RESEARCH ACTIVITIES AND COLLABORATIONS
The Neuroethics research unit pursues research to address the spectrum of challenges in neurological and psychiatric care such as providing quality patient information, diminishing stigma, and promoting respectful healthcare services. Our research program aims at bridging these various challenges to identify practical solutions.
Research activities of the Neuroethics Research Unit are funded by grants, scholarships, fellowships, and private foundations. They cover a broad and evolving range of ethical and social issues associated with research, healthcare, public services and public policy as well as foundational issues in neuroethics. Several other studies have also expanded the scope of the Unit beyond the context of neuroscience and clinical neurology and psychiatry.
ETHICS OF NEUROSCIENCE RESEARCH / ETHICS IN CLINICAL NEUROSCIENCE / HEALTH POLICY AND PUBLIC UNDERSTANDING OF NEUROSCIENCE / THEORETICAL AND CRITICAL REFLECTIONS ON NEUROETHICS / OTHER PROJECTS / COMPLETED PROJECTS
ETHICS OF NEUROSCIENCE RESEARCHOutcome sought: More ethical research practices
Re-considering vulnerability in mental health research ethicsEric Racine, Emily Bell, Mary Ellen Macdonald, Gustavo Turecki, Dearbhail Bracken-RocheFunding: Canadian Institutes of Health ResearchAlthough a widely used term, vulnerability has been ascribed different definitions according to international research ethics policies. In some policies, vulnerability is mentioned largely with respect to justice and in other policies it is underscored by respect for persons. Sometimes, the concept has been described as a patient- or research participant-centered attribute without full consideration of how relational and contextual factors could compound or diminish vulnerability. The aim of this project is to critically re-reconsider the theoretical assumptions and practical implications of the concept of “vulnerability” in research ethics in the context of the introduction of novel research and clinical innovation in adult psychiatric care.
Neuroethics Excellence and Societal Innovation Core (NESIC)Judy Illes, Eric RacineFunding: NeuroDevNet, Network of Centres of Excellence (NCE)Nationally and internationally, there is limited ethics scholarship and outreach on the ethical issues associated with developmental neuroscience and neurodevelopmental disorders such as cerebral palsy, autism spectrum disorders, and fetal alcohol spectrum disorder. NeuroDevNet, a Canadian Network of Centres of Excellence includes a core program dedicated to examining these issues under the leadership of Drs. Illes (in Vancouver) and Racine (in Montréal).
INTERFACES: Intelligent Neuro-Technologies Restoring Functions of Action and Communication: an Evaluation StudyEric Racine, Sebastian Sattler, Stefanie Blain-Moraes in collaboration with Ralf J. Jox, Jan Christoph Bublitz, and David Rodríguez-AriasFunding: Canadian Institutes of Health Research and Fonds de recherche du Québec – Santé (in collaboration with NEURON-ERANET: NEURON)“INTERFACES” is an international research project on ethical, legal and social aspects (ELSA) of brain-computer interfaces (BCI). This neuro-technology has recently made groundbreaking progress and is about to enter real-world application in motor & communication assistance, neuropsychiatric treatment and neuro-enhancement. The project aims to (1) investigate the neglected perspectives of patients, their families, health care professionals, and the public, (2) evaluate the fundamental conceptual, ethical and legal questions associated with BCI applications and (3) utilize the resulting insights to offer orientation for medicine and society, thus following a translational research approach. Interview studies with neurological patients and their families who have experience with BCI studies, an international survey of health care professionals and an experimental vignette study of citizens on the public’s moral intuitions will serve to collect needed empirical data. These will feed into an ethico-legal analysis on agency, autonomy and responsibility, which will be supported by an expert group deliberation. In a final knowledge translation phase, the research results serve to construct video and audio podcasts informing the public about ELSA of BCI and to write a policy brief for decision-makers in society.
Modeling person-oriented research ethics for people with autismAriel Cascio, Jonathan Weiss, Eric RacineFunding: Kids Brain Health Network Core Award, the NeuroEthics Excellence and Societal Innovation CoreThe concept of person-centeredness has a long history in a range of healthcare settings through the practices of patient-centered or person-centered care. Person-centered care is holistic, individualized, respectful, and empowering (Morgan and Yoder 2012). This project applies these principles from clinical ethics to the research ethics process, specifically with respect to people with autism spectrum conditions (ASC). The first step in this project is the development and refinement of our novel framework of “person-oriented research ethics.” The second step is a review of literature and policy guidance that addresses inclusion of people with ASC in research which is investigating the applicability of person-oriented principles at all stages of the research process. The third step will be a task force deliberation process which will engage key stakeholders including researchers, community organizations, families, and people with ASC to provide critical feedback and develop a report of recommendations for best practices. This project will ultimately generate more ethical research practices by attending to the particular challenges, opportunities, and experiences people with ASC may face in the research process, leading to better and more valid scientific findings as well as fulfilling the disability rights movement’s call for inclusion, “nothing about us, without us.”
ETHICS IN CLINICAL NEUROSCIENCEOutcome sought: Ethics-informed care
Parkinson’s disease and patient-centred careNatalie Zizzo, Emily Bell, Anne-Louise Lafontaine, Eric RacineFunding: Canadian Institutes of Health ResearchPatient-centred care is a model of care that is responsive to patient preferences, needs and values. It is a model of care that has been endorsed for Parkinson’s populations. To provide effective patient-centred care to these populations, an understanding of how patients actually want to be involved in care is necessary. Through collaboration with a Montreal movement disorder clinic, we conducted surveys and interviews to improve understanding of how patients want to be involved in making decisions, the amount and types of information they want, their values in care, and their perspectives on the care they receive. Outcomes of this project are being used to inform future practice.
Everyday EthicsNatalie Zizzo, Emily Bell, Eric RacineNeuroethics, bioethics, and the media tend to focus on certain types of bioethical issues, which are sometimes referred to as “dramatic ethics”. We aim to re-focus on the ethical issues most pertinent to patients, healthcare providers, and researchers – the issues that arise regularly and have important moral dimensions that sometimes go unrecognized, or “everyday ethics”. Our goals were to characterize these everyday ethical issues using the existing literature on this topic, and inform the discussion using various normative frameworks, including pragmatist ethics, narrative ethics, virtue ethics, care ethics, feminist ethics, and clinical ethics. From this, we developed an integrative model of everyday ethics which has theoretical, methodological, practical and pedagogical implications which can shed light on everyday ethical issues in clinical practice and bioethics. We hope to bring greater attention to these sets of issues in academic bioethics.
HEALTH POLICY AND PUBLIC UNDERSTANDING OF NEUROSCIENCEOutcome sought: Neuroscience literacy and fair policies
Quebec network on suicide, mood disorders and related disorders (RQSHA)Gustavo Turecki G et al., including Eric Racine, Victoria SaigleFunding : Fonds de recherche du Québec – SantéEuthanasia and physician-assisted suicide/dying have been heavily discussed in the academic literature but discussion of ethical issues surrounding suicide in general are lacking. Death by suicide (i.e., the act of taking one’s life voluntarily or intentionally) raises a host of important ethical concerns distinct from those created by physician-assisted suicide (i.e., where physicians provide information or a means by which a patient can commit suicide). In collaboration with the RQSHA, our goals are to (1) identify the predominant themes and content of bioethical discourse present in academic literature on suicide and (2) then explore if further research opportunities could be identified.
Public Discourse about and Attitudes towards Neurodevelopmental Disabilities: FASDJohn Aspler, Eric RacineFetal alcohol spectrum disorder, a prevalent and stigmatizing condition caused by prenatal alcohol exposure, has many unexplored and poorly understood social dimensions. For example, there exist numerous myths about what kinds of people are affected by FASD (e.g., poor, indigenous), and what kinds of women have given birth to them (e.g., irresponsible, criminal). Given concerns about negative attitudes towards people with FASD, as well as women who drink while pregnant, we are undertaking a series of research projects with the overall aim of better understanding FASD as a social phenomenon so as to improve the lives of those affected. In collaboration with NeuroDevNet, our objectives are to 1) explore what is said about FASD in the Canadian print news media; 2) understand the perspectives of various stakeholders implicated in and by the news media with regard to FASD; and 3) provide guidance on how to improve future communication about FASD.
THEORETICAL AND CRITICAL REFLECTIONS ON NEUROETHICSOutcome sought: More comprehensive and effective moral theories, and responsive neuroethics
Pragmatism and the neuroscience revolution: Ethical and social implications of social neuroscience.Eric Racine et al.Funding: Social Sciences and Humanities Research Council of CanadaThere are mounting claims and expectations that neuroscience will transform ethics scholarship and practices as well as related social science disciplines. Building on historical writings informed by contemporary interdisciplinary ethics scholarship, and social science research, this project critically examines ethical and social issues arising in the development of neuroscience, in particular social neuroscience and its applications based on a pragmatic theoretical framework.
The ADC of Moral JudgmentVeljko Dubljevic, Eric Racine, et al.Moral judgment and decision-making tackle difficult situations involving conflicting ethical principles and social values. In order to define and test moral judgments, researchers have generated different hypothetical cases to evoke moral intuitions which would support or disprove conclusions stemming from competing moral theories. This project starts from the assumption that there are three kinds of moral intuitions stemming from three kinds of heuristic processes that simultaneously modulate moral judgments. They also form the basis of three distinct moral theories by substituting the global attribute of moral praiseworthiness/blameworthiness with the simpler attributes of virtue/vice of the agent (A), right/wrong deed (D) and good/bad consequences (C),which should be seen as testable sources of moral insight.
Empathy and ethical decision-making in organizations : Neuroethical perspectivesJoe T. MartineauFunding : Fonds de recherche du Québec – Société et cultureRecent neuroscience research has shed light on the phenomenon of empathy and the importance of emotions in ethical decision-making. For instance, openness and sensitivity to the emotions of others allow for a richer interpretation of complex situations. However, in the management and business ethics literature, the vast majority of studies on ethical decision-making are based on a cognitivist or rationalist perspective, and some argue that it is now time to further investigate the influence emotions in these processes. Consequently, our research aims to assess the influence of managers’ empathy on their decision-making and ethical reflection. Incorporating methods and research results from the fields of psychology, management science and neuroscience, our research specifically seeks to 1) identify if and how recent neuroscience research on empathy allows us to shed new light on ethical decision-making and reflection in organizations; 2) to study the link between managers’ level of empathy and their preferences for different ways of thinking and management practices; and 3) to examine the implications of empathy for the ethical management of organizations.
Through additional funding as well as research led by fellows and graduate students, other projects are pursued on topics such as the neuroscience of ethics, empathy in moral decision making, patient-centered care, free will, autonomy and patient preferences, everyday ethics, use of complementary and alternative medicine in neurological disorders and brain death.
Investigating psychosocial and ethical aspects of closed-loop technology in adults with type 1 diabetesRémi Rabasa-Lhoret, Eric Racine, Virginie Leduc, Ariane QuintalFunding: National Institutes of HealthResearch on the closed-loop technology, also called artificial pancreas, has progressed significantly over recent years, raising expectations of availability of this technology within the next 7-10 years. It is particularly important for the development of the closed-loop technology to understand and manage patient’s expectations and to understand the psychosocial implications of this technology. Understanding these implications is important to both appreciate the psychosocial aspects of the technology as well as the ethical issues associated with artificial pancreas usage. To our knowledge, no study has assessed if the psychosocial aspects differ between single-hormone and dual-hormone closed-loop strategies. As the IRCM hosts the only group developing both versions of the closed-loop system, we have the unique opportunity to approach this question. In addition, we will also study ethical aspects of closed-loop technology, a topic that was not addressed by other teams working in this field.
A qualitative study of caregiver and patient perspectives on ethical and social issues in deep brain stimulation for Parkinson’s diseaseEric Racine, Mary Pat McAndrews, Debra Mathews, Abbas Sadikot, Mary Ellen Macdonald, Emily Bell
Non-medical use of prescription stimulants by Australian university students: Attitudes, prevalence of, and motivations for useJayne Lucke, Sharlene Kaye, Bradley Partridge, Matthew Dunn, Wayne Hall, Michael Farrell, Eric Racine
Transformation of everyday psychopathology: From ancient nevrosis to contemporary anxiety and depressionsJohanne Colin, Marcelo Otero, Henri Dorvil, Eric Racine, Constantin Tranulis
Generating genius: A critical examination of how an Alzheimer’s drug has become a “cognitive enhancer”Lucie Wade, Cynthia Forlini, Eric Racine
The search for a cure for Fragile X Syndrome (FXS) and Autism Spectrum Disorders (ASD): A critical examination of messages in the mediaLucie Wade, Eric Racine
Examining discourses on brain deathAriane Daoust, Eric Racine
Experience and attitudes of healthcare professionals regarding ethics issues and end-of-life decision making in patients suffering from chronic disorders of consciousnessEric Racine, Ralf Jox, Katja Kuehlmeyer, Nicole Palmour, James Bernat, Richard Riopelle, Sam Shemie
A qualitative study of caregiver and patient perspectives on ethical and social issues in deep brain stimulation for Parkinson's disease and neuropsychiatric disordersEric Racine, Emily Bell, Lila Karpowicz, Mary Ellen MacDonald, Debra Mathews, Mary Pat McAndrews, Abbas Sadikot
Examining mental health provider and patient perspectives on ethical and social issues in the treatment of mental illness using deep brain stimulation (DBS)Emily Bell, Camillo Zacchia, Lila Karpowicz, Eric Racine
Neuroprognostication and end-of-life decision-making in pediatric intensive careIsabelle Chouinard, Michael Shevell, Eric Racine
Neuroethics of therapy and prevention of mental illness in early adolescence, childhood and adolescenceKohji Ishihara, Osamu Sakura, Tanno Yoshiyuki, Manabu Oi, Tamami Fukushi, Kevin Chien-Chang Wu, Eric Racine
The neuroethics of detecting, suppressing and enhancing memoryJennifer Chandler, Eric Racine
Evidence-based ethics in imaging genetics: Perspectives of research participantsNicole Palmour, Eric Racine
The ethics of neurosurgical innovation: What does the evidence say?Lila Karpowicz, Emily Bell, Mark Bernstein, Eric Racine Examining the epistemological foundation of neuroethics: A patient-centred pragmatist perspectiveEric Racine, Nicole Palmour and Amaryllis Ferrand
Specialty training and physician decision-making in the care of critically ill neurologic patientsEric Racine, Marie-Josée Dion, Judy Illes, Christine Wijman and Maarten Lansberg
Alzheimer’s disease (AD) and dietary supplements: Health claims, risks, and medical information in the top 25 websitesNicole Palmour, Brandy Vanderbyl, Emma Zimmerman, Serge Gauthier, Eric Racine
Examining stakeholder perspectives and public understanding of the ethical and social issues of cognitive enhancement using methylphenidateCynthia Forlini, Eric RacineThe regulatory frameworks for neurodevices and neuroimplantsGhislaine Mathieu
A multi-site qualitative study of ethical and social issues in functional neurosurgery using neurostimulationEric Racine, Emily Bell, Bruce Maxwell, Mary-Pat McAndrews, Abbas Sadikot
Examining ethical and social challenges in healthcare and research for adolescents and young adults with cerebral palsyDanaë Larivière-Bastien, Emily Bell, Michael Shevell, Annette Majnemer, Eric RacineBrain Matters 2: Ethics in the translation of neuroscience research to psychiatric and neurological careEric Racine, Rémi Quirion, Constance Ladouceur-DeslauriersTranslating social neuroscience to applied ethics: An epistemological and critical examination of the fieldEmma Zimmerman, Eric Racine