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CURRENT STRATEGIC INITIATIVES

Canadian Brain Research Strategy (CBRS)

The mission of CBRS is to build on Canada’s strengths and current investments in cutting-edge collaborative neuroscience to transform neurological and mental health for Canadians. The Strategy is a grass-roots initiative launched by leading Canadian neuroscientists, in partnership with representatives of the Neurological Health Charities of Canada to respond to a growing need for concerted efforts to understand the brain.

Its vision is of innovative and collaborative brain research that will drive policy as well as social, health and economic advancement for Canada and the world. Canada’s neuroethicists will guide these endeavors and continue to provide national and global leadership in aligning ethical, social, legal and policy considerations with advances in neuroscience.

The CBRS is not seeking to become a parallel funding stream, but rather to inspire decision makers and funders to further invest in programs that foster collaborative, transdisciplinary and open approaches to move Canada toward a big-science model for brain research.

By leveraging existing investments in brain science and adopting a big science approach to discovery, CBRS can establish transform the future of Canadian society.

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 Agency: Sunnybrook Research Institute

Bioethics Council of Canada

The initiative to explore the need for and possibility of a Canadian national bioethics council was born from the view of some of Canada’s prominent ethicists that the country has unmet needs regarding normative guidance in matters related to science, values, and society. In 2021, Profs. Judy Illes and Vardit Ravitsky convened a small group of thought leaders who had previously expressed this concern in various contexts and venues to explore the potential interest in such an initiative. The group is currently in the information-gathering stage and, in 2022, will hold international and national consultations and engage with the broad Canadian academic bioethics and Science, Technology and Society (STS) communities to explore and advance possible models for Canada.

Ethics for UBC

Neuroethics Canada is pleased to announce Ethics for UBC, a series of panel discussions that will explore the current landscape of ethics scholarship and education across the Vancouver and Okanagan campuses of our university.

In attending one of the five interactive 75-min panel discussions, participants will have the opportunity to learn about the current ethics-related endeavours taking place at UBC, pressing ethical issues that exist across a wide range of disciplines, and the ways in which you can become more involved.

For more details, please visit: https://neuroethics.med.ubc.ca/ethics-for-ubc/

We are grateful to the following individuals for their important contributions to this strategic initiative: Dr. Judith Hall, Dr. Maxwell Cameron, Ms. Lerato Chondoma, Dr. Ralph Matthews, Mr. Roland Nadler, Dr. Julie Robillard, Dr. David Silver, and Dr. Alice Virani.

In addition, we thank our organizing committee: Dr. Judy Illes, Dr. Paul van Donkelaar, Ms. Louise Harding, Ms. Marianne Bacani, and Ms. Anna Nuechterlein.

CURRENT RESEARCH

International Neuroethics Patent Initiative (INPI)

In collaboration with colleagues at the University of Bonn, Centre for the Law of Life Sciences, in Germany, we are undertaking a multinational collaboration to examine neuroscience patents and the protection of intellectual property as they pertain to brain health and disease.

The abstract of the project is as follows:
Patents granted in the field of neuroscience cover diverse areas of diagnostics, devices, data processing methods and computational models, and networks and systems related to the central nervous system. Historically, patent protections have safeguarded the intellectual property of creative neuroscience discoverers and inventors, and offered financial incentives for innovation. Today, however, the far-ranging scope of neuroscience patents may lead not only to obstacles to research, but to massive threats to personal rights, human dignity, and health data protection. Compounding this threat are notions about “mind reading” and "the transparent brain" arising from new capabilities of both invasive and non-invasive brain computer interfaces (BCIs) involving signal recording and regional tissue stimulation variously in healthy individuals, and patients with neurological and psychiatric disorders. Here we propose to use methods from legal scholarship and the social sciences to: (1) examine patents already granted, (2) classify them into the applicable patent law, (3) address the question of the viability of the patent law that applies to them, (4) elucidate perspectives about the desirability and pitfalls of patents pertaining to brain from neuroscientists, patent lawyers, and patent officers, and other expert informants, and (5) close identified gaps that are unfulfilled and may place individuals, patients and society at risk. The limited discourse to date on brain patents is thus extended fully through this work and will, above all, be brought into patent law and policy decision-making.

Open Science Initiative

Working closely with the International Neuroethics Patent Initiative team (see also prior section), we are gathering expert perspectives on neuroscience patents and intellectual property to inform the future of open science policy at the Djavad Mowafagian Centre for Brain Health. We will integrate findings from our local initiative with a nationwide and international effort.

Mend the Gap

Mend the Gap is an international effort devoted to developing a novel treatment for spinal cord injury that uses nerve regeneration. Key to its success is collaboration with the SCI community and an understanding of translation pathways, commercialization, and regulatory steps. As lead of the Ethics, Knowledge Translation and Patient Engagement arm of this effort, Dr. Judy Illes and her team will engage with individuals and stakeholders touched by SCI in new research to understand their values, perspectives, and priorities. The goal is to interface closely with the basic science teams and create models and tools for developing and communicating new treatments in a way that respects the heterogeneity of spinal cord injury, cultural and personal diversity, and autonomy.

For more information about Mend the Gap, please visit: https://mendthegap.ubc.ca/.

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 Agency: National Institutes of Health

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.

Social Co-creation of Robotic Assistive Technologies (SOCRATES)

Improving independence and quality of life for older adults can be realized by complementing human care with robotic assistive technologies. Social robots, defined as robots with a goal of providing assistance to human users through social interaction, are promising in their potential to support aging in place, and promote the cognitive health of older adults. A recent systematic review of controlled trials analyzing the impact of social robots on the well-being of older adults suggests that social robots can improve nine quality of life outcomes, including reducing loneliness, stress and anxiety. Despite these benefits, the adoption of robotics in older adult populations remains low due to concerns about technical readiness, user benefits, and immediate and long-term ethical and social impacts. The goal of the SOCRATES project is to create and test a holistic approach to social robot development that addresses key adoption barriers using an interdisciplinary, co-design methodology. Through two research aims, the SOCRATES project will involve the development of an affective social robot solutions specifically tailored to older adult needs and emotions, and will yield an evidence-based blueprint for effective and ethical technology co-creation. An innovative knowledge exchange platform will build on these deliverables and serve to ignite a conversation about the future of social robotics.

Funding Agency: Canada’s Tri-Council Agencies (SSHRC)

Co-creating an Outcome Measure For sOcial RoboTs in dementia care (COMFORT)

Social robots have the potential to improve independence and quality of life for persons living with dementia and their care partners. Although these devices are being deployed in many age-related contexts, tools that measure the impact of social robots in dementia care are lacking. This makes it difficult to determine whether social robots are truly useful and to compare between different devices. The COMFORT project will develop a validated outcome measure that will inform best practices and policies for social robot use in dementia care.
Funding Agency: Alzheimer’s Association

Socially Intelligent Devices Engineered with Kid-Centred Knowledge (SIDEKICK)

Social robots are devices that support a user through a social interaction. The goal of this project is to understand the unique perspectives of children, particularly children with anxiety, on social robots as potential sources of mental health support. Partnering with families with a lived experience of pediatric anxiety, we are developing co-creation workshops and child-robot interaction studies. This work will help us better understand how these products can be created and implemented to best align with end-users’ values and priorities.
Funding Agencies: NSERC, Michael Smith Health Research BC, BC SUPPORT Unit, BC Children’s Hospital

Social media and Parent-Adolescent Communication: An Exploratory Study (SPACES)

In a time where social media has become an integral part of adolescents’ lives, how are family conversations shaped by the constant flow of content adolescents are exposed to? How does one’s culture affect these conversations? What resources are needed to guide families when it comes to social media use and its impact? Many positive and negative effects of social media on adolescent behaviour and well-being have been identified, but little is known about how social media is changing conversations taking place at home between family members. While social media use and family communication varies across cultures, there is limited knowledge at the intersection of these three concepts. The main objectives of this project are to explore the cultural perspectives of parents and adolescents about the impact of social media on family communication and identify information needs in helping families navigating social media use.
Funding Agency: Canada’s Tri-Council Agencies (SSHRC)

Self-disclosure about dementia on social media: Toward evidence- informed guidance

Social media platforms are increasingly used by persons living with dementia and their caregivers as a space for information-seeking, sharing personal stories, raising awareness, and offering resources and support to others. Individuals who engage on social media often disclose a personal dementia diagnosis or identify as a caregiver, yet little is known about the impact of that disclosure. The goal of this project is to deliver an evidence-based resource to support decision-making around social media use in dementia, informed by in-depth analyses of lived experiences and online information quality.
Funding Agency: Alzheimer’s Association

Self-disclosure of mental illness on social media

Social media plays a significant role in the lives of children and adolescents, and exploring their online behaviours is critical to understanding overall youth developmental and mental health. Given that the self-disclosure of mental health information online is a newly popular phenomenon, this study aims to characterize the risks and benefits of its use among young people.
Funding Agency: BC Children’s Research Institute’s Brain, Behaviour, and Development Theme

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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

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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 (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

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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