“It’s not that you can’t find your keys, it’s that you don’t know what do to with them once you have them.” (Author’s mother, age 89)
Judy Illes is a professor of Neurology, Canada Research Chair in Neuroethics and Director of the National Core for Neuroethics
As the old saying that goes, there are only two things in life that are truly predictable: taxes and death. Also predictable, albeit with less certainty, is that as we age over time, we are likely to experience memory loss. Some of us will have no more than benign age-related “senior moments” when we simply forget things that we were once able to keep in mind with no problem at all. Others will suffer a more profound loss of an entire system of cognitive abilities: memories, decision-making, and personality.
Advances in the brain sciences with genetics and brain scanning today are allowing us to identify associations for the more serious form, which is often related to Alzheimer’s Disease, and support a potentially evolving ability to foresee it. With growing predictive capabilities on the one hand but cure still an elusive goal, the ethical challenges for people and society are enormous.
Today, testing for susceptibility genes such as the apolipoprotein E (APOE) 4 allele for Alzheimer’s, and powerful brain scanning techniques that can show variations in how different regions of the human brain are functioning in rest and in response to signals from the environment, have been joined to form a new research approach called imaging genetics. The power of this combined neurotechnology lies in its potential to reduce the statistical uncertainty about future disease states, even before the behavioral symptoms of Alzheimer’s for example, and the plaques and tangles in the brain are evident. In parallel, therefore, it also has to powerful potential to reveal previously undifferentiated subtypes of disease, and guide strategies for tracking and early, and perhaps even tailored intervention. Overall, the sum of the parts with imaging genetics will likely be greater than the whole.
While there still remains much to be learned, one point seems certain: like other successful innovations in genetics and neuroscience, there will be an increased use of imaging genetics in the years to come. The anticipated surge in scientific activity will be accompanied by a similar surge in ethics-based challenges related to personal privacy, autonomy and life planning.
Our culture and values define the nature of the benefits and risks that science and medicine bring forward, dictate methods that must be in place to assure the maximum safety, comfort, and protection of participants and patients in research and clinical care, and inform society’s responses through policies for the allocation of health care resources, education, and outreach. With advances in imaging genetics, the big questions will only get bigger: Do you want to know? How would you use the information? Who else would you want to know? Now is the time to anticipate these questions and address them.