This application addresses broad Challenge Area (02): Bioethics and specific Challenge Topic 02- OD(OSP)-101: Unique Ethical Issues Posed by Emerging Technologies. The current study examines the ethical challenges inherent in participants'considerations of control using Deep Brain Stimulation (DBS) for the treatment of Parkinson disease (PD) as a paradigm. Many historical and fictional stories have promulgated fears that brain stimulators necessarily impede a person's liberty and autonomy, particularly with respect to control. However, these stories offer only simple imaginative explorations that fail to engage the more important ethical challenges faced in the realities of contemporary medicine. A fundamental ethical tenet in medicine is to maximize and respect an individual's retention of bodily sovereignty, inherent in which is the concept of control. Three types of control are particularly important: symptom control, device control, and personal control. Symptom control refers to one's ability to alter disease symptoms, such as tremor. Device control refers to one's ability to adjust the actual stimulator settings. Personal control refers to one's ability to autonomously and volitionally act to achieve personal goals. Personal control is highly individualized and value laden which makes it ethically interesting and central to informed consent. Improvements in symptom control or stimulator control may not match improvements in personal control. In order to provide better informed consent it is important to recognize the challenges inherent in the shifting nature of personal control that occur before and after DBS therapy. We hypothesize that patients'goals for DBS include symptom, device and personal control elements with overarching goals related to increases in personal control over specific personal functions. The study employs a repeated measures design in which 50 participants with Parkinson Disease who are undergoing DBS will rate and rank symptom management and personal control with respect to specific individually tailored behaviors compared prior to surgery and at two time points following surgery (3 months and 6 months post-operative). We will also examine the role of potential cognitive and psychological variables in moderating changes in considerations of control following surgery. In addition to the quantitative measures, qualitative data gleaned from semi-structured interviews will assess themes in participants'values of control with respect to specific objectives. Deep Brain Stimulation may affect people's liberty and autonomy, particularly their control over bodily movements, thoughts, and feelings. The proposed study will provide data to improve the informed consent process that includes consideration of the fluid nature of participants'values. This study will also provide data to identify participants who require increased educational efforts in order to ensure informed consent. The current study examines the ethical challenges inherent in participants'considerations of control in the context of consent for Deep Brain Stimulation (DBS). These data will improve the informed consent process through careful deliberation of the fluid nature of participants'values related to personal control. This study will also provide data to identify participants who require increased educational efforts in order to ensure informed consent.
The current study examines the ethical challenges inherent in participants' considerations of control in the context of consent for Deep Brain Stimulation (DBS). These data will improve the informed consent process through careful deliberation of the fluid nature of participants'values related to personal control. This study will also provide data to identify participants who require increased educational efforts in order to ensure informed consent.
| Kubu, C S; Ford, P J (2012) Beyond Mere Symptom Relief in Deep Brain Stimulation: An Ethical Obligation for Multi-faceted Assessment of Outcome. AJOB Neurosci 3:44-49 |
