MRI PROGNOSTICATION STUDY INFORMATION
RESEARCH ACTIVITIES AND COLLABORATIONSThe 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.
PUBLIC AND INTERCULTURAL NEUROETHICSThis pillar examines ethical challenges in the public understanding of neurological and psychiatric conditions, the dissemination of neuroscience research, public engagement and the cultural representation of mental illness.
Generating genius: A critical examination of how an Alzheimer’s drug has become a “cognitive enhancer”1Lucie Wade, Cynthia Forlini, Eric RacineDonepezil, an acetylcholinesterase inhibitor, has been widely cited in media and bioethics literature as having the potential to improve the cognitive ability of healthy individuals. In both literatures, this claim has been widely supported by the results of a singly study (Yesavage et al. 2002) despite recent evidence suggesting that donepezil is not a proven cognitive enhancement agent. The factors contributing to this apparent discrepancy in the understanding of the effects of donepezil are unclear. We examine the nature of media and bioethics coverage of this landmark study, aiming to provide insight into how evidence from neurological research may be shaped within different discourses, potentially influencing important policy, ethics, and clinical practice decisions.
The search for a cure for Fragile X Syndrome (FXS) and Autism Spectrum Disorders (ASD): A critical examination of messages in the media4Lucie Wade, Eric RacineFXS is the most common form of inherited intellectual disability as well as the most frequent known genetic risk factor associated with ASD. Pharmaceuticals (e.g., mGluR5 inhibitors) are being tested in clinical trials as treatments for these neurodevelopmental disorders. This study aims to examine media and website coverage of mGluR5 drug development in order to assess their role in shaping views of individuals with neurodevelopmental disorders. Specifically, we will analyse whether the discourse is inclusive and accepting or othering by evaluating: (1) the language used to discuss FXS and ASD; (2) the extent to which fatalistic or nuanced depictions of life with FXS or ASD are presented; and, (3) whether ethical issues are raised.
Examining discourses on brain death3Ariane Daoust, Eric RacineAccepted by the medical community, the concept of brain death is still misunderstood by healthcare providers and the public and remains a source of controversy. This ongoing historical controversy intersects with debates about organ donation. This study examines how Canadian and American media have depicted brain death and aims to identify factors contributing to the confusion about brain death. Our results will inform strategies to address these issues, which have medical and ethical implications for both the public in its understanding of this controversial but tangible concept, and healthcare providers in their aim to offer the best quality of care.
CLINICAL NEUROETHICSThis pillar examines ethical challenges in the delivery of accessible and high quality healthcare to neurological and psychiatric patients.
Experience and attitudes of healthcare professionals regarding ethics issues and end-of-life decision making in patients suffering from chronic disorders of consciousness3Eric Racine, Ralf Jox, Katja Kuehlmeyer, Nicole Palmour, James Bernat, Richard Riopelle, Sam ShemieIn disorders of consciousness (coma, the vegetative state, and the minimally conscious state), the accurate understanding and communication of the diagnosis and prognosis is crucial for medical decision making. This study aims to better identify and characterize the attitude and experience of providers regarding ethical issues and decision-making in the care of patients suffering from disorders of consciousness.
A qualitative study of caregiver and patient perspectives on ethical and social issues in deep brain stimulation for Parkinson's disease and neuropsychiatric disorders5Eric Racine, Emily Bell, Lila Karpowicz, Mary Ellen MacDonald, Debra Mathews, Mary Pat McAndrews, Abbas SadikotDeepbrain stimulation (DBS) is a treatment for Parkinson’s disease that offers advantages over drug therapy, especially for later disease stages. There are few if any empirical studies identifying and characterizing the ethical and social landscape of both current and emerging practices. Of particular ethical importance is the need to understand the experience of patients and caregivers. Accordingly, we will: 1) identify and characterize ethical and social issues in the application of DBS to Parkinson's disease based on patient and caregiver perspectives and experiences and 2) recommend venues for practice and research in the ethical use of DBS in Parkinson's disease and neuropsychiatric disorders.
Examining mental health provider and patient perspectives on ethical and social issues in the treatment of mental illness using deep brain stimulation (DBS)5Emily Bell, Camillo Zacchia, Lila Karpowicz, Eric RacineInvestigations of deep brain stimulation (DBS) used to treat psychiatric conditions such as major depressive disorder, obsessive compulsive disorder (OCD), and Tourette's syndrome have shown some potentially promising results. However, important ethical and social challenges are associated with the technique and its use in psychiatric disorders, both with regards to research uses and its potential future in clinical care. Mental health stakeholders will be crucial in managing potential ethical and social concerns, and in guiding acceptance and uptake of the intervention. This research proposal aims to better understand ethical and social issues in DBS for psychiatric disorders from the perspective of mental health patients and trainees in allied health professions involved in the care of psychiatric patients.
Neuroprognostication and end-of-life decision-making in pediatric intensive care4Isabelle Chouinard, Michael Shevell, Eric RacineWithdrawal or withholding of treatment routinely precedes death in pediatric and neonatal intensive care units, and the conditions in which end-of-life decisions take place in the pediatric intensive care context leave a heavy burden on physicians who must participate in decisions typically made on the patients’ behalf. Prognostication is fundamental in the care of severely ill patients; however, its specific role in end-of-life decision-making in pediatric intensive care settings is less clear. Through participant observation and case study analysis, our research aims to identify the effects of (1) variability in neuroprognostication; (2) prognostic uncertainty; and (3) the context of evidence-based medicine on end-of-life decision-making for physicians in pediatric intensive care settings.
RESEARCH NEUROETHICSThis pillar examines ethical challenges in the responsible conduct of neuroscience research to identify practices that best serve science and society.
Evidence-based ethics in imaging genetics: Perspectives of research participants2Nicole Palmour, Eric RacineNeuroimaging innovations have spurred discussion about contemporary ethical uses of translational neuroscience within and beyond healthcare. Have the ethical issues been sufficiently addressed within each domain or does the integration of technologies change the ethical topography? We will delineate the contours of the issues and highlight the gaps in ethical coverage.
The ethics of neurosurgical innovation: What does the evidence say?2,5Lila Karpowicz, Emily Bell, Mark Bernstein, Eric Racine Surgical innovation is a grey zone between research and clinical care, thus falling beyond most research ethics regulations and the purview of mainstream clinical ethics. Ethical issues related to surgical innovation warrant a thorough examination because this practice not only affects stakeholders but is also an important force driving the development of neurosurgery. Importantly, there is a range of normative positions regarding the ethical acceptability of surgical innovation in the literature. Therefore, the goal of this study is to review the ethical landscape of neurosurgical innovation while exploring the importance of assessing the evidence supporting ethical recommendations for this practice in the normative ethics literature.
THEORETICAL AND REFLECTIVE NEUROETHICSThis pillar examines the theoretical and epistemological foundation of neuroethics as well as the potential impact of neuroscience research on bioethical concepts and principles.
Pragmatism and the neuroscience revolution: Ethical and social implications of social neuroscience1Eric RacineThere 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 will examine critically ethical and social issues arising in the development of neuroscience, in particular social neuroscience and its applications based on a pragmatic theoretical framework.
COMPLETED RESEARCH PROJECTS
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 websites1, 2Nicole 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 methylphenidate1Cynthia Forlini, Eric RacineThe regulatory frameworks for neurodevices and neuroimplantsGhislaine Mathieu
A multi-site qualitative study of ethical and social issues in functional neurosurgery using neurostimulation2Eric 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 palsy4Danaë Larivière-Bastien, Emily Bell, Michael Shevell, Annette Majnemer, Eric RacineBrain Matters 2: Ethics in the translation of neuroscience research to psychiatric and neurological care6Eric Racine, Rémi Quirion, Constance Ladouceur-DeslauriersTranslating social neuroscience to applied ethics: An epistemological and critical examination of the field1Emma Zimmerman, Eric Racine
Peer reviewed research funding *
*Excludes career awards, fellowships, scholarships, sponsors