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Brain–computer interfaces (BCIs) can enable communication for persons in severe paralysis including locked-in syndrome (LIS); that is, being unable to move or speak while aware. In cases of complete loss of muscle control, termed “complete locked-in syndrome,” a BCI may be the only viable solution to restore communication. However, a widespread ignorance regarding quality of life in LIS, current BCIs, and their potential as an assistive technology for persons in LIS, needlessly causes a harmful situation for this cohort. In addition to their medical condition, these persons also face social barriers often perceived as more impairing than their physical condition. Through social exclusion, stigmatization, and frequently being underestimated in their abilities, these persons are being locked out in addition to being locked-in. In this article, we (1) show how persons in LIS are being locked out, including how key issues addressed in the existing literature on ethics, LIS, and BCIs for communication, such as autonomy, quality of life, and advance directives, may reinforce these confinements; (2) show how these practices violate the United Nations Convention on the Rights of Persons with Disabilities, and suggest that we have a moral responsibility to prevent and stop this exclusion; and (3) discuss the role of BCIs for communication as one means to this end and suggest that a novel approach to BCI research is necessary to acknowledge the moral responsibility toward the end users and avoid violating the human rights of persons in LIS.
This article addresses questions surrounding the minimally conscious state (MCS) from the perspective of adult clinical ethics. It describes the background of the MCS diagnosis, analyzes phenomenological ambiguities inherent in the nature of MCS, and raises epistemological concerns surrounding its diagnosis. It argues that in many cases, the burdens of prolonging treatment for people who have sustained certain severe brain injuries (SBI) outweigh the benefits, even if they are in or have the prospect of entering into MCS. It also argues that often such long-term measures are problematic from the perspective of patient preferences and stewardship of resources. Consequently, it suggests that the delineation of MCS as a distinct neurological state, along with research that seeks to expand how MCS is diagnosed, poses ethical difficulties for families and providers making decisions for affected patients.
Severe head injury or brain injury presents clinical neuroscientists with a unique challenge. Based on an objective assessment of cognitive and neurological function, it is sometimes hard to recognize our patients as members of our moral community (actually or potentially) but we treat them as if that were is the case, and, therefore, as if they need rescuing. Thus their existences as enigmata—beings who may or may not reveal themselves to us through social and personal function realized in conversations and relationships—are in doubt. However, the objective mode of assessing individuals and their mental functions needs to be bracketed here, as we reconnect with them and offer them our help in the restorative journey that they need to take. The journey has many tortuous paths comprising it, not the least of which is the existential question of whether the damaged human being with whom we are engaged actually can be restored to a meaningful life. A negative answer to that question can bring the whole process to an abrupt end. Neuroscience cannot answer some of these questions, as they are ethical. Is this a life worth living and are our commitments going to go the distance that must be traversed here. Therefore, this is an area where ethics take priority over neuroscience, and it is on our ethical response that everything else hinges. Understanding the light this throws on the nature of a human being takes us to the heart of the value of every human being and the nexus of mutuality that is the moral community.
Deep brain stimulation has been of considerable interest to bioethicists, in large part because of the effects that the intervention can occasionally have on central features of the recipient’s personality. These effects raise questions regarding the philosophical concept of authenticity. In this article, we expand on our earlier work on the concept of authenticity in the context of deep brain stimulation by developing a diachronic, value-based account of authenticity. Our account draws on both existentialist and essentialist approaches to authenticity, and Laura Waddell Ekstrom’s coherentist approach to personal autonomy. In developing our account, we respond to Sven Nyholm and Elizabeth O’Neill’s synchronic approach to authenticity, and explain how the diachronic approach we defend can have practical utility, contrary to Alexandre Erler and Tony Hope’s criticism of autonomy-based approaches to authenticity. Having drawn a distinction between the authenticity of an individual’s traits and the authenticity of that person’s values, we consider how our conception of authenticity applies to the context of anorexia nervosa in comparison to other prominent accounts of authenticity. We conclude with some reflections on the prudential value of authenticity, and by highlighting how the language of authenticity can be invoked to justify covert forms of paternalism that run contrary to the value of individuality that seems to be at the heart of authenticity.
In this article, we engage in dialogue with Jonathan Pugh, Hannah Maslen, and Julian Savulescu about how to best interpret the potential impacts of deep brain stimulation on the self. We consider whether ordinary peoples’ convictions about the true self should be interpreted in essentialist or existentialist ways. Like Pugh, Maslen, and Savulescu, we argue that it is useful to understand the notion of the true self as having both essentialist and existentialist components. We also consider two ideas from existentialist philosophy—Jean-Paul Sartre and Simone de Beauvoir’s ideas about “bad faith” and “ambiguity”—to argue that there can be value to patients in regarding themselves as having a certain amount of freedom to choose what aspects of themselves should be considered representative of their true selves. Lastly, we consider the case of an anorexia nervosa patient who shifts between conflicting mind-sets. We argue that mind-sets in which it is easier for the patient and his or her family to share values can plausibly be considered to be more representative of the patient’s true self, if this promotes a well-functioning relationship between the patient and the family. However, we also argue that families are well advised to give patients room to determine what such shared values mean to them, as it can be alienating for patients if they feel that others try to impose values on them from the outside.
Diagnostic classification systems in psychiatry have continued to rely on clinical phenomenology, despite limitations inherent in that approach. In view of these limitations and recent progress in neuroscience, the National Institute of Mental Health (NIMH) has initiated the Research Domain Criteria (RDoC) project to develop a more neuroscientifically based system of characterizing and classifying psychiatric disorders. The RDoC initiative aims to transform psychiatry into an integrative science of psychopathology in which mental illnesses will be defined as involving putative dysfunctions in neural nodes and networks. However, conceptual, methodological, neuroethical, and social issues inherent in and/or derived from the use of RDoC need to be addressed before any attempt is made to implement their use in clinical psychiatry. This article describes current progress in RDoC; defines key technical, neuroethical, and social issues generated by RDoC adoption and use; and posits key questions that must be addressed and resolved if RDoC are to be employed for psychiatric diagnoses and therapeutics. Specifically, we posit that objectivization of complex mental phenomena may raise ethical questions about autonomy, the value of subjective experience, what constitutes normality, what constitutes a disorder, and what represents a treatment, enablement, and/or enhancement. Ethical issues may also arise from the (mis)use of biomarkers and phenotypes in predicting and treating mental disorders, and what such definitions, predictions, and interventions portend for concepts and views of sickness, criminality, professional competency, and social functioning. Given these issues, we offer that a preparatory neuroethical framework is required to define and guide the ways in which RDoC-oriented research can—and arguably should—be utilized in clinical psychiatry, and perhaps more broadly, in the social sphere.
Currently, many scientific fields such as psychology or biomedicine face a methodological crisis concerning the reproducibility, replicability, and validity of their research. In neuroimaging, similar methodological concerns have taken hold of the field, and researchers are working frantically toward finding solutions for the methodological problems specific to neuroimaging. This article examines some ethical and legal implications of this methodological crisis in neuroimaging. With respect to ethical challenges, the article discusses the impact of flawed methods in neuroimaging research in cognitive and clinical neuroscience, particularly with respect to faulty brain-based models of human cognition, behavior, and personality. Specifically examined is whether such faulty models, when they are applied to neurological or psychiatric diseases, could put patients at risk, and whether this places special obligations on researchers using neuroimaging. In the legal domain, the actual use of neuroimaging as evidence in United States courtrooms is surveyed, followed by an examination of ways that the methodological problems may create challenges for the criminal justice system. Finally, the article reviews and promotes some promising ideas and initiatives from within the neuroimaging community for addressing the methodological problems.
Meat consumption increase since the nineteenth century is a good indicator of the key stage of the so-called nutrition transition. This article is based on primary sources, predominantly municipal slaughterhouse bookkeeping data, and examines the changing patterns of supply, distribution and consumption of different types of meat, in order to avoid the risk of an over-simplified historical view. Long-term analysis shows that between 1740 and 1840, a period of economic and demographic growth, meat consumption levels dropped dramatically. After that time, the liberalization of agriculture and the new rail network boosted the supply of meat. Other sources and spatial analysis help us examine the ways that the city was supplied with meat, the meat retail distribution within it and the changing diet of the different urban social strata.