Neuroethics最新文献

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.

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.

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.

Supplementary information: The online version contains supplementary material available at 10.1007/s12152-025-09619-z.

One central principle often derived from the right to freedom of thought (RFoT) is that persons' inner thoughts shall not be impermissibly altered. Since a clear definition of 'impermissible alteration' of thought is lacking, the meaning and scope of this principle are largely uncertain. Scholars are now exploring how to operationalise the notion of 'impermissible alteration' of thought. For this, some have appealed to the concept of 'manipulation', proposing that mind interventions plausibly infringe the RFoT if they are manipulative. This paper argues that the appeal to manipulation is unpersuasive. It explores the potential of the distinct notion of exploitation, which is, unlike manipulation, an international legal concept that underpins absolute prohibitions in human rights law.

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.

Supplementary information: The online version contains supplementary material available at 10.1007/s12152-024-09573-2.

Introduction: 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.

Objective: 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.

Methods & results: 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.

Conclusion: 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.

Supplementary information: The online version contains supplementary material available at 10.1007/s12152-025-09606-4.

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.

Graphical abstract:

Supplementary information: The online version contains supplementary material available at 10.1007/s12152-024-09580-3.

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.

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 realise 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.