An Ethical Approach to Detecting Covert Consciousness

项目摘要 床旁行为检查在可靠检测意识产生方面的不足 临床医生和家庭面临着关于继续维持生命治疗的决定的深刻困境， 意识障碍（DoC）患者的控制、诊断和资源分配。鉴于 早期意识行为恢复与长期功能结局的预后相关性， 病人是否被认为是有意识的，通常是维持生命治疗是否有效的主要决定因素。 是否继续，是否提供神经康复，以及保险是否提供持续的覆盖范围。而 仍处于研究的初级阶段，使用下一代神经技术，包括功能性磁 共振成像（fMRI）和脑电图（EEG）来寻找隐蔽意识（即， 在床边行为检查中检测不到的意识）在这个脆弱的人群中预示着一个 DoC患者诊断和管理的范式转变。因此，下一代神经技术 在最近更新的DoC实践中被认为是DoC患者的潜在诊断工具 美国神经病学学会的建议。同样，我们的研究小组最近表明， 神经技术可用于检测重症监护中急性DoC患者的内隐意识 单位尽管有这些研究进展，但对研究和使用的伦理问题知之甚少。 这些下一代神经技术和分享它们产生的敏感数据。由于数据涉及 意识的存在及其恢复的可能性通常会对决定是否 以及如何进行维持生命的护理，道德上知情和负责任地处理这些数据， 非常重要本项目将联合收割机与定性研究方法相结合，包括 半结构化访谈，回答两个问题：（a）什么是道德问题和相关观点 在关键利益相关者群体中，包括患者，代理人，临床医生和研究人员，围绕使用 新的神经技术来检测那些表现出行为无反应的病人的意识？(Aim第一章 和（B）这些关键利益相关者群体如何看待不确定数据共享的最佳方法 通过下一代神经技术产生的信息来检测意识？(Aim 2）。这些数据 将指导制定一个基于证据的框架，以进行道德上负责的研究和使用下一个- 第二代神经技术来检测意识（目标3），从而推进高优先级的大脑 考虑神经科学研究的伦理影响的倡议目标。

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.