Neuron, control thyself!

Rubin, Daniel B.; Paulk, Angelique C.

doi:10.1093/brain/awab413

Cited by 1 publication

(1 citation statement)

References 9 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Empirical neuroethics research is needed to better understand the attitudes of patients and families surrounding the optimal approach to involving research participants with emerging consciousness in the consent process, recognizing the pitfalls of assigning too much or too little weight to surrogate indicators of subjective attitudes ascertained through processed neural correlates. Efforts to restore functional communication through brain–computer interfaces and other assistive technologies in persons with covert consciousness are ongoing, and, in the future, they may aid in safeguarding the autonomy and welfare of these especially vulnerable persons and improve the ethical resilience of longitudinal DoC research programs [ 123 , 124 , 125 , 126 , 127 , 128 ].…”

Section: Preserving Patient Autonomy In Clinical Trials Involving Per...mentioning

confidence: 99%

Ethical Considerations in Clinical Trials for Disorders of Consciousness

2022

View full text Add to dashboard Cite

As the clinical trial landscape for patients with disorders of consciousness (DoC) expands, consideration of associated ethical challenges and opportunities is of ever-increasing importance. Responsible conduct of research in the vulnerable population of persons with DoC, including those with coma, vegetative state/unresponsive wakefulness syndrome (VS/UWS), minimally conscious state (MCS), covert cortical processing (CCP), and cognitive motor dissociation (CMD), demands proactive deliberation of unique ethical issues that may arise and the adoption of robust protections to safeguard patients, surrogates, and other key stakeholders. Here we identify and critically evaluate four central categories of ethical considerations in clinical trials involving participants with DoC: (1) autonomy, respect for persons and informed consent of individuals with liminal consciousness; (2) balancing unknown benefits and risks, especially considering the epistemological gap between behavior and consciousness that complicates ordinary ascription of subjective states; (3) disclosure to surrogates and clinical teams of investigational results pertaining to consciousness; and (4) justice considerations, including equitable access to clinical trial enrollment across communities and geographies. We outline guiding principles and research opportunities for clinicians, neuroethicists, and researchers engaged in DoC clinical trials to advance ethical study design and deployment in this complex yet crucial area of investigation.

show abstract