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Public FaceThe Public Face of Pediatric Data Sharing Initiatives

As an ever-increasing number of biobanks and databases spring up around the world, there is a vital need for oversight of their ethical and structural governance. Our aim is to examine the policies of organizations sharing data and biomaterials from children with neurodevelopmental disorders. Looking at the dearth of publicly available information, we seek to provide recommendations as to how best to deal with issues such as confidentiality, commercialization, and special considerations of the vulnerable minor population, and to encourage these organizations to make more policy information available to the public to engender trust and transparency.

Funding Agencies: NeuroDevNet, a Canadian National Centre of Excellence

Conversations on Ethics

Conversations on Ethics in Neurodevelopmental Disorders (CENDs)

We are constantly striving to reach out to members of the public, neuroscience researchers, physicians, and a diverse array of academic groups to broaden the discussion on topics in neuroethics and to increase ethics literacy in our communities. To this end, we are creating educational webinars on topics in the intersection of ethics and neurodevelopmental disorders bringing to these discussions the voices of experts in the field, the NeuroDevNet community, and the general public.

Funding Agencies: NeuroDevNet, a Canadian National Centre of Excellence

Neuroimaging for MCSNeuroimaging for the Minimally Conscious State: Exploring Ethics Challenges in the Clinical Landscape

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.

Relevant Publication:

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

Cross Cultural UnderstandingsCross-Cultural Understandings of Aging and Dementia

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.

Relevant Publications:

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.

Funding Agencies: North Growth Foundation, Vancouver Foundation, Canadian Institutes of Health Research

Addiction trustAddiction, trust, and what really matters in chronic pain management

The dramatic rise of public health harms from prescription opioid abuse has led to concerns about whether certain patients with chronic nonmalignant pain (CNMP) are drug-seeking, abusing, or diverting prescribed opioids. These concerns have created a climate of distrust in CNMP management. Trust has long been considered foundational to the provider-patient relationship and an enabler of positive health outcomes, however research that explores the moral meanings of trust, distrust, and trustworthiness in CNMP management has received limited empirical and normative attention. This research seeks to answer the following question: What is the role of trust in the moral experience of CNMP? Grounded theory methods are applied to explore how concepts such as trust, distrust, and trustworthiness impact the patient-provider relationship from the perspective of adults living with chronic low back pain. The findings of this study may help to open avenues of communication in CNMP management and to contribute to better care through the improvement of caring relationships, and help to identify ways in which trust can be facilitated, strengthened, and maintained in patient-provider relationships.

Relevant Publications

Buchman, D.Z., Illes, J. (2013, May). Epistemic injustice, distrust, and the moral experience of living with addiction and chronic pain. 24th Annual Canadian Bioethics Society Conference, Banff, AB, Canada.

Buchman, D.Z. (2013, April). Client perspectives on the relationship between addiction and trust in chronic pain management. Centre for Addiction and Mental Health Addiction Grand Rounds, Toronto, ON, Canada.

Buchman, D.Z. (2013, January). Addiction, trust, and distrust in chronic pain management: Patient perspectives. University of Toronto Joint Centre for Bioethics, Toronto, ON, Canada.

Buchman, D.Z., Borgelt, E.L, Whiteley, L., & Illes, J. (2013) Neurobiological narratives: Experience of mood disorder through the lens of neuroimaging. Sociology of Health & Illness, 35(1), 66-81. (PDF)

Funding Agencies: Frederick Banting and Charles Best Canada Graduate Scholarship – Doctoral Research Award from CIHR

Neuroimaging childrenNeuroimaging and genetic counseling for mental health care in children and adolescents

Nearly 5 million children and adolescents suffer from mental health disorders in Canada. While tremendous advancements have been made in ameliorating the associated burden of disease and improving their lives and those of their families, much work remains to be done. The goal of this project is to explore the receptivity of mental health care providers who specialize in treating this population to neuroimaging and genetic testing. From interviews with 38 participants and more than 20 hours of recorded data, our results highlight the promise of such new evidence for diagnosis and treatment plans. The promise is not without risk, however, and three emerge prominently in our data: (1) potential impacts on employment and insurance as adolescents reach adulthood, (2) misuse or misinterpretation of the imaging or genetic data, and (3) infringements on self-esteem or self-motivation.

Relevant Publications:

Borgelt, E. L., Buchman, D. Z., & Illes, J. (2011). “This is why you’ve been suffering”: reflections of providers on neuroimaging in mental health care. Journal of bioethical inquiry, 8(1), 15–25. Retrieved from (PDF)

Borgelt, E. L., Buchman, D. Z., & Illes, J. (2012). Neuroimaging in mental health care: voices in translation. Frontiers in human neuroscience, 6(Article 293), 1–5. doi:10.3389/fnhum.2012.00293 (PDF)

Borgelt, E. L., Buchman, D. Z., Weiss, M., & Illes, J. (2012). In Search of “Anything That Would Help”: Parent Perspectives on Emerging Neurotechnologies. Journal of attention disorders, (May 22), 1–7. doi:10.1177/1087054712445781 (PDF)

Funding Agencies: National Institutes of Health

Traveling abroadTravelling abroad for stem cell treatment for spinal cord injury (SCI): Risk, trust, and decision making

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.

Relevant publication:

  • 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

Stem cell researchersStem cell researchers: Brain drain or brain gain?

It has been suggested that the funding and regulatory environment have a significant impact on the ability of a jurisdiction to attract and retain scientific talent, and contribute to the “brain drain” of talent from one geographic region to another. However, the movement of researchers, whether across institutions within countries or across borders, may also reflect a “brain circulation” that serves to fuel fresh thinking and healthy competitiveness. The purpose of this set of studies is to identify the actual push and pull mechanisms that underlie movement among senior researchers and trainees by conducting interviews and focus groups with stem cell researchers themselves.

The findings from this work lead to evidence-informed guidance for institutions and policy-makers in the development of stem cell research and clinical translation.

Relevant publications:

  • Jacob, K.J., Longstaff, H., Scott, C.T., Illes, J., Focus on people and the science will follow: Motivating forces for professional movement in stem cell research. Stem Cell Reviews and Reports. 2015. 11(4): 533-539. (PDF)
  • Jacob, K.J., Roskams-Edris, D., Illes, J., Innovations in training: Towards mitigating "eternal post-docdum" in stem cell research. Stem Cell Reviews and Reports. 2015. 11(6): 798-803. doi: 10.1007/s12015-015-9609-5. (PDF)
  • Longstaff, H., Khramova, V., Eijkholt, M., Mizgalewicz, A., Illes, J., Hopes and fears for professional movement in the stem cell community. Cell Stem Cell. 2013. 12 (5): 497-630. (PDF)

Funding Agencies: Stem Cell Network of Canada (Networks of Centres of Excellence)

Ethics, policy and lawEthics, Policy, and Law in Stem Cell Research

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.

Relevant Publications:

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. (Link)

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 MedicineThe Stanford Center for Bioethics


Environmental Neuroethics

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.

Relevant Publications:

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)

shutterstock_129560924Cognitive Enhancement

The notion that technology can be used to augment the capacities of our brains, commonly called cognitive enhancement, has captured the minds of many. An interdisciplinary community of scholars hailing from neuroscience and philosophy, medicine and law, sociology and psychiatry, regularly inveigh on the issue. Because the debate over cognitive enhancement touches on deep cultural motifs surrounding the use of technological tools writ large – fairness, peer pressure, authenticity, naturalness, identity, autonomy, and more – the discussion has also attracted the interest of artists, the popular press, policymakers, and the general public. Considerations of the propriety cognitive enhancement capture the full gamut of twenty first century angst over what Charles Taylor has termed the malaise of modernity.

Our cognitive enhancement project explores public attitudes towards towards the use of such agents. Much of the work employs quantitative neuroethics. Inspired by the successes of experimental philosophy, the approach employs systematic manipulation of key variables in order to gain insight into the public’s perspective about neuroethical issues that are both quantitative and generalizable. A surprising feature of the approach is that it deepens normative deliberation. The resulting insights are both scientifically sound and philosophically satisfying.

In part we are driven by good old-fashioned intellectual curiosity, but we also believe we can use quantitative neuroethics to make the world a better place to live. Our long-term goal is to inform policy: if we can have even a modicum of success, we will have served the mandate of the field of neuroethics in the most valuable way possible.

Relevant Publications:

Specker, J., Schermer, M., Reiner, P.B., Public attitudes towards moral enhancement. Evidence that means matter morally. Neuroethics 10:405-417 (2017) (PDF)

Fox, K.C.R., Fitz, N.S. & Reiner, P.B., (2016). The Multiplicity of Memory Enhancement: Practical and Ethical Implications of the Diverse Neural Substrates Underlying Human Memory Systems. Neuroethics. doi:10.1007/s12152-016-9282-7 (PDF)

Cabrera, L.Y., Fitz, N.S., Reiner, P.B., (2015). Reasons for comfort and discomfort with pharmacological enhancement of cognitive, affective, and social domains. Neuroethics. 8:93-106. PDF

Cabrera, L.Y., Fitz, N.S., Reiner, P.B., (2015). Empirical support for the moral salience of the therapy-enhancement distinction in the debate over cognitive, affective and social enhancement. Neuroethics. 8: 243-256. PDF

Fitz, N.S., Nadler, R., Manogaran, P., Chong, E., Reiner, P,B., (2014). Public attitudes towards cognitive enhancement. Neuroethics. 7:173-188. PDF

Reiner, P.B., (2013). Biopolitics of cognitive enhancement, in: Cognitive Enhancement- An Interdisciplinary Perspective, (E. Hildt & A. Franke, eds.), Springer: 189-200. PDF

Banjo O.C., Nadler, R., Reiner, P.B. (2010). Physician attitudes to cognitive enhancement: safety concerns are paramount. PLoS One 5(12): 1-8. PDF

Funding Agencies: Canadian Institutes for Health Research

tDCSDIY Brain Stimulation

Transcranial direct current stimulation (tDCS), a simple means of brain stimulation, possesses a trifecta of appealing features: it is relatively safe, relatively inexpensive and relatively effective. In the clinical realm, investigators are evaluating its use as a treatment for stroke, pain, depression, addiction, and more. However, the real excitement lies in its use as a tool to modify the brains of healthy humans: it seems that many normal functions—memory, numerical ability, risk-taking behaviour, and more—can be either enhanced or enfeebled by tDCS. Much as functional MRI has fuelled a revolution in measuring brain activity, tDCS seems poised to radically change our ability to manipulate brain activity in living humans. Together, these are the Swiss Army knives of human neuroscience.

The same qualities that constitute the egalitarian promise of tDCS—efficacy and access—simultaneously give rise to its peril. It is relatively easy to obtain a device and the do-it-yourself (DIY) community has become galvanized by reports of tDCS as a cognitive enhancer. We work in this field closely monitors developments in the field of DIY tDCS, and we provide practical recommendations for researchers, practitioners, and regulators to generate best practices and propagate norms of safe use as tDCS rapidly evolves from an arcane but exciting experimental tool to becoming the new new thing.

Relevant Publications:

Wexler, A., Reiner, P.B., Home use of tDCS transitions from “do-it yourself” to “direct-to-consumer”. Routledge Handbook of Neuroethics (LSM Johnson & K Rommelfenger, eds) pp. 271-284 (2017).

Cabrera, L.Y., Reiner, P.B., (2015). Understanding public (mis)understanding of tDCS for enhancement. Frontiers in Integrative Neuroscience. doi:10.3389/fnint.2015.00030. PDF

Fitz, N.S., Reiner, P.B., (2014). Buttressing regulation of cognitive enhancement devices with principles of harm reduction. Journal of Law and the Biosciences. 1:322-327 doi:10.1093/jlb/lsu018. PDF

Fitz, N.S., Reiner, P.B. (2013). The challenge of crafting policy for do-it-yourself brain stimulation. Journal of Medical Ethics. doi: 10.1136/medethics-2013-101458 Link. PDF [See also this editorial in Nature in response to our paper.]

Fitz, N.S., Reiner, P.B., (2014). The Perils of Using Electrical Stimulation to Change Human Brains, in: The Stimulated Brain (R. Cohen Kadosh, ed.). Elsevier, pp. 61-84.

Reiner, P.B. (2013). Comment on “Can transcranial electrical stimulation improve learning difficulties in atypical brain development? A future possibility for cognitive training” by Krause and Cohen Kadosh, Developmental Cognitive Neuroscience. doi: PDF

Funding Agencies: Canadian Institutes for Health Research


Autonomy – the ability to decide for oneself about oneself - is one of the most prized legacies of the enlightenment. An unresolved issue in neuroethics is the degree to which autonomy exists in the real world, for both unintentional and intentional influences upon our behavior impinge upon our ideal of autonomy.

Recent developments in the applied behavioral sciences have created new opportunities for influencing decision-making. These subtle manipulations of the environment, commonly called nudges, aim to improve the well-being of the decision-maker. Despite the best intentions of decision architect, critics have branded these as a feature of the nanny state, with the underlying complaint being the intrusion upon autonomy.

Our project explores public attitudes towards nudges in order to inform this ethical debate with empirical data. We use contrastive vignettes to elucidate some fundamental principles that the public uses in distinguishing between acceptable and unacceptable nudges: essentially, we are mapping the contours of the tradeoff between benefit and autonomy. The project has significant implications for business and government leaders, many of whom are already using nudges but who would profit from empirical understanding of the ethically-charged issues on both sides of the debate.

Relevant Publications:

Niker, F., Reiner, P.B., Felsen, G,. (2015). Updating our Selves: Synthesizing Philosophical and Neurobiological Perspectives on Incorporating New Information into our Worldview. Neuroethics. doi:10.1007/s12152-015-9246-3 PDF

Niker, F., Reiner, P.B., Felsen, G,. (2016). Pre-Authorization: A Novel Decision-Making Heuristic That May Promote Autonomy. The American Journal of Bioethics 5:27-9. PDF

Felsen, G., Reiner, P.B., (2015). What can neuroscience contribute to the debate over nudging? Review of Philosophy and Pscyhology. doi:10.1007/s13164-015-0240-9. PDF Link

Nagel, S. K., Hrincu, V., Reiner, P.B., (2016). Algorithm anxiety - Do decision-making algorithms pose a threat to autonomy? In: 2016 IEEE international symposium on ethics in engineering, science and technology, 13-05-2016 - 14-05-2016, Vancouver. Link

Felsen, G., Castelo N., Reiner P.B. (2013). Decisional enhancement and autonomy: Public attitudes towards overt and covert nudges, Journal of Decision Making 8:202-213. PDF

Felsen, G., Reiner, P.B., (2013). Having the capacity for autonomy is insufficient to provide meaningful autonomy. AJOB Neuroscience 4:52–3. PDF

Nagel, S., Reiner P.B., (2013). Autonomy support to foster individual’s flourishing. American Journal of Bioethics 13: 36-37 PDF

Castelo, N., Reiner, P.B., Felsen, G., (2012). Balancing autonomy and decisional enhancement: an evidence based approach, American Journal of Bioethics 12:30-31. PDF

Felsen, G., Reiner, P.B., (2011). How the Neuroscience of Decision Making Informs Our Conception of Autonomy. AJOB Neuroscience. 2(3):3–14. PDF

Funding Agencies: Canadian Institutes for Health Research

Technologies of the Extended Mind

For the better part of two decades, the philosopher Andy Clark has been claiming that the physical vehicles that realize (at least some of) our cognitive processes lie outside of the bounds of the skull, extending out into the world at large. As a hard neuroessentialist, one would imagine that I would be among the last to accept this extended mind hypothesis, but the more opportunity I have had to explore it, the more I have found it compelling.

Make no mistake: the claims of the extended mind hypothesis are radical. Yet the concept resonates with a key feature of modern life: for many, there is a growing sense that computers, smartphones, and increasingly ‘the Internet of Things’ function as sophisticated extensions of our cognitive toolkit. Conceiving of the mind as a blend between brain and algorithm challenges long-held assertions that there is something exceptional about the brain, but I have always been one to suggest that we ignore reality at our peril. As a result, I now refer to the entire suite of algorithmic agents as Technologies of the Extended Mind, or TEMs.

For neuroethics, thinking about computers, smartphones and other sophisticated algorithmic agents as TEMs changes things. Because if they are viewed as part of the mind, then they rightfully become included in the full range of debates over modifying, surveilling, or otherwise intruding upon our brains. This is the focus of the newest research cluster under the umbrella of the Reiner Group, and you can expect to hear a great deal of exciting news about it in the months to come.

Relevant Publications:

Reiner, P.B., Nagel, S.K., Technologies of the Extended Mind In: Neuroethics: Anticipating the Future, (J. Illes ed.), pp. 108-122 (2017).

Fitz, N., Reiner, P.B., (2016). Perspective: Time to expand the mind. Nature. doi:10.1038/531S9a PDF Link

Nagel, S. K., Hrincu, V., Reiner, P.B., (2016). Algorithm anxiety - Do decision-making algorithms pose a threat to autonomy? In: 2016 IEEE international symposium on ethics in engineering, science and technology, 13-05-2016 - 14-05-2016, Vancouver. Link

Reiner, P.B., “Technologies of the extended mind: Implications for privacy of thought,” The Neuroethics Blog. October 20, 2015.

Reiner, P.B., (2011). The rise of neuroessentialism. In: Oxford Handbook of Neuroethics. J. Illes & B. Sahakian, eds. pp. 161-175.

Aging 2.0Health 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:

  1. 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;
  2. 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;
  3. 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.

Relevant Publications:

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.)

Funding Agencies: Canadian Institutes for Health ResearchCanadian Dementia Knowledge Translation NetworkFoundation on Ethics and Technology

Gene TherapyFueling 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).

Relevant Publications:

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.)

Funding Agencies: Genome BCCanadian Institutes for Health Research


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.

Relevant publications:

  • 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.

Relevant publications:

  • 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 (epub ahead of print) (Link)
  • 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