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ObjectivesIn the province of Quebec, Canada, interdisciplinary support groups (ISGs) are mandated to support those who are involved in the clinical, administrative, legal and ethical aspects of medical assistance in dying (MAiD). This article presents the results of a mixed-method, multi-phase study carried out in 2021 on ISGs with the aim to describe current ISG practices, critically analyze them and make recommendations on promising practices for provincial implementation.MethodSemi-structured interviews (42) and focus groups (7) with coordinators of 24 ISGs were used to identify promising practices and confirm their utility with participants.ResultsWe have distributed the ISGs along what we coined an “ISG continuum.” Between teams’ accountability (decentralization) and ISGs’ assumption of responsibility for MAiD requests (centralization), a middle ground approach, focused on the value of support, should be favored.ConclusionThe structuring of ISGs and their practices is intimately linked to their values. Harmonization of ISGs and their practices, while considering their specific values and contexts, can contribute to the equity and quality of services intended for those who request MAiD and those who support them.

Abstract 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.

Background Transition from paediatric to adult care is challenging for youths with a chronic condition. Most transition programmes place high value in autonomy and independence. We undertook a qualitative study to: (1) identify the needs and aspirations of youths and (2) better understand the well-being and flourishing of youths. Methods Semi-structured interviews were conducted with youths, parents of youths and healthcare professionals recruited from four clinics. Thematic analysis focused on: (1) perceptions of transition; (2) key aspects of human flourishing during transition; and (3) salient concerns with respect to the transition and dimensions of human flourishing. Results 54 interviews were conducted. Perceptions of transition clustered around: (1) apprehension about adult care; (2) lack of clarity about the transition process; (3) emotional attachment to paediatric healthcare professionals; (4) the significance of the coinciding transition into adulthood. Fourteen salient concerns (e.g., Knowledge and information about the transition, Parental involvement in healthcare) were identified with corresponding recommendations. Salient concerns related to important dimensions of human flourishing (e.g., environmental mastery, autonomy). Discussion and conclusion The flourishing of youths is affected by suboptimal transition practices. We discuss the implications of our findings for environmental mastery, contextual autonomy, and the holistic and humanistic aspects of transition.

BackgroundOwing to their low prevalence, rare diseases are poorly addressed in the scientific literature and clinical practice guidelines. Thus, health care workers are inadequately equipped to provide timely diagnoses, appropriate treatment, and support for these poorly understood conditions. These clinical tribulations are experienced as moral challenges by patients, jeopardizing their life trajectories, dreams, and aspirations. ObjectiveThis paper presents an ethical action plan for rare disease care and the process underlying its development. MethodsThis action plan was designed through an ethical inquiry conducted by the Ethics and Rare Diseases Working Group, which included 3 patient partners, 2 clinician researchers, and 1 representative from Québec’s rare disease association. ResultsThe plan is structured into 4 components. Component A presents the key moral challenges encountered by patients, which are the lack of knowledge on rare diseases among health care workers, the problematic attitudes that it sometimes elicits, and the distress and powerlessness experienced by patients. Component B emphasizes a vision for patient partnership in rare disease care characterized by open-mindedness, empathy, respect, and support of patient autonomy from health care workers. Component C outlines 2 courses of action prompted by this vision: raising awareness among health care workers and empowering patients to better navigate their care. Component D compares several interventions that could help integrate these 2 courses of action in rare disease care. ConclusionsOverall, this action plan represents a toolbox that provides a review of multiple possible interventions for policy makers, hospital managers, practitioners, researchers, and patient associations to critically reflect on key moral challenges experienced by patients with rare diseases and ways to mitigate them. This paper also prompts reflection on the values underlying rare disease care, patient experiences, and health care workers’ beliefs and behaviors. Health care workers and patients were the primary beneficiaries of this action plan.

Abstract 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., N Vignettes = 256) in Germany (N Respondents = 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.

IntroductionTransition from pediatric to adult healthcare is a multifaceted and consequential process with important health implications for youth. Although research on transition has grown significantly, research on transition for patients living with an inborn error of immunity (IEI) is scarce. We undertook a qualitative study to better understand the perspectives of youths and parents in an outpatient immunology clinic.MethdosSemi-structured interviews were conducted with 9 youths, 6 parents and 5 clinicians, all recruited from the same clinic. All youths recently transferred to adult care with or without an established diagnosis of IEI. Interviews were transcribed verbatim and thematic analysis was conducted. Two sets of themes were generated. The first set captured the positive and negative aspects experienced during transition, as well as recommendations to facilitate the process. The second set focused on key topics discussed in the interviews that were merged into overarching themes.ResultsPerspectives of participants were clustered into 6 overarching themes: (1) lack of knowledge about IEIs; (2) scattered transitions; (3) changing healthcare teams; (4) approaching an unknown environment; (5) transitioning to adulthood; (6) assuming responsibility for the management of the condition. Overall, the challenges encountered with respect to these themes had profound clinical and humanistic implications for patients such as generating significant distress.DiscussionWe discuss the unique challenges of the youths in our study in comparison to common problems reported by youths with chronic illness in the broader transition literature (for example: the change of healthcare team, the lack of information about the transition process and navigating the adult care system, growth towards self-management and the co-occurring developmental transition to adulthood). There is an urgency to attend to the specific problems created by the rarity of IEIs and related lack of knowledge about them as well as the need for multidisciplinary cross-clinic care during transition and beyond.

ObjectiveDeep brain stimulation (DBS) and whether it alters patient personality is a much-debated topic within academic literature, yet rarely explored with those directly involved. This study qualitatively examined how DBS for treatment-resistant depression impacts patient personality, self-concept, and relationships from the perspectives of both patients and caregivers.MethodsA prospective qualitative design was used. Eleven participants were included (six patients, five caregivers). Patients were enrolled in a clinical trial of DBS of the bed nucleus of the stria terminalis. Semi-structured interviews were conducted with participants before DBS-implantation and 9-months after stimulation-initiation. The 21 interviews were thematically analysed.ResultsThree primary themes were identified: (a) impact of mental illness and treatment on self-concept; (b) device acceptability and usability, and (c) relationships and connection. Severe refractory depression had profoundly impacted who patients were, how they viewed themselves, and the quality and functioning of their relationships. Patients who benefited from DBS felt reconnected with their premorbid self, yet still far from their ideal self. While reductions in depression were broadly beneficial for relationships, the process of adjusting relationship dynamics created new challenges. All patients reported recharging difficulties and challenges adapting to the device.ConclusionsTherapeutic response to DBS is a gradual and complex process that involves an evolving self-concept, adjusting relationship dynamics, and growing connection between body and device. This is the first study to provide in-depth insight into the lived experience of DBS for treatment-resistant depression. Patient and caregiver narrative accounts should be routinely collected to guide more person-centred DBS clinical interventions.

IntroductionMoral judgment is of critical importance in the work context because of its implicit or explicit omnipresence in a wide range of work-place practices. The moral aspects of actual behaviors, intentions, and consequences represent areas of deep preoccupation, as exemplified in current corporate social responsibility programs, yet there remain ongoing debates on the best understanding of how such aspects of morality (behaviors, intentions, and consequences) interact. The ADC Model of moral judgment integrates the theoretical insights of three major moral theories (virtue ethics, deontology, and consequentialism) into a single model, which explains how moral judgment occurs in parallel evaluation processes of three different components: the character of a person (Agent-component); their actions (Deed-component); and the consequences brought about in the situation (Consequences-component). The model offers the possibility of overcoming difficulties encountered by single or dual-component theories.MethodsWe designed a 2 × 2 × 2-between-subjects design vignette experiment with a Germany-wide sample of employed respondents (N = 1,349) to test this model.ResultsResults showed that the Deed-component affects willingness to cooperate in the work context, which is mediated via moral judgments. These effects also varied depending on the levels of the Agent- and Consequences-component.DiscussionThereby, the results exemplify the usefulness of the ADC Model in the work context by showing how the distinct components of morality affect moral judgment.

Introduction. Prognosis is an essential component of informed consent for medical decision making. Research shows that physicians display discrepancies in their prognostication, leading to variable, inaccurate, optimistic, or pessimistic prognosis. Factors driving these discrepancies and the supporting evidence have not been reviewed systematically. Methods. We undertook a scoping review to explore the literature on the factors leading to discrepancies in medical prognosis. We searched Medline (Ovid) and Embase (Ovid) databases for peer-reviewed articles from 1970 to 2017. We included articles that discussed prognosis variation or discrepancy and where factors influencing prognosis were evaluated. We extracted data outlining the participants, methodology, and prognosis discrepancy information and measured factors influencing prognosis. Results. Of 4,723 articles, 73 were included in the final analysis. There was significant variability in research methodologies. Most articles showed that physicians were pessimistic regarding patient outcomes, particularly in early trainees and acute care specialties. Accuracy rates were similar across all time periods. Factors influencing prognosis were clustered in 4 categories: patient-related factors (such as age, gender, race, diagnosis), physician-related factors (such as age, race, gender, specialty, training and experience, attitudes and values), clinical situation-related factors (such as physician-patient relationship, patient location, and clinical context), and environmental-related factors (such as country or hospital size). Discussion. Obtaining accurate prognostic information is one of the highest priorities for seriously ill patients. The literature shows trends toward pessimism, especially in early trainees and acute care specialties. While some factors may prove difficult to change, the physician’s personality and psychology influence prognosis accuracy and could be tackled using debiasing strategies. Exposure to long-term patient outcomes and a multidisciplinary practice setting are environmental debiasing strategies that may warrant further research. Highlights Literature on discrepancies in physician’s prognostication is heterogeneous and sparse. Literature shows that physicians are mostly pessimistic regarding patient outcomes. Literature shows that a physician’s personality and psychology influence prognostic accuracy and could be improved with evidence-based debiasing strategies. Medical specialty strongly influences prognosis, with specialties exposed to acutely ill patients being more pessimistic, whereas specialties following patients longitudinally being more optimistic. Physicians early in their training were more pessimist than more experienced physicians.

Context: Clinicians use brain magnetic resonance imaging (MRI) to discuss neurodevelopmental prognosis with parents of neonates with hypoxic-ischemic encephalopathy (HIE) treated with therapeutic hypothermia (TH). Purpose: To investigate how clinicians and parents discuss these MRI results in the context of HIE and TH and how these discussions could be facilitated and more meaningful for parents. Procedures: Mixed-methods surveys with open-ended and closed-ended questions were completed by two independent groups. (1) Clinicians responded to clinical vignettes of neonates with HIE treated with TH with various types of clinical features, evolution and extent of brain injury and questions about how they discuss brain MRI results in this context. (2) Parents of children with HIE treated with TH responded to questions about the discussion of MRI that they had while still in the neonatal intensive care unit and were asked to place it in perspective with the outcomes of their child when he/she reached at least 2 years of age. Open-ended responses were analyzed using a thematic analysis approach. Closed-ended responses are presented descriptively. Results: Clinicians reported uncertainty, lack of confidence, and limitations when discussing brain MRI results in the context of HIE and TH. Brain MRI results were “usually” (53%) used in the prognostication discussion. When dealing with day-2 brain MRIs performed during TH, most clinicians (40%) assumed that the results of these early MRIs were only “sometimes” accurate and only used them “sometimes” (33%) to discuss prognosis; a majority of them (66%) would “always” repeat imaging at a later time-point to discuss prognosis. Parents also struggled with this uncertainty, but did not discuss limitations of MRI as often. Parents raised the importance of the setting where the discussion took place and the importance to inform them as quickly as possible. Clinicians identified strategies to improve these discussions, including interdisciplinary approach, formal training, and standardized approach to report brain MRI. Parents highlighted the importance of communication skills, the stress, the hope surrounding their situation, and the need to receive answers as soon as possible. The importance of showing the pictures or making representative drawing of the injury, but also highlighting the not-injured brain, was also highlighted by parents. Conclusions: Discussing brain MRI results for neonates with HIE treated with TH are challenging tasks for clinicians and daunting moments for parents.

Over the last two decades, researchers have promised “neuroprosthetics” for use in physical rehabilitation and to treat patients with paralysis. Fulfilling this promise is not merely a technical challenge but is accompanied by consequential practical, ethical, and social implications that warrant sociological investigation and careful deliberation. In response, this paper explores how rehabilitation professionals evaluate the development and application of BCIs. It thereby also asks how the BCIs come to be seen as desirable or not, and implicitly, what types of persons, rights, and responsibilities are assumed in this discourse. To this end, we conducted a web-based survey (N=135) and follow-up interviews (N=15) with Canadian professionals in physical therapy, occupational therapy, and speech-language pathology. We find that rehabilitation professionals, like other publics, express hope and enthusiasm regarding the use of BCIs for assistive purposes. They envision BCI devices as powerful means to reintegrate patients and disabled people into social life but also express practical and ethical reservations about the technology, positioning themselves as uniquely qualified to inform responsible BCI design and implementation. These results further illustrate the nascent “co-production” of neural technologies and social order. More immediately, they also pose a serious challenge for implementing frameworks of responsible innovation; merely prescribing more inclusive technology development may not counteract technocratic processes and widely held ableist views about the need to augment certain bodies using technology.

Abstract Across societies, cultures, and political ideologies, autonomy is a deeply valued attribute for both flourishing individuals and communities. However, it is also the object of different visions, including among those considering autonomy a highly valued individual ability, and those emphasizing its relational nature but its sometimes-questionable value. A pragmatist orientation suggests that the concept of autonomy should be further specified (i.e., instrumentalized) beyond theory in terms of its real-world implications and usability for moral agents. Accordingly, this latter orientation leads us to present autonomy as an ability; and then to unpack it as a broader than usual composite ability constituted of the component-abilities of voluntariness, self-control, information, deliberation, authenticity, and enactment. Given that particular abilities of an agent can only be exercised in a given set of circumstances (i.e., within a situation), including relationships as well as other important contextual characteristics, the exercise of one’s autonomy is inherently contextual and should be understood as being transactional in nature. This programmatic paper presents a situated account of autonomy inspired by Dewey’s pragmatism and instrumentalism against the backdrop of more individual and relational accounts of autonomy. Using examples from health ethics, the paper then demonstrates how this thinking supports a strategy of synergetic enrichment of the concept of autonomy by which experiential and empirical knowledge about autonomy and the exercise of autonomy enriches our understanding of some of its component-abilities and thus promises to make agents more autonomous.

Research ethics extends beyond obtaining initial approval from research ethics boards. The previously established person-oriented research ethics framework provides guidelines for understanding ongoing ethics throughout the tasks of a research project, in a variety of research contexts. It focuses primarily on the relational and experiential aspects of research ethics, organized around five guideposts: (1) focus on researcher-participant relationships; (2) respect for holistic personhood; (3) acknowledgment of lived world; (4) individualization; and (5) empowerment in decision-making. Given the widespread impact of dementia and the ethical challenges dementia research presents, conducting meaningful, ethical research is of high importance. This review explores this person-oriented framework in the context of dementia by examining existing literature on ethics practices in dementia research. We use a critical interpretive literature review to examine publications from 2013 to 2017 for content related to the five guideposts of person-oriented research ethics. While there is much literature addressing the relational and experiential aspects of research ethics, there is a lack of unanimous conclusions and concrete suggestions for implementation. We compiled practical recommendations from the literature, highlighting tensions and suggesting furthering evidence-based ethics research fieldwork to construct an accessible, easy-to-use set of guidelines for researchers that will assist in putting person-oriented research ethics into practice in dementia research.

Adolescents with chronic health conditions transitioning from pediatric to adult healthcare services experience a wide array of difficulties. In response, transition programs have been developed. Transition programs commonly embody goals such as autonomy and independence. However, these may not be highly valued by young adults and their families. To assess critically the current evaluation of goals and outcomes of these programs, the concept of human flourishing offers a promising alternative to concepts of quality of life. It grants that objectives pursued (e.g., health, social integration) stand to be interpreted by the agent as being valuable and coherent with their meaning-making narrative. Flourishing is also an indicator of physical and psychological health.The purpose of this paper is to review the literature on transition care to assess whether and how flourishing is addressed in the evaluation of transition programs. We carried out systematic sampling of the literature and applied a qualitative thematic content extraction strategy. Based on Ryff and Singer's integrative concept of flourishing, we examined whether six key dimensions of flourishing (self-acceptance, positive relations with others, personal growth, purpose in life, environmental mastery, and autonomy) were present in current evaluation practices. We reviewed 105 relevant papers and found that (1) 44 out of 105 articles evaluated one or more dimensions of human flourishing; (2) there was considerable variation in the assessment of these dimensions, which was sometimes minimalistic; (3) no single evaluation was based on an explicit measure of human flourishing; (4) autonomy and positive relationships were the dimensions most investigated; (5) the evaluation of transition care mostly emphasized medical aspects of health. Considering its lifelong impact, it is crucial to better understand how transition care can support the flourishing of young adults. Open-ended views on flourishing based on participatory and collaborative research designs should be explored in this context.

Background: How “success” is defined in clinical trials of deep brain stimulation (DBS) for refractory psychiatric conditions has come into question. Standard quantitative psychopathology measures are unable to capture all changes experienced by patients and may not reflect subjective beliefs about the benefit derived. The decision to undergo DBS for treatment-resistant depression (TRD) is often made in the context of high desperation and hopelessness that can challenge the informed consent process. Partners and family can observe important changes in DBS patients and play a key role in the recovery process. Their perspectives, however, have not been investigated in research to-date. The aim of this study was to qualitatively examine patient and caregivers’ understanding of DBS for TRD, their expectations of life with DBS, and how these compare with actual experiences and outcomes.Methods: A prospective qualitative design was adopted. Semi-structured interviews were conducted with participants (six patients, five caregivers) before DBS-implantation and 9-months after stimulation initiation. All patients were enrolled in a clinical trial of DBS of the bed nucleus of the stria terminalis. Interviews were thematically analyzed with data saturation achieved at both timepoints.Results: Two primary themes identified were: (1) anticipated vs. actual outcomes, and (2) trial decision-making and knowledge. The decision to undergo DBS was driven by the intolerability of life with severe depression coupled with the exhaustion of all available treatment options. Participants had greater awareness of surgical risks compared with stimulation-related risks. With DBS, patients described cognitive, emotional, behavioral and physical experiences associated with the stimulation, some of which were unexpected. Participants felt life with DBS was like “a roller coaster ride”—with positive, yet unsustained, mood states experienced. Many were surprised by the lengthy process of establishing optimum stimulation settings and felt the intervention was still a “work in progress.”Conclusion: These findings support existing recommendations for iterative informed consent procedures in clinical trials involving long-term implantation of neurotechnology. These rich and descriptive findings hold value for researchers, clinicians, and individuals and families considering DBS. Narrative accounts capture patient and family needs and should routinely be collected to guide patient-centered approaches to DBS interventions.

Participatory research can change the view of children from research subjects to active partners. As active partners, children can be recognized as agents who can contribute to different steps of the research process. However, “participatory research” is an umbrella term that covers both the collection of data with children and children’s participation in making decisions related to the research process. As such, it raises particular challenges for researchers. Based on a pragmatic ethics approach, we were inspired by the realist review methodology to synthesize the current literature, identify different strategies used to engage children aged 12 and below in participatory research, and analyze how they affect children’s active participation and the ethical aspects related to each. Fifty-seven articles were retained for inclusion in the review. A variety of strategies were used to involve children in the research process, including discussion groups, training/capacity-building sessions, photography and filming, children as data collectors and questionnaires. The most prevalent ethical considerations identified were related to power dynamics and strategies to facilitate children’s expression and foster the authenticity of children’s voices. Researchers should address these ethical considerations to actively involve children within the research process and prevent tokenistic participation. Active inclusion of children in research could include co-identifying with them how they want to be involved in knowledge production (if they want to) from the beginning of a project.

Suicide occurs in people of all ages and backgrounds, which negatively affects families, communities, and the health care providers (HCPs) who care for them. The objective of this study was to better understand HCPs' perspectives of everyday ethical issues related to caring for suicidal patients, and their perceived needs for training and/or support to address these issues. We conducted a mixed methods survey among HCPs working in mental health in Québec, Canada. Survey questions addressed their perspectives and experiences of everyday ethical challenges they encounter in their practice with people who are suicidal, and their perceived needs for training and/or support therein. 477 HCPs completed the survey. Most participants mentioned encountering ethical issues when caring for people who are suicidal. The challenges HCPs encounter in their practice with people who are suicidal are numerous, including issues related to maintaining privacy, confidentiality, freedom and the therapeutic relationship. The lack of time, resources and professional support to address these issues was emphasized. Most HCPs reported that the training or education they have received does not allow them to address everyday ethical issues related to suicide care. In sum, there is a clear reported need for better training and support for HCPs who are offering care to people who are suicidal in relation to everyday ethical issues they encounter. Implications for practice include providing greater access to training, including access to specialists in ethics to address specific issues. This additional support could alleviate morally distressing situations for HCPs.

Do we have a genuinely Canadian bioethics – and not only a practice of bioethics in Canada? This question, and this paper, are about the connection between bioethics and the actual healthcare, research, and public health experiences of Canadians. In addressing it, I am inspired by the philosophy of pragmatism that stresses the importance of everyday experience as a starting point for ethics, and of human flourishing as a goal for ethics. Through this lens, an ideal Canadian bioethics is one that is rooted in the lived experiences of Canadians; it reflects the ideal of flourishing projected by Canadian individuals, including their views on their political communities. However, it is unclear if a full-fledged Canadian bioethics has taken shape given increasingly uniform scholarship worldwide that sets expectations about the kinds of moral problems worth investigating and the kinds of solutions to be adopted. In the spirit of thinking about this question, I discuss aspects of Canadian society that could shape the development of a Canadian bioethics: (a) the existence of competing Canadian political narratives, (b) the distinctiveness of Canadian healthcare systems and healthcare experiences, (c) the commitment of Canadians to certain values and aspirations, (d) the institutional and procedural aspects of the Canadian public sphere, (e) the challenges of increasingly uniform scholarship across geographic and national contexts, and (f) the practical obstacles to developing a Canadian bioethics. These challenges that Canadian bioethics faces are likely relevant internationally for all contexts in which socially shaped moral problems are discussed and solutions envisioned.

Context: In most jurisdictions where medical-aid-in-dying (MAiD) is available, this option is reserved for individuals suffering from incurable physical conditions. Currently, in Canada, people who have a mental illness are legally excluded from accessing MAiD. Methods: We developed a questionnaire for mental health care providers to better understand their perspectives related to ethical issues in relation to MAiD in the context of severe and persistent suffering caused by mental illness. We used a mixed-methods survey approach, using a concurrent embedded model with both closed and open-ended questions. Findings: 477 healthcare providers from the province of Québec (Canada) completed the questionnaire. One third of the sample (34.4%) were nurses, one quarter psychologists (24.3%) and one quarter psycho-educators (24%). Nearly half of the respondents (48.4%) considered that people with a severe mental illness should be granted the right to opt for MAiD as a way to end their suffering. Respondents were more likely to feel comfortable listening to the person and participating in discussions related to MAiD for a mental illness than offering care or the means for the person to access MAiD. Most (86.2%) reported that they had not received adequate/sufficient training, education or preparation in order to address ethical questions surrounding MAiD. Conclusions: The findings highlight how extending MAiD to people with a mental illness would affect daily practices for mental healthcare providers who work directly with people who may request MAiD. The survey results also reinforce the need for adequate training and professional education in this complex area of care.

Abstract Background Some university students consume pharmaceutical stimulants without a medical prescription with the goal of improving their academic performance. The prevalence of this practice has been well documented in the US, but less so in other countries. The potential harms of using prescription stimulants require a better understanding of the prevalence of this practice within Australian universities. Methods An internet survey of 1136 Australian students was conducted in 2015 in three large Australian universities. Students were asked about their personal use of prescription stimulants, attitudes and experiences with prescription stimulants. They were also asked about their use of caffeine, energy drinks and illicit drugs to enhance their academic performance. Results Lifetime self-reported use of stimulant medication to improve academic performance was 6.5, and 4.4% in the past year. Students were far more likely to report using coffee and energy drinks (41.4 and 23.6% respectively, lifetime use) than prescription stimulants to help them study and complete university assessments. Non-medical use of prescription stimulants was strongly associated with a history of illicit drug use. Conclusion The prevalence of nonmedical prescription stimulant use to improve academic performance is low among university students in Australia, especially when compared with their use of coffee and energy drinks.

Abstract Background Brain-Computer Interface (BCI) is a set of technologies that are of increasing interest to researchers. BCI has been proposed as assistive technology for individuals who are non-communicative or paralyzed, such as those with amyotrophic lateral sclerosis or spinal cord injury. The technology has also been suggested for enhancement and entertainment uses, and there are companies currently marketing BCI devices for those purposes (e.g., gaming) as well as health-related purposes (e.g., communication). The unprecedented direct connection created by BCI between human brains and computer hardware raises various ethical, social, and legal challenges that merit further examination and discussion. Methods To identify and characterize the key issues associated with BCI use, we performed a scoping review of biomedical ethics literature, analyzing the ethics concerns cited across multiple disciplines, including philosophy and medicine. Results Based on this investigation, we report that BCI research and its potential translation to therapeutic intervention generate significant ethical, legal, and social concerns, notably with regards to personhood, stigma, autonomy, privacy, research ethics, safety, responsibility, and justice. Our review of the literature determined, furthermore, that while these issues have been enumerated extensively, few concrete recommendations have been expressed. Conclusions We conclude that future research should focus on remedying a lack of practical solutions to the ethical challenges of BCI, alongside the collection of empirical data on the perspectives of the public, BCI users, and BCI researchers.

Background: Fetal alcohol spectrum disorder (FASD), a complex diagnosis that includes a wide range of neurodevelopmental disabilities, results from exposure to alcohol in the womb. FASD remains poorly understood by Canadians, which could contribute to reported stigma faced by both people with FASD and women who drink alcohol while pregnant. Methods: To better understand how information about FASD is presented in the public sphere, we conducted content analysis of 286 articles from ten major English-language Canadian newspapers (2002-2015). We used inductive coding to derive a coding guide from the data, and then iteratively applied identified codes back onto the sample, checking inter-coder reliability. Results: We identified six major themes related to clinical and scientific media content: 1) prevalence of FASD and of women’s alcohol consumption; 2) research related to FASD; 3) diagnosis of FASD; 4) treatment of FASD and maternal substance abuse; 5) primary disabilities associated with FASD; and 6) effects of alcohol exposure during pregnancy. Discussion: Across these six themes, we discuss three instances of ethically consequential exaggeration and misrepresentation: 1) exaggeration about FASD rates in Indigenous communities; 2) contradiction between articles about the effects of prenatal alcohol exposure; and 3) scientifically accurate information that neglects the social context of alcohol use and abuse by women. Respectively, these representations could lead to harmful stereotyped beliefs about Indigenous peoples, might generate confusion about healthy choices during pregnancy, and may unhelpfully inflame debates about sensitive issues surrounding women’s choices.

Current paradigms in Western medicine often fail to differentiate clearly between consciousness, responsiveness and personhood. The growing number of individuals who exist with sustainable cardiopulmonary systems but who are behaviorally unresponsive has prompted a cultural reconsideration of the relationship between the presence of consciousness and what it means to be a person. This article presents relevant clinical situations that exemplify the different modes in which personhood and consciousness can be associated and dissociated: disorders of consciousness, emergence from anesthesia, and neocortical death. We draw from these examples to call for a reflection on and possible revision of the dominant approach towards unresponsive persons to one in which care providers may work from the default assumption of the existence of an individual’s personhood as part of their therapeutic intervention. Behavior consistent with this assumption aligns with the principle of respect for persons in the face of the uncertainty created by the high rate of misdiagnosis of unconsciousness in unresponsive patients and is most consistent with a therapeutic approach to care considering evidence suggesting that attributing personhood may in fact evoke consciousness in these patients.

Moral evaluations occur quickly following heuristic-like intuitive processes without effortful deliberation. There are several competing explanations for this. The ADC-model predicts that moral judgment consists in concurrent evaluations of three different intuitive components: the character of a person (Agent-component, A); their actions (Deed-component, D); and the consequences brought about in the situation (Consequences-component, C). Thereby, it explains the intuitive appeal of precepts from three dominant moral theories (virtue ethics, deontology, and consequentialism), and flexible yet stable nature of moral judgment. Insistence on single-component explanations has led to many centuries of debate as to which moral precepts and theories best describe (or should guide) moral evaluation. This study consists of two large-scale experiments and provides a first empirical investigation of predictions yielded by the ADC model. We use vignettes describing different moral situations in which all components of the model are varied simultaneously. Experiment 1 (within-subject design) shows that positive descriptions of the A-, D-, and C-components of moral intuition lead to more positive moral judgments in a situation with low-stakes. Also, interaction effects between the components were discovered. Experiment 2 further investigates these results in a between-subject design. We found that the effects of the A-, D-, and C-components vary in strength in a high-stakes situation. Moreover, sex, age, education, and social status had no effects. However, preferences for precepts in certain moral theories (PPIMT) partially moderated the effects of the A- and C-component. Future research on moral intuitions should consider the simultaneous three-component constitution of moral judgment.

[This corrects the article DOI: 10.1371/journal.pone.0204631.].

Free will has been the object of debate in the context of addiction given that addiction could compromise an individual's ability to choose freely between alternative courses of action. Proponents of the brain-disease model of addiction have argued that a neuroscience perspective on addiction reduces the attribution of free will because it relocates the cause of the disorder to the brain rather than to the person, thereby diminishing the blame attributed to the person with an addiction. Others have worried that such displacement of free will attribution would make the person with a drug addiction less responsible. Using the paradigmatic literature on the seductive allure of neuroscience explanations, we tested whether neuroscience information diminishes attributions of free will in the context of addiction and whether respondent characteristics influence these attributions and modulate the effect of neuroscience information. We performed a large-scale, web-based experiment with 2,378 German participants to explore how attributions of free will in the context of addiction to either alcohol or cocaine are affected by: (1) a text with a neurobiological explanation of addiction, (2) a neuroimage showing effects of addiction on the brain, and (3) a combination of a text and a neuroimage, in comparison to a control group that received no information. Belief in free will was measured using the FAD-Plus scale and was, subsequent to factor analysis, separated into two factors: responsibility and volition. The investigated respondent characteristics included gender, age, education, self-reported knowledge of neuroscience, substance-use disorder (SUD), and having a friend with SUD. We found that attributions of volition (in the cocaine-subsample) were reduced in the text and neuroimage-treatment compared to the control group. However, respondent characteristics such as education and self-reported knowledge of neuroscience were associated with lower attributions of responsibility for both substances, and education was associated with lower attribution of volition for the alcohol sub-sample. Interaction analyses showed that knowledge of neuroscience was found to generally decrease attribution of responsibility. Further research on attribution of free will should consider the effects of context and respondent characteristics, which appeared surprisingly larger than those induced by experimental treatments.

The ability to choose freely is captured under the umbrella concept of “free will,” which designates an ability that plays a crucial role in most understandings of autonomy and responsibility and, thus, bears significance for moral practice and moral theory. Some claim that neuroscience research challenges the existence of free will/voluntary action while some who adopt stronger eliminativist stances have gone as far as describing free will as an illusion. Contrary to that, those relying on realist stances have restated the foundational value and role of folk psychological concepts of voluntary action and free will in, for example, the domains of ethics and law. An emerging body of research in cognitive science and social psychology has generated results suggesting that the phenomena captured by the concepts describing free will and voluntary action are dynamic and responsive to priming and framing effects. We propose that this body of research suggests the existence of dynamic and consequential properties of free will better captured following pragmatist theory and instrumentalist epistemology. This contrasts the simpler static concept of free will and the related metaphysics that was at the basis of earlier debates and structured around the poles of realism and eliminativism. This paper contextualizes ontological and epistemological debates about free will, describes a scientifically-informed and instrumentalist account of the concept of free will and voluntary action consistent with recent research in cognitive science, and discusses its implications for research (e.g., theoretical assumptions of research paradigms, interdisciplinary research) and practice (e.g., impact on self-image and social behavior).

Enhancing cognitive performance with substances--especially prescription drugs--is a fiercely debated topic among scholars and in the media. The empirical basis for these discussions is limited, given that the actual nature of factors that influence the acceptability of and willingness to use cognitive enhancement substances remains unclear. In an online factorial survey, contextual and substance-specific characteristics of substances that improve academic performance were varied experimentally and presented to respondents. Students in four German universities rated their willingness to use and moral acceptance of different substances for cognitive enhancement. We found that the overall willingness to use performance enhancing substances is low. Most respondents considered the use of these substances as morally unacceptable. Situational influences such as peer pressure, policies concerning substance use, relative performance level of peers, but also characteristics of the substance, such as perceptions of substance safety, shape the willingness and acceptability of using a substance to enhance academic performance. Among the findings is evidence of a contagion effect meaning that the willingness was higher when the respondents have more CE drug users in their social network. We also found deterrence effects from strong side effects of using the substance, as well as from policy regulations and sanctions. Regulations might activate social norms against usage and sanctions can be seen as costly to users. Moreover, enhancement substances seem to be most tempting to low performers to catch up with others compared to high performers. By identifying contextual factors and substance characteristics influencing the willingness and acceptability of cognitive enhancers, policy approaches could consider these insights to better manage the use of such substances.

Background. Although the clinical effectiveness of deep brain stimulation (DBS) in Parkinson's disease is established, there has been less examination of its social aspects. Methods and Results. Building on qualitative comments provided by healthcare providers, we present four different social and relational issues (need for social support, changes in relationships (with self and partner) and challenges with regards to occupation and the social system). We review the literature from multiple disciplines on each issue. We comment on their ethical implications and conclude by establishing the future prospects for research with the possible expansion of DBS for psychiatric indications. Conclusions. Our review demonstrates that there are varied social issues involved in DBS. These issues may have significant impacts on the perceived outcome of DBS by patients. Moreover, the fact that the social impact of DBS is still not well understood in emerging psychiatric indications presents an important area for future examination.