An Ethical Approach to Detecting Covert Consciousness

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Project Summary Alarming shortcomings of the bedside behavioral examination in reliably detecting consciousness generate profound dilemmas for clinicians and families facing decisions about continuation of life-sustaining therapy, pain control, prognostication, and resource allocation in patients with disorders of consciousness (DoC). Given the prognostic relevance of early behavioral recovery of consciousness for long-term functional outcomes, whether or not a patient is considered conscious is often the primary determinant of whether life-sustaining therapy is continued, whether neurorehabilitation is offered, and whether insurance provides continued coverage. While still in nascent stages of research, use of next-generation neurotechnologies including functional magnetic resonance imaging (fMRI) and electroencephalography (EEG) to search for covert consciousness (i.e. consciousness that is undetectable on bedside behavioral examination) in this vulnerable population portends a paradigm shift in diagnosis and management of patients with DoC. As such, next-generation neurotechnologies were recognized as potential diagnostic tools for patients with DoC in the recently updated DoC Practice Recommendations of the American Academy of Neurology. Similarly, our group recently showed that advanced neurotechnologies can be used to detect covert consciousness in patients with acute DoC in the intensive care unit. Despite these research advances, little is known about ethical concerns surrounding research and use of these next-generation neurotechnologies and sharing of the sensitive data that they yield. Since data pertaining to presence of consciousness and its likelihood of recovery will often be uniquely influential in deciding whether and how to proceed with life-sustaining care, ethically-informed and responsible handling of these data is of immense importance. This project will combine ethical analysis with qualitative research methodology including semi-structured interviews to answer two questions: (a) What are the ethical concerns and related perspectives among key stakeholder groups, including patients, surrogates, clinicians, and researchers, surrounding the use of novel neurotechnologies to detect consciousness in patients who appear behaviorally unresponsive? (Aim 1) and (b) How do these key stakeholder groups perceive the optimal approach to data-sharing of uncertain information generated through next-generation neurotechnologies to detect consciousness? (Aim 2). These data will guide the development of an evidence-based framework for ethically-responsible research and use of next- generation neurotechnologies to detect consciousness (Aim 3), and thus advance the high-priority BRAIN Initiative goal of considering ethical implications of neuroscience research.