Background: Newer “closed-loop” neurostimulation devices in development could, in theory, induce changes to patients’ personalities and self-perceptions. Empirically, however, only limited data of patient and family experiences exist. Responsive neurostimulation (RNS) as a treatment for refractory epilepsy is the first approved and commercially available closed-loop brain stimulation system in clinical practice, presenting an opportunity to observe how conceptual neuroethical concerns manifest in clinical treatment. Methods: We conducted ethnographic research at a single academic medical center with an active RNS treatment program (...) and collected data via direct observation of clinic visits and in-depth interviews with 12 patients and their caregivers. We used deductive and inductive analyses to identify the relationship between these devices and patient changes in personality and self-perception. Results: Participants generally did not attribute changes in patients’ personalities or self-perception to implantation of or stimulation using RNS. They did report that RNS affected patients’ experiences and conceptions of illness. In particular, the capacity to store and display electrophysiological data produced a common frame of reference and a shared vocabulary among patients and clinicians .Discussion: Empirical experiences of a clinical population being treated with closed-loop neuromodulation do not corroborate theoretical concerns about RNS devices described by neuroethicists and technology developers. However, closed-loop devices demonstrated an ability to change illness experiences. Even without altering identify and self-perception, they provided new cultural tools and metaphors for conceiving of epilepsy as an illness and of the process of diagnosis and treatment. These findings call attention to the need to situate neuroethical concerns in the broader contexts of patients’ illness experiences and social circumstances. (shrink)

Over its short history, the young field of “neuroethics” has enjoyed remarkable public support within neuroscience. For instance, since 2006 the Annual Meeting of the Society for Neuroscience has h...

: Most of the world now accepts the idea, first proposed four decades ago, that death means "brain death." But the idea has always been open to criticism because it doesn't square with all of our intuitions about death. In fact, none of the possible definitions of death quite works. Death, perhaps surprisingly, eludes definition, and "brain death" can be accepted only as a refinement of what is in fact a fuzzy concept.

Most of the world now accepts the idea, first proposed four decades ago, that death means “brain death.” But the idea has always been open to criticism because it doesn't square with all of our intuitions about death. In fact, none of the possible definitions of death quite works. Death, perhaps surprisingly, eludes definition, and “brain death” can be accepted only as a refinement of what is in fact a fuzzy concept.

The equipoise requirement in clinical research demands that, if patients are to be randomly assigned to one of two interventions in a clinical trial, there must be genuine doubt about which is better. This reflects the traditional view that physicians must never knowingly compromise the care of their patients, even for the sake of future patients. Equipoise has proven to be deeply problematic, especially in the Third World. Some recent critics have argued against equipoise on the grounds that clinical research (...) is fundamentally distinct from clinical care, and thus should be governed by different norms. I argue against this "difference position," and instead take issue with the traditional, exclusively patient-centered account of physicians' obligations that equipoise presupposes. In place of this traditional view, I propose a Kantian test for the reasonable partiality that physicians should show their patients, focusing on its application in clinical research and medical education. (shrink)

In their thoughtful and rigorous article, Peterson and colleagues extend an account of supported decision-making that was originally developed for people with static cognitive impairments, t...

What happens at the end of a clinical trial for an investigational neural implant? It may be surprising to learn how difficult it is to answer this question. While new trials are initiated with increasing regularity, relatively little consensus exists on how best to conduct them, and even less on how to ethically end them. The landscape of recent neural implant trials demonstrates wide variability of what happens to research participants after an neural implant trial ends. Some former research participants (...) continue to receive support for their devices (e.g., battery and component replacements, software updates, etc.). Others, when safe, have their neural implants removed through surgical explantation. Still others continue to live with a deactivated neural implant embedded in their body. In the United States, there are no uniform requirements to provide services, of any kind, after an neural implant study ends, and other nations are similarly facing this challenge. The existence of a post-trial gap in an expanding neural implant research ecosystem invites obvious questions: What is owed to neural implant research participants post-trial, and why has providing it been so difficult to accomplish in practice? To take a step forward on this difficult issue, we assembled one group of stakeholders – researchers funded for neuroethics grants by the National Institutes of Health – to explore possible starting points on one topic: ethical guidance for post-trial care of research participants in neural implant trials. Based on shared concerns discussed in the expert workshop the current paper is a call to action. It reports the key areas of convergence from the meeting and highlights important next steps towards developing much needed guidance. (shrink)

We estimate that 208,000 deep brain stimulation (DBS) devices have been implanted to address neurological and neuropsychiatric disorders worldwide. DBS Think Tank presenters pooled data and determined that DBS expanded in its scope and has been applied to multiple brain disorders in an effort to modulate neural circuitry. The DBS Think Tank was founded in 2012 providing a space where clinicians, engineers, researchers from industry and academia discuss current and emerging DBS technologies and logistical and ethical issues facing the field. (...) The emphasis is on cutting edge research and collaboration aimed to advance the DBS field. The Eighth Annual DBS Think Tank was held virtually on September 1 and 2, 2020 (Zoom Video Communications) due to restrictions related to the COVID-19 pandemic. The meeting focused on advances in: (1) optogenetics as a tool for comprehending neurobiology of diseases and on optogenetically-inspired DBS, (2) cutting edge of emerging DBS technologies, (3) ethical issues affecting DBS research and access to care, (4) neuromodulatory approaches for depression, (5) advancing novel hardware, software and imaging methodologies, (6) use of neurophysiological signals in adaptive neurostimulation, and (7) use of more advanced technologies to improve DBS clinical outcomes. There were 178 attendees who participated in a DBS Think Tank survey, which revealed the expansion of DBS into several indications such as obesity, post-traumatic stress disorder, addiction and Alzheimer’s disease. This proceedings summarizes the advances discussed at the Eighth Annual DBS Think Tank. (shrink)

Volume 20, Issue 8, August 2020, Page 67-69.

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:A Theory of Bioethics by David DeGrazia and Joseph MillumColin Hoy (bio) and Winston Chiong (bio)Review of David DeGrazia and Joseph Millum, A Theory of Bioethics (Cambridge University Press, 2021)David DeGrazia and Joseph Millum’s A Theory of Bioethics 2021 arrives at a curious time for an ambitious effort at systematic theory construction, seemingly out of step with bioethical fashion. At the same time, a prominent group of philosophical (...) bioethicists authored an article, possibly with a touch of defensiveness, to “make the case that philosophy and philosophers still have a very important and meaningful role to play in contemporary bioethics” (Blumenthal-Barby et al. 2021). Meanwhile, the annual meeting of the American Society for Bioethics and Humanities included several expressions of impatience with the historical privileging of philosophy over more empirical, situated, and community-oriented approaches to moral problems in health.DeGrazia and Millum’s work itself reflects the current state of bioethics and how it has changed since the heyday of grand bioethical theory construction in the late twentieth century. To apply Parfit’s philosophical taxonomy (1984), the general frameworks promulgated by theorists like Veatch, Engelhardt, and Gert, as well as Beauchamp and Childress, were by necessity revisionary. These bioethical theories were whole-cloth alternatives to a conventional and paternalistic medical ethos that was already widely acknowledged as unsatisfactory. Today, however, bioethics is a mature and institutionalized field, with well-established practices and a corpus of accepted tenets (alongside matters of ongoing but generally demarcated controversy). A plausible and fruitful contemporary theory of bioethics must be largely descriptive, in Parfit’s sense, providing an intellectual framework that gives coherence and sense to existing practice, while at the same time clarifying matters of confusion.In contemporary bioethics, a central component of this practice is the application of the four principles of biomedical ethics—non-maleficence, beneficence, justice and autonomy—not merely as originally proposed by Beauchamp and Childress (2019), but in their refined form, following decades of exchange, critique, and revision. DeGrazia and Millum’s theory begins with two core values: well-being and respect for rights holders. [End Page 321] The bulk of the book then applies the method of reflective equilibrium to specify these two values in terms of the canonical four principles, here treated as “mid-level” constructs with readier application to specific cases than the two core values. Experienced bioethicists may have an uncanny sense of setting off from a new trailhead, and yet, eventually finding themselves still walking a familiar path. However, this way of introducing and explicating the four principles will likely be more accessible to a wider audience, including high-level undergraduates and graduate students not already versed in the revisions, refinements, and compromises embedded in Beauchamp and Childress’s discussions.Two other features recommend this book as a resource for trainees and interested non-experts seeking to deepen their understanding of bioethics. First, the clarity of its style and organizational approach provides a welcome orientation for non-specialists. The chapters are structured so that major contending perspectives are outlined before the authors develop arguments for their own positions in that context. Each chapter proceeds by considering applications of the broader theory, showing how it can illuminate potential candidate approaches or policies, as well as demonstrating how to use the tools of ethical analysis to evaluate these proposals in both ideal and non-ideal cases. This didactic approach to the relationship between conceptual argument and practice will be accessible to many who are initially unfamiliar with or intimidated by theory. Second the commendable decision to make the book electronically available and accessible also has the potential to broaden the reach of the work, and in particular, to engage parties in under-resourced settings, which have so often been overlooked in bioethical discourse.As noted above, while the authors’ approach is descriptive in Parfit’s sense, it is not necessarily conservative. In many places, the authors highlight how their theory includes elements or renders conclusions that are not broadly accepted, and following the method of reflective equilibrium, they advocate for these positions both in terms of broad principles and particular judgments about cases. This begins with their dual-value... (shrink)

I am glad to have this opportunity to continue a conversation with authors from whom I have learned so much. In the interest of space I will focus my own remarks on points where I disagree with the...

Recent debate has arisen in the neuroethics literature on the extent to which deep brain stimulation (DBS) may cause changes to core personal traits. This has prompted calls for more empirical data...