Brain science creates a need for neuroethics
Judy Illes has a dilemma. What happens when someone who has agreed to participate in a medical study undergoes a brain scan during which the researcher happens to discover an anomaly, a potential health risk?
It’s a hypothetical quandary, but an example of the type of question Illes grapples with every day as the head of the National Core for Neuroethics at UBC.
“Say this person wants to do good and participate in a research study of the brain,” Illes says on the line from Mon-treal, where she’s attending meetings. “They’ve enrolled, fulfilled all the criteria, and they’re under the scanner, and the researcher—who’s not a physician—finds something suspicious, what we’d call an incidental finding.
“The problems there are huge,” she says. “Should the researcher show it to the person? If so, what are the physical implications? What about the psychological implications, the anxiety that person would experience? What about the cost of undergoing further tests? This is a big issue, one that really touches people when I talk about it. The questions are huge, and as to the answers, there’s not a consensus. But this kind of issue must be managed upfront in medical research.”
The field of neuroethics is relatively new, less than a decade old. However, organizations like the National Core for Neuroethics at UBC, which was formed in 2007, are becoming increasingly common. Such research bodies are being established in response to recent and remarkable advances in scientific understanding of the brain. Along with progress in such areas as genomics, molecular medicine, and brain disorders like addiction, depression, and dementia, however, come ethical challenges.
“What do we do when genetics can predict diseases of the brain in people who are presently completely healthy but know they are going to be hit with something 10, 20, 30 years down the road when there is no cure in sight?” Illes asks. “Technology is moving so fast. Neuroscience goes to the deep, ethical implications of what’s going on; it goes way beyond the institutional rules to get a protocol approved.
“On one hand, there’s a whole philosophy that we can apply science and the implications of science in a reactive way,” she adds. “Maybe the law comes in when adverse events have occurred. Then there becomes a sudden halt to science. We are looking to partner ethics right alongside neuroscience”¦to propel neuroscience further. We think that’s empowering.”
Illes, Canada research chair in neuroethics and a professor of neurology at UBC, is also a founding fellow of the university’s Institute of Mental Health. She is a cofounder of the international Neuroethics Society, editor of the American Journal of Bioethics: Neuroscience, and chair of Women in World Neuroscience for the International Brain Research Organization.
She explains that neuroethics pushes beyond the reach of bioethics—which also explores issues such as predicting disease and dealing with unintended consequences of research—by probing concepts like free will, personal responsibility, and decision-making.
The National Core for Neuroethics, a division of UBC’s Brain Research Centre, is involved in several research projects, including the international Neuroethics of Enhancement initiative. Led here by the centre’s codirector, psychiatrist Peter Reiner, the project will assess cross-cultural attitudes of doctors when it comes to prescribing cognitive enhancers. The normal cognitive decline that accompanies aging, although not a disease or disorder, can be problematic in a society that judges people by their smarts. Clinical trials are currently testing drugs designed to enhance cognition in “normal” individuals. If and when the drugs become available, the bur-den of prescription will fall on doctors. The aim of this research, which will take place in Canada and Germany and, possibly, Japan, the United Kingdom, and the United States, is to assess the views of doctors on prescribing medications designed to treat “normalcy”.
There’s a cultural dimension to neuroethical considerations as well.
The disease model of dementia, for instance, isn’t accepted in all cultures. Some First Nations groups view dementia-related cognitive decline as a means of communication during the transition from one life to the next. Such beliefs can shape attitudes about when medical treatment should be sought. Illes says that by taking into account such culturally relevant aspects of aging, neuroethics can help lead to relevant and respectful health care.
Other areas of interest to neuroethicists include the protection of privacy in the information age, the use of medicine in children with new or poorly understood forms of attention and mood disorders, and the ability to “peer” into a person’s brain to assess guilt or innocence.
Although there are people who are skeptical of the field of neuroethics, Illes says the number of those is diminishing.
“People who are critical sometimes say we are scaremongering, that we are anticipating things might go wrong where they might never go wrong,” Illes explains. “We’re not looking for things to go wrong. We’re looking for what’s right and how to put what’s right upfront on everyone’s table.”