Neuroethics最新文献

{"title":"Privacy in perspective: research participants' priorities and concerns related to sharing data generated in human neuroscience studies.","authors":"Christi J Guerrini, Jill O Robinson, Norah L Crossnohere, Mary A Majumder, Kathryn Maxson Jones, Whitney Bash Brooks, Sameer A Sheth, Amy L McGuire","doi":"10.1007/s12152-025-09609-1","DOIUrl":"10.1007/s12152-025-09609-1","url":null,"abstract":"<p><p>The societal benefits from sharing and reusing data collected in human neuroscience studies are widely appreciated. However, there are persistent barriers to data sharing as well as privacy concerns related to unauthorized access, misuse, and reidentification of deidentified data. Thus far, few studies have been conducted with neuroscience research participants to understand their data sharing priorities and concerns. We conducted a survey utilizing an experimental design with N=52 participants in neuroscience studies funded by the U.S. National Institutes of Health representing diverse neurotechnologies and health conditions. Respondents prioritized sharing practices that maximize reuse of data to benefit patients and reduce the possibility of misuse of shared data. Most believed that both advancing research as quickly as possible and protecting their privacy are important. However, when forced to choose between these objectives, two-thirds of respondents believed that advancing research is most important. Reflecting on specific secondary use scenarios, the largest proportion of respondents were concerned about the possibility their shared brain data might be used to discriminate against them. On balance, respondents were less concerned about sharing their health information, including their brain imaging results, than sharing their online, spending, and location histories. The results affirm that data sharing with secondary researchers with the goal of helping patients by advancing research should remain a top priority and provide empirical support for legislation to prevent harms from misuse of sensitive personal data.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"18 2","pages":""},"PeriodicalIF":3.8,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12356284/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144876394","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}

{"title":"The \"wheels that keep me goin'\": invisible forms of support for brain pioneers.","authors":"Andrew Ivan Brown, Katherine E MacDuffie, Sara Goering, Eran Klein","doi":"10.1007/s12152-025-09593-6","DOIUrl":"10.1007/s12152-025-09593-6","url":null,"abstract":"<p><p>Research participants in long-term, first-in-human trials of implantable neural devices (i.e., brain pioneers) are critical to the success of the emerging field of neurotechnology. How these participants fare in studies can make or break a research program. Yet, their ability to enroll, participate, and seamlessly exit studies relies on both the support of family/caregivers and care from researchers that is often hidden from view. The present study offers an initial exploration of the different kinds of support that play a role in neural device trials from the perspectives of brain pioneers and their support partners (spouses, paid caregivers, parents, etc.). Using a mixed methods approach (semi-structured, open-ended interviews and a survey) with interpretive grounded theory, we present narratives from a study of six pioneers -- four in brain-computer interface (BCI) trials, and two in deep brain stimulation (DBS) trials -- and five support partners, about their experiences of being supported and supporting participants in implantable neural device studies. Our findings indicate the substantial amount of work involved on the part of pioneers - and some support partners - to make these studies successful. A central finding of the study is that non-logistical forms of support - social, emotional, and epistemic support - play a role, alongside more widely acknowledged forms of support, such as transportation and physical and clinical care. We argue that developing a better understanding of the kinds of support that enable neurotechnology studies to go well can help bridge the gap between abstract ethical principles of caring for subjects and on-the-ground practice.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"18 1","pages":""},"PeriodicalIF":2.6,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12165450/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144303353","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}

{"title":"To Explant or not to Explant Neural Implants: an Empirical Study into Deliberations of Dutch Research Ethics Committees.","authors":"Katherine Bassil, Karin Jongsma","doi":"10.1007/s12152-025-09619-z","DOIUrl":"10.1007/s12152-025-09619-z","url":null,"abstract":"<p><p>Neural implants such as brain-computer interfaces and spinal cord stimulation offer therapeutic prospects for people with neurological and psychiatric disorders. As neural devices are increasingly tested in clinical research, the decision to explant requires carefully weighing both known and unknown medical and psychological risks, necessitating a thorough evaluation of the benefits and risks of each available option. Research Ethics Committees (RECs) play an important role in assessing research protocols and determining the conditions under which neural implants should be explanted, yet little is understood about how RECs make these decisions. To better understand the role of RECs in explantation decisions of neural implants, we approached REC secretaries within the Netherlands via email, with a list of open-ended questions of which the explantation of neural devices, on informed consent and post-trial care and responsibilities, and psychological harm associated with such trials. The findings highlight the differential technology-specific safety assessments conducted for different types of neural devices. Variability was observed in plans regarding clinical follow-up, post-trial access, and explantation options. While RECs emphasized clear participant information on device maintenance and longevity, the timing of this disclosure varied. Additionally, the psychological impact of explantation was rarely addressed in REC assessments, indicating a gap in ethical oversight. These results shed light on some remaining gaps and suggest the need for improvement in achieving more consistent and comprehensive evaluations of neural device clinical trials, particularly regarding explantation and post-trial access.</p><p><strong>Supplementary information: </strong>The online version contains supplementary material available at 10.1007/s12152-025-09619-z.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"18 3","pages":"45"},"PeriodicalIF":3.8,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12513904/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145281444","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}

{"title":"Is the Treatment Worse than the Disease?: Key Stakeholders' Views about the Use of Psychiatric Electroceutical Interventions for Treatment-Resistant Depression.","authors":"Laura Y Cabrera, Robyn Bluhm, Aaron M McCright, Eric D Achtyes","doi":"10.1007/s12152-024-09573-2","DOIUrl":"https://doi.org/10.1007/s12152-024-09573-2","url":null,"abstract":"<p><p>Psychiatric electroceutical interventions (PEIs) use electrical or magnetic stimulation to treat psychiatric conditions. For depression therapy, PEIs include both approved treatment modalities, such as electroconvulsive therapy (ECT) and repetitive transcranial magnetic stimulation (rTMS), and experimental neurotechnologies, such as deep brain stimulation (DBS) and adaptive brain implants (ABIs). We present results from a survey-based experiment in which members of four relevant stakeholder groups (psychiatrists, patients with depression, caregivers of adults with depression, and the general public) assessed whether treatment with one of four PEIs (ECT, rTMS, DBS, or ABIs) was better or worse than living with treatment-resistant depression (TRD) and then provided a narrative explanation for their assessment. Overall, the prevalence of many narrative themes differed substantially by stakeholder group-with psychiatrists typically offering different reasons for their assessment than non-clinicians-but much less so by PEI modality. A large majority of all participants viewed their assigned PEI as better than living with TRD, with their reasons being a mix of positive views about the treatment and negative views about TRD. The minority of all participants who viewed their assigned PEI as worse than living with TRD tended to express negative affect toward it as well as emphasize its riskiness, negative side effects, and, to a lesser extent, its invasiveness. The richness of these narrative explanations enabled us to put in context and add depth to key patterns seen in recent survey-based research on PEIs.</p><p><strong>Supplementary information: </strong>The online version contains supplementary material available at 10.1007/s12152-024-09573-2.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"18 1","pages":"1"},"PeriodicalIF":2.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12041157/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143993598","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}

{"title":"Revolutionizing Brain Research Using Portable MRI in Field Settings: Public Perspectives on the Ethical and Legal Challenges.","authors":"Molly K Madzelan, Frances Lawrenz, Susan M Wolf, Francis X Shen","doi":"10.1007/s12152-025-09606-4","DOIUrl":"10.1007/s12152-025-09606-4","url":null,"abstract":"<p><strong>Introduction: </strong>New, highly portable MRI (pMRI) technology promises to revolutionize brain research by facilitating field-based studies that can expand research to new settings beyond the traditional MRI suite in a medical center. At this early stage of development, understanding public knowledge and attitudes about pMRI research is crucial.</p><p><strong>Objective: </strong>In this article we present the first empirical study of the general public's willingness to participate in pMRI research, and their perceptions of expected benefits and concerns.</p><p><strong>Methods & results: </strong>We conducted a nationally representative online survey (N = 2,001) administered Aug. 15-31, 2022. We found that respondents were overwhelmingly willing to participate in pMRI research, with no significant differences between five key demographic sub-groups: rural residents, older adults (65+), Hispanics, non-Hispanic Blacks, and those economically disadvantaged. Respondents saw many potential benefits (e.g., follow-up information about the study's results) and few concerns (e.g., insufficient payment) associated with participating.</p><p><strong>Conclusion: </strong>Such high public interest in participating confirms the importance of developing ethical guidance for pMRI research now, before that research rapidly expands. The results speak to the importance of minimizing the therapeutic misconception in pMRI research, as the survey reveals gaps in participant knowledge about the capabilities and limitations of pMRI devices to provide clinically informative scans. Our data showed that a lack of trust in scientists can reduce likelihood of participation, and thus researchers will need to engage participant communities to fully realize the potential of pMRI research to reach remote and historically underrepresented populations.</p><p><strong>Supplementary information: </strong>The online version contains supplementary material available at 10.1007/s12152-025-09606-4.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"18 2","pages":"36"},"PeriodicalIF":3.8,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12296799/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144734924","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}

{"title":"Data Hazards as An Ethical Toolkit for Neuroscience.","authors":"Susana Román García, Ceilidh Welsh, Nina H Di Cara, David C Sterratt, Nicola Romanò, Melanie I Stefan","doi":"10.1007/s12152-024-09580-3","DOIUrl":"10.1007/s12152-024-09580-3","url":null,"abstract":"<p><p>The Data Hazards framework (Zelenka, Di Cara, & Contributors, 2024) is intended to encourage thinking about the ethical implications of data science projects. It takes the form of community-designed data hazard labels, similar to warning labels on chemicals, that can encourage reflection and discussion on what ethical risks are associated with a project and how they can be mitigated. In this article, we explain how the Data Hazards framework can apply to neuroscience. We demonstrate how the hazard labels can be applied to one of our own projects, on the computational modelling of postsynaptic mechanisms.</p><p><strong>Graphical abstract: </strong></p><p><strong>Supplementary information: </strong>The online version contains supplementary material available at 10.1007/s12152-024-09580-3.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"18 1","pages":"15"},"PeriodicalIF":2.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11835915/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143469618","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}

{"title":"A Moratorium on Implantable Non-Medical Neurotech Until Effects on the Mind are Properly Understood.","authors":"Christoph Bublitz, Jennifer A Chandler, Fruzsina Molnár-Gábor, Marta Sosa Navarro, Philipp Kellmeyer, Surjo R Soekadar","doi":"10.1007/s12152-025-09612-6","DOIUrl":"https://doi.org/10.1007/s12152-025-09612-6","url":null,"abstract":"<p><p>The development of non-medical consumer neurotechnology is gaining momentum. As companies chart the course for future implanted and invasive brain-computer interfaces (BCIs) in non-medical populations, the time has come for concrete steps toward their regulation. We propose three measures: First, a mandatory Mental Impact Assessment that comprehensively screens for adverse mental effects of neurotechnologies under realistic use conditions needs to be developed and implemented. Second, until such an assessment is developed and further ethical concerns are effectively resolved, a moratorium on placing implantable non-medical devices on markets should be established. Third, implantable consumer neurotech for children should be banned. These measures are initial steps in a process seeking to define the necessary requirements for placing these devices on markets. They are grounded in a human rights-based approach to technology regulation that seeks to promote the interests protected by human rights while minimizing the risks posed to them. Neurotechnologies have the potential to profoundly alter cognitive, emotional, and other mental processes, with implications for the rights to mental health and integrity, and possibly for societal dynamics.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"18 3","pages":"46"},"PeriodicalIF":3.8,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12521269/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145309676","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}

{"title":"Responding to existential distress at the end of life: Psychedelics and psychedelic experiences and/ as medicine","authors":"Nathan Emmerich","doi":"10.1007/s12152-024-09571-4","DOIUrl":"https://doi.org/10.1007/s12152-024-09571-4","url":null,"abstract":"<p>This essay engages with the (re)emergence of psychedelic medicine and the idea of psychedelics drugs and the experiences they induce as a developing therapeutic modality. It does so in the context of the provision of psychedelics to terminally ill patients experiencing existential distress as they approach the end of their lives. Reflecting on such suggestions facilitates an examination of a specific aspect of psychedelics and/ as medicine (or palliative care), namely questions of meaning and meaninglessness. Understood as impacting one’s ability to make or <i>realise</i> meaning in life, existential distress commonly entails a degree of demoralisation. In some cases, individuals can be thought of as inhabiting (and being inhabited by) a sense of meaninglessness. In contrast, the experiences psychedelics seem to induce are often imbued with a great deal of meaning, a sense of which seems to continue long after the psychoactive effects of such drugs have ceased. Whilst briefly considering whether or not meaning can properly be thought of as a matter for healthcare or a medical concern, this paper seeks to highlight some of the implications that the advent of psychedelic medicine might have. By way of a conclusion, I enjoin bioethics in recognising itself as a meaningful cultural discourse that is implicated in the future(s) of medicine, psychedelics and being human.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"28 1","pages":""},"PeriodicalIF":1.4,"publicationDate":"2024-08-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142178236","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}

{"title":"Deep Brain Stimulation for Consciousness Disorders; Technical and Ethical Considerations","authors":"Alceste Deli, Alexander L. Green","doi":"10.1007/s12152-024-09570-5","DOIUrl":"https://doi.org/10.1007/s12152-024-09570-5","url":null,"abstract":"<p>Disorders of Consciousness (DoC) result in profound functional impairment, adversely affecting the lives of a predominantly younger patient population. Currently, effective treatment options for those who have reached chronicity (prolonged symptom duration over 4 weeks) are extremely limited, with the majority of such cases facing life-long dependence on carers and a poor quality of life. Here we briefly review the current evidence on caseload, diagnostic and management options in the United Kingdom (UK), United States of America (USA) and the European Union (EU). We identify key differences as well as similarities in these approaches across respective healthcare systems, highlighting unmet needs in this population. We subsequently present past efforts and the most recent advances in the field of surgical modulation of consciousness through implantable neurostimulation systems. We examine the ethical dilemmas that such a treatment approach may pose, proposing mediating solutions and methodological adjustments to address these concerns. Overall, we argue that there is a strong case for the utilisation of deep brain stimulation (DBS) in the DoC patient cohort. This is based on both promising results of recent clinical trials as well as technological developments. We propose a revitalization of surgical neuromodulation for DoC with a multicenter, multidisciplinary approach and strict monitoring guidelines, in order to not only advance treatment options but also ensure the safeguarding of patients’ welfare and dignity.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"77 1","pages":""},"PeriodicalIF":1.4,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141870617","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}

{"title":"Neurorights, Mental Privacy, and Mind Reading","authors":"Cohen Marcus Lionel Brown","doi":"10.1007/s12152-024-09568-z","DOIUrl":"https://doi.org/10.1007/s12152-024-09568-z","url":null,"abstract":"<p>A pressing worry in the ongoing neurorights debate is the language used to advocate for newly proposed rights. This paper addresses this concern by first examining the partial and ambiguous associations between mind reading and neurotechnology, often cited by advocates in support of the right to mental privacy. Secondly, it addresses the conceptual foundations of mind reading, distinguishing between natural, digital, and neurotechnological forms. These distinctions serve to highlight the normative parallels in privacy vulnerabilities between neurotechnology and other mind-reading methods, with an emphasis on multimodal digital systems. I suggest that authentic safeguards for the mental realm demand an expansion of the protective ambit beyond brain-targeted devices to recognize the spectrum of mind-reading applications. Ultimately, this urges re-evaluation of the scope and justification of a right to mental privacy owing to the need for coherent frameworks in an increasingly interconnected digital landscape.</p>","PeriodicalId":49255,"journal":{"name":"Neuroethics","volume":"29 1","pages":""},"PeriodicalIF":1.4,"publicationDate":"2024-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141567258","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}