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

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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.

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Acknowledgements

The authors acknowledge and dedicate this work to patients affected by DoCs and their devoted caregivers, including members of the Patient and Family Advisory Board of the Laboratory for NeuroImaging of Coma and Consciousness.

Funding

Supported by the National Institutes of Health (NIH) BRAIN Initiative (F32MH123001); the NIH Director’s Office (DP2HD101400); the National Institute on Disability, Independent Living, and Rehabilitation Research; the Administration for Community Living (90DPTB0011, 90DP0039); the American Academy of Neurology (AAN) Palatucci Advocacy Award; the NIH Common Fund’s Bridge2AI “Patient-Focused Collaborative Hospital Repository Uniting Standards (CHoRUS) for Equitable AI” project (OT2OD0327-01); and the Chen Institute Massachusetts General Hospital Research Scholar Award. The content is solely the responsibility of the authors and does not necessarily represent the official views of the AAN, the NIH, or the US Government. The funders had no role in the design, analysis, preparation, review, approval, or decision to submit this manuscript for publication.

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Authors and Affiliations

  1. Center for Neurotechnology and Neurorecovery, Department of Neurology, Massachusetts General Hospital and Harvard Medical School, 101 Merrimac Street, Suite 310, Boston, MA, 02114, USA

    Michael J. Young, Karnig Kazazian, India A. Lissak, Yelena G. Bodien & Brian L. Edlow

  2. Western Institute of Neuroscience, Western University, London, ON, Canada

    Karnig Kazazian

  3. University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA

    David Fischer

  4. Athinoula A. Martinos Center for Biomedical Imaging, Massachusetts General Hospital and Harvard Medical School, Charlestown, MA, USA

    Brian L. Edlow

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  1. Michael J. Young
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Dr. Young wrote the initial draft of the manuscript. All authors contributed to conceptualization, drafting, editing, and reviewing of the manuscript.

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Correspondence to Michael J. Young.

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Young, M.J., Kazazian, K., Fischer, D. et al. Disclosing Results of Tests for Covert Consciousness: A Framework for Ethical Translation. Neurocrit Care (2024). https://doi.org/10.1007/s12028-023-01899-8

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