Natalie Dorfman

Barnes et al. (2025) emphasize the need for current biobanking consent models to more deeply engage participants who want to determine how their data are used. Despite agreeing with the authors on wanting to make biobanking data more private and secure, we identify deep moral difficulties with their article on two levels. On one level, we worry that the authors have not engaged deeply enough with many of the central challenges debated in the AI literature. And on a different level, rather than critically examining the use of novel technological methods for managing biobanking data, the article instead comes across as the authors trying to market the underlying technology under the guise of an ethics paper.

While the ethical significance of caregivers in neurological research has increasingly been recognized, the role of caregivers in brain- computer interface (BCI) research has received relatively less attention. Objectives: This report investigates the extent to which caregivers are mentioned in publications describing implantable BCI (iBCI) research for individuals with motor dysfunction, communication impairment, and blindness. Methods: The scoping review was conducted in June 2024 using the PubMed and Web of Science bibliographic databases. The articles were systematically searched using query terms for caregivers, family members, and guardians, and the results were quantitatively and qualitatively analyzed. Results: Our search yielded 315 unique studies, 78 of which were included in this scoping review. Thirty-four (43.6%) of the 78 articles mentioned the study participant’s caregivers. We sorted these into 5 categories: Twenty-two (64.7%) of the 34 articles thanked caregivers in the acknowledgement section, 6 (17.6%) articles described the caregiver’s role with regard to the consent process, 12 (35.3%) described the caregiver’s role in the technical maintenance and upkeep of the BCI system or in other procedural aspects of the study, 9 (26.5%) discussed how the BCI enhanced participant communication and goal-directed behavior with the help of a caregiver, and 3 (8.8%) articles included general comments that did not fit into the other categories but still related to the importance of caregivers in the lives of the research participants. Discussion: Caregivers were mentioned in less than half of BCI studies in this review. The studies that offered more robust discussions of caregivers provide valuable insight into the integral role that caregivers play in supporting the study participants and the research process. Attention to the role of caregivers in successful BCI research studies can help guide the responsible development of future BCI study protocols.

ABSTRACT:Bioethicists today are taking a greater role in the design and implementation of emerging technologies by "embedding" within the development teams and providing their direct guidance and recommendations. Ideally, these collaborations allow ethical considerations to be addressed in an active, iterative, and ongoing process through regular exchanges between ethicists and members of the technological development team. This article discusses a challenge to this embedded ethics approach—namely, that bioethical guidance, even if embraced by the development team in theory, is not easily actionable in situ. Many of the ethical problems at issue in emerging technologies are associated with preexisting structural, socioeconomic, and political factors, making compliance with ethical recommendations sometimes less a matter of choice and more a matter of feasibility. Moreover, incentive structures within these systemic factors maintain them against reform efforts. The authors recommend that embedded bioethicists utilize principles from behavioral science (such as behavioral economics) to better understand and account for these incentive structures so as to encourage the ethically responsible uptake of technological innovations.

Introduction Deep brain stimulation (DBS) is approved under a humanitarian device exemption to manage treatment-resistant obsessive-compulsive disorder (TR-OCD) in adults. It is possible that DBS may be trialed or used clinically off-label in children and adolescents with TR-OCD in the future. DBS is already used to manage treatment-resistant childhood dystonia. Evidence suggests it is a safe and effective intervention for certain types of dystonia. Important questions remain unanswered about the use of DBS in children and adolescents with TR-OCD, including whether mental health clinicians would refer pediatric patients for DBS, and who would be a good candidate for DBS.Objectives To explore mental health clinicians’ views on what clinical and psychosocial factors they would consider when determining which children with OCD would be good DBS candidates.Materials and Methods In depth, semi-structured interviews were conducted with n = 25 mental health clinicians who treat pediatric patients with OCD. The interviews were transcribed, coded, and analyzed using thematic content analysis. Three questions focused on key, clinical, and psychosocial factors for assessing candidacy were analyzed to explore respondent views on candidacy factors. Our analysis details nine overarching themes expressed by clinicians, namely the patient’s previous OCD treatment, OCD severity, motivation to commit to treatment, presence of comorbid conditions, family environment, education on DBS, quality of life, accessibility to treatment, and patient age and maturity.Conclusions Clinicians generally saw considering DBS treatment in youth as a last resort and only for very specific cases. DBS referral was predominantly viewed as acceptable for children with severe TR-OCD who have undertaken intensive, appropriate treatment without success, whose OCD has significantly reduced their quality of life, and who exhibit strong motivation to continue treatment given the right environment. Appropriate safeguards, eligibility criteria, and procedures should be discussed and identified before DBS for childhood TR-OCD becomes practice.

Questions about when to limit unhelpful treatments are often raised in general medicine but are less commonly considered in psychiatry. Here we describe a survey of U.S. psychiatrists intended to characterize their attitudes about the management of suicidal ideation in patients with severely treatment-refractory illness. Respondents (n = 212) received one of two cases describing a patient with suicidal ideation due to either borderline personality disorder or major depressive disorder. Both patients were described as receiving all guideline-based and plausible emerging treatments. Respondents rated the expected helpfulness and likelihood of recommending each of four types of intervention: hospitalization, additional medication changes, additional neurostimulation, and additional psychotherapy. Across both cases, most respondents said they were likely to provide each intervention, except for additional neurostimulation in borderline personality disorder, while fewer thought each intervention would be helpful. Substantial minorities of respondents indicated that they would provide an intervention they did not think was likely to be helpful. Our results suggest that while most psychiatrists recognize the possibility that some patients are unlikely to be helped by available treatments, many would continue to offer such treatments.

IntroductionDeep brain stimulation (DBS) is utilized to treat pediatric refractory dystonia and its use in pediatric patients is expected to grow. One important question concerns the impact of hope and unrealistic optimism on decision-making, especially in “last resort” intervention scenarios such as DBS for refractory conditions.ObjectiveThis study examined stakeholder experiences and perspectives on hope and unrealistic optimism in the context of decision-making about DBS for childhood dystonia and provides insights for clinicians seeking to implement effective communication strategies.Materials and MethodsSemi-structured interviews with clinicians (n = 29) and caregivers (n = 44) were conducted, transcribed, and coded.ResultsUsing thematic content analysis, four major themes from clinician interviews and five major themes from caregiver interviews related to hopes and expectations were identified. Clinicians expressed concerns about caregiver false hopes (86%, 25/29) and desperation (68.9%, 20/29) in light of DBS being a last resort. As a result, 68.9% of clinicians (20/29) expressed that they intentionally tried to lower caregiver expectations about DBS outcomes. Clinicians also expressed concern that, on the flip side, unrealistic pessimism drives away some patients who might otherwise benefit from DBS (34.5%, 10/29). Caregivers viewed DBS as the last option that they had to try (61.3%, 27/44), and 73% of caregivers (32/44) viewed themselves as having high hopes but reasonable expectations. Fewer than half (43%, 19/44) expressed that they struggled setting outcome expectations due to the uncertainty of DBS, and 50% of post-DBS caregivers (14/28) expressed some negative feelings post treatment due to unmet expectations. 43% of caregivers (19/44) had experiences with clinicians who tried to set low expectations about the potential benefits of DBS.ConclusionThoughtful clinician-stakeholder discussion is needed to ensure realistic outcome expectations.

The diagnostic category of borderline personality disorder (BPD) has come under increasing criticism in recent years. In this paper, we analyze the role and impact of epistemic injustice, specifically testimonial injustice, in relation to the diagnosis of BPD. We first offer a critical sociological and historical account, detailing and expanding a range of arguments that BPD is problematic nosologically. We then turn to explore the epistemic injustices that can result from a BPD diagnosis, showing how they can lead to experiences of testimonial injustice which impede patient engagement in meaning-making activities, thereby undermining standard therapeutic goals. We conclude by showing how our arguments bolster ongoing efforts to replace the diagnostic category of BPD with alternatives such as complex post-traumatic stress disorder.

The ongoing debate within neuroethics concerning the degree to which neuromodulation such as deep brain stimulation (DBS) changes the personality, identity, and agency (PIA) of patients has paid relatively little attention to the perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients’ views about identity changes due to DBS in obsessive-compulsive disorder (OCD), the authors conducted and analyzed semistructured interviews with adolescent patients with OCD and their parents/caregivers. Patients were asked about projected impacts to PIA generally due to DBS. All patient respondents and half of caregivers reported that DBS would impact patient self-identity in significant ways. For example, many patients expressed how DBS could positively impact identity by allowing them to explore their identities free from OCD. Others voiced concerns that DBS-related resolution of OCD might negatively impact patient agency and authenticity. Half of patients expressed that DBS may positively facilitate social access through relieving symptoms, while half indicated that DBS could increase social stigma. These views give insights into how to approach decision-making and informed consent if DBS for OCD becomes available for adolescents. They also offer insights into adolescent experiences of disability identity and “normalcy” in the context of OCD.

Background Deep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies have shown its efficacy in reducing symptom severity and improving quality of life. While similar deep brain stimulation treatment is available for pediatric patients with dystonia, it is not yet available for pediatric patients with obsessive-compulsive disorder, although soon could be. The prospect of growing indications for pediatric deep brain stimulation raises several ethical concerns relating to bodily integrity, the ability to offer informed assent, and the role pediatric patients play in the decision-making process. Objective The aim of this study is to solicit and assess the views of stakeholders (children, parents, clinicians) on pediatric assent, autonomy, and bodily integrity in the context of potential pediatric deep brain stimulation for obsessive-compulsive disorder. Methods Semi-structured interviews were conducted with pediatric obsessive-compulsive disorder patients ( n = 21), caregivers of pediatric obsessive-compulsive disorder patients aged 14–18 ( n = 19), and clinicians with experience treating refractory obsessive-compulsive disorder ( n = 25). Interviews were transcribed and coded in MAXQDA 2018 and 2020 software and processed for thematic content analysis to isolate and compare specific themes. Results A majority of respondents (74%, 48/65) across all three stakeholder groups voiced that the decision-making process should be collaborative and involve everyone (clinicians: 84% or 21/25, caregivers 71% or 15/21, and patients 63% or 12/19). We identified a split between respondents’ views on who should have the final say in the event of disagreement (38% or 25/65 favored the patient versus 35% or 23/65 favoring caregivers). A split between respondents also emerged concerning the maturity relevant for deep brain stimulation decision-making, with 45% (29/65) favoring developmental maturity (age/physiological development) and 45% (29/65) favoring decisional maturity (capacity to understand and weigh information). A majority of clinicians indicated that they would not move forward with deep brain stimulation without securing patient assent (80% or 20/25), with some stating the only exception is if patient quality of life was very poor and/or they lacked insight. Both caregivers and patients expressed a significant respect for the patient's right to bodily integrity, with 67% of caregivers (14/21) and 68% of patients (13/19) justifying patient involvement in decision-making specifically with reference to infringements of bodily integrity. Conclusion Our findings demonstrate that despite broad agreement across stakeholders that the decision-making process for pediatric deep brain stimulation for obsessive-compulsive disorder should be collaborative and somehow involve pediatric patients, there is disagreement about what this process entails and what factors determine patient involvement in the process. However, there is agreement that children have a right to bodily and brain integrity, which should only be infringed upon in rare circumstances.