Ethically Translating Novel Neurotechnologies for Detecting Covert Consciousness: Clinician Perspectives from an Interim Analysis of the DECODE Study
Michael Young1, India Lissak2, Yelena Bodien3, Leigh Hochberg4, Brian Edlow2
1Massachusetts General Hospital, Brigham, Harvard, 2MGH, 3Spaulding Rehabilitation Hospital, 4Massachusetts General Hospital
Objective:
To develop an ethical framework for responsible clinical translation of novel neurotechnologies to detect covert consciousness in patients following severe brain injury.
Background:

Up to 20% of behaviorally unresponsive patients following severe brain injury may harbor covert awareness that evades detection via bedside examination, but which may be identified through advanced neurotechnologies including task-based or stimulus-based EEG and functional MRI. However, questions surrounding how to optimally deploy these neurotechnologies, communicate results, and translate findings into clinical practice are crucially underexplored. 

Design/Methods:
Semi-structured interviews with 14 clinicians were conducted as part of DECODE (Data-driven neuroEthics for COnsciousness DEtection). Qualitative research methodology utilizing grounded theory and empirical neuroethics analysis were used to capture salient concerns and perspectives among clinicians surrounding the ethics of deploying and responsibly sharing results of advanced neurotechnologies to detect consciousness in patients with disorders of consciousness (DoC).
Results:
Clinicians with expertise caring for patients with DoC in diverse practice settings displayed varied ethical, clinical and philosophical perspectives surrounding the optimal use of neurotechnologies to detect consciousness in patients following brain injury. A general consensus was noted surrounding ethical obligations to ensure equitable access and communicate test results from novel neurotechnologies with families/surrogates, however, significant differences were observed in how clinicians perceived optimally contextualizing and conveying such information to surrogates/family members. Furthermore, divergent perspectives were highlighted surrounding optimum methods of clinical translation as well as which patients could benefit from the use of neurotechnologies for covert consciousness detection.
Conclusions:
Salient ethical themes emerging from interim analyses of interviews with clinicians revealed substantial variation in ethical perspectives on how to most effectively deploy these neurotechnologies in clinical practice.  Further study is necessary and planned to capture perspectives of individuals from other stakeholder groups, including patients, surrogates and researchers, to inform the creation of a harmonized neuroethical framework for responsible clinical translation of these neurotechnologies.
10.1212/WNL.0000000000204222