Ethics of functional neuroimaging at bedside
Can functional neuroimaging, which is currently used largely in the research setting, be used as a clinically actionable tool for disorders of consciousness? “This is an important and a loaded topic,” says Judy Illes, PhD, FRSC, FCAHS, Canada Research Chair in Neuroethics and professor of neurology at the University of British Columbia in Vancouver, Canada.
Illes and colleagues received a grant from the Canadian Institutes of Health Research specifically to explore the issues around neuroimaging and loss of consciousness. The team developed a framework for how to address the ethical issues involved.1
“We looked at what variables we need to think about to ensure the ethical translation of the technology, and what we might learn from the research even if it doesn’t prove to have clinical utility,” says Illes. “Our whole approach is a very rigorous systematic analysis that is very solution-oriented. We are always looking for solutions, even as we identify challenges and risk.” As for what it would take for functional neuroimaging to be clinically actionable, Illes says these are three questions to consider:
1. What is the technical feasibility?
Magnetic resonance imaging scans are widely available in the United States, less so in Canada, and extremely limited in under-resourced parts of the world. “Colleagues are trying to develop an EEG-based technology, which has been around since the 1920s. It is very portable and could conceivably be available in the home, if we ever get to that point,” Illes says.
2. If it’s technically feasible, will it result in a significant change in outcome?
“The question turns on how if, in fact, we were able to reliably and reproducibly elicit signals from individuals in a disordered state of consciousness, how we would act on this,” says Illes. Patients could communicate about levels of pain, preferences for food and music, and life decision-making, for instance.
3. If it will result in a significant change in outcome, can it be incorporated into the clinical environment ethically, socially, legally, and in an economically feasible way?
The question is to what extent complex communications might be enabled between people who have lost that ability with the outside world, a family member, health care provider, or even a lawyer looking after the person’s affairs. “Here, it becomes very complicated. These are complex phenomena and we are looking at them in detail,” she says.
The researchers interviewed experts in the areas of disorders of consciousness, physicians in direct contact with individuals in a disordered state of consciousness, ethicists and lawyers with expertise in this area, and researchers, to learn their major ethical concerns.
“We just completed this analysis, and the problem is not as binary as we had envisioned it,” says Illes. “The problem is really a continuum of phenomena. The solutions are not black and white with one side ‘yes’ and one side ‘no.’”
Bioethicists can play a role in ensuring that the public, while attuned to advances in technology, is also aware of the limitations and risks involved. “When a topic is very hot, the level of caution needs to escalate proportionately to the level of interest,” Illes underscores. “When there are enormous tensions between clinical potential and research desires, it’s important for bioethicists to be unafraid to be open and transparent with patients and families about the state of the art.”
This is the case whether bioethicists are discussing neuroimaging technology for level of consciousness, liberation therapy for multiple sclerosis, or supplements for children with neurodevelopmental disorders. “It’s a daily challenge for bioethicists that we appreciate immensely,” says Illes. “The best we can do is bring really good empirical data so that bioethicists can operate in an evidence-informed way.”
1. Lee G, Byram AC, Stables, C, et al. A framework for assessing the clinical actionability of functional neuroimaging for disorders of consciousness. Presented at the International Neuroethics Society, New Orleans, October 2012.
• Judy Illes, PhD, FRSC, FCAHS, Professor of Neurology, The University of British Columbia, Vancouver, Canada. Phone: (604) 822-0746. E-mail: email@example.com.