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.

Public Health Relevance

Patients with disorders of consciousness (DoC) may be misdiagnosed as unconscious up to 40% of the time when traditional qualitative bedside examination is used, and the shortcomings of bedside 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. Novel neuroimaging and electrophysiologic tools that aim to improve diagnostic accuracy for patients with DoC are now under investigation, yet little is known about ethical concerns surrounding these tools and the attitudes of clinicians, researchers, patients, and families regarding their implementation, including their potential to generate false- hope or to reinforce false-despair. Responding directly to the high-priority BRAIN Initiative goal of considering ethical implications of neuroscience research, this project will (a) identify and evaluate underexplored ethical issues raised by research on next-generation neurotechnologies to detect consciousness in patients with DoC, (b) ascertain key stakeholder perspectives regarding these neurotechnologies, and (c) support the development of an evidence-based ethical framework for ethically-responsible research and use of next-generation neurotechnologies to detect consciousness in settings of diagnostic and prognostic uncertainty.

Agency
National Institute of Health (NIH)
Institute
National Institute of Mental Health (NIMH)
Type
Postdoctoral Individual National Research Service Award (F32)
Project #
1F32MH123001-01
Application #
9990274
Study Section
Special Emphasis Panel (ZMH1)
Program Officer
Van'T Veer, Ashlee V
Project Start
2021-02-18
Project End
2023-02-17
Budget Start
2021-02-18
Budget End
2022-02-17
Support Year
1
Fiscal Year
2020
Total Cost
Indirect Cost
Name
Massachusetts General Hospital
Department
Type
DUNS #
073130411
City
Boston
State
MA
Country
United States
Zip Code