Dr. Judy Illes is a Professor of Neurology, Distinguished University Scholar, and UBC Distinguished Professor in Neuroethics. She is Director of Neuroethics Canada, and faculty in the Centre for Brain Health and at the Vancouver Coastal Health Research Institute. In addition to her primary appointment in the Faculty of Medicine at UBC, Dr. Illes holds associate appointments in Population and Public Health and in Journalism at UBC, and in the Department of Computer Science and Engineering at the University of Washington in Seattle, WA, USA. She recently ended her terms as Vice Chair of the Canadian Institutes of Health Research (CIHR) Advisory Board for the Institute on Neuroscience, Mental Health and Addiction, and for the CIHR Standing Committee on Ethics. Among many active roles, she is currently Director-at-Large of the Canadian Academy of Health Sciences, Chair of the International Brain Initiative and co-Lead of the Canadian Brain Research Strategy (www.canadianbrain.ca). She served as Vice Chair of the Standing Committee on Ethics of CIHR from 2013-2021. Dr. Illes held the Canada Research Chair in Neuroethics from 2007-2021.
1. What’s the first thing you do when you get to work in the morning?
It depends where I am, but usually I check the weather for the day, (see answer to Q2 below). Then, if I am at my central place at UBC hospital in my office, I get settled in by saying hello to everyone, turning on the lights, and checking my email. If I am working remotely from my beautiful mountain location in Whistler BC, I make make my breakfast and my coffee and read my email with my coffee, which is probably a very bad habit because there is a risk to starting the day with stress. But it's also a sign of how much I love my work, how passionate I am about neuroethics, and the people I get to work with.
2. What’s your work routine like?
In general, I work 7 days a week, which I love. My weekends are for hard copy catch-up and writing. During the week I have very long days where I try to incorporate with meditative exercises like walking my dog, going cross-country skiing, hiking, or yoga. These breaks help me refresh for the next period of intense working.
3. Are you involved in the theoretical, investigative, or the practical/translational aspect of neuroethics? Describe your research area briefly.
My involvement is in medical bioethics. Currently, I have a very big focus on the ethics of neurotechnology both in terms of where implantable and non-invasives like neurowearables are going for helping people with neurological and neuropsychiatric disorders. We have a big project going on around patents and ensuring that the way neurotechnology and other aspects of neuroscience are patented, safe for everyone, and enable access as opposed to prevent access. We are also paying close attention to concerns of privacy and dignity. We have a lot going on around the opioid crisis here in Canada and in the world, that has become acute especially since COVID, and a very large project going on concerning spinal cord injury. We typically neglect the spinal cord in neuroethics, but it is a part of the central nervous system and we are very lucky to be the ethics arm of a major project that is focused on developing new biomaterials. The goal is to help spinal cord nerves to find their way back after they've been severed and enable people to resume the kind of life that they had before their injury.
4. What’s a challenge that you face on a daily basis as a neuroethicist?
There is one main challenge, and that is still seeing ethics sidelined in mainstream medicine. Even though we've gained traction and credibility with the neuroscience community and biomedicine more broadly, the concept of neuroethics or ethics seems to still be the secondary consideration to other topics such as Alzheimer's Disease or neuroimaging or neuroinformatics or brain banks. We are working on trying to reverse this by always emphasising the far reach of our work and its transdisciplinarity, but this marginalisation still unfortunately exists. It's a daily battle.
5. How do you determine what questions deserve the most focus and attention in your work?
My focus is on people who are affected by a neurologic or mental health disorders. The numbers and costs to people and society are increasing. We have so much work to do, and we can empower the life sciences by providing good ethical frameworks, guidance, and practical thinking, and being anticipatory for precision medicine and different technologies. We need to be focusing on medical conditions of the central nervous system and I feel they should have priority over what I think are more theoretical considerations around mind reading and rights to thought privacy. The latter are also important to consider, but not at the expense of human suffering and quality of life in this chaotic world.
6. What do you wish more people understood about being a neuroethicist? Whether it be from a schooling, interest, or day-in-the-life point of view? Describe neuroethics in your own words.
Neuroethics is about providing a pathway through neuroscience to touch people in the most beneficial way. And that is a question of addressing people's brain biology combined with their values and priorities and interests, with all having equal weight. When combined, we have something that is efficient and meaningful for all people, especially when we take into consideration different cultures and languages, and definitions of disease and wellness. It is with the neuroethics component that I think neuroscience will really see its maximum potential in modern day.
7. What skills or training do you most frequently use in your work and how do you suggest more people gain these skills if they want to contribute to the field?
We primarily use qualitative methods in my laboratory but I think the whole range of methods that applyto human and behavioural research are relevant to neuroethics. Trainees ought to gain skills in the full range of methods and find the ones that work best for the research questions they want to ask and the different approaches they want to take to find answers. Paying attention to different perspectives and epistemologies is essential, whether they are western or Indigenous epistemologies. Respect for persons has to have full meaning, not just meaning for people from certain groups that have been traditionally favoured over those who have been historically neglected.
8. What do you love most about your work? What keeps you motivated?
I love my professional family most. Seeing the practical impact of my research and those I work with on policy, neuroscientists, clinicians, and others, keeps me motivated and is immensely rewarding.
9. What’s one thing you wished you did differently in your career trajectory?
I'd love to undo mistakes I've made along the way but we have to appreciate that mistakes and human error are normal. We have to be thoughtful and humble in stepping through our days and years systematically recognising where we've erred and ensure we don't hurt anyone along the way.
10. What’s one thing you could advice the next generation of neuroethicists?
To choose well, where well is defined by passion, in the many questions that lay ahead of us to answer. And to no be afraid to be nonlinear. You can address one question at a time, or several. Don't be afraid to move on. Take the time to have frequent reality checks: Is the research question still the right one? Is it still passionate? Whatever you do, do it well, at the highest level of excellence.
11. What’s the last thing you do when you leave work in the evening?
I wish my team a good evening and let them know I look forward to seeing them the next day, whether that will be by virtual means or in person. We will make it all work.
This post is part of the Neuroethics Today blog series 'A Day in the Life of a Neuroethicist' where we bring you answers to questions by junior and senior neuroethicists about a day in their life to give you a better idea of what neuroethicists do, what have they learned throughout their trajectory, and ways that you can do it too.
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