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Informing Choice for Neurotechnological Innovation in Pediatric Epilepsy Surgery
More than 500,000 children in the USA and Canada suffer from epilepsy today. Unmanaged, epilepsy can result in cognitive decline, social isolation and poor quality of life, and has substantial economic impact on families and society. 30% of children with epilepsy continue to have seizures while on anti-seizure medication, a condition known as drug resistant epilepsy (DRE). Properly selected, up to 70% of DRE patients become seizure-free after surgery. Nevertheless, epilepsy surgery carries with it risks proportional to its level of invasiveness. As a result, a variety of less invasive interventions have been developed, including MRI-guided laser interstitial thermal therapy, robot-assisted stereo-EEG, stereotactic radiosurgery, vagal nerve stimulation, and responsive neurostimulation. This project aims to identify what caregivers and physicians value when considering neurotechnological treatments for children with DRE. This knowledge will be used to develop, evaluate and deliver patient-directed resources in the form of infographics and informational materials and videos, and clinician resources for family decision-making, clinician counseling and care.
Funding Agencies: National Institutes of Health
Pan-Canadian Neurotechnology Ethics Collaboration
Groundbreaking work is being done in the areas of neurology and neurosurgery as new neurotechnologies open up the potential for innovative therapies for a variety of ailments of the brain, spanning psychiatric, neurodegenerative, and oncological disorders. However, the decision to make the transition from pre-clinical research to first-in-human trials is a difficult one, marked by the relative absence of information on the certainty of safety, efficacy, and risk of the intervention. While guidance exists for pharmaceutical development, there is less literature on this translation for novel surgical procedures and medical devices. Patients and practitioners alike are left with a dirth of tools to aid them in the decision to undergo a novel neurointervention. In the absence of such guidance, it is unclear what factors are the key drivers of decision makers’ choices. We seek to explore the factors that key stakeholders take into consideration when determining a novel neurointervention’s readiness for translation into first-in-human trials. Insight into the attributes of a novel intervention that drive patients’ decision making will allow clinicians and researchers to better understand patient values and preferences in future care and research. Similarly, insight into the factors that drive clinicians' and researchers' perceptions of readiness can inform the development and translation of future novel interventions for patients as well as regulatory guidance for the field. Our qualitative research will provide much needed data on the relatively underreported translational process for surgeries and novel medical devices.
Funding Agencies: Sunnybrook Research Institute
Wearable Neurotechnologies in the Workplace
Under this research we address the issue of wearable neurotechnologies as they pertain to the workplace. Wearable technologies are increasingly being employed in the workplace with the aims of increasing productivity, improving safety, and promoting employee health. Neurotechnologies are not far behind. The ethical implications of wearable neurotechnologies is ripe for exploration, as we evaluate both the potential benefits and potential harms associated with employee use of neurotechnologies. We generate evidence for and issues of safety, ethics, and social responsibility that emerge as these technologies are introduced, and develop comprehensive, knowledge-based safety regulation for oversight bodies.
Funding Agencies: Technical Safety BC
Exploring Equitable and Culturally Meaningful Access to Advanced Neurotechnologies
Advanced neurotechnologies including deep brain stimulation (DBS) and ablative brain surgery are becoming increasingly common in the treatment of movement disorders, epilepsy, mental illness, and chronic non-malignant physical pain. In Canada, they are offered in academic medical centres of the most populated provinces. Some are classified as therapeutic; others as experimental. Two important considerations that have not yet been adequately explored about these technologies intended to remediate brain and other disorders are issues of access and diversity of cultural views about them. This study seeks to close that knowledge gap. In the first year of this long-term project, we are conducting expert consultations with two important cohorts: the physicians and researchers who work with these technologies, and Indigenous communities, who make up an important proportion of the rural and remote population. Through multidisciplinary, cross-cultural consultations, we will elucidate shared concerns and unique considerations that collectively inform the equitable and culturally meaningful delivery of these potentially life-changing treatments to diverse populations.
Exploring the Experiences of Families of Children with Cancers of the Sympathetic Nervous System: A Focus on Neuroblastoma
Neuroblastoma is the third most common pediatric tumor and the most frequent cause of cancer-related death in children. Despite long and intensive therapy, survival from metastatic neuroblastoma is <50%, and at time of relapse NB is almost uniformly fatal (<5% survival).
Empowering Decision-Making in Neuroblastoma: Ethics, Trust, Risk, and Benefit
Parents of children with neuroblastoma engage in a wide range of information-seeking activities to meaningfully contribute to healthcare decisions for their children yet there is little knowledge about how perspectives of risk and benefit, and access to both trustworthy and dubious information are integrated into this critical process. Our study seeks to understand how parents integrate risk and benefit, trust, hope, and hype into their decision-making regarding treatment options for children. We will use our research to provide a framework and resources for deliberating and guiding decisions about neuroblastoma trials and interventions.
Exploring the Experiences of Bereaved Siblings: A Focus on Neuroblastoma
Siblings of children with neuroblastoma must learn to cope not only with the changing health status of their sibling but also the changes that come with the treatment and disease and transition. Our research focuses on the experience of adolescents who have lost a brother or sister to neuroblastoma while identifying resources they had access to or would have benefited from access to along their sibling’s palliative care journey.
Funding Agencies: The James Fund for Neuroblastoma Research
Neuroscientists have developed novel brain imaging techniques to probe and elucidate levels of consciousness in brain trauma patients that one day may allow them to communicate with the outside world for the first time. The goal of this project is to explore the ethical issues related to this research, the implications for the health care system, and to produce evidence-based guidance toward the translation of results and capabilities into further discovery and possible clinical practice. To achieve these goals, we are elucidating the perspectives of key stakeholders (practitioners, ethicists, neuroimaging researchers, lawyers, and family members) in interviews, focus groups and through wiki-based online discussion. To date, our results reveal optimism for the actionability of neuroimaging for untangling the complexities of consciousness, and highlight scientific validity and the reliability of the technology as the areas for continued and immediate concern.
Fins, J., & Illes, J. (2008). Lights, camera, inaction? Neuroimaging and disorders of consciousness. The American Journal of Bioethics, 8(9), W1–3. doi:10.1080/15265160802479568 (PDF)
Funding Agencies: Canadian Institutes for Health Research
First Nation Approaches to Alzheimer Disease Prediction, Diagnosis and Care: Weaving Together Science and Tradition
We are engaged in community-based participatory research with a remote and dispersed First Nation Population affected by a unique genetic mutation leading to early onset familial Alzheimer Disease (EOFAD). This research seeks to understand non-western perspectives on aging and dementia, and the possibilities for holistic approaches to wellness in neurodegenerative diseases that combine both traditional teachings and scientific exploration. This work will contribute to the creation of culturally relevant resources for the Aboriginal community affected by EOFAD, and advance the understanding and reach of neuroscience and healthcare within the culturally diverse Canadian landscape.
Cabrera, L., Beattie, L.B., Dwosh, E., Illes, J., Early Onset Familial Alzheimer Disease: Biomedical and traditional approaches. Open Medicine, 2015, DOI: 10.1177/2050312115621766. (PDF)
Stevenson, S., Beattie, B.L., Vedan, R., Dwosh, E., Bruce, L., Illes, J., Neuroethics, confidentiality, and a cultural imperative in imperative in early onset Alzheimer disease: A case study with a First Nation population. Philosophy, Ethics, and Humanities in Medicine. 2013,8(15):1-6. (PDF)
Brief E, Mackie J, Illes J., Incidental Findings in Genetic Research: A Vexing Challenge for Community Consent. Minnesota Journal of Law, Science & Technology. 2012; 13(2):541-558. (PDF)
Brief, E., Illes, J., Who has the right to know?, Gene Watch. 2012; 25 (4): 17-18.
Brief, E., Illes, J., Tangles of Neurogenetics, Neuroethics, and Culture. Neuron. 2010; 68(2): 174-177. (PDF)
Butler, R., Dwosh, E., Beattie, B.L., Guimond, C., Lombera, S., Brief, E., Illes, J., Sadovnick, A.D., Genetic counseling for early-onset familial Alzheimer disease in a large Aboriginal kindred from a remote community in British Columbia: Unique challenges and possible solutions. Alzheimer's and Dementia, 2009, 5(4):90-99.
Many for-profit centres around the world offer SCI patients experimental treatments using stem cells that are not licensed in Canada or the United States and that have limited to no preclinical substantiation of effectiveness. Those who wish to travel abroad for these treatments must sort through complex information from a family doctor, spinal surgeon, physiatrist, and other health professionals involved in their care. Our research focus is on how these individuals sort through the advice from these sources, weigh the veracity of information, and decide where to place trust to make a decision. Methods for this study are:
- Interviews with individuals who have experienced SCI.
- Interviews with physicians who work with individuals who have experienced SCI.
The outcome of this work will be evidence-based guidance for healthcare professionals who are in the critical path of responding to queries and communicating about stem cells interventions for SCI abroad.
- Jacob, K.J., Kwon, B.K., Lo, C., Snyder, J., Illes, J., Perpectives on strategies and challenges in the conversation about stem cells for spinal cord injury. Nature Spinal Cord. (2015) 53: 811–815. doi:10.1038/sc.2015.96 (PDF)
Funding Agencies: Stem Cell Network of Canada
This research explores how ethics, policy, and law impacts the decisions of stem cell scientists. The project uses qualitative, quantitative, and ethical approaches to understand how these factors influence the direction of the field and ulitimately impact patient care. Findings include recommendations for trials sponsors through an ethical analysis of the world's first human embryonic stem cell trial; insights into how stakeholders are represented in media accounts of stem cell research; measuring the impacts of policy on international research productivity by tracking the use of pluripotent stem cell lines; and a grounded theory of the professional actions and decisions of established stem cell researchers.
Eaton, M., Kwon, B., Illes, J., Scott, C.T., Money and Morals: Ending clinical trials for commercial reasons. The American Journal of Bioethics. 2015. 19: 297-315. doi: 10.1007/7854_2014_337. (PDF)
Borgelt, E., Dharamsi, S., Scott, C.T., (2013) Dear Student: Stem cell scientist’s advice to the next generation. Cell Stem Cell. 12(6): 652–655. (PDF)
Chang, W., Bank, T.C., Scott, C.T., (2013) Fit to Print: Media accounts of unproven stem cell treatments. The American Journal of Bioethics Primary Research. 5(1): 33-43 (PDF)
DeRouen, M.C., McCormick, J.B., Owen-Smith, J., Scott, C.T., (2012) The Race is On: Human embryonic stem cell research goes global. Stem Cell Reviews and Reports 4(8):1043-1047. (PDF)
Owen-Smith, J., Scott, C.T., McCormick, J., (2012) Expand and Regularize Federal Funding for Human Pluripotent Stem Cell Research. Journal of Policy Analysis and Management. 31(3):706–728. (PDF)
Funding Agencies: The National Science Foundation, The Stanford Institute for Stem Cell Biology and Regenerative Medicine, The California Institute for Regenerative Medicine, The Stanford Center for Bioethics
The program in environmental neuroethics explores how changes in the environment – both in the natural world and the technological world of human-made artifacts - is affecting brain and mental well-being. We bring a neuroethical lens to an issue that traverses cultures, land and place, and chart the cycle of human action and environmental consequence.
Our first studies of the existing literature on the natural environment focused on the impact of unconventional gas development (fracking) as a starting point. While many papers mention brain or neurological effects, only a few elaborate on them substantively. For our team, this gap stresses the important role of a new environmental neuroethics in elucidating: (i) the relationship between the environment and brain health, whether causal or associative; (ii) ethics, environment and neurotoxicity; (iii) the role of culture in understanding the relationship between the environment and brain health and mental well being; (iv) the capacity of local social organizations to deal with the impact of environmental change.
We have now expanded our perspective to include a broader concept of the environment. Increasingly, a range of technologies are becoming part of our neural environment, from devices such as deep brain stimulation electrodes that help patients modulate illness to wearable devices that consumers use to modify and measure brain activity. We are considering questions such as:
- How will the ability of third parties to hack into databases be curtailed and the privacy of brain information protected?
- What are the strategic approaches to the design of emerging technologies that promote ethical adoption for target end-user and consumer groups?
- What is the impact of modulating healthy brains of children that are still developing into maturity?
- How do wearables technologies impact the perceptions of older adults about safety in their activities of daily living?
- What risks arise when data from wearable technologies are used to assess worker performance?
We address these and similar issues through the use of rigorous empirical methods, with the goal of delivering evidence-based actionable results for regulatory consideration.
Specker-Sullivan, L., Illes, J. Beyond ‘communication and control’: Towards ethically complete rationales for brain-computer interface research. Brain-Computer Interfaces. 2016, 3(3):156–163. (PDF)
Specker Sullivan, L., Illes, J. At the ethics interface of the brain computer interface. Journal of Neural Engineering. (under review)
Gilbert, F., Illes, J. Losing control over brain computer interfaces: Results from first-in-human trial. Science and Engineering Ethics. (Under review)
Illes, J., Davidson, J. & Matthews, R., 2014. Environmental neuroethics: changing the environment--changing the brain Recommendations submitted to the Presidential Commission for the Study of Bioethical Issues. Journal of Law and the Biosciences. 1: 221–223. (PDF)
Insights on Managing Pain in Children and Teens (IMPACT)
Poor pain management after pediatric surgery remains a critical concern despite efforts in providing care information at hospital discharge. A recent audit of daycare surgical procedures at BCCH highlighted that children experience a significant amount of preventable pain at home in the days following surgery. The goal of this project is to observe the clinical encounters at discharge and identify areas for improvement in the communication of pain management information for families who have children in postoperative care. These pilot data will be leveraged for the co-design of evidence-based resources for pain management communication. Results from this project will fill an essential gap in our understanding of the lived experiences of pediatric postoperative pain management.
Program Evaluation of the First Link® Dementia Support Service in British Columbia
The First Link® dementia support evaluation project is aimed at improving support for British Columbians affected by dementia. The goal of this mixed-methods evaluation project is to identify the key strengths and areas for improvement of the program from the perspective of various stakeholders, including persons living with dementia, their care partners, and health care professionals. The results from this evaluation will inform the services offered and will help ensure that the Society is providing the best support and education possible to the dementia community in British Columbia.
Funder: The Alzheimer Society of B.C.
Health Advice in a Digital World: Helpful or Harmful?
Over 80% of adult Internet users report seeking health information online and through social media applications. As the population gets older and the prevalence of dementia increases, online health information about aging and dementia holds the potential to significantly impact the health of our aging demographic. However, little is known about how information pertaining to age-associated diseases is disseminated and shared online, and about the quality and value of this information. To fill these knowledge gaps, we are using data mining, content analysis and expert panel reviews to empirically examine online the validity and ethics of online resources about age-associated diseases. To date, we have shown that:
- Many online self-diagnostic tools for Alzheimer disease do not provide meaningful information about the disease and may be harmful due to important ethical breaches such as conflict of interest or fraudulent practices;
- Social media platforms such as Twitter act as key channels for the timely dissemination of research findings and allow for interactions between a large variety of stakeholders, including health care professionals, researchers and the patient community;
- Online health information about dementia is highly variable in quality, with one in five websites providing information intended to sell a product.
Taken together, our findings call for an increased awareness of the potential benefits and harms of online resources to ensure older adults are equipped to make the best possible decisions about their brain health. In line with this call, we have delivered seven public outreach presentations and five media interviews on the topic of online health in the last year.
Robillard, J.M., Johnson, T.W., Hennessey, C., Beattie, B.L., Illes, J. (2013) Aging 2.0: Health information about dementia on Twitter. PLoS One. 8(7):e69861. (PDF)
Robillard, J.M., Federico, C.A., Tairyan, K., Ivinson, A.J., Illes, J. (2011) Untapped ethical resources for neurodegeneration. BMC Med Ethics. 12:9. (HTML ver.)
Fueling Hope: Biotechnologies for the Brain on Social Media
The development of novel biotechnologies for the brain, such as stem cells, gene therapy and optogenetics, are fueling hopes of treating a wide range of disorders of the central nervous system. While ethical concerns about these types of treatments have been articulated within the academic community, little is known about views and opinions of other stakeholder groups. To address this gap, we utilized social media platforms such as the Q&A site Yahoo! Answers and Twitter to investigate the type of information public users are seeking about these novel biotechnologies, and the hopes and concerns they express. Our results reveal high expectations for gene therapy and stem cells that range from cures for genetic and non-genetic diseases to pre- and postnatal enhancement of physiological attributes. Ethics questions are commonly expressed as fears about the impact of biotechnologies for the brain on self and society, and concerns about “mind control” with optogenetics. Overall, the findings highlight the powerful role of social media as a rich resource for research into attitudes toward biomedicine, and as platform for knowledge exchange and public engagement for topics relating to health and disease. To put these conclusions into practice, we have issued a set of recommendations to promote ethical communication about biotechnology in the research community (Robillard JM, 2015, Expert Opinion on Biological Therapy).
Robillard, J.M. Communicating in context:A priority for gene therapy researchers. (2015) Expert Opinion on Biological Therapy. 15(3):315-8. (PDF)
Robillard, J.M., Roskams-Edris, D., Kuzeljevic, B., Illes, J. (2014) Prevailing public perceptions of the ethics of gene therapy. Human Gene Therapy. 25(8):740-6. (PDF)
Robillard, J.M., Whiteley, L., Johnson, T.M., Lim, J., Wasserman, W.W., Illes, J. (2012) Gene therapy: Capturing hopes and fears through an online Q&A platform. Journal of Medical Internet Research. 15(3):e44. (HTML ver.)
Conflicts of Interest in Neurosurgical Research
An increasing amount of research funding in neurosurgery research comes from device manufacturers. In addition to research funding, industry also funds continuing medical education and many neurosurgeons receive royalties, speaking fees and other financial incentives from these same device manufacturers. This creates a conflict of interest with the potential to bias research results. We are looking at a number of aspects of financial relationships between neurosurgeons and industry including the accuracy of disclosure of these relationships in research publications as well as the financial scale and scope of industry involvement with neurosurgeons.
- Schon E, Kulkarni AV, McDonald PJ (2016) Conflicts of interests in neurosurgical research: Effects of the 2013 Sunshine Act on voluntary disclosure. Canadian Bioethics Society Annual Meeting, Toronto ON.
- McDonald PJ (2014) Conflicts of interest. Neurosurgical Ethics in Practice (Bernstein M, Ammar M eds.) Springer
- Schon E, McDonald PJ (2013) Disclosure of conflicts of interest in published pediatric neurosurgery research: How do we compare? 42nd Annual Meeting of the AANS/CNS Joint Section on Pediatric Neurological Surgery, Toronto ON.
- McDonald PJ, Schon E, Ellis MJ, Kazina C (2011) Conflicts of interest in pediatric neurosurgery research- Comparing company data with surgeon disclosure. 40th Annual Meeting of the AANS/CNS Joint Section on Pediatric Neurological Surgery, Austin TX.
Students involved in project: Emma Schon BA, Madeleine de Lotbiniere-Bassett
Funding Agencies: College of Medicine, University of Manitoba
Ethical Issues in Concussion Research and Care
Concussion and the long-term effects of concussion have become a topic of much interest to the public, with numerous examples in professional and amateur sports of athletes being significantly affected by multiple concussions. This has led to a proliferation of health care professionals providing advice and management to patients suffering from the effects of concussion without any accepted standards of what is required to be considered a concussion “specialist”. We have examined the range of care being offered in Canadian concussion clinics and are examining some of the unresolved ethical issues in concussion care and research.
- Ellis MJ, Ritchie L, Selci E, Chu S, McDonald PJ, Russell K (2016) Googling concussion care: a critical appraisal of online concussion heathcare providers and practices in Canada. Clin J Sport Med (PDF)
- Russell K, Ritchie L, Vis S, Chu S, Selci E, McDonald PJ, Ellis MJ (2015) Measuring the scientific impact of sports-related concussion research: a citation analysis study. Curr Research: Concussion. 2(3):113-121. (PDF)
Funding Agencies: Department of Surgery, University of Manitoba
Ethics Education in Neurosurgery Training
While almost all medical schools now have mandatory courses in bioethics as part of their curriculum, postgraduate programs in North America provide ethics education sporadically to doctors undergoing specialty training. This project will survey neurosurgery program directors across North America to determine if and how they provide education in ethics to their trainees. We hope to identify best practices for post-graduate ethics education to provide a suggested framework for neurosurgery training programs.
Students: Naheeda Rajmohamed
Funding Agencies: Office of Pediatric Surgical Education and Innovation, BC Children’s Hospital