Developing a living lab in ethics: Initial issues and observations.

Living labs are interdisciplinary and participatory initiatives aimed at bringing research closer to practice by involving stakeholders in all stages of research. Living labs align with the principles of participatory research methods as well as recent insights about how participatory ways of generating knowledge help to change practices in concrete settings with respect to specific problems. The participatory, open, and discussion-oriented nature of living labs could be ideally suited to accompany ethical reflection and changes ensuing from reflection. To our knowledge, living labs have not been explicitly trialed and reported in ethics literature. In this discussion paper, we report and discuss four initial issues that marked the process of setting up a living lab in ethics: (1) determining the goals and expected outcomes of an ethics living lab; (2) establishing operational procedures; (3) selecting communities and defining pilot projects; and (4) adopting a lens to tackle emerging questions and challenges. We explain these four issues and present the paths taken based on the novel and specific orientation, that is, living ethics, at the basis of this project. In alignment with living ethics and É-LABO, we approach challenges as learning opportunities to ask not only "how" questions but also "why" questions. We hope that this discussion paper informed by our experience helps to clarify the theoretical, methodological, and practical approaches necessary to successfully adopt and employ living labs in ethics.

Living ethics: a stance and its implications in health ethics.

Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a "living ethics", described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process.

Physicians' attitudes towards ethical issues and end-of-life decision-making for pediatric patients with unresponsive wakefulness syndrome: An international survey.

AIM: We examined physicians' perspectives on the mental capabilities of pediatric patients with unresponsive wakefulness syndrome (UWS) and their attitudes towards limiting life-sustaining treatment (LST) in an international context. METHOD: A questionnaire survey was conducted among 267 neuropediatricians, practicing in 65 countries. Comparisons were made according to the Human Development Index (HDI) of the countries. The Idler Index of Religiosity was applied to determine religiosity. RESULTS: Participants from countries with a very high HDI were generally more favorable to limiting LST (p < 0.001), specifically cardiopulmonary resuscitation (p = 0.021), intubation/ventilation (p = 0.014), hemodialysis/hemofiltration (p < 0.001), and antibiotic therapy (p < 0.001). Treatment costs that were too high had a weaker influence on their decisions (p < 0.001). Participants who found it never ethically justifiable to limit LST had a higher mean Idler Index of private (p = 0.001) and general (p = 0.020) religiosity and were less satisfied with treatment decisions (p < 0.001) and the communication during the process (p = 0.016). INTERPRETATION: The perspectives towards limiting LST for pediatric patients with UWS are markedly different between physicians from countries with very high and lower HDIs.

Stigmatization in the context of the COVID-19 pandemic: a survey experiment using attribution theory and the familiarity hypothesis.

BACKGROUND: The COVID-19 pandemic has created a global health crisis, leading to stigmatization and discriminatory behaviors against people who have contracted or are suspected of having contracted the virus. Yet the causes of stigmatization in the context of COVID-19 remain only partially understood. Using attribution theory, we examine to what extent attributes of a fictitious person affect the formation of stigmatizing attitudes towards this person, and whether suspected COVID-19 infection (vs. flu) intensifies such attitudes. We also use the familiarity hypothesis to explore whether familiarity with COVID-19 reduces stigma and whether it moderates the effect of a COVID-19 infection on stigmatization. METHODS: We conducted a multifactorial vignette survey experiment (28-design, i.e., NVignettes = 256) in Germany (NRespondents = 4,059) in which we experimentally varied signals and signaling events (i.e., information that may trigger stigma) concerning a fictitious person in the context of COVID-19. We assessed respondents' cognitive (e.g., blameworthiness) and affective (e.g., anger) responses as well as their discriminatory inclinations (e.g., avoidance) towards the character. Furthermore, we measured different indicators of respondents' familiarity with COVID-19. RESULTS: Results revealed higher levels of stigma towards people who were diagnosed with COVID-19 versus a regular flu. In addition, stigma was higher towards those who were considered responsible for their infection due to irresponsible behavior. Knowing someone who died from a COVID infection increased stigma. While higher self-reported knowledge about COVID-19 was associated with more stigma, higher factual knowledge was associated with less. CONCLUSION: Attribution theory and to a lesser extent the familiarity hypothesis can help better understand stigma in the context of COVID-19. This study provides insights about who is at risk of stigmatization and stigmatizing others in this context. It thereby allows identifying the groups that require more support in accessing healthcare services and suggests that basic, factually oriented public health interventions would be promising for reducing stigma.

Medical assistance in dying for people living with mental disorders: a qualitative thematic review.

BACKGROUND: Medical assistance in dying (MAiD) sparks debate in several countries, some of which allow or plan to allow MAiD where a mental disorder is the sole underlying medical condition (MAiD-MD). Since MAiD-MD is becoming permissible in a growing number of jurisdictions, there is a need to better understand the moral concerns related to this option. Gaining a better understanding of the moral concerns at stake is a first step towards identifying ways of addressing them so that MAiD-MD can be successfully introduced and implemented, where legislations allow it. METHODS: Thus, this article aims (1) to better understand the moral concerns regarding MAiD-MD, and (2) to identify potential solutions to promote stakeholders' well-being. A qualitative thematic review was undertaken, which used systematic keyword-driven search and thematic analysis of content. Seventy-four publications met the inclusion criteria. RESULTS: Various moral concerns and proposed solutions were identified and are related to how MAiD-MD is introduced in 5 contexts: (1) Societal context, (2) Healthcare system, (3) Continuum of care, (4) Discussions on the option of MAiD-MD, (5) MAiD-MD practices. We propose this classification of the identified moral concerns because it helps to better understand the various facets of discomfort experienced with MAiD-MD. In so doing, it also directs the various actions to be taken to alleviate these discomforts and promote the well-being of stakeholders. CONCLUSION: The assessment of MAiD-MD applications, which is part of the context of MAiD-MD practices, emerges as the most widespread source of concern. Addressing the moral concerns arising in the five contexts identified could help ease concerns regarding the assessment of MAiD-MD.

Support structures for healthcare professionals involved in medical assistance in dying: Quebec, Canada, and the international landscape.

When the Act Respecting End-of-Life Care came into effect in Quebec in 2015, nearly 30 Interdisciplinary Support Groups (ISGs) were formed to accompany practitioners and managers in the clinical, administrative, legal, and ethical practice of Medical Assistance in Dying (MAiD). Today, significant variability is observed in the constitution, role and functioning of ISGs. Based on an overview of national and international support structures, we highlight the strengths and challenges of ISGs. This article presents the results of the first phase of research conducted with 245 people involved in the practice of MAiD in Quebec. The objective is to survey current ISG practices in order to contrast them with those of equivalent structures in Canada and around the world. The intention is to guide leaders in the development of support structures for their institutions. In summary, ISGs are distinguished by their interdisciplinary constitution, their decentralized nature, and their proximity to the teams in the field. However, their service offer remains largely unknown to caregivers and the general population. This can be explained by the undefined and unlimited nature of their mandate, but also by the gap between the scope of their mandate and the lack of funding they receive.

Understanding Rare Disease Experiences Through the Concept of Morally Problematic Situations.

Rare diseases, defined as having a prevalence inferior to 1/2000, are poorly understood scientifically and medically. Appropriate diagnoses and treatments are scarce, adding to the burden of living with chronic medical conditions. The moral significance of rare disease experiences is often overlooked in qualitative studies conducted with adults living with rare diseases. The concept of morally problematic situations arising from pragmatist ethics shows promise in understanding these experiences. The objectives of this study were to (1) acquire an in-depth understanding of morally problematic situations experienced by adults living with rare diseases in the province of Québec and (2) to develop an integrative model of the concept of morally problematic situations. To this end, an online survey targeting this population was developed through a participatory action research project. Respondents provided 90 long testimonies on the most important morally problematic situations they faced, often in healthcare settings. An integrative model was developed based on various qualitative analyses of these testimonies and relevant literature. The integrative model showcases that morally problematic situations have causes (i.e., contextual and relational factors, personal factors, jeopardized valuations), have affective repercussions (i.e., emotions and feelings, internal tensions), prompt action (i.e., through empowerment strategies leading to the evolution of situations), and elicit outcomes (i.e., factual consequences, residual emotions and feelings, positive or negative resolutions). In sum, this study advances understanding of the moral experiences of adults living with rare diseases while proposing a comprehensive conceptual tool to guide future empirical bioethics research on moral experiences.

Clinician preferences for neurotechnologies in pediatric drug-resistant epilepsy: A discrete choice experiment.

OBJECTIVE: Novel and minimally invasive neurotechnologies offer the potential to reduce the burden of epilepsy while avoiding the risks of conventional resective surgery. Few neurotechnologies have been tested in randomized controlled trials with pediatric populations, leaving clinicians to face decisions about whether to recommend these treatments with insufficient evidence about the relevant risks and benefits. This study specifically explores the preferences of clinicians for treating pediatric drug-resistant epilepsy (DRE) with novel neurotechnologies. METHODS: A discrete-choice experiment (DCE) was designed to elicit the preferences of clinicians with experience in treating children with DRE using novel neurotechnological interventions. The preferences for six key attributes used when making treatment decisions (chances of clinically significant improvement in seizures, major and minor risks from intervention, availability of evidence, financial burden for the family, and access to the intervention) were estimated using a conditional logit model. The estimates from this model were then used to predict the adoption of existing novel neurotechnological interventions. RESULTS: Sixty-eight clinicians completed the survey: 33 neurosurgeons, 28 neurologists, and 7 other clinicians. Most clinicians were working in the United States (74%), and the remainder (26%) in Canada. All attributes, apart from the nearest location with access to the intervention, influenced preferences significantly. The chance of clinically significant improvement in seizures was the most positive influence on clinician preferences, but low-quality evidence and a higher risk of major complications could offset these preferences. Of the existing neurotechnological interventions, vagus nerve stimulation was predicted to have the highest likelihood of adoption; deep brain stimulation had the lowest likelihood of adoption. SIGNIFICANCE: The preferences of clinicians are drive primarily by the likelihood of achieving seizure freedom for their patients, but preferences for an intervention are largely eradicated if only low quality of evidence supporting the intervention is available. Until better evidence supporting the use of potentially effective, novel neurotechnologies becomes available, clinicians are likely to prefer more established treatments.

How to evaluate the quality of an ethical deliberation? A pragmatist proposal for evaluation criteria and collaborative research.

Ethics designates a structured process by which important human values and meanings of life are understood and tackled. Therein, the ability to discuss openly and reflect on (aka deliberation) understandings of moral problems, on solutions to these problems, and to explore what a meaningful resolution could amount to is highly valued. However, the indicators of what constitutes a high-quality ethical deliberation remain vague and unclear. This article proposes and develops a pragmatist approach to evaluate the quality of deliberation. Deliberation features three important moments: (1) broadening and deepening the understanding of the situation, (2) envisioning action scenarios, (3) coming to a judgment based on the comparative evaluation of scenarios. In this paper, we propose seven criteria to evaluate ethical deliberations: (1) collaborative diversity, (2) experiential literacy, (3) organization of experiences, (4) reflective capacity to instrumentalize the experiences of others, (5) interactional creativity, (6) openness of agents, (7) quality of the reformulation of scenarios. These criteria are explained and applied to the three moments of deliberation. Based on these criteria, three kinds of outcomes for deliberations are identified and discussed: good ethical deliberations, partial ethical deliberations, bad ethical deliberations. Our proposal will guide researchers and practitioners interested in the evaluation of the quality of ethical deliberations. It provides a reference tool that allows them to identify the possible limitations of a deliberation and to implement actions aimed at correcting these limitations in order to achieve the desired qualitative objectives.

Voluntary decision-making in addiction: A comprehensive review of existing measurement tools.

The notion of voluntariness, notably the inability to refrain from using an addictive substance, is central to addiction. This review examines different constructs measuring voluntariness in the context of drug addiction. We found 117 articles featuring 123 distinct scales for 11 of the 16 constructs initially searched. Self-efficacy was by far the construct with most scales. Most scales were not specifically developed with samples of people with addictions. From a methodological standpoint, current literature jeopardizes the validity of generalizations about how voluntariness functions and is measured in people with and without a drug addiction. From the standpoint of social psychology, the study of voluntariness remains anchored in an individualistic orientation to the study of cognition and behavior, thus calling for greater crosstalk between psychology subspecialties.

Perceptions and expectations of adults with type 1 diabetes for the use of artificial pancreas systems with and without glucagon addition: Results of an online survey.

BACKGROUND AND AIMS: The first hybrid artificial pancreas (AP) systems with insulin only (mono-hormonal) have recently reached the market while next generations systems are under development including those with glucagon addition (bi-hormonal). Understanding the expectations and impressions of future potential users about AP systems is important for optimal use of this clinically effective emerging technology. METHODS AND RESULTS: An online survey about AP systems which consisted of 50 questions was addressed to people with type 1 diabetes in the province of Quebec, Canada. Surveys were completed by 123 respondents with type 1 diabetes (54% women, mean (SD) age 40.2 (14.4) y.o., diabetes duration 23.7 (14.1) years, 58% insulin pump users and 43% glucose sensor users). Of the respondents, 91% understood how AP systems work, 79% trusted them with correct insulin dosing, 73% were willing to replace their current treatment with AP and 80% expected improvement in quality of life. Anxiety about letting an algorithm control their glucose levels was expressed by 18% while the option of ignoring or modifying AP instructions was favoured by 88%. As for bi-hormonal AP systems, 83% of respondents thought they would be useful to further reduce hypoglycemic risks. CONCLUSIONS: Overall, respondents expressed positive views about AP systems use and high expectations for a better quality of life, glycemic control and hypoglycemia reduction. Data from this survey could be useful to health care professionals and developers of AP systems.

Cognitive Enhancement: Unanswered Questions About Human Psychology and Social Behavior.

Stimulant drugs, transcranial magnetic stimulation, brain-computer interfaces, and even genetic modifications are all discussed as forms of potential cognitive enhancement. Cognitive enhancement can be conceived as a benefit-seeking strategy used by healthy individuals to enhance cognitive abilities such as learning, memory, attention, or vigilance. This phenomenon is hotly debated in the public, professional, and scientific literature. Many of the statements favoring cognitive enhancement (e.g., related to greater productivity and autonomy) or opposing it (e.g., related to health-risks and social expectations) rely on claims about human welfare and human flourishing. But with real-world evidence from the social and psychological sciences often missing to support (or invalidate) these claims, the debate about cognitive enhancement is stalled. In this paper, we describe a set of crucial debated questions about psychological and social aspects of cognitive enhancement (e.g., intrinsic motivation, well-being) and explain why they are of fundamental importance to address in the cognitive enhancement debate and in future research. We propose studies targeting social and psychological outcomes associated with cognitive enhancers (e.g., stigmatization, burnout, mental well-being, work motivation). We also voice a call for scientific evidence, inclusive of but not limited to biological health outcomes, to thoroughly assess the impact of enhancement. This evidence is needed to engage in empirically informed policymaking, as well as to promote the mental and physical health of users and non-users of enhancement.

"You're Part of Us and We're Happy to Have You Here": Practices of Social Inclusion for Persons with Dementia.

Objectives: Practices of social inclusion are important for maintaining the relationships of persons with dementia and are associated with positive clinical outcomes. The objective of this study was to explore the in-action practices of social inclusion in the activity center of a community-based organization.Methods: This study applies an ethnographic approach - including participant observation, informal and semi-structured interviews - with persons with dementia (n = 31) and organization staff members (n = 9) to explore the in-action practices of social inclusion.Results: Seven in-action practices of inclusion were identified: ensuring time for individual relationships, building schedules centered around flexibility, empowering decision-making, normalizing dementia-related behaviors, involving family members, soliciting and integrating persons with dementia's feedback, and supporting persons with dementia to practice social inclusion.Conclusions: Care providers of individuals with dementia can effectively facilitate active connections with them by continually soliciting and incorporating their feedback, and by supporting persons with dementia to practice inclusion and care for others.Clinical Implications: Community-based organizations can be effective at supporting the active connection of individuals with dementia with others and should be promoted for individuals with mild to moderate dementia.

Death after Birth Asphyxia in the Cooling Era.

In asphyxiated newborn infants treated with hypothermia, 31 of 50 (62%) deaths occurred in unstable infants electively extubated before completing hypothermia treatment. Later deaths occurred after consultation with palliative care (13/19) or clinical ethics (6/19) services, suggesting these decisions were challenging and required support, particularly if nutrition and hydration were withdrawn (n = 4).

Ethical Challenges Arising in the COVID-19 Pandemic: An Overview from the Association of Bioethics Program Directors (ABPD) Task Force.

The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing policies for pandemics differ by institution, health system, and applicable law. Most seem to agree that a patient's ability to benefit from treatment and to survive are first-order considerations. However, there is debate about what clinical measures should be used to make that determination and about other factors that might be ethically appropriate to consider. In this paper, we discuss resource allocation and several related ethical challenges to the healthcare system and society, including how to define benefit, how to handle informed consent, the special needs of pediatric patients, how to engage communities in these difficult decisions, and how to mitigate concerns of discrimination and the effects of structural inequities.

"He's Back so I'm Not Alone": The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson's Disease.

Deep brain stimulation (DBS) for Parkinson's disease successfully alleviates motor symptoms, but unanticipated changes in personality, self, and relationships can occur. Little is known about how these nonmotor outcomes affect patients and families. We prospectively examined the experience and meaning of DBS-related changes in personality and self for patients and caregivers. In-depth, semi-structured interviews were conducted with 22 participants (11 patient-caregiver dyads) before and 9 months after DBS and analyzed using thematic analysis. We identified three themes present prior to DBS that reflected a time of anticipation, while three themes present after DBS reflected a process of adjustment. Participants noted both positive and negative personality changes, with some, but not all, attributing them to the stimulation. The risk of stimulation-related personality change should be weighed against the procedure's motor benefits and considered in the context of disease- and medication-related personality changes. Clinical implications including perioperative education and follow-up management are discussed.

Enriching the concept of vulnerability in research ethics: An integrative and functional account.

The concept of vulnerability is widely used in research ethics to signal attention to participants who require special protections in research. However, this concept is vague and under-theorized. There is also growing concern that the dominant categorical approach to vulnerability (as exemplified by research ethics regulations and guidelines delineating vulnerable groups) is ethically problematic because of its assumptions about groups of people and is, in fact, not very guiding. An agreed-upon strategy is to move from categorical towards analytical approaches (focused on analyzing types and sources of vulnerability) to vulnerability. Beyond this agreement, however, scholars have been advancing competing accounts of vulnerability without consensus about its appropriate operationalization in research ethics. Based on previous debates, we propose that a comprehensive account of vulnerability for research ethics must include four components: definition, normative justifications, application, and implications. Concluding that no existing accounts integrate these components in a functional (i.e., practically applicable) manner, we propose an integrative and functional account of vulnerability inspired by pragmatist theory and enriched by bioethics literature. Using an example of research on deep brain stimulation for treatment-resistant depression, we illustrate how the integrative-functional account can guide the analysis of vulnerability in research within a pragmatist, evidence-based approach to research ethics. While ultimately there are concerns to be addressed in existing research ethics guidelines on vulnerability, the integrative-functional account can serve as an analytic tool to help researchers, research ethics boards, and other relevant actors fill in the gaps in the current landscape of research ethics governance.

Addiction and Voluntariness: Five "Challenges" to Address in Moving the Discussion Forward.

The question as to whether people with an addiction have control (and to what extent) over their addiction, and voluntarily decide to use substances is an ongoing source of controversy in the context of research on addiction, health policy and clinical practice. We describe and discuss a set of five challenges for further research into voluntariness (definition[s], measurement and study tools, first person perspectives, contextual understandings, and connections to broader frameworks) based on our own research experiences and those of others.

Healthcare uses of artificial intelligence: Challenges and opportunities for growth.

Forms of Artificial Intelligence (AI), like deep learning algorithms and neural networks, are being intensely explored for novel healthcare applications in areas such as imaging and diagnoses, risk analysis, lifestyle management and monitoring, health information management, and virtual health assistance. Expected benefits in these areas are wide-ranging and include increased speed in imaging, greater insight into predictive screening, and decreased healthcare costs and inefficiency. However, AI-based clinical tools also create a host of situations wherein commonly-held values and ethical principles may be challenged. In this short column, we highlight three potentially problematic aspects of AI use in healthcare: (1) dynamic information and consent, (2) transparency and ownership, and (3) privacy and discrimination. We discuss their impact on patient/client, clinician, and health institution values and suggest ways to tackle this impact. We propose that AI-related ethical challenges may represent an opportunity for growth in organizations.