Pub Date : 2022-01-01Epub Date: 2022-07-23DOI: 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.
{"title":"Informal Caregivers of Patients with Disorders of Consciousness: a Qualitative Study of Communication Experiences and Information Needs with Physicians.","authors":"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","doi":"10.1007/s12152-022-09503-0","DOIUrl":"https://doi.org/10.1007/s12152-022-09503-0","url":null,"abstract":"<p><p>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.</p><p><strong>Supplementary information: </strong>The online version contains supplementary material available at 10.1007/s12152-022-09503-0.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":" ","pages":"24"},"PeriodicalIF":1.4,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9307713/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40574406","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-12-01Epub Date: 2021-02-28DOI: 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.
{"title":"The spectrum of responsibility ascription for end users of neurotechnologies.","authors":"Andreas Schönau","doi":"10.1007/s12152-021-09460-0","DOIUrl":"https://doi.org/10.1007/s12152-021-09460-0","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"14 3","pages":"423-435"},"PeriodicalIF":1.4,"publicationDate":"2021-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1007/s12152-021-09460-0","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39739961","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-10-01Epub Date: 2019-07-25DOI: 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。
{"title":"DBS and Autonomy: Clarifying the Role of Theoretical Neuroethics.","authors":"Peter Zuk, Gabriel Lázaro-Muñoz","doi":"10.1007/s12152-019-09417-4","DOIUrl":"https://doi.org/10.1007/s12152-019-09417-4","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"14 Suppl 1","pages":"83-93"},"PeriodicalIF":1.4,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1007/s12152-019-09417-4","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39703906","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-09-29DOI: 10.1007/s12152-021-09476-6
Anna Sierawska,Vera Moliadze,Maike Splittgerber,Annette Rogge,Michael Siniatchkin,Alena Buyx
{"title":"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","authors":"Anna Sierawska,Vera Moliadze,Maike Splittgerber,Annette Rogge,Michael Siniatchkin,Alena Buyx","doi":"10.1007/s12152-021-09476-6","DOIUrl":"https://doi.org/10.1007/s12152-021-09476-6","url":null,"abstract":"","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"9 1","pages":"575-576"},"PeriodicalIF":1.4,"publicationDate":"2021-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138536806","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-09-27DOI: 10.1007/s12152-021-09474-8
A. Snoek, D. Horstkötter
{"title":"Neuroparenting: the Myths and the Benefits. An Ethical Systematic Review","authors":"A. Snoek, D. Horstkötter","doi":"10.1007/s12152-021-09474-8","DOIUrl":"https://doi.org/10.1007/s12152-021-09474-8","url":null,"abstract":"","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"14 1","pages":"387 - 408"},"PeriodicalIF":1.4,"publicationDate":"2021-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42843671","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-09-24DOI: 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
{"title":"Towards a Governance Framework for Brain Data","authors":"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","doi":"10.1007/s12152-022-09498-8","DOIUrl":"https://doi.org/10.1007/s12152-022-09498-8","url":null,"abstract":"","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"15 1","pages":""},"PeriodicalIF":1.4,"publicationDate":"2021-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46498538","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-08-02DOI: 10.1007/s12152-021-09472-w
Sophia A. Harris, A. Baird, Steve Matthews, J. Kennett, R. Gelding, Celia B. Harris
{"title":"The Impact of Dementia on the Self: Do We Consider Ourselves the Same as Others?","authors":"Sophia A. Harris, A. Baird, Steve Matthews, J. Kennett, R. Gelding, Celia B. Harris","doi":"10.1007/s12152-021-09472-w","DOIUrl":"https://doi.org/10.1007/s12152-021-09472-w","url":null,"abstract":"","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"14 1","pages":"281 - 294"},"PeriodicalIF":1.4,"publicationDate":"2021-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1007/s12152-021-09472-w","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48615003","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-07-01Epub Date: 2020-06-20DOI: 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.
{"title":"Forensic Brain-Reading and Mental Privacy in European Human Rights Law: Foundations and Challenges.","authors":"Sjors Ligthart, Thomas Douglas, Christoph Bublitz, Tijs Kooijmans, Gerben Meynen","doi":"10.1007/s12152-020-09438-4","DOIUrl":"10.1007/s12152-020-09438-4","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"14 ","pages":"191-203"},"PeriodicalIF":2.6,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7612400/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39939734","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}