In the 2015 David Kopf Lecture on Neuroethics of the Society for Neuroscience, Dr. Joseph Fins presents his work on neuroethics and disorders of consciousness through the experience of Maggie and Nancy Worthen, a young woman who sustained a severe brain injury and her mother who cared for her. The central protagonists in his book, Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness (Cambridge University Press, 2015), their experience is emblematic of the challenges faced by families touched by severe brain injury and the possibility for improved diagnosis and treatment offered by progress in neuroscience. By telling their story, and those of other families interviewed as part of the research for Rights Come to Mind, Fins calls for improved care for this population arguing that this is both an access to care issue and a civil and disability rights issue worthy of greater societal attention.

Consciousness defines us as persons. It allows us to have both pleasurable and painful experiences. I present four neurological conditions in the clinical setting to explore how consciousness can be beneficial or harmful to patients: intraoperative awareness, prolonged disorders of consciousness, locked-in syndrome, and the effects of narcotics and sedation on terminally ill patients. The ethical significance of consciousness for patients in these conditions depends on two factors: the content of one’s experience and whether one can report this content to others. I argue that the value or disvalue of phenomenal consciousness, what it is like to be aware, may depend on its relation to access consciousness, the ability to report or communicate the content of awareness. Phenomenal consciousness can have disvalue when one wants or expects to be unconscious. It can also have disvalue in the absence of access consciousness because it can allow the patient to experience pain and suffer. Technology that enabled neurologically compromised patients to reliably communicate their experience and wishes could benefit and prevent harm to them. More generally, the neurological conditions I discuss raise the question of when and in what respects consciousness is preferable to unconsciousness.

Recent neuroimaging research on disorders of consciousness provides direct evidence of covert consciousness otherwise not detected clinically in a subset of severely brain-injured patients. These findings have motivated strategic development of binary communication paradigms, from which researchers interpret voluntary modulations in brain activity to glean information about patients’ residual cognitive functions and emotions. The discovery of such responsiveness raises ethical and legal issues concerning the exercise of autonomy and capacity for decisionmaking on matters such as healthcare, involvement in research, and end of life. These advances have generated demands for access to the technology against a complex background of continued scientific advancement, questions about just allocation of healthcare resources, and unresolved legal issues. Interviews with professionals whose work is relevant to patients with disorders of consciousness reveal priorities concerning further basic research, legal and policy issues, and clinical considerations.

Closed-loop medical devices such as brain-computer interfaces are an emerging and rapidly advancing neurotechnology. The target patients for brain-computer interfaces (BCIs) are often severely paralyzed, and thus particularly vulnerable in terms of personal autonomy, decisionmaking capacity, and agency. Here we analyze the effects of closed-loop medical devices on the autonomy and accountability of both persons (as patients or research participants) and neurotechnological closed-loop medical systems. We show that although BCIs can strengthen patient autonomy by preserving or restoring communicative abilities and/or motor control, closed-loop devices may also create challenges for moral and legal accountability. We advocate the development of a comprehensive ethical and legal framework to address the challenges of emerging closed-loop neurotechnologies like BCIs and stress the centrality of informed consent and refusal as a means to foster accountability. We propose the creation of an international neuroethics task force with members from medical neuroscience, neuroengineering, computer science, medical law, and medical ethics, as well as representatives of patient advocacy groups and the public.

Human beings are sensorimotor coupled to the actual world and also attuned to the symbolic world of culture and the techniques of adaptation that culture provides. The self-image and self-shaping mediated by that mirror directly affects the neurocognitive structures that integrate human neural activity and reshape its processing capacities through top-down or autopoietic effects. Thus a crack’d mirror, which disrupts the processes of enactive self-configuration, can be disabling for an individual. That is exactly what happens in postcolonial or immigration contexts in which individuals’ cultural adaptations are marginalized and disconnected in diverse and often painful and disorienting ways. The crack’d mirror is therefore a powerful trope for neuroethics and helps us understand the social and moral pathologies of many indigenous and immigrant communities.

One of the topics that often comes up in ethical discussions of deep brain stimulation (DBS) is the question of what impact DBS has, or might have, on the patient’s self. This is often understood as a question of whether DBS poses a threat to personal identity, which is typically understood as having to do with psychological and/or narrative continuity over time. In this article, we argue that the discussion of whether DBS is a threat to continuity over time is too narrow. There are other questions concerning DBS and the self that are overlooked in discussions exclusively focusing on psychological and/or narrative continuity. For example, it is also important to investigate whether DBS might sometimes have a positive (e.g., a rehabilitating) effect on the patient’s self. To widen the discussion of DBS, so as to make it encompass a broader range of considerations that bear on DBS’s impact on the self, we identify six features of the commonly used concept of a person’s “true self.” We apply these six features to the relation between DBS and the self. And we end with a brief discussion of the role DBS might play in treating otherwise treatment-refractory anorexia nervosa. This further highlights the importance of discussing both continuity over time and the notion of the true self.

On seeing promising results in a small number of patients, some researchers are conducting trials to determine whether deep brain stimulation (DBS) is an effective treatment for anorexia nervosa (AN). This article asks whether we should open enrollment in trials of DBS for AN to adolescents. Despite concerns about informed consent, parental consent, and unforeseeable psychological sequelae, the article concludes that the risks to anorexic adolescents associated with participation in trials of DBS are reasonable considering the substantial risks of not enrolling teens with AN in research on DBS. The seriousness of AN, its high incidence in teens, and serious shortfalls in the AN treatment literature point to the need for improved, evidence-based treatments for teens with AN. This unmet need generates an obligation on the part of researchers and physicians to promote and conduct research on AN in adolescents.

We argue that an advance directive (AD) is not invalidated by personality changes in dementia, as is claimed by Rebecca Dresser. The claim is that a new person results under such personality changes, and that the former person cannot write an AD for the new person. After stating the argument against ADs in cases of dementia, we provide a detailed examination of empirical studies of personality changes in dementia. This evidence, though not strong due mainly to low sample sizes and different notions of personal identity, does not support Dresser’s position. Given the weakness in the empirical evidence, we turn to a philosophical defense of ADs based on a social contract view supporting the current interests of those writing ADs. Additionally, we argue that personality change is not equivalent to change in personal identity, as would be required by the argument against ADs in cases of dementia.

In 2012, the FDA approved for the differential diagnosis of Alzheimer’s disease a brain-imaging technology, Amyvid-PET (aka florbetapir-PET), capable of non-invasively estimating the burden of amyloid plaques; this approval for one indication renders the technology a candidate for off-label use for another indication according to a physician’s judgment. What should a physician do if an educated, pro-active, and concerned patient requests off-label use of Amyvid-PET to help her estimate the likelihood that her mild memory complaints are “just normal aging” or are likely to profoundly worsen? I consider reasons that a physician might justify denial of such a request, including concerns of safety, uncertain benefit, and fair resource allocation, but cautiously conclude that there may be certain cases where off-label bioprediction would be permissible.

The ethical principle of autonomy requires physicians to respect patient autonomy when present, and to protect the patient who lacks autonomy. Fulfilling this ethical obligation when a patient has a communication impairment presents considerable challenges. Standard methods for evaluating decision-making capacity require a semistructured interview. Some patients with communication impairments are unable to engage in a semistructured interview and are at risk of the wrongful loss of autonomy. In this article, we present a general strategy for assessing decision-making capacity in patients with communication impairments. We derive this strategy by reflecting on a particular case. The strategy involves three steps: (1) determining the reliability of communication, (2) widening the bandwidth of communication, and (3) using compensatory measures of decision-making capacity. We argue that this strategy may be useful for assessing decision-making capacity and preserving autonomy in some patients with communication impairments.

In the contemporary debate on the use of the neurosciences in ethics and law, numerous arguments have been bandied about among scientists and philosophers looking to uphold or reject the reliability and validity of scientific findings obtained by brain imaging technologies. Among the most vexing questions is, Can we trust that technology? One point of disagreement is whether brain scans offer a window through which to observe the functioning of the mind, in such a way as to enable lawyers, judges, physicians, and lawmakers to detect anomalies in brain function that may account for criminal unconscious behavior. Those who stand behind brain imaging believe that this can indeed be achieved, whereas those in opposition stress that brain scans are highly open to interpretation and that the data they provide is insufficient to establish causal connections. The question essentially comes down to whether technology can reliably be used to determine the intentions of the individual, thus establishing mens rea, for example, and hence responsibility. This article focuses on the latter notion and explores whether we can rely on the neurosciences to shed light on a complex form of moral and legal reasoning, as well as the role of the neurosciences in reawakening a philosophical and legal interest in trying to set responsibility on an empirical basis.

Ongoing developments in neuroscientific techniques and technologies—such as neuroimaging—offer potential for greater insight into human behavior and have fostered temptation to use these approaches in legal contexts. Neuroscientists are increasingly called on to provide expert testimony, interpret brain images, and thereby inform judges and juries who are tasked with determining the guilt or innocence of an individual. In this essay, we draw attention to the actual capabilities and limitations of currently available assessment neurotechnologies and examine whether neuroscientific evidence presents unique challenges to existing frameworks of evidence law. In particular, we focus on (1) fundamental questions of relevance and admissibility that can and should be posed before the tests afforded in Daubert v. Merrill Dow Pharmaceuticals or Frye v. U.S. are applied and (2) how these considerations fit into the broader contexts of criminal law. We contend that neuroscientific evidence must first be scrutinized more heavily for its relevance, within Daubert and Federal Rule of Evidence 702, to ensure that the right questions are asked of neuroscientists, so as to enable expert interpretation of neuroscientific evidence within the limits of their knowledge and discipline that allows the judge or jury to determine the facts at issue in the case. We use the analogy provided by the Daubert court of an expert on the phases of the moon testifying to an individual’s behavior on a particular night to ensure that we are, in fact, asking the neuroscientific expert the appropriate question.

Fetal alcohol spectrum disorder (FASD) is increasingly recognized as a growing public health issue worldwide. Although more research is needed on both the diagnosis and treatment of FASD, and a broader and more culturally diverse range of services are needed to support those who suffer from FASD and their families, both research and practice for FASD raise significant ethical issues. In response, from the point of view of both research and clinical neuroethics, we provide a framework that emphasizes the need to maximize benefits and minimize harm, promote justice, and foster respect for persons within a global context.