Patients who have undergone deep brain stimulation (DBS) for emerging indications have unique perspectives on ethical challenges that may shape trial design and identify key design features for BCI-driven DBS systems. DBS research in cognitive and emotional disorders has generated significant ethical interest. Much of this work has focused on developing ethical guidelines and recommendations for open-loop DBS systems. While early trials of open-loop DBS for depression gave disappointing results, research is moving toward clinical trials with closed-loop or patient-controllable DBS systems that may modulate aspects of personality and emotion. Though user-centered design is an increasingly important principle in neurotechnology, the perspectives of implanted individuals on ethical issues raised by DBS are poorly understood. We solicited those perspectives through a focus group and set of qualitative interviews of participants in trials of DBS for depression and obsessive-compulsive disorder. We identified four major themes: control over device function, authentic self, relationship effects, and meaningful consent. Each has implications for the design of closed-loop systems for non-motor disorders.
Bibliographical noteFunding Information:
The work of Dr. Klein and Dr. Goering was supported by Award Number EEC-1028725 from the National Science Foundation. Dr. Widge gratefully acknowledges research support from the MGH-MIT Strategic Initiative, Brain & Behavior Research Foundation, and Harvard Brain Institute Bipolar Disorder Seed Fund.
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- deep brain stimulation
- end-user perspectives