NATIONAL CORE FOR NEUROETHICS

LA NEUROÉTHIQUE

THE UNIVERSITY OF BRITISH COLUMBIA

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Illes Research Group


Neuroimaging and Ethics


Since the Core’s inception, a central research theme has been the anticipatory study of ethical implications associated with the clinical application of neuroimaging technologies. We use empirical approaches to map out the ethics terrain on neuroimaging’s projected translational pathway, and to inform ethics discussion with the voices of stakeholders – researchers, healthcare professionals, clients and their family members. Supported by a NIH-NIMH R01 grant, “Advanced Neuroimaging: Ethical, Legal and Social Issues,” we have advanced several distinct projects, including: (1) citation pattern analysis of the early integration of neuroethics into neuroscience; (2) survey of investigator needs for integrating neuroethics into neuroscience research practice; and (3) qualitative interview study of the perspectives of providers, adult clients living with mental health disorders, and parents of children diagnosed with ADHD or OCD towards the potential application of neuroimaging to various aspects of mental health care. 


Most recently, we have launched additional projects to further explore the intersections of neuroimaging and ethics.  These include two qualitative interview studies – a study of leading academic and clinical neuroimaging researchers about the current state of translation, and a study of the experiences of adults with mental health concerns who have sought and obtained brain scans from commercial clinics. 


Also, a supplemental NIH/NIMH grant award, “Neuroimaging, Participants with Mental Health Disorders, and Incidental Findings,” supports a qualitative study which aims to answer a vital question, which has been unexplored in our work to date.  That is, how are incidental findings handled in research studies involving participants with mental health disorders?  We are answering this question by conducting interviews with neuroimaging researchers who conduct these studies, as well as a document analysis of consent forms volunteered to us by participating neuroimagers.  These analyses will inform an upcoming Working Group Meeting, oriented towards resource and management recommendations for handling incidental findings in neuroimaging research of mental illness.


We are currently developing research plans for future work that will bring our experience with investigating ethical challenges for translational neuroimaging in psychiatry to the domain of disorders of consciousness, where much energy is currently focused on developing imaging tools to assist with diagnosis, treatment, and patient care. 


Click here to download a copy of the poster ‘Neuroethics Resources: Moving from “Invisibility to High Usability” by Kate Tairyan, Carole Federico and Judy Illes presented at the Canadian Association for Neuroscience annual meeting, 2009.


Recent Publications:

Borgelt E, Buchman DZ, Illes J. “This is why you’ve been suffering”: Reflections of providers on the use of neuroimaging in psychiatry, Journal of Bioethical Inquiry 8(1):15-25 (2011).

Borgelt E, Buchman DZ, Illes J. Informed consent for neuroimaging in mental health care: Practitioner perspectives and future directions. In SJL Edwards, S Richmond, and G Rees (Eds.), I know what you are thinking: Brain imaging and mental privacy. Oxford: Oxford University Press. Forthcoming.

Garnett A, Whiteley L, Piwowar H, Rasmussen E, Illes J. Neuroethics and fMRI: Mapping a fledgling relationship, PLoS One 6(4), e18537. doi:10.1371/journal.pone.0018537 (2011).

Kehagia AA, Tariyan K, Federico C, Glover GH, Illes J. More education, less administration: Reflections of neuroimagers’ attitudes to ethics through the qualitative looking glass, Science and Engineering Ethics doi:10.1007/s11948-011-9282-2 (2011).

Illes J, Tairyan K, Federico C, Tabet A, Glover G. Reducing barriers to ethics in neuroscience, Frontiers of Human Neuroscience doi:10.3389/fnhum.2010.00167 (2010).



Clinical Neuroethics


The Clinical Neuroethics program at VCHRI is designed to closely integrate clinical ethics activities within the hospital with empirical neuroethics research. Our activities include participation in Grand Rounds, involvement as expert tutors for UBC’s Doctor, Patient, and Society course for medical students, and development of interactive and didactic activities for medical residents in the clinical neurosciences (Psychiatry, Neurology, and Neurosurgery).  For residents, fellows, and faculty, we host seminars on cutting-edge topics in neuroethics, journal clubs, and ‘tough case’ discussions. 


Click here to download a copy of our ‘tough case’ template, designed for residents to anonymously submit cases for discussion.


We provide research opportunities for interested Neurology residents.  Examples of supported projects include: (a) cultural perspectives on the utilization of ethics services for patients with acute brain disorders, (b) impact of brain images on the conceptualization and intervention of psychiatric illness, (c) perspectives on spiritual support and ethics consultation for neurological cases, and (d) perspectives on different treatment modalities for brain disorders.  In addition to these ideas, we encourage residents to propose topics related to their own neuroethics research interests. 


It is also our pleasure to occasionally host special events, such as our past film screenings, tour of the Bodies World exhibit, and featured speakers. All Clinical Neuroethics activities are designed to generate lively discussion, providing opportunities for multidisciplinary interaction and exchange. 


Click here to download the poster ‘Clinical Neuroethics Education and Outreach’ by Judy Illes, Patricia Lau, Sofia Lombera, and Peter Reiner presented at the Society for Neuroscience annual meeting, 2008.


Recent Publications:

Buchman D, Borgelt E, Illes J. Core strategies for the development of a clinical neuroethics education program for medical residents in the clinical neurosciences, Journal of Ethics in Mental Health 4(2):1-6 (2009).

Lombera S, Fine A, Grunau RE, Illes J. Ethics in neuroscience graduate training programs: Views and models from Canada. Mind, Brain, and Education 4(1):20-27 (2010).



Knowledge Translation and Neurodegenerative Disease


We are home to a competitive and dynamic international visiting scholars program in dementia research and knowledge translation.  As the UBC arm of the Canadian Knowledge Translation Network (CDKTN), our goal is to empower researchers with evidence-based strategies to address ethical challenges in dementia research.  To meet this goal, we are developing a sustainable infrastructure for dementia-related knowledge translation and exchange, and to establish a collaborative and integrated network of key stakeholders -researchers, clinicians, care providers, persons with dementia and their families, educators, policy makers, government and community agencies, advocacy groups, and industry. 


We deliver research, educational and training programs to put the translation of research in Alzheimer’s disease and related dementias into action.  To inform these endeavors, we have completed a study of investigator motivators and barriers for the consideration of ethics in neurodegeneration research, and conducted internet-based needs assessment to inform curriculum design for dementia knowledge translation.


Recent Publications:

Robillard JM, Federico CA, Tairyan K, Ivinson AJ, Illes J. Untapped ethical resources for neurodegeneration research, BMC Medical Ethics 12:9 (2011).

Illes J, Chahal N, Beattie BL. A landscape for training in dementia knowledge translation (DKT), Journal of Gerontological Education 32(3):260-272 (2011).



Aboriginal Wellness in Alzheimer’s disease: Weaving Together Science and Tradition


The disease model of dementia is not universally accepted across all cultures. Some First Nations groups view dementia-related cognitive decline using both biomedical and lay perspectives, others as part of normal aging, and yet others with the belief that declining cognitive behaviors are a means of communication during transition from one life to the next. The perspectives held in a population shape coping mechanisms and attitudes both by individuals and their community about when medical treatment should be sought. By gaining an understanding about such culturally-relevant aspects of aging and dementia, we can develop neuroethics models to bridge existing science and social divides that today jeopardize truly relevant and respectful care.


There is a dearth of culturally relevant resources on diagnosis and care for indigenous peoples in Canada with Alzheimer’s disease (AD). By learning about indigenous knowledge and practices with respect to changes in memory, cognition and personality associated with AD, we seek to articulate culturally relevant knowledge that weaves together traditional teachings and medical understandings.


This project is a collaboration between neuroethicists, geriatricians, social scientists and Indigenous peoples. Our shared goal is to improve the wellness of individuals and families by generating knowledge about the integration of medical science and tradition specifically in the prediction, diagnosis and care of people with the early onset form of AD.


Click here to download a copy of the poster ‘Aging, Dementia and Cognitive Decline: Perspectives of an Aboriginal Community in British Columbia’ by Sofia Lombera, Rachel Butler, Lynn Beattie and Judy Illes presented at the Canadian Association for Neuroscience annual meeting, 2009.


Recent Publications:

Brief E, Illes J. Tangles of neuroethics, neurogenetics and consent, Neuron 68(2):174-177 (2010).

Butler R, Beattie BL, PuangThong U, Dwosh E, Guimond C, Feldman H, Hsiung GYR, Rogaeva E, St. George Hyslop P, Sadovnick AD. A novel PS1 gene mutation in a large Aboriginal kindred, Can J Neurol Sci. 37(3):359-64 (2010).

Butler R, Dwosh E, Beattie BL, Guimond C, Lombera S, Brief E, Illes J, Sadovnick AD. Genetic counseling for early-onset familial Alzheimer’s disease in a large Aboriginal kindred from a remote community in British Columbia: Unique challenges and possible solutions, Journal of Genetic Counseling 20(2):136-142 (2010).



Neuroethics for NeuroDevNet


In partnership with NeuroDevNet Inc, a Network of Centres of Excellence devoted to studying neurodevelopmental disorders, we are working to identify and respond to the unique ethical, social, legal, and policy challenges faced by children and families affected by autism spectrum disorders (ASD), cerebral palsy (CP), and fetal alcohol spectrum disorders (FASD).


In this research, we examined the extent to which advocacy websites for these disorders inform stakeholders about treatment options, and identified the ethical challenges inherent in providing such information online. Based on our findings and recommendations, we are developing guidelines on best practices for disseminating effective and high quality treatment information over the Internet.


Recent Publications:

Di Pietro NC, Whiteley L, Illes J. Treatments and services for neurodevelopmental disorders on advocacy websites: Information or evaluation, Neuroethics doi:10.1007/s12152-011-9102-z (2010).

Racine E, Bell E, Di Pietro N, Wade L, Illes J. Evidence-based neuroethics for neurodevelopmental disorders, Seminars in Pediatric Neurology 18(1):21-25 (2011).



Perspectives and Attitudes of Individuals with Frontotemporal Dementia (FTD) and Alzheimer’s disease

Dementia affects approximately 6% of the Canadian population over age 65. Discoveries of causative genetic mutations and genetic risk factors for different forms of dementia have created the possibility of predictive and diagnostic testing. This pilot project explores patient views about genetic testing and participation in research on FTD and Alzheimer’s.



Translational Stem Cell Research for Neurological Disorders: ELSI Issues


A wealth of scientific and clinical research has focused on the use of stem cells as a potential therapy for spinal cord injury (SCI), culminating most recently in the initiation of clinical trials. However, with the urgency that scientists and clinicians have undertaken to move forward with novel therapies for this devastating injury, the perspectives of stakeholders who live with a SCI have been left behind. Translational research in this rapidly growing field therefore overlooks a critically important viewpoint. We addressed this concern with a qualitative study of the perspectives on experimental stem cell treatments from individuals who have actually suffered SCI. Using focus groups and interviews, we engaged individuals with thoracic and cervical SCIs at sub-acute and chronic stages post-injury. We found four major themes that inform the progression of stem cell research to clinical trials: readiness, the here and now, wait and see, and informed hope. Taken together, the data suggest a profound difference related to target timing of stem cell clinical trials and the perspectives about timing from those who are the end beneficiaries of therapy.


We are currently extending our work to encompass patients with primary progressive multiple sclerosis (PPMS) to probe their readiness and receptivity towards stem cell research. By focusing our research on this population, we broaden our understanding of how a degenerative condition influences perspectives about experimental treatment and what this can tell us about the views of individuals with stable spinal cord injuries.


We look forward to expanding the scope of our work in ethics and translational stem cell science with our establishment of the Stem cell Policy and Ethics Consortium for Translational Research Enterprises (SPECTRE).  SPECTRE networks researchers in Canada and the United States with shared interests in multidisciplinary collaboration and the exploration of ELSI issues associated with translational stem cell research related to the brain and spinal cord.


We have recently launched a collaborative study with the University of Alberta – fellow contributors to SPECTRE – titled “Brain Migration or Brain Circulation: Research Movement and Stem Cells.”  In this study, we examine the professional movement of stem cell scientists, and the impact of cell policies on these patterns.


Click here to download a copy of ‘Stem Cells for Spinal Cord Injury - Frequently Asked Questions’


Recent Publications:

Illes J, Reimer J, Kwon B. Stem cell clinical trials for spinal cord injury: Readiness, reluctance, redefinition, Stem Cell Reviews and Reports 1-9, DOI 10.100/512015-011-9259-1 (2010).

Reimer J, Illes J. Listening to the messages of patients and stakeholders: Where stem cell therapy, spinal cord injury and neuroethics meet, Annals of Neuroscience 16(4) doi:10.5214/ans.0972.7531.2009.160403 (2009).

Reimer J, Borgelt E, Illes J. In pursuit of “informed hope” in the stem cell discourse, American Journal of Bioethics 10(5):31-2 (2010).

Parke S, Illes J. In delicate balance: Stem cells and spinal cord injury advocacy, Stem Cell Reviews and Reports 7(3):657-663 (2011).


Genetic Therapy in Online Social Media


This project seeks to understand public perceptions of gene therapy research as they relate to issues of ethics and brain.  Our results will contribute to evidence-based recommendations for the communication of issues surrounding gene therapy targeting the brain.



Neuroscience Communication


Our goal is to study the current state of communication about neuroscience research in various forms of media and evaluate its effectiveness. We hope to inform communication initiatives and to improve public understanding of neuroscience as well as brain-related health outcomes. 


In addition to this study, we frequently engage in public events and lectures, publish editorials in the Vancouver Sun newspaper, and participate in print and televised interviews. 


Recent Publications:

Illes J, Moser MA, McCormick JB, Racine E, Blakeslee S, Caplan A, Check Hayden E, Ingram J, Lohwater T, McKnight P, Nicholson C, Phillips A, Sauvé KD, Snell E, Weiss S. Neurotalk: Improving the communication of neuroscience research, Nature Rev. Neurosci. 11:61-69 (2010).

Robillard JM, Illes J. Lost in translation: Neuroscience and the public, Nature Rev. Neurosci. 12:118 (2011).