic sequencing into the care of newborns, it remains to be seen how much influence these data will have in shaping the use of this technology in newborns. Ultimately, three additional forces—commercial interests, the technological imperative, and advocates—may play a significant role in shaping the use of sequencing in newborns. Policy‐makers and clinicians should be aware of the effects (...) of these additional forces when considering the appropriate use of this technology in clinical practice and public health screening programs. (shrink)

This paper is about the relationship between leadership, organisational morals, and temporality. We argue that engaging with questions of time and temporality may help us overcome the overly agentic view of organisational morals and leadership ethics that dominates extant literature. Our analysis of the role of time in organizational morals and leadership ethics starts from a virtue-based approach to leading large-scale moral endeavours. We ask: how can we account for organizational morality across generations and independently of the leader? To address (...) this question, we studied the leadership model of the Jesuits, a Catholic Religious Order. Our case reveals that a virtue-based model of leadership does not necessarily imply that those who are selected to lead the organization are themselves virtuous, but that the processes underpinning the exercise of leadership are cyclical and repeated as truthfully as possible. Virtuous leadership, for the Jesuits, is therefore about the construction of an ideal type of leadership against which the processes which sustain it were designed. Our theoretical contribution is twofold. First, we propose an habitual understanding of moral forms of leadership, in which the procedural is constitutive of moral forms of organising; second, we explain how “timelessness”, understood as the quality of not changing as years go by, allowed the Jesuits to centre the processes which sustain their ethical model on the repetition, across space and time, of said processes, rather than on their outcome. We conclude that the search for virtue might be more relevant for large-scale moral endeavours than virtue itself. (shrink)

When considering the question, “Is it just for a [genetic] screening program to give people all the information they want?” it is first necessary to understand how the information is being presente...

Functional MRI of fully awake and unrestrained dog ’volunteers' has been proven an effective tool to understand the neural circuitry and functioning of the canine brain. Although every dog owner would vouch that dogs are perceptive, cognitive, intuitive and capable of positive emotions/empathy, as indeed substantiated by ethological studies for some time, neurological investigations now corroborate this. These studies show that there exists a striking similarity between dogs and humans in the functioning of the caudate nucleus, and dogs experience positive (...) emotions, empathic-like responses and demonstrate human bonding which, some scientists claim, may be at least comparable with human children. There exists an area analogous to the ’voice area' in the canine brain, enabling dogs to comprehend and respond to emotional cues/valence in human voices, and evidence of a region in the temporal cortex of dogs involved in the processing of faces, as also observed in humans and monkeys. We therefore contend that using dogs in invasive and/or harmful research, and toxicity testing, cannot be ethically justifiable. (shrink)

Functional MRI of fully awake and unrestrained dog ’volunteers' has been proven an effective tool to understand the neural circuitry and functioning of the canine brain. Although every dog owner would vouch that dogs are perceptive, cognitive, intuitive and capable of positive emotions/empathy, as indeed substantiated by ethological studies for some time, neurological investigations now corroborate this. These studies show that there exists a striking similarity between dogs and humans in the functioning of the caudate nucleus, and dogs experience positive (...) emotions, empathic-like responses and demonstrate human bonding which, some scientists claim, may be at least comparable with human children. There exists an area analogous to the ’voice area' in the canine brain, enabling dogs to comprehend and respond to emotional cues/valence in human voices, and evidence of a region in the temporal cortex of dogs involved in the processing of faces, as also observed in humans and monkeys. We therefore contend that using dogs in invasive and/or harmful research, and toxicity testing, cannot be ethically justifiable. (shrink)

The capacity of next-generation closed-loop or adaptive deep brain stimulation devices to read and write shows great potential to effectively manage movement, seizure, and psychiatric disorders, and also raises the possibility of using aDBS to electively modulate mood, cognition, and prosociality. What separates aDBS from most neurotechnologies currently used for enhancement is that aDBS remains an invasive, surgically-implanted technology with a risk-benefit ratio significantly different when applied to diseased versus non-diseased individuals. Despite a large discourse about the ethics of enhancement, (...) no empirical studies yet examine perspectives on enhancement from within the aDBS research community. We interviewed 23 aDBS researchers about their attitudes toward expanding aDBS use for enhancement. A thematic content analysis revealed that researchers share ethical concerns related to safety and security; enhancement as unnecessary, unnatural or aberrant; and fairness, equality, and distributive justice. Most researchers felt that enhancement applications for DBS will eventually be technically feasible and that attempts to develop such applications for DBS are already happening. However, researchers unanimously felt that DBS ideally should not be considered for enhancement until researchers better understand brain target localization and functioning. While many researchers acknowledged controversies highlighted by scholars and ethicists, such as potential impacts on personhood, authenticity, autonomy and privacy, their ethical concerns reflect considerations of both gravity and perceived near-term likelihood. (shrink)

In their article “Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Genetic Information?” Bayefsky and Berkman briefly mention that: “[s]ome are...

Bowman-Smart et al. (2023) suggest that the current ethical frameworks used to evaluate the use of noninvasive prenatal technologies (e.g., NIPT) are inconsistent when used to analyze the ethics of...

In their article “Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism,” Garrison and colleagues (2019) make a compelling case for moving away from the rhetoric of genetic excepti...

The Economy for the Common Good proposes a more ethical and sustainable society and organizations based on the common good concept. The study investigates entrepreneurs' reasons for joining the ECG movement and organizational changes introduced following the implementation of the ECG managerial system. Semistructured interviews were held with managers of nine Italian organizations belonging to the movement. Interviews were transcribed, and qualitative content analysis was performed using NVivo 12. Eleven nodes integrating 279 answer units were coded, addressing reasons for adhering, (...) actions introduced, difficulties, overcoming strategies and enablers. The results suggest that ECG values and particularly Environmental Sustainability and Human Dignity are two main reasons to join the movement, that a Common Good Report is a valuable tool for the organizational analysis, that such analysis can be replicated with other ECG organizations, and that pursuing decent work conditions strengthens the adhesion to the ECG movement. The seven conceptual propositions highlight the congruence between the value structure of the organization and the values of the ECG, the congruence between the values held by proximal organizational stakeholders and the changes encouraged by ECG approach, and that rewards and recognition by the organizational stakeholders and society reinforce and maintain the adhesion path. (shrink)