There is substantial literature on fetal alcohol spectrum disorder research involving Aboriginal children, but little related literature on other common neurodevelopmental conditions such as autism spectrum disorder or cerebral palsy for this population. As part of our work in cross-cultural neuroethics, we examined this phenomenon as a case study in Canada. We conducted semi-structured interviews with health researchers working on the frontline with First Nation communities to obtain perspectives about: reasons for the lack of ASD and CP (...) research within the Aboriginal context, the potential ethical and social implications of this disparity, and recommendations for change. Participants reported that the major barriers to engage in ASD or CP research are under-reporting and under-diagnosis of these conditions in Aboriginal communities, difficulties in establishing trust between community members and researchers, challenges in accessing children living under the care of child welfare services, and lack of support from universities and funding agencies to encourage community partnerships. They further perceived threats to justice as the population is denied the benefits of ASD and CP research, and stigma related to the possible over-representation of FASD in the population. The adoption of strength- and community-based practices to improve engagement and address disparities, and to create health databases with prevalence rates that are representative of all forms of disability in both Aboriginal and non-Aboriginal populations are critical steps to close these gaps. (shrink)

Environmental ethicists and experts in human health have raised concerns about the effects of hydraulic fracking to access natural oil and gas resources found deep in shale rock formations on surrounding ecosystems and communities. In this study, we analyzed the prevalence of discourse on brain and mental health, and ethics, in the peer-reviewed and grey literature in the five-year period between 2016 and 2022. A total of 84 articles met inclusion criteria for analysis. Seventy-six percent (76%) mentioned impacts (...) on brain (e.g., neural tube defects, neurological symptoms), and mental health (e.g., negative psychological effects, stress, depression) briefly; 11 reports dedicated substantive discourse to either or both together. References to safety (77%) dominated the ethics context. Discussion of environmental injustices as fracking sites disproportionately affect vulnerable communities appeared in 38% of the papers. We examine the findings through the lens of environmental neuroethics that brings human-made changes to the environment, brain and mental health, and ethics together into three interwoven lines of inquiry. (shrink)

While new generations of implantable brain computer interface devices are being developed, evidence in the literature about their impact on the patient experience is lagging. In this article, we address this knowledge gap by analysing data from the first-in-human clinical trial to study patients with implanted BCI advisory devices. We explored perceptions of self-change across six patients who volunteered to be implanted with artificially intelligent BCI devices. We used qualitative methodological tools grounded in phenomenology to conduct in-depth, semi-structured (...) interviews. Results show that, on the one hand, BCIs can positively increase a sense of the self and control; on the other hand, they can induce radical distress, feelings of loss of control, and a rupture of patient identity. We conclude by offering suggestions for the proactive creation of preparedness protocols specific to intelligent—predictive and advisory—BCI technologies essential to prevent potential iatrogenic harms. (shrink)

Electroencephalographic monitoring provides critical diagnostic and management information about patients with epilepsy and seizure mimics. Admission to an epilepsy monitoring unit (EMU) is the gold standard for such monitoring in major medical facilities worldwide. In many countries, access can be challenged by limited resources compared to need. Today, triaging admission to such units is generally approached by unwritten protocols that vary by institution. In the absence of explicit guidance, decisions can be ethically taxing and are easy to challenge. In (...) an effort to address this gap, we propose a two-component approach to EMU triage that takes into account the unique landscape of epilepsy monitoring informed by triage literature from other areas of medicine. Through the strategic component, we focus on the EMU wait list management infrastructure at the institutional level. Through the principled component, we apply a combination of the ethical principles of prioritarianism, utilitarianism and justice to triage; and we use individual case examples to illustrate how they apply. The effective implementation of this approach to specific epilepsy centres will need to be customised to the nuances of different settings, including diverse practice patterns, patient populations and constraints on resource distribution, but the conceptual consolidation of its components can alleviate some of the pressures imposed by the complex decisions involved in EMU triage. (shrink)

Although there is a large and growing literature on children’s developing concepts of illness transmission, little is known about how children develop contagion knowledge before formal schooling begins, and how these informal learning experiences can impact children’s health behaviors. Here we asked two important questions: First, do children’s informal learning experiences, such as their experiences reading storybooks, regularly contain causal information about illness transmission; and second, what is the impact of this type of experience on (...) children’s developing knowledge and behavior? In Study 1, we examined whether children’s commercial books about illness regularly contain contagion-relevant causal information. In Study 2, we ran a pilot study examining whether providing children with causal information about illness transmission in a storybook can influence their knowledge and subsequent behavior when presented with a contaminated object. The results from Study 1 suggest that very few (15%) children’s books about illness feature biological causal mechanisms for illness transmission. However, results from Studies 2 suggest that storybooks containing contagion-relevant explanations about illness transmission may encourage learning and avoidance of contaminated objects. Altogether, these results provide preliminary data suggesting that future research should focus on engaging children in learning about contagion and encouraging adaptive health behaviors. (shrink)

Recent advances in the brain sciences have dramatically improved our understanding of brain function. As we find out more and more about what makes us tick, we must stop and consider the ethical implications of this new found knowledge. This ground-breaking book on the emerging field of neuroethics answers many pertinent questions, such as: What makes monitoring and manipulating the human brain so ethically challenging? Will having a new biology of the brain through imaging make us less responsible for (...) our behavior and lose our free will? Should certain brain scan studies be disallowed on the basis of moral grounds? A distinguished group of contributors from a wide range of fields make this an invaluable introduction to neuroethics. (shrink)

Recent advances in the brain sciences have dramatically improved our understanding of brain function. As we find out more and more about what makes us tick, we must stop and consider the ethical implications of this new found knowledge. Will having a new biology of the brain through imaging make us less responsible for our behavior and lose our free will? Should certain brain scan studies be disallowed on the basis of moral grounds? Why is the media so interested (...) in reporting results of brain imaging studies? What ethical lessons from the past can best inform the future of brain imaging? These compelling questions and many more are tackled by a distinguished group of contributors to this volume on neuroethics. The wide range of disciplinary backgrounds that the authors represent, from neuroscience, bioethics and philosophy, to law, social and health care policy, education, religion and film, allow for profoundly insightful and provocative answers to these questions, and open up the door to a host of new ones. The contributions highlight the timeliness of modern neuroethics today, and assure the longevity and importance of neuroethics for generations to come. (shrink)

A landmark in the scientific literature, the Oxford Handbook of Neuroethics presents a pioneering review of a topic central to the biosciences. It breaks new ground in bringing together leading neuroscientists, philosophers, and lawyers to tackle some of the most significant ethical issues that face us now and will continue to do so.

In this engaging study, Sean Illing examines the impact of Fyodor Dostoevsky and Friedrich Nietzsche on the development of Albert Camus's political philosophy. It innovatively attempt to offer a substantive examination of Camus's dialogue with Nietzsche and Dostoevsky. The connections among these writers have been discussed in the general context of modern thought or via overlapping literary themes. This project emphasizes the political dimensions of these connections. In addition to re-interpreting Camus's political thought, the aim is to clarify Camus's struggle (...) with transcendence and to bring renewed attention to his unique understanding of the relationship between nihilism, ideology, and political violence in the twentieth century. The book focuses on Camus's dialogue with Nietzsche and Dostoevsky for three reasons. First, these are the thinkers with whom Camus is most engaged. Indeed, the problems and themes of Camus's work are largely defined by Dostoevsky and Nietzsche; a full account of this dialogue will therefore enhance our understanding of Camus while also reinforcing the enduring importance of Nietzsche and Dostoevsky. Second, it allows a recasting of Camus' political philosophy as both a synthesis of and a response to Nietzsche and Dostoevsky's projects. Finally, this approach allows for a reassessment of Camus's broader political significance, which I contend has been undervalued in the literature. Ultimately, I argue that Camus remains among the most important moral and political voices of the twentieth century. Although limited, his philosophy of revolt offers a humane portrait of justice and articulates a meaningful alternative to the extremes of ideological politics. (shrink)

Deep brain stimulation (DBS) represents a promising new frontier in medicine and neuroscience for managing disorders of mental health that represent an enormous burden of disease on our societies. The caution and significant restraint of leaders in the evolution of DBS today stand in sharp and refreshing contrast to previous episodes in history. In embracing the anticipatory and pragmatic problem-solving approach of neuroethics to clinical neuroscience, four significant paradoxes for DBS today come to the fore: caution and innovation, capacity and (...) allocation of resources, notions of wellness and disease, and the high-stakes/high-benefit imperative of communicating about science. Tackling these paradoxes is the focus of this article. (shrink)

Neuroethics, in its modern form, investigates the impact of brain science in four basic dimensions: the self, social policy, practice and discourse. In this study, we analyzed a set of 461 peer-reviewed articles with neuroethics content, published by authors from 32 countries. We analyzed the data for: (1) trends in the development of international neuroethics over time, and (2) how challenges at the intersection of ethics and neuroscience are viewed in countries that are considered developed by International Monetary Fund (IMF) (...) standards, and in those that are developing. Our results demonstrate a steady increase in global participation in neuroethics from 1989 to 2005, characterized by an increase in numbers of articles published specifically on neuroethics, journals publishing these articles, and countries contributing to the literature. The focus from all countries was on the practice of brain science and the amelioration of neurological disease. Indicators of technology creation and diffusion in developing countries were specifically correlated with increases in publications concerning policy implications of brain science. Neuroethics is an international endeavor and, as such, should be sensitive to the impact that context has on acceptance and use of technological innovation. (shrink)

Advances in neuroscience have enabled the transition of transcranial direct current stimulation (tDCS) from research and clinical settings to public use. For this primarily home-based context, tDCS has been popularized as a do-it-yourself (DIY) approach to improved cognition and wellness. The line between wellness and health is blurry, however, and little is known about how engagement with therapeutic tDCS impacts users’ interactions with other interventions such as clinical consultations, pharmacotherapy, complementary medicine, and even other neurotechnology. To close this gap, (...) we collected data from the online content aggregator Reddit and analyzed posts pertaining to tDCS. Findings indicate that most users turn to Reddit to request information about tDCS as an adjunct, but not as a bypass, to ongoing or prior approaches. Posts suggest that mainstream medical care is viewed as necessary but not sufficient to address conditions such as depression and anxiety. Users discuss a mix of benefits and harms. This discourse provides valuable insights into the health practices, concerns and priorities of users, and new knowledge for informing applications of neurotechnology both inside and outside the therapeutic setting. (shrink)

Neuroethics, in its modern form, investigates the impact of brain science in four basic dimensions: the self, social policy, practice and discourse. In this study, we analyzed a set of 461 peer‐reviewed articles with neuroethics content, published by authors from 32 countries. We analyzed the data for: (1) trends in the development of international neuroethics over time, and (2) how challenges at the intersection of ethics and neuroscience are viewed in countries that are considered developed by International Monetary Fund (IMF) (...) standards, and in those that are developing. Our results demonstrate a steady increase in global participation in neuroethics from 1989 to 2005, characterized by an increase in numbers of articles published specifically on neuroethics, journals publishing these articles, and countries contributing to the literature. The focus from all countries was on the practice of brain science and the amelioration of neurological disease. Indicators of technology creation and diffusion in developing countries were specifically correlated with increases in publications concerning policy implications of brain science. Neuroethics is an international endeavor and, as such, should be sensitive to the impact that context has on acceptance and use of technological innovation. (shrink)

To date, ethics discussions about stem cell research overwhelmingly have centered on the morality and acceptability of using human embryonic stem cells. Governments in many jurisdictions have now answered these “first-level questions” and many have now begun to address ethical issues related to the donation of cells, gametes, or embryos for research. In this commentary, we move beyond these ethical concerns to discuss new themes that scientists on the forefront of NRM development anticipate, providing a preliminary framework for further (...) discussion between scientists and ethicists. Fostering strong partnerships between neuroscientists and ethicists that operate and collaborate within this evolving framework will maximize the translation of NRM discoveries on the brain into cures that are safe and address the needs of science and society. (shrink)

The discussions about subject and validation in our late modernity tend to oscillate between the "weak" self of postmodernity ("empty" or "rhetorical") and neo-Cartesian versions trying, as they do, to recover a discredited foundation. Correspondingly, the solutions advanced range from calls for a "New Enlightenment" (in the face of the resurgence of myth and "the irrational") to attempts to "re-enchant the world" (in the face of the growing threat of an impersonal instrumental Reason).The present study seeks to respond theologically (...) to such a situation from the perspective of God's action in and towards the world by engaging two prominent philosophical/theological figures who continue to inform such discussions today, namely, Georg Friedrich Hegel and Paul Ricoeur. The upshot of this response points to a view of rationality that follows the drama of God's engagement with the world, thus involving both dying and resurrection, ascesis and abundance, suffering witness and eucharistic communion. (shrink)

An essay about hypochondria, past and present. Beginning with the observation that for centuries hypochondria has been blamed upon various forms of reading, I attempt to take seriously this venerable relationship between hypochondria and literature. By bracketing the medical and moral concerns that encumber most treatments of hypochondria, I instead seek to understand the condition as a method of reading, a close textual engagement that is at once anxious and oddly clear-sighted about its own limits, and which (...) bears some similarities to other, more familiar hermeneutic methods such as paranoid reading and ‘too-close reading’. In the second half of the essay, I draw upon the lives and writings of Maurice Blanchot and Franz Kafka, two writers who were themselves plagued by mysterious and unexplained symptoms, and attempt to show how the imperatives of literature as understood by each writer could meaningfully be described as hypochondriacal. Above all, then, this essay looks more closely at a figure whom it is difficult to take seriously, and asks whether, viewed from a certain angle, the hypochondriac might in fact be said to be endowed with a perspicuous if discomfiting form of insight. (shrink)

This book explores patient safety themes in developed, developing and transitioning countries. A foundation premise is the concept of 'reverse innovation' as mutual learning from the chapters challenges traditional assumptions about the construction and location of knowledge. This edited collection can be seen to facilitate global learning. This book will, hopefully, form a bridge for those countries seeking to enhance their patient safety policies. Contributors to this book challenge many supposed generalisations about human societies, including consideration of how (...) medical care is mediated within those societies and how patient safety is assured or compromised. By introducing major theories from the developing world in the book, readers are encouraged to reflect on their impact on the patient safety and the health quality debate. The development of practical patient safety policies for wider use is also encouraged. The volume presents a ground breaking perspective by exploring fundamental issues relating to patient safety through different academic disciplines. It develops the possibility of a new patient safety and health quality synthesis and discourse relevant to all concerned with patient safety and health quality in a global context. (shrink)

Without exaggeration, it could be said that we are entering a golden age of neuroscience. Informed by recent developments in neuroimaging that allow us to peer into the working brain at both a structural and functional level, neuroscientists are beginning to untangle mechanisms of recovery after brain injury and grapple with age-old questions about brain and mind and their correlates neural mechanisms and consciousness. Neuroimaging, coupled with new diagnostic categories and assessment scales are helping us develop a new diagnostic (...) nosology about disorders of consciousness which will likely improve prognostication and suggest therapeutic advances. Historically such diagnostic refinement has yield therapeutic advances in medicine and there is no reason to doubt that this will be the case for disorders of consciousness, perhaps bringing relief to a marginalized population now on the periphery of the therapeutic agenda. In spite of this promise, the translation of research findings into the clinical context will be difficult. As we move from descriptive categories about disorders of consciousness, like the vegetative or minimally conscious states, to ones further specified by integrating behavioral and neuroimaging findings, humility not hubris should be the virtue that guides the ethical conduct of research and practice. (shrink)

Theory of illness causation is an important issue in all biomedical sciences, and solid etiological explanations are needed in order to develop therapeutic approaches in medicine and preventive interventions in public health. Until now, the literature about the theoretical underpinnings of illness causation research has been scarce and fragmented, and lacking a convenient summary. This interdisciplinary book provides a convenient and accessible distillation of the current status of research into this developing field, and adds a personal (...) flavor to the discussion by proposing the etiological stance as a comprehensive approach to identify modifiable causes of illness. (shrink)

: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. (shrink)

Mental health care providers increasingly confront challenges posed by the introduction of new neurotechnology into the clinic, but little is known about the impact of such capabilities on practice patterns and relationships with patients. To address this important gap, we sought providers’ perspectives on the potential clinical translation of functional neuroimaging for prediction and diagnosis of mental illness. We conducted 32 semi-structured telephone interviews with mental health care providers representing psychiatry, psychology, family medicine, and allied mental health. Our (...) results suggest that mental health providers have begun to re-conceptualize mental illness with a neuroscience gaze. They report an epistemic commitment to the value of a brain scan to provide a meaningful explanation of mental illness for their clients. If functional neuroimaging continues along its projected trajectory to translation, providers will ultimately have to negotiate its role in mental health. Their perspectives, therefore, enrich bioethical discourse surrounding neurotechnology and inform the translational pathway. (shrink)

In this chapter, I consider the idea that physician-assisted death might come into question in the cases of psychiatric patients who are incapable of making autonomous choices about ending their lives. I maintain that the main arguments for physician-assisted death found in recent medical ethical literature support physician-assisted death in some of those cases. After assessing several possible criticisms of what I have argued, I conclude that the idea that physicianassisted death can be acceptable in some cases of (...) psychiatric patients who lack autonomy ought to be taken into account in assessing the moral and legal acceptability of physician-assisted death. (shrink)

The history and genesis of major public clinical ethics controversies is intimately related to the publication of opinions and responses in media coverage. To provide a sample of public response in the media, this paper reports the results of a content analysis of letters to editors published in the four most prolific American newspapers for the Schiavo controversy. Opinions expressed in the letters sampled strongly supported the use of living wills and strongly condemned public attention to the case as well (...) as political interventions. Letters tended to be against withdrawal of life support, proxy consent and associated procedures as well as against court decisions and legal procedures. In comparison with reports written by journalists, letters to editors contained fewer controversial claims about Schiavo''s neurological condition and behavioural repertoire but similar loaded language to describe withdrawal of life support. Distinct public discourses can be encountered in different stakeholders suggesting complex and extensive pluralism even within the media. (shrink)

Direct-to-consumer advertising of healthcare products refers to a variety of marketing practices based on a combination of information and promotion strategies directed at consumers through different media such as radio and television broadcasts, newspaper and magazine ads, and, more recently, through the Internet. The principal form of marketing used by the pharmaceutical industry is the distribution of free samples to physicians but DTCA is an increasing part of global promotional spending for prescription drugs. Latest estimates suggest that DTCA now represents (...) an annual $3.2 billion enterprise for the U.S. pharmaceutical industry. Findings from the literature show that these substantial efforts are geared toward the newer pharmaceuticals for chronic conditions with huge market potentials. The lion's share is going to the 20 most prescribed pharmaceuticals. (shrink)

Objectives To characterize recruitment approaches to research on the brain and mind that involves Indigenous peoples. Methods We conducted a secondary analysis of a Harding et al. (2021) scoping review. Reviewers screened studies (_n_ = 66) for sampling methods, recruitment and engagement, positionality statements, and details on ethics approvals. Synthesis We identified twenty-nine (29) English-language articles relevant to the analysis. Of these, 52% (_n_ = 15/29) reported a mix of sampling methods; 45% (_n_ = 13/29) contained statements or information (...) class='Hi'>about author positionalities. While, overall, 24% (_n_ = 7/29) of the studies were missing information about ethics protocols, we observe an improvement over time in the reporting of approvals and use of community-engaged participant recruitment methods. Current brain research studies demonstrate ways of collaborating with Indigenous communities that meet existing ethics guidelines. To be wholly responsive to the needs of Indigenous peoples, however, researchers may need to exceed existing ethical benchmarks.. Positionality statements successfully detailed the relationships of the research teams with the communities with which they work, and contextualized recruitment methods. Conclusion Improved quality and meaningfulness of brain research with Indigenous peoples and trust in the research process and public health will be enhanced when remaining gaps in protecting and reporting of participant recruitment methods are closed. (shrink)

Background: The research community has a mandate to discover effective treatments for neurodegenerative disorders. The ethics landscape surrounding this mandate is in a constant state of flux, and ongoing challenges place ever greater demands on investigators to be accountable to the public and to answer questions about the implications of their work for health care, society, and policy. Methods: We surveyed US-based investigators involved in neurodegenerative diseases research about how they value ethics-related issues, what motivates them to give (...) consideration to those issues, and the barriers to doing so. Using the NIH CRISP database we identified 1,034 researchers with relevant, active grants and invited them to complete an online questionnaire. We received 193 responses. We used exploratory factor analysis to transform individual survey questions into a smaller set of factors, and linear regression to understand the effect of key variables of interest on the factor scores. Results: Ethics-related issues clustered into two groups: research ethics and external influences. Heads of research groups viewed issues of research ethics to be more important than the other respondents. Concern about external influences was related to overall interest in ethics. Motivators clustered into five groups: ensuring public understanding, external forces, requirements, values, and press and public. Heads of research groups were more motivated to ensure public understanding of research than the other respondents. Barriers clustered into four groups: lack of resources, administrative burden, relevance to the research, and lack of interest. Perceived lack of ethics resources was a particular barrier for investigators working in drug discovery. Conclusions: The data suggest that senior level neuroscientists working in the field of neurodegeneration (ND), and drug discovery specifically, are motivated to consider ethics issues related to their work, but the perceived lack of ethics resources thwarts their efforts. With bioethics centres at more than 50% of the institutions at which these respondents reside, the neuroscience and bioethics communities appear to be disconnected. Dedicated ethical, legal and social implications (ELSI) programs, such as those fully integrated into genetics and regenerative medicine, provide models for achieving meaningful partnerships not yet adequately realized for scholars and trainees interested in drug discovery for ND. (shrink)

Background: The advent of AIDS brought about a group of patients unwilling to accept crucial aspects of the methodological standards for clinical research investigating Phase 1 drugs, surgeries or devices. Their arguments against placebo controls in trials, which depended-at the time-on the terminal status of patient volunteers led to a renewed discussion of the ethics of denying patients with catastrophic illnesses access to last-chance experimental drugs, surgeries or devices. Sources of data: Existing ethics and health policy literature on (...) the topic of access to experimental drugs. Areas of agreement: The positions of those arguing for or against free access to experimental drugs for terminally ill patients are irreconcilable. Areas of controversy: At stake are questions about the kinds of personal sacrifices society can reasonably expect patients in clinical trials to make to ensure statistically predictive results. These would benefit by necessity a much larger number of current and future patients-the conflict is about individual versus public interests. It is also about the question of whether or not the state can legitimately prevent patients with terminal illnesses from unfettered access to experimental drugs, surgeries or devices in order to motivate them to participate in clinical trials. We review the ethical arguments for and against the provision of access to Phase 1 agents for terminally ill patients. Growing points: Finding a compromise between providing free or no access to Phase 1 drugs for terminally ill patients. Areas timely for developing research: We ought to investigate means to increase access to experimental drugs for terminally ill patients without sacrificing necessary clinical trials' sounds scientific methods. (shrink)

The Internet has quickly gained popularity as a major source of health-related information, but its impact is unclear. Here, we investigate the extent to which advocacy websites for three neurodevelopmental disorders—cerebral palsy (CP), autism spectrum disorder (ASD) and fetal alcohol spectrum disorder (FASD)—inform stakeholders about treatment options, and discuss the ethical challenges inherent in providing such information online. We identified major advocacy websites for each disorder and assessed website accountability, the number, attributes, and accessibility of treatments described, and the (...) valence of treatment information. With the exception of FASD websites, we found that advocacy websites provide a plethora of information about a wide variety of readily available products and services. Treatment information is primarily targeted at families and is overwhelmingly encouraging, regardless of the type or conventionality of treatments. Many websites acknowledge corporate sponsors. While the majority do not overtly advertise or endorse specific brands, they also do not prominently display disclaimers about the nature and intent of treatment information. Thus, while advocacy websites are organized to serve as information clearinghouses, they implicitly appear to provide endorsement of selected treatments and services. We conclude with recommendations for new partnerships between government-funded health organizations, advocacy and investigators to make more transparent the role of online information in informing treatment options and improving the evaluation of information. (shrink)

The article investigates the concept of self-illness ambiguity (SIA), which was recently re-introduced in the philosophy of psychiatry literature. SIA refers to situations in which patients are uncertain about whether features (symptoms, signs) of their illness should be attributed to their illness or to their ‘selves’. Identification of these features belongs to a more encompassing process of self- definition and -interpretation. The paper introduces a distinction between the notions of self-relatedness, self-referentiality (or: implicit self-signification), self-awareness (...) and self-interpretation. Each of these notions offers a different perspective on SIA, but these perspectives do not exclude one another. A further distinction will be developed between primary, secondary and tertiary forms of self-referentiality. The practical and conceptual relevance of these distinctions will be illustrated with case vignettes. Throughout the paper our findings will placed in the context of other philosophical work on the self, especially in the field of narrative theory (Ricoeur), phenomenology (Ratcliffe) and philosophy of mind. The article closes with a brief discussion about the appropriateness of the term ambiguity and the potential of SIA as concept in the context of clinical psychiatry. Directions for future work will be indicated. (shrink)

In follow-up to a large-scale ethics survey of neuroscientists whose research involves neuroimaging, brain stimulation and imaging genetics, we conducted focus groups and interviews to explore their sense of responsibility about integrating ethics into neuroimaging and readiness to adopt new ethics strategies as part of their research. Safety, trust and virtue were key motivators for incorporating ethics into neuroimaging research. Managing incidental findings emerged as a predominant daily challenge for faculty, while student reports focused on the malleability of neuroimaging (...) data and scientific integrity. The most frequently cited barrier was time and administrative burden associated with the ethics review process. Lack of scholarly training in ethics also emerged as a major barrier. Participants constructively offered remedies to these challenges: development and dissemination of best practices and standardized ethics review for minimally invasive neuroimaging protocols. Students in particular, urged changes to curricula to include early, focused training in ethics. (shrink)

"The premise of the Jewish attitude toward illness is that living is sacred, that good health enables us to live a fully religious life, and that disease is an evil. Any effective therapy is permitted, even if it conflicts with Jewish law. To bring about healing is a responsibility not only of the person who is ill and of the professional caregivers, but also of the loved ones, and of the larger circle of family, friends, and community." " (...) class='Hi'>Illness and Health in the Jewish Tradition is an anthology of traditional and modern Jewish writings that highlights these basic principles."--BOOK JACKET.Title Summary field provided by Blackwell North America, Inc. All Rights Reserved. (shrink)

Objective: Although nurses have an important role in the care process surrounding artificial food or fluid administration in patients with dementia or in terminally ill patients, little is known about their attitudes towards this issue. The purpose of this study was to thoroughly examine nurses’ attitudes by means of a literature review.Method: An extensive systematic search of the electronic databases PubMed, Cinahl, PsycINFO, The Cochrane Library, FRANCIS, Philosopher’s Index and Social Sciences Citation Index was conducted to identify pertinent (...) articles published from January 1990 to January 2007.Findings: Nurses’ arguments for or against could be categorised as ethical-legal, clinical or social-professional. The most important arguments explicitly for artificial food and fluid administration in patients with dementia or in terminally ill patients were sanctity of life, considering artificial food and fluid administration as basic nursing care, and giving reliable nutrition, hydration or medication. An explicit counter-argument was the high cost of treatment. Arguments used by opponents and proponents were quality of life and dignified death. The arguments were not strikingly different for the two patient populations. It turned out that the nurses’ ethical arguments remarkably reflected the current ethical debate. But some of their clinical presuppositions contradicted current clinical evidence.Conclusion: The interaction between clinical facts and ethical reflections makes the findings of this review extremely relevant for clinical ethics. A large need exists to clearly communicate to nurses the latest clinical evidence and the main results of ongoing ethical debates. (shrink)

Written in a jargon-free way, Body Matters provides a clear and accessible phenomenological critique of core assumptions in mainstream biomedicine and explores ways in which health and illness are experienced and interpreted differently in various socio-historical situations. By drawing on the disciplines of literature, cultural anthropology, sociology, medical history, and philosophy, the authors attempt to dismantle common presuppositions we have about human afflictions and examine how the methods of phenomenology open up new ways to interpret the body (...) and to re-envision therapy. (shrink)

Abstract: Critics of Havi Carel's 2008 book, Illness: The Cry of the Flesh, have contended that Carel's deployment of phenomenological philosophy adds little to commonsense views about illness and that Carel relies too heavily on emotion-laden autobiographical anecdotes. Against these contentions this article argues: first, that a perfectly respectable task of philosophy is to find reasons to support pre-existing beliefs; and secondly, that Carel's use of anecdotes, while certainly appealing to readers' emotions, constitutes part of a legitimate (...) argumentative strategy. The article links these proposals with broader debates concerning the proper task of philosophy and the role of emotionality and imagination in philosophical inquiry. (shrink)

When a terminally ill patient kills herself, using a drug prescribed by a physician for this purpose, in bioethical literature this would be described as a case of physician-assisted suicide. This would also be a case of suicide according to the standard account of suicide in the philosophical literature. However, in recent years, some authors have argued that terminally ill self-killing in fact should not be considered suicide. In this paper, we don’t try to address the philosophical merits (...) of such arguments. Instead, we ask whether these considerations align with the way non-philosophers think about suicide. We present empirical evidence from four studies that address different concerns raised about terminally ill self-killing being a suicide. We conclude that the raised concerns cannot be supported by the folk understanding of suicide. (shrink)

This essay recounts recent psychiatric literature about the probable causes of Nietzsche's collapse, endorsing the conclusion that it was not syphilis. The essay then explores the role of madness in Nietzsche's philosophy, and also explores to what extent some sort of madness - whether psychological or philosophical - influenced his later philosophy.

The first decisive steps of medicine towards becoming a science in its present shape happen to coincide with “the rise of the novel” in the eighteenth century. Before this well known and in our days still growing scientific specialization of medicine, the connections between literature and medicine were both many and close. By reading and analyzing a contemporary novel, The Death of a Beekeeper by the Swedish author Lars Gustafsson, this article is an attempt to explore to which extent (...) a fictional narrative about a unique case of cancer may illuminate challenges associated with the experience of serious illness. Our claim is that medicine might draw wisdom from literature, its ability to create connections through narrative, to illuminate the complexity of ethical dilemmas, and to intertwine symptoms, life stories, and contexts. We argue that by being in the company of literary narratives and philosophical questions, physicians as well as other health care professionals may acquire clinically relevant skills which help them reach the ethically defined goals of their profession. (shrink)

According to the received view in the literature on homonymy and polysemy representation, there is a difference between how polysemes and homonyms are represented in our mental lexicons. More concretely, the received view holds that whereas the meanings associated with a homonymous expression are (mentally) represented in separate lexical entries, the meanings associated with a polysemous expression are represented together in a single lexical entry. It is usually argued that this is the picture that is supported by the growing (...) body of empirical evidence coming from psycholinguistics. Empirical studies of ambiguity processing and resolution consistently show that polysemous expressions enjoy various processing advantages compared to homonyms, and the received view is generally taken to be required in order to explain these results. The aim of this paper is not only to show that this is not the case but also, and more fundamentally, that the received view falls far short of explaining the available data to a sufficient degree. As a result, the received view is caught up in an explanatory dilemma that I dub the Continuum Puzzle. I then claim that the best way to escape this puzzle is to give up the received view’s core thesis in favor of an alternative view consistent with the empirical evidence. Reaching such an alternative will require rejecting the following pervasive but ill-motivated assumption: Differences in ambiguity processing and resolution can only be explained by there being some corresponding differences in the architecture of our mental lexicons. (shrink)

Medical accounts of the absence of conscience are intriguing for the way they seem disposed to drift away from the ideal of scientific objectivity and towards fictional representations of the subject. I examine here several contemporary accounts of psychopathy by Robert Hare and Paul Babiak. I first note how they locate the truth about their subject in fiction, then go on to contend that their accounts ought to be thought of as a “mythos,” for they betray a telling uncertainty (...) about where “fact” ends and “fantasy” begins, as well as the means of distinguishing mental health from mental illness in regard to some social roles. (shrink)

The disciplinary boundaries of social studies on the body, health and illness are widely dispersed and no less so when inquiring into the subject of media representations. So much research from a range of disciplines seeps into this area that it can be difficult to draw meaningful boundaries around it. Such issues as disability, eating disorders, sexually transmitted diseases, mental disorder, cosmetic surgery, drug cultures and much more, all fall within this area of concern. Moreover, debates in other areas (...) of media inquiry are often explained through a health-related lens. For instance, discussions about computer games are repeatedly subjected to health-related discourses over whether their use leads to an increasingly sedentary, young population – a claim that is not borne out in the literature. The breadth of this subject prompts us to consider how to limit the study of media representations of health, illness and the body, when each and every action we undertake can be interpreted through this conceptual lens. (shrink)

Critical psychiatry has recently echoed Szasz’s longstanding concerns about medical understandings of mental distress. According to Szaszianism, the analogy between mental and somatic disorders is illegitimate because the former presuppose psychosocial and ethical norms, whereas the latter merely involve deviations from natural ones. So-called “having-it-both-ways” views have contested that social norms and values play a role in _both_ mental and somatic healthcare, thus rejecting that the influence of socio-normative considerations in mental healthcare compromises the analogy between mental and somatic (...) disorders. This paper has two goals. Firstly, I argue that having-it-both-ways views fail to provide a compelling answer to Szasz’s challenge. The reason is that what is essential to Szasz’s argument is not that mental disorder attributions involve value judgements, but that mental attributions _in general_ do. Mental disorders are thus doubly value-laden and, _qua_ mental, only metaphorically possible. To illustrate this, I construe Szasz’s view and Fulford’s having-it-both-ways approach as endorsing two different kinds of expressivism about mental disorders, pointing out their different implications for the analysis of delusions. Secondly, I argue, against Szaszianism, that Szasz’s rejection of the analogy is relatively irrelevant for discussions about the appropriateness of medicalizing mental distress. Specifically, I draw from socio-normative approaches to the psychopathology/social deviance distinction and mad and neurodiversity literature to argue that a) it is still possible to distinguish social deviance from psychopathology once we reject the analogy; and b) that _both_ medicalizing and normalizing attitudes to mental distress can harmfully wrong people from relevant collectives. (shrink)

Although an invasive medical intervention, Deep Brain Stimulation (DBS) has been regarded as an efficient and safe treatment of Parkinson’s disease for the last 20 years. In terms of clinical ethics, it is worth asking whether the use of DBS may have unanticipated negative effects similar to those associated with other types of psychosurgery. Clinical studies of epileptic patients who have undergone an anterior temporal lobectomy have identified a range of side effects and complications in a number of domains: psychological, (...) behavioural, affective and social. In many cases, patients express difficulty adjusting from being chronically ill to their new status as ‘treated’ or ‘seizure free’. This postoperative response adjustment has been described in the literature on epilepsy as the ‘Burden of Normality’ (BoN) syndrome. Most of the discussion about DBS postoperative changes to self is focused on abnormal side effects caused by the intervention (ie, hypersexuality, hypomania, etc). By contrast, relatively little attention is paid to the idea that successfully ‘treated’ individuals might experience difficulties in adjusting to becoming ‘normal’. The purpose of this paper is (1) to articulate the postoperative DBS psychosocial adjustment process in terms of the BoN syndrome, (2) to address whether the BoN syndrome illustrates that DBS treatment poses a threat to the patient’s identity, and (3) to examine whether the current framework for rehabilitation after DBS procedures should be updated and take into account the BoN syndrome as a postoperative self-change response. (shrink)

An influential body of recent work on moral psychology has stressed the interconnections among ethics, narrative, and empathy. Yet as Patrick Colm Hogan argues, this work is so vague in its use of the term 'narrative' as to be almost substanceless, and this vagueness is in large part due to the neglect of literary study. Extending his previous work on universal story structures, Hogan argues that we can transform ill-defined intuitions about narrative and ethics into explicit and systematic accounts (...) of the deep connections between moral attitudes and narratives. These connections are, in turn, inseparable from empathy, a concept that Hogan proceeds to clarify and defend against a number of widely read critiques. In the course of the book, Hogan develops and illustrates his arguments through analyses of global narratives, constructing illuminating ethical interpretations of literary works ranging from Shakespeare to Chinese drama and the Bhagavad Gita. (shrink)

This paper explores causation in the context of health care practice, in particular, primary care. Causation in health care is necessarily premised on the concepts of disease and illness and the ways they are deviations from health. The paper reviews and broadly categorises concepts of illness most commonly found in the literature in terms of the biomedical, biopsychosocial, and agency models. It is argued that although each model has its place in the gamut of health care practice, (...) primary care implicitly or explicitly uses an agency model most frequently. By explicitly acknowledging the role that patients’ values and expectations have in utilising their physiological, psychological and social capacities to live their lives, clinicians can gain a clearer understanding of how a situation has come about and why it has become a health problem for the patient. (shrink)

Recent literature has suggested that generics can harbor and propagate worrying ideologies in a manner which is often not appreciated by speakers. In this article, I argue that the use of generics to convey information about mental illness is unhelpful, whether the knowledge structure conveyed by the generic is 'accurate' or not. Inaccurate generics contribute to insidious forms of social stereotyping and stigma by encouraging us to simplistically generalize characteristics found in very few category members to other (...) members of that kind.Yet, even where the knowledge structure underlying the generic is accurate, generics remain an unhelpful way of talking about mental illness. This is because... (shrink)

Withholding and withdrawing artificial nutrition and hydration from terminally ill patients poses many ethical challenges. The literature provides little information about the Islamic beliefs, attitudes, and laws related to these challenges. Artificial nutrition and hydration may be futile and reduce quality of life. They can also harm the terminally ill patient because of complications such as aspiration pneumonia, dyspnea, nausea, diarrhea, and hypervolemia. From the perspective of Islam, rules governing the care of terminally ill patients are derived from (...) the principle that injury and harm should be prevented or avoided. The hastening of death by the withdrawal of food and drink is forbidden, but Islamic law permits the withdrawal of futile, death-delaying treatment, including life support. Nutritional support is considered basic care and not medical treatment, and there is an obligation to provide nutrition and hydration for the dying person unless it shortens life, causes more harm than benefit, or is contrary to an advance directive that is consistent with Islamic law. The decision about withholding or withdrawing artificial nutrition and hydration from the terminally ill Muslim patient is made with informed consent, considering the clinical context of minimizing harm to the patient, with input from the patient, family members, health care providers, and religious scholars. (shrink)

Samuel Beckett and Jorge Luis Borges have presented 20th century literature with a distinctive gallery of solitary figures who suffer from a series of physiological ailments: invalidism, decrepitude, infirmity and blindness, as well as neurological conditions such as amnesia and autism spectrum disorders. Beckett and Borges were concerned with the dynamics between illness and creativity, the literary representation of physical and mental disabilities, the processes of remembering and forgetting, and the inevitability of death. This article explores the depiction (...) of physically and mentally disabled characters in Borges' Funes the Memorious (1942)—a story about an Uruguayan gaucho who has been left paralysed after a fall from a horse which simultaneously endowed him with an infallible memory and perception—and Beckett's Trilogy: Molloy (1951), Malone Dies (1951) and The Unnamable (1953). It examines the prodigious memory of Funes and the forgetful minds of Molloy and Malone with reference to influential neuropsychological studies such as Alexander Luria's twofold exploration of memory and forgetfulness in The Mind of a Mnemonist (1968) and The Man with a Shattered World (1972). The article demonstrates that in contrast to Beckett's amnesiacs and Luria's brain-damaged patient, who are able to transcend their circumstances through cathartic writing, Borges' and Luria's mnemonic prodigies fail to achieve anything significant with their unlimited memories and remain imprisoned within their cognitive disabilities. It reveals that medical discourses can provide invaluable insights and lead to a deeper understanding of the minds and bodily afflictions of literary characters. (shrink)

Since Shelly Kagan pointed out the relative neglect of ill-being in philosophical discussions, several philosophers have contributed to an emerging literature on its constituents. In doing so, they have explored possible asymmetries between the constituents of ill-being and the constituents of positive well-being. This paper explores some possible asymmetries that may arise elsewhere in the philosophy of ill-being. In particular, it considers whether there is an asymmetry between the contribution made to prudential value by equal quantities of goods and (...) bads. It then considers a similar question about the contributions made to moral value by equal quantities of ill-being and positive well-being. The paper explores some of the difficulties involved in assessing these questions. It ends by considering broader differences, both practical and theoretical, between the significance of ill-being and of positive well-being. (shrink)

This essay is composed of five stories written by practicing physicians about their patients. Each clinical story describes a challenging ethical condition–potential abuse of medical power, gravely ill and probably over-treated newborns, iatrogenic narcotic addiction, deceived dying people. Rather than singling out one ethical conflict to resolve or adjudicate, the authors attempt, through literary methods, to grasp the singular experiences of their patients and to act according to the deep structures of their patients' lives. Examining these five stories with (...) simple literary tools–attention to narrative frames, time, plot, and desire–reveals the mechanisms through which acts of writing and reading contribute to clinical clarity and ethical actions. (shrink)

A compelling and incisive book that questions the overuse of mental health terms to describe universal human emotions Public awareness of mental illness has been transformed in recent years, but our understanding of how to define it has yet to catch up. Too often, psychiatric disorders are confused with the inherent stresses and challenges of human experience. A narrative has taken hold that a mental health crisis has been building among young people. In this profoundly sensitive and constructive book, (...) psychologist Lucy Foulkes argues that the crisis is one of ignorance as much as illness. Have we raised a 'snowflake' generation? Or are today's young people subjected to greater stress, exacerbated by social media, than ever before? Foulkes shows that both perspectives are useful but limited. The real question in need of answering is: how should we distinguish between 'normal' suffering and actual illness? Drawing on her extensive knowledge of the scientific and clinical literature, Foulkes explains what is known about mental health problems-how they arise, why they so often appear during adolescence, the various tools we have to cope with them-but also what remains unclear: distinguishing between normality and disorder is essential if we are to provide the appropriate help, but no clear line between the two exists in nature. Providing necessary clarity and nuance, Losing Our Minds argues that the widespread misunderstanding of this aspect of mental illness might be contributing to its apparent prevalence. (shrink)