This story was written as part of the Djavid Mowafaghian Centre for Brain Health 2019/2020 annual report. You can read the full report here.
When it comes to studying the brain, it’s essential to consider the many ethical questions that often arise. Neuroethics Canada is a research group that’s part of the Djavad Mowafaghian Centre for Brain Health and led by Dr. Judy Illes. This year, her team has worked on several projects, including the exciting launch of the Canadian Brain Research Strategy with a $1.5 million CIHR grant.
Dr. Illes is co-leading the strategy with Professor Yves de Koninck and early career researcher Dr. Caroline Menard at the University of Laval. It already involves more than 30 teams from across the country. Canada’s participation is part of a larger International Brain Initiative, which brings together the world’s major brain research projects, all aimed at better understanding the human brain and discovering new treatments to address neurological and psychiatric disorders.
“This funding has provided us with the opportunity to create a strategy that has a truly Canadian signature and draws upon our commitment to trans disciplinarity and our collaborative spirit,” says Dr. Illes. “We will focus on our early career researchers for capacity building in making this uniquely Canadian enterprise not only successful, but a way in which we can be global leaders in neuroscience.”
The Canadian Strategy will specifically look to address the question of how the brain learns, remembers and adapts. Understanding this is at the root of treating neurological and psychiatric disorders and neuroethics is a core part of answering these questions.
“Every strategy under the International Brain Initiative has a neuroethics component, but neuroethics is an anchor to Canada’s strategy rather than just a part of it,” says Dr. Illes. “This is definitely a unique strength.”
Another exciting project underway by the Neuroethics Canada team is exploring ethical issues facing families and clinicians when considering new treatment options for drug-resistant epilepsy in children.
Thirty per cent of children with epilepsy don’t respond to drugs, so neurotechnologies such as deep brain stimulation—where electrodes are implanted in the brain and send off electrical signals to prevent seizures— are currently being used. But there isn’t much research around some of the ethical issues this presents in children.
“When it comes to children whose brains and bodies are still developing, how can people conceivably make decisions about invasive brain procedures without guidance?” says Dr. Illes, who is a leader in this area and gave a TEDx Talk on it earlier this year. “This is what we’re trying to address, and what’s incredibly important about our method is that we’re drawing on guidance from groups of people who are directly impacted.”
Moving into their third year of funding, the team intends to develop a multimedia tool that will inform affected children, care givers and clinicians of the ethical questions and values they should consider when it comes to these advanced neurotechnology treatments. The team is also looking at access and cultural sensitivity of these technologies in Indigenous communities.