DECODE (Data-driven neuroEthics for COnsciousness DEtection) aims to develop an ethical approach to developing and deploying novel neurotechnologies to aid in the detection of consciousness and prediction of recovery after brain injury. Recent advances in neuroimaging and electrophysiologic techniques, including functional magnetic resonance imaging (fMRI) and electroencephalography (EEG), have yielded novel methods to aid in detecting and predicting emergence of consciousness in patients with brain injuries. Despite these unprecedented research advances, little is known about ethical concerns surrounding these novel neurotechnologies, about the phenomenological, ontological and ethical valence of conscious states of being without behaving revealed through their lens, or about the attitudes of clinicians, researchers, patients and caregivers regarding their responsible implementation. DECODE aims to fill these crucial knowledge gaps and to support the development of an evidence-based strategy for ensuring responsible research and translation of novel neurotechnologies to aid in the detection of consciousness and prediction of recovery after brain injury.
The above figure shows task-based functional MRI (fMRI) and EEG techniques being used by NICC researchers to identify brain activity in patients with acute severe traumatic brain injury. Figure adapted from Edlow, Chatelle et al. Brain 2017.
Selected DECODE Publications
Young, M.J., Bodien, Y.G., Giacino, J.T., Fins, J.J., Truog, R.D., Hochberg, L.R. and Edlow, B.L., 2021. The neuroethics of disorders of consciousness: a brief history of evolving ideas. Brain, 144(11), pp.3291-3310.
Lissak, I.A., Edlow, B.L., Rosenthal, E. and Young, M.J., 2023, October. Ethical considerations in neuroprognostication following acute brain injury. In Seminars in Neurology. 2024.
Lissak, India A., and Michael J. Young. "Limitation of life sustaining therapy in disorders of consciousness: ethics and practice." Brain (2024): awae060.
Young, M.J., Awad, A., Andreev, A., Bonkhoff, A.K., Schirmer, M.D., Dmytriw, A.A., Vranic, J.E., Rabinov, J.D., Doron, O., Stapleton, C.J. and Das, A.S., 2024. Characterizing coma in large vessel occlusion stroke. Journal of Neurology, pp.1-4.
Young MJ, Fecchio M, Bodien YG, Edlow BL. Covert cortical processing: a diagnosis in search of a definition. Neuroscience of Consciousness. 2024 Feb 1;2024(1):niad026.
Young MJ. Disorders of consciousness rehabilitation: Ethical dimensions and epistemic dilemmas. Physical Medicine and Rehabilitation Clinics. 2024 Feb 1;35(1):209-21.
Young MJ, Kazazian K, Fischer D, Lissak IA, Bodien YG, Edlow BL. Disclosing results of tests for covert consciousness: A framework for ethical translation. Neurocritical Care. 2024 Jan 19:1-4.
Young MJ, Edlow BL. The quest for covert consciousness: bringing neuroethics to the bedside. Neurology. 2021 May 11;96(19):893-6.
Young, Michael J., Brian L. Edlow, and Yelena G. Bodien. "Covert consciousness." NeuroRehabilitation. (2024): 1-20.
Young MJ, Sanders WR, Marujo R, Bodien YG, Edlow BL. Return to Work Within Four Months of Grade 3 Diffuse Axonal Injury. The Neurohospitalist. 2022 Apr;12(2):280-4.
Young MJ, Bodien YG, Freeman HJ, Fecchio M, Edlow BL. Toward uniform insurer coverage for functional MRI following severe brain injury. The Journal of Head Trauma Rehabilitation. 2023 Jul 1;38(4):351-7.
Young MJ, Bodien YG, Edlow BL. Ethical considerations in clinical trials for disorders of consciousness. Brain Sciences. 2022 Feb 2;12(2):211.
Choi WJ, Young MJ. Disambiguating consciousness in clinical settings. Neurology. 2023 Nov 14;101(20):896-900.
Coughlin B, Muñoz W, Kfir Y, Young MJ, Meszéna D, Jamali M, Caprara I, Hardstone R, Khanna A, Mustroph ML, Trautmann EM. Modified Neuropixels probes for recording human neurophysiology in the operating room. Nature Protocols. 2023 Oct;18(10):2927-53.
Lewis A, Young MJ, Rohaut B, Jox RJ, Claassen J, Creutzfeldt CJ, Illes J, Kirschen M, Trevick S, Fins JJ, Curing Coma Campaign and its Contributing Members. Ethics along the continuum of research involving persons with disorders of consciousness. Neurocritical Care. 2023 Dec;39(3):565-77.
Soldado-Magraner J, Antonietti A, French J, Higgins N, Young MJ, Larrivee D, Monteleone R. Applying the IEEE BRAIN neuroethics framework to intra-cortical brain-computer interfaces. Journal of Neural Engineering. 2024 Apr 4;21(2):022001.