Disclosing Results of Tests for Covert Consciousness: A Framework for Ethical Translation

Abstract

The advent of neurotechnologies including advanced functional magnetic resonance imaging and electroencephalography to detect states of awareness not detectable by traditional bedside neurobehavioral techniques (i.e., covert consciousness) promises to transform neuroscience research and clinical practice for patients with brain injury. As these interventions progress from research tools into actionable, guideline-endorsed clinical tests, ethical guidance for clinicians on how to responsibly communicate the sensitive results they yield is crucial yet remains underdeveloped. Drawing on insights from empirical and theoretical neuroethics research and our clinical experience with advanced neurotechnologies to detect consciousness in behaviorally unresponsive patients, we critically evaluate ethical promises and perils associated with disclosing the results of clinical covert consciousness assessments and describe a semistructured approach to responsible data sharing to mitigate potential risks.

Keywords: Cognitive motor dissociation; Coma; Covert consciousness; Disorders of consciousness; Electroencephalography; Functional magnetic resonance imaging; Minimally conscious state; Neuroethics; Unresponsive wakefulness syndrome; Vegetative state.

Fig. 1

Emerging paradigms for precision assessment of disorders of consciousness. Three general varieties of advanced neurotechnologies may be used to evaluate residual brain function in patients with disorders of consciousness: resting-state measures, passive stimulus-based techniques, and active covert command-following (task-based) techniques. Currently, only the latter category (active task-based tests) may be dispositive of covert consciousness (viz., cognitive motor dissociation) when a patient displays willful modulation of brain activity in response to commands. Task-based fMRI example (bottom right) adapted with permission from Edlow et al. [6]. Created with BioRender. CRS-R Coma Recovery Scale–Revised [36], DoC disorder of consciousness; EEG electroencephalography, fMRI functional magnetic resonance imaging, MBTr revised Motor Behavior Tool [37], rsfMRI resting-state fMRI