Presentation Title: “Discussion on Authentic/Real Self and Life - Human-machine Interactions based on DBS patients' experience”

Abstract:

The development of neuroscience and technology is opening a new chapter in our lives. As our understanding of the human brain expands, applications are also diversifying. Advances in neuroscience and technology have us reconsider sacred human values, such as identity, privacy, and agency. The field of neuroethics, which has emerged as a field to discuss those issues properly, requires not only an ethical perspective but also interdisciplinary approaches including legal, social, and cultural.

 In this vein, deep brain stimulation is one of the debatable issues in neuroethics. Deep brain stimulation is a medical treatment that interferes with the brain in an invasive way, giving direct electrical stimulation to the structure for controlling abnormal symptoms. Deep brain stimulation is being used to treat diseases such as Parkinson's and obsessive-compulsive disorder. Also, research and development are underway to use it to treat other diseases, for instance, Alzheimer's and addiction, which are difficult to treat to this day. Attempts to control symptoms by stimulating the brain directly raise related neuroethical issues not only its efficacy and safety but also side effects caused by this, particularly changes in personality, identity, agency, autonomy, authenticity, and self (PIAAAS), which have been reported and discussed. However, very limited research on the experiences of those who have undergone deep brain stimulation is available. There are even less related studies in South Korea.

 I conducted in-depth interview study to investigate ethical issues related to PIAAAS for 17 Parkinson’s disease patients who undergoing the DBS treatment. The study shows that most patients who underwent deep brain stimulation have improved their symptoms. After surgery, patients live with the stimulation of electrodes implanted in the brain. The symptoms have improved compared to before, but life with the brain stimulation device is very different from life before surgery. Discharge of the battery or malfunction of the device may turn off the electric stimulation and this brings them back to their tragic life before the surgery. After undergoing disease and surgery, patients rethink the meaning of themselves and their bodies and thus redefine the perception of ‘self’ once again in daily life with the implanted device.

 The experience of the patients who received deep brain stimulation is meaningful because it suggests that s/he can be and live one’s authentic/real self even with the implanted device and direct brain stimulation. This leads us to a question, of what ‘the authentic/real self’ is. Further, it challenges us to think over again about our perspective of the machine that interacted directly with the brain(mind and/or body); does it just coexist with self? or symbiosis with self?