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Informal Caregivers of Patients with Disorders of Consciousness: a Qualitative Study of Communication Experiences and Information Needs with Physicians. 意识障碍患者的非正式照顾者:与医生沟通经验和信息需求的定性研究。
IF 1.4 4区 哲学 Q1 ETHICS Pub Date : 2022-01-01 Epub Date: 2022-07-23 DOI: 10.1007/s12152-022-09503-0
Karoline Boegle, Marta Bassi, Angela Comanducci, Katja Kuehlmeyer, Philipp Oehl, Theresa Raiser, Martin Rosenfelder, Jaco Diego Sitt, Chiara Valota, Lina Willacker, Andreas Bender, Eva Grill

Due to improvements in medicine, the figures of patients with disorders of consciousness (DoC) are increasing. Diagnostics of DoC and prognostication of rehabilitation outcome is challenging but necessary to evaluate recovery potential and to decide on treatment options. Such decisions should be made by doctors and patients' surrogates based on medico-ethical principles. Meeting information needs and communicating effectively with caregivers as the patients´ most common surrogate-decision makers is crucial, and challenging when novel tech-nologies are introduced. This qualitative study aims to explore information needs of informal DoC caregivers, how they manage the obtained information and their perceptions and experiences with caregiver-physician communication in facilities that implemented innovative neurodiagnostics studies. In 2021, we conducted semi-structured interviews with nine caregivers of clinically stable DoC patients in two rehabilitation centers in Italy and Germany. Participants were selected based on consecutive purposeful sampling. Caregivers were recruited at the facilities after written informed consent. All interviews were recorded, transcribed verbatim and translated. For analysis, we used reflexive thematic analysis according to Braun & Clarke (2006). Caregivers experienced the conversations emotionally, generally based on the value of the information provided. They reported to seek positive information, comfort and empathy with-in the communication of results of examinations. They needed detailed information to gain a deep understanding and a clear picture of their loved-one's condition. The results suggest a mismatch between the perspectives of caregivers and the perspectives of medical profession-als, and stress the need for more elaborate approaches to the communication of results of neu-rodiagnostics studies.

Supplementary information: The online version contains supplementary material available at 10.1007/s12152-022-09503-0.

由于医学的进步,患有意识障碍(DoC)的患者人数正在增加。DoC的诊断和康复结果的预测具有挑战性,但对于评估康复潜力和决定治疗方案是必要的。这样的决定应该由医生和病人的代理人根据医学伦理原则做出。作为患者最常见的替代决策制定者,满足信息需求并与护理人员有效沟通是至关重要的,当引入新技术时,这也是一项挑战。本定性研究旨在探讨非正式DoC护理人员的信息需求,他们如何管理获得的信息,以及他们在实施创新神经诊断研究的设施中与护理人员-医生沟通的看法和经验。2021年,我们在意大利和德国的两家康复中心对9名临床稳定的DoC患者的护理人员进行了半结构化访谈。参与者的选择是基于连续的有目的的抽样。在获得书面知情同意后,在医院招募护理人员。所有采访都被记录下来,逐字抄写并翻译。为了进行分析,我们使用了Braun & Clarke(2006)的反身性主题分析。照顾者在情感上体验谈话,通常基于所提供信息的价值。据报道,他们在考试结果的交流中寻求积极的信息、安慰和同情。他们需要详细的信息来深入了解和清楚地了解他们所爱的人的情况。结果表明护理人员的观点和医疗专业人员的观点之间存在不匹配,并强调需要更详细的方法来交流新诊断研究的结果。补充信息:在线版本包含补充资料,可在10.1007/s12152-022-09503-0获得。
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引用次数: 4
The spectrum of responsibility ascription for end users of neurotechnologies. 神经技术最终用户的责任归属范围。
IF 1.4 4区 哲学 Q1 ETHICS Pub Date : 2021-12-01 Epub Date: 2021-02-28 DOI: 10.1007/s12152-021-09460-0
Andreas Schönau

Invasive neural devices offer novel prospects for motor rehabilitation on different levels of agentive behavior. From a functional perspective, they interact with, support, or enable human intentional actions in such a way that movement capabilities are regained. However, when there is a technical malfunction resulting in an unintended movement, the complexity of the relationship between the end user and the device sometimes makes it difficult to determine who is responsible for the outcome - a circumstance that has been coined as "responsibility gap" in the literature. So far, recent accounts frame this issue around the theme of control but more work is needed to explore the complicated terrain of assigning responsibility for neural device-mediated actions from this control perspective. This paper aims at contributing to this tendency by offering more fine-grained distinctions of how that control capacity is facilitated by the machine and how it can be exercised by the end user. This results in a novel framework that depicts an in-depth exploration of the control aspect of responsibility in a way that incorporates the diversity of relationships between neurotechnologies, the various conditions they treat, and the individual end user's experience.

有创神经装置为不同水平的代理行为的运动康复提供了新的前景。从功能的角度来看,它们以一种重新获得运动能力的方式与人类有意识的行为相互作用、支持或使之成为可能。然而,当出现技术故障导致意外移动时,最终用户和设备之间关系的复杂性有时会使确定谁对结果负责变得困难-这种情况在文献中被称为“责任鸿沟”。到目前为止,最近的研究都是围绕控制这一主题来阐述这一问题,但需要做更多的工作来探索从控制角度为神经装置介导的行为分配责任的复杂领域。本文旨在通过提供机器如何促进控制能力以及最终用户如何行使控制能力的更细粒度的区别来促进这种趋势。这产生了一个新的框架,以一种结合神经技术、它们治疗的各种条件和个人最终用户体验之间关系的多样性的方式,描绘了对责任控制方面的深入探索。
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引用次数: 4
Pharmacological Cognitive Enhancement and Cheapened Achievement: A New Dilemma 药理学认知增强和贬低成就:一个新的困境
IF 1.4 4区 哲学 Q1 ETHICS Pub Date : 2021-10-28 DOI: 10.1007/s12152-021-09477-5
E. Gordon, Lucy Dunn
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引用次数: 2
DBS and Autonomy: Clarifying the Role of Theoretical Neuroethics. 脑起搏器与自主性:阐明理论神经伦理学的作用。
IF 1.4 4区 哲学 Q1 ETHICS Pub Date : 2021-10-01 Epub Date: 2019-07-25 DOI: 10.1007/s12152-019-09417-4
Peter Zuk, Gabriel Lázaro-Muñoz

Gilbert, Viaña, and Ineichen call for further empirical work on the effects of deep brain stimulation (DBS) on personality, identity, agency, authenticity, autonomy and self (PIAAAS) (Gilbert et al. 2018a). In particular, they emphasize the need for more sophisticated instruments measuring potential changes in PIAAAS. The development of such instruments, they argue, will provide a stronger empirical foundation for theoretical neuroethics work on DBS. We agree with this proposal. However, we believe that theoretical neuroethics has an important role to play in advancing empirical neuroethics that is not emphasized in Gilbert et al.'s remarks on the relationship between empirical and theoretical neuroethics. The development of instruments for more fully assessing changes in PIAAAS will require significant clarification of its component concepts. This task of clarification is the purview of theoretical neuroethics. In this article, we sketch how theoretical neuroethics can clarify the concept of autonomy. We hope that this can both serve as a model for the conceptual clarification of other components of PIAAAS and contribute to the development of the empirical measures that Gilbert and colleagues propose.

Gilbert, Viaña和Ineichen呼吁对脑深部刺激(DBS)对人格、身份、代理、真实性、自主性和自我(PIAAAS)的影响进行进一步的实证研究(Gilbert et al. 2018a)。他们特别强调需要更复杂的仪器来测量PIAAAS的潜在变化。他们认为,这些工具的发展将为DBS的理论神经伦理学工作提供更强大的经验基础。我们同意这个建议。然而,我们认为理论神经伦理学在推进经验神经伦理学方面发挥着重要作用,而吉尔伯特等人对经验神经伦理学和理论神经伦理学之间关系的评论并没有强调这一点。为更充分地评估PIAAAS的变化而开发的工具将需要对其组成概念进行重大澄清。这个澄清的任务是理论神经伦理学的范围。在这篇文章中,我们概述了理论神经伦理学如何阐明自主性的概念。我们希望这既可以作为PIAAAS其他组成部分概念澄清的模型,也有助于吉尔伯特及其同事提出的实证措施的发展。
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引用次数: 15
Correction to: First Epileptic Seizure and Initial Diagnosis of Juvenile Myoclonus Epilepsy (JME) in a Transcranial Direct Current Stimulation (tDCS) Study– Ethical Analysis of a Clinical Case 更正:经颅直流电刺激(tDCS)研究中青少年肌阵挛性癫痫(JME)的首次癫痫发作和初步诊断-一个临床病例的伦理分析
IF 1.4 4区 哲学 Q1 ETHICS Pub Date : 2021-09-29 DOI: 10.1007/s12152-021-09476-6
Anna Sierawska,Vera Moliadze,Maike Splittgerber,Annette Rogge,Michael Siniatchkin,Alena Buyx
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引用次数: 0
Neuroparenting: the Myths and the Benefits. An Ethical Systematic Review 神经育儿:神话和好处。伦理系统评价
IF 1.4 4区 哲学 Q1 ETHICS Pub Date : 2021-09-27 DOI: 10.1007/s12152-021-09474-8
A. Snoek, D. Horstkötter
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引用次数: 0
Towards a Governance Framework for Brain Data 迈向大脑数据的治理框架
IF 1.4 4区 哲学 Q1 ETHICS Pub Date : 2021-09-24 DOI: 10.1007/s12152-022-09498-8
M. Ienca, J. Fins, R. Jox, F. Jotterand, S. Voeneky, R. Andorno, T. Ball, C. Castelluccia, Ricardo Chavarriaga, H. Chneiweiss, Agata Ferretti, O. Friedrich, S. Hurst, Grischa Merkel, Fruzsina Molnár-Gábor, Jean-Marc Rickli, J. Scheibner, E. Vayena, Rafael Yuste Philipp Kellmeyer
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引用次数: 20
An Afro-Communitarian Relational Approach to Brain Surrogates Research 脑替代物研究的非社群关系方法
IF 1.4 4区 哲学 Q1 ETHICS Pub Date : 2021-08-30 DOI: 10.1007/s12152-021-09475-7
L. Cordeiro‐Rodrigues, Cornelius Ewuoso
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引用次数: 3
The Impact of Dementia on the Self: Do We Consider Ourselves the Same as Others? 痴呆症对自我的影响:我们认为自己和别人一样吗?
IF 1.4 4区 哲学 Q1 ETHICS Pub Date : 2021-08-02 DOI: 10.1007/s12152-021-09472-w
Sophia A. Harris, A. Baird, Steve Matthews, J. Kennett, R. Gelding, Celia B. Harris
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引用次数: 0
Forensic Brain-Reading and Mental Privacy in European Human Rights Law: Foundations and Challenges. 欧洲人权法中的法医脑读取和精神隐私:基础与挑战》。
IF 2.6 4区 哲学 Q1 ETHICS Pub Date : 2021-07-01 Epub Date: 2020-06-20 DOI: 10.1007/s12152-020-09438-4
Sjors Ligthart, Thomas Douglas, Christoph Bublitz, Tijs Kooijmans, Gerben Meynen

A central question in the current neurolegal and neuroethical literature is how brain-reading technologies could contribute to criminal justice. Some of these technologies have already been deployed within different criminal justice systems in Europe, including Slovenia, Italy, England and Wales, and the Netherlands, typically to determine guilt, legal responsibility, or recidivism risk. In this regard, the question arises whether brain-reading could permissibly be used against the person's will. To provide adequate legal protection from such non-consensual brain-reading in the European legal context, ethicists have called for the recognition of a novel fundamental legal right to mental privacy. In this paper, we explore whether these ethical calls for recognising a novel legal right to mental privacy are necessary in the European context. We argue that a right to mental privacy could be derived from, or at least developed within in the jurisprudence of the European Court of Human Rights, and that introducing an additional fundamental right to protect against (forensic) brain-reading is not necessary. What is required, however, is a specification of the implications of existing rights for particular neurotechnologies and purposes.

当前神经法律和神经伦理文献的一个核心问题是读脑技术如何促进刑事司法。在斯洛文尼亚、意大利、英格兰和威尔士以及荷兰等欧洲国家的不同刑事司法系统中,已经部署了其中一些技术,通常用于判定犯罪、法律责任或累犯风险。在这方面出现的问题是,读脑技术是否可以在违背个人意愿的情况下使用。为了在欧洲法律背景下提供足够的法律保护,防止这种未经同意的读脑行为,伦理学家呼吁承认一种新的基本法律权利,即精神隐私权。在本文中,我们将探讨这些从伦理角度呼吁承认新的精神隐私法律权利的呼声在欧洲是否必要。我们认为,精神隐私权可以从欧洲人权法院的判例中衍生出来,或至少在欧洲人权法院的判例中得到发展,因此没有必要引入一项额外的基本权利来防止(法医)读脑。然而,所需要的是明确现有权利对特定神经技术和目的的影响。
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Neuroethics
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