The American Journal of Bioethics, Volume 12, Issue 4, Page 29-31, April 2012.

This case analysis examines questions that arise when an ethically appropriate recommendation initially appears to be in conflict with the legally appropriate recommendation. The case involves a dying, incapacitated octogenarian who had friends who were willing to share her values, but not to make decisions on her behalf. These circumstances put the patient in the unique position of being legally considered a “patient alone,” but who was ethically like a patient with surrogates—distinctions that are crucial when making end-of-life decisions under (...) the New York Family Health Care Decisions Act. A strict interpretation of the law initially seemed to be in conflict with an ethically appropriate outcome. By gaining a deeper understanding of the patient from those who cared about her, however, and by considering a broader interpretation of the law, an outcome was reached that worked within the framework of the law and honored the patient’s reported values. (shrink)

Guidance for Healthcare Ethics Committees edited by D. Micah Hester and Toby Schonfeld is a comprehensive guide for members of ethics committees. The book is designed to address the three essential missions of healthcare ethics committees : Consultation, Policy Writing, and Education. Although there is already significant literature devoted to ethics consultation, the policy writing and education functions of ethics committees get relatively little attention in the literature. It is valuable to have a source that combines all components of the (...) HEC duties. The book addresses a wide range of topics within each area, with the greatest focus on consultation.Guidance for Healthcare Ethics Committees is divided into four parts. The first is an introductory section that gives a broad overview of ethical theories, legal issues affecting ethics committees, and cultural and religious issues that often impact the work of ethics committees. The latter three sections each t .. (shrink)

In “On Avoiding Deep Dementia,” Norman Cantor astutely notes that, for some individuals, the concept of “protracted maintenance during progressive cognitive dysfunction and helplessness is an intolerably degrading prospect.” This cannot be argued with. Cantor's solution, however—that in the wake of a dementia diagnosis, patients should have the option to direct, in advance, instructions for voluntary stopping of eating and drinking should they develop a state of deep dementia—is more ethically challenging than it may first appear.Respect for autonomy is one (...) of the most fundamental principles of bioethics, and it requires that we allow patients with capacity to refuse life‐sustaining treatment, even when that treatment is something as seemingly innocuous as nutrition and hydration. If a capacitated person uses an advance directive to prospectively refuse artificial nutrition or hydration, then that treatment must be withheld if the person develops dementia and loses the ability or willingness to eat. Cantor is incorrect, however, in suggesting that an advance directive can require that nutrition and hydration be withheld from a patient with dementia who actively requests to eat or drink. Regardless of the language in an advance directive, caregivers cannot be compelled to abandon their duty to attend to the person's human dignity, nor can physicians be compelled to sedate a person with moderate or severe dementia because that person continues to be receptive to eating and drinking. (shrink)

Checklists have been used to improve quality in many industries, including healthcare. The use of checklists, however, has not been extensively evaluated in clinical ethics consultation. This article seeks to fill this gap by exploring the efficacy of using a checklist in ethics consultation, as tested by an empirical investigation of the use of the checklist at a large academic medical system (Cleveland Clinic). The specific aims of this project are as follows: (1) to improve the quality of ethics consultations (...) by providing reminders to ethics consultants about process steps that are important for most patient-centered ethics consultations, (2) to create consistency in the ethics consultation process across the medical system, and (3) to establish an effective educational tool for trainers and trainees in clinical ethics consultation. The checklist was developed after a thorough literature review and an iterative process of revising and testing by a group of experienced ethics consultants. To pilot test the checklist, it was distributed to 46 ethics consultants. After a six-month pilot period in which ethics professionals used the checklist during their clinical activities, a survey was distributed to all of those who used the checklist. The 10-item survey examined consultants’ perceptions regarding the three aims listed above. Of the 25 survey respondents, 11 self-reported as experts in ethics consultation, nine perceived themselves to have mid-level expertise, and five self-reported as novices. The majority (68 percent) of all respondents, regardless of expertise, believed that the checklist could be a “helpful” or “very helpful” tool in the consultation process generally. Novices were more likely than experts to believe that the checklist would be useful in conducting consultations. The limitations of this study include: reduced generalizability given that this project was conducted at one medical system, utilized a small sample size, and used self-reported quality outcome measures. Despite these limitations, to the authors’ knowledge this is the first investigatation of the use of a checklist systematically to improve quality in ethics consultation. Importantly, our findings shed light on ways this checklist can be used to improve ethics consultation, including its use as an educational tool. The authors hope to test the checklist with consultants in other healthcare systems to explore its usefulness in different healthcare environments. (shrink)

The relationship between dementia and criminal behavior perplexes legal and health care systems. Dementia is a progressive clinical syndrome defined by impairment in at least two cognitive domains that interferes with one's activities of daily. Dementia symptoms have been associated with behaviors that violate social norms and constitute criminal actions. A failure to address a gap in policies that support appropriate management of individuals with dementia reflects a failure in our social obligation to care for those who are most vulnerable (...) amongst us. Categorical protections, informed by precedent models applied to juveniles and individuals with psychiatric illness, could help meet a social obligation to provide protections to individuals with dementia. We propose an approach that integrates affirmative defenses to mitigate criminal liability and sentencing restrictions to prevent cruel and unusual punishment. (shrink)

In this issue of the Hastings Center Report, Daniel Brudney suggests that clinicians have an overly deferential attitude toward their patients’ surrogate decision-makers that is rooted in a wrongful investment of moral authority. He maintains that surrogate decision-makers have no moral right to decide for their loved ones and that their value in the decision-making process is limited to their knowledge of their loved one's preferences. If operationalized, Brudney's framework would ease the way for clinicians to remove a surrogate who (...) cannot provide information relevant to the patient's preferences and to resort to a paternalistic model of decision-making. Brudney fails to consider that the value of the surrogate does not flow from the surrogate, but rather from the patient's moral claim to have decisions made for him or her by a loved one. This claim recognizes that surrogates have intrinsic value through their relationship to and knowledge of the patient. Bioethics consultation services can assist clinical teams in engaging with the human crowd that surrounds each patient and navigating conflicting values and goals. This relational approach embraces the “mire and blood” that is endemic to relationships and clinical encounters. (shrink)

Since the appearance of a widely influential book, Self-Knowledge and Self-ldentity, Sydney Shoemaker has continued to work on a series of interrelated issues in the philosophy of mind and metaphysics. This volume contains a collection of the most important essays he has published since then. The topics that he deals with here include, among others, the nature of personal and other forms of identity, the relation of time to change, the nature of properties and causality and the relation between (...) the two, dualism and immortality, and the nature of mental states. All the essays show the same care and precision in argument as the earlier book, but they also reveal a substantial shift in Professor Shoemaker's position to a form of materialism. In fact, a number of papers together constitute what is probably the most subtle and rigourous defence yet of a sophisticated functionalism in the account of the mind. (shrink)

Since the appearance of a widely influential book, Self-Knowledge and Self-ldentity, Sydney Shoemaker has continued to work on a series of interrelated issues in the philosophy of mind and metaphysics. This volume contains a collection of the most important essays he has published since then. The topics that he deals with here include, among others, the nature of personal and other forms of identity, the relation of time to change, the nature of properties and causality and the relation between (...) the two, dualism and immortality, and the nature of mental states. All the essays show the same care and precision in argument as the earlier book, but they also reveal a substantial shift in Professor Shoemaker's position to a form of materialism. In fact, a number of papers together constitute what is probably the most subtle and rigourous defence yet of a sophisticated functionalism in the account of the mind. (shrink)

Two decades ago, in 1994, in the context of the 4th EU Framework Programme, ELSA was introduced as a label for developing and funding research into the ethical, legal and social aspects of emerging sciences and technologies. Currently, particularly in the context of EU funding initiatives such as Horizon2020, a new label has been forged, namely Responsible Research and Innovation. What is implied in this metonymy, this semantic shift? What is so new about RRI in comparison to ELSA? First of (...) all, for both labels, the signifier was introduced in a top-down manner, well before the concept that was signified by it had acquired a clear and stable profile. In other words, the signifier preceded the research strategies actually covered by these labels. Moreover, the newness of RRI does not reside in its interactive and anticipatory orientation, as is suggested by authors who introduced the term, but rather in its emphases on social-economic impacts. (shrink)

This grounded study investigated the negotiation of authorship by faculty members, graduate student mentors, and their undergraduate protégés in undergraduate research experiences at a private research university in the northeastern United States. Semi-structured interviews using complementary scripts were conducted separately with 42 participants over a 3 year period to probe their knowledge and understanding of responsible authorship and publication practices and learn how faculty and students entered into authorship decision-making intended to lead to the publication of peer-reviewed technical papers. Herein (...) the theoretical model for the negotiation of authorship developed through the analysis of these interviews is reported. The model identifies critical causal and intervening conditions responsible for the coping strategies faculty and students employ, which, in our study, appear to often produce unfortunate consequences for all involved. The undergraduate student researchers and their graduate student mentors interviewed in this study exhibited a limited understanding of authorship and the requirements for authorship in their research groups. The power differential between faculty and students, the students’ limited epistemic development, the busy-ness of the faculty, and the faculty’s failure to prioritize authorship have been identified as key factors inhibiting both undergraduate and graduate students from developing a deeper understanding of responsible authorship and publication practices. Implications for graduate education and undergraduate research are discussed, and strategies for helping all students to develop a deeper understanding of authorship are identified. (shrink)

Poor Eliza -- Pax Americana : the case of Show boat -- National brands, national body : Imitation of life -- Uncle Sam needs a wife : citizenship and denegation -- Remembering love, forgetting everything else : Now, voyager -- "It's not the tragedies that kill us, it's the messes" : femininity, formalism, and Dorothy Parker -- The compulsion to repeat femininity : Landscape for a good woman and The life and loves of a she-devil.

A fundamental goal of research in neuroscience is to uncover the causal structure of the brain. This focus on causation makes sense, because causal information can provide explanations of brain function and identify reliable targets with which to understand cognitive function and prevent or change neurological conditions and psychiatric disorders. In this research, one of the most frequently used causal concepts is ‘mechanism’ — this is seen in the literature and language of the field, in grant and funding inquiries that (...) specify what research is supported, and in journal guidelines on which contributions are considered for publication. In these contexts, mechanisms are commonly tied to expressions of the main aims of the field and cited as the ‘fundamental’, ‘foundational’ and/or ‘basic’ unit for understanding the brain. Despite its common usage and perceived importance, mechanism is used in different ways that are rarely distinguished. Given that this concept is defined in different ways throughout the field — and that there is often no clarification of which definition is intended — there remains a marked ambiguity about the fundamental goals, orientation and principles of the field. Here we provide an overview of causation and mechanism from the perspectives of neuroscience and philosophy of science, in order to address these challenges. (shrink)

Background Diversity in Institutional Review Board (IRB) membership is important for both intrinsic and instrumental reasons, including fairness, promoting trust, improving decision quality, and responding to systemic racism. Yet U.S. IRBs remain racially and ethnically homogeneous, even as gender diversity has improved. Little is known about IRB chairpersons’ perspectives on membership diversity and barriers to increasing it, as well as current institutional efforts to promote diversity, equity, and inclusion (DEI) within IRB membership.Methods We surveyed IRB chairpersons leading U.S. boards registered (...) with the Office for Human Research Protections. Here, we focus exclusively on responses from a subset of 388 chairpersons of IRBs at universities and academic medical centers (AMCs).Results Board chairs were predominantly white and evenly split between men and women. Only about half reported that their boards had at least one member who is Black or African American (51%), Asian (56%), or Hispanic (48%), with 85% of university/AMC boards comprised entirely (15%) or mostly (70%) of white members. Most IRB chairpersons (64%) reported satisfaction with the current diversity of their membership. Participants largely agreed that considering diversity in the selection of IRB members is important (91%), including to improve the quality of IRB deliberation (80%), with an emphasis on racial/ethnic (85%) and gender diversity (74%). Most participants (80%) reported some type of active DEI effort regarding board membership at their university/AMC and just over half (57%) expressed satisfaction with these efforts.Conclusions Our national survey found that although university/AMC IRB chairpersons report valuing diversity in board membership, it may be lacking in key areas. Going forward, it will be important to specify clear reasons for diversity in the IRB context, as well to establish targets for acceptable levels of board diversity and to match DEI efforts to those targets. (shrink)

Dr Sydney Brenner has played a major, and unique, role in biology during the past 40 years. His contributions have ranged from key work on the structure of the genetic code and the existence of mRNA through the development of Caenorhabditis elegans as a key model system in developmental biology to genomic analysis and function in vertebrates. BioEssays went to interview Dr Brenner at his home in the cathedral city of Ely, England, on the significance of the genome projects (...) for human biology, in particular, and for biology, in general. (shrink)

In the last two decades few topics in philosophy of science have received as much attention as mechanistic explanation. A significant motivation for these accounts is that scientists frequently use the term “mechanism” in their explanations of biological phenomena. While scientists appeal to a variety of causal concepts in their explanations, many philosophers argue or assume that all of these concepts are well understood with the single notion of mechanism. This reveals a significant problem with mainstream mechanistic accounts– although philosophers (...) use the term “mechanism” interchangeably with other causal concepts, this is not something that scientists always do. This paper analyses two causal concepts in biology–the notions of “mechanism” and “pathway”–and how they figure in biological explanation. I argue that these concepts have unique features, that they are associated with distinct strategies of causal investigation, and that they figure in importantly different types of explanation. (shrink)

Slurring language has had a lot of recent interest, but the focus has been almost exclusively on racial slurs. Gendered pejoratives, on the other hand—terms like “slut,” “bitch,” or “sissy”—do not fit into existing accounts of slurring terms, as these accounts require the existence of neutral correlates, which, I argue, these gendered pejoratives lack. Rather than showing that these terms are not slurs, I argue that this challenges the assumption that slurs must have neutral correlates, and so that a new (...) approach to thinking about the meaning of slurring terms is required. (shrink)

_Twenty-First Century Inequality & Capitalism: Piketty, Marx and Beyond_ is a collection of critical essays on the economist’s iconic 2014 book, from the perspective of critical theory, global political economy or public sociology, mostly drawn from the Marxist tradition.

The idea that introspection is transparent—that we know our minds by looking out to the world, not inwards towards some mental item—seems quite appealing when we think about belief. It seems that we know our beliefs by attending to their content; I know that I believe there is a café nearby by thinking about the streets near me, and not by thinking directly about my mind. Such an account is thought to have several advantages—for example, it is thought to avoid (...) the need to posit any extra mental faculties peculiar to introspection. In this paper I discuss recent attempts to extend this kind of outwards-looking account to our introspective knowledge of desire. According to these accounts, we know our desires by attending to what in the world we judge to be valuable. This, however, does not deal satisfactorily with cases where my value judgments and introspective knowledge of my desires come apart. I propose a better alternative for the proponent of transparency, but one that requires giving up on the supposed metaphysical advantages. (shrink)

Kaplan and Craver claim that all explanations in neuroscience appeal to mechanisms. They extend this view to the use of mathematical models in neuroscience and propose a constraint such models must meet in order to be explanatory. I analyze a mathematical model used to provide explanations in dynamical systems neuroscience and indicate how this explanation cannot be accommodated by the mechanist framework. I argue that this explanation is well characterized by Batterman’s account of minimal model explanations and that it demonstrates (...) how relationships between explanatory models in neuroscience and the systems they represent is more complex than has been appreciated. (shrink)

As clinical trials end, little is understood about how participants exiting from clinical trials approach decisions related to the removal or post-trial use of investigational brain implants, such as deep brain stimulation (DBS) devices. This empirical bioethics study examines how research participants experience the process of exit from research at the end of clinical trials of implanted neural devices. Using a modified grounded theory study design, we conducted semi-structured, in-depth interviews with 16 former research participants from clinical trials of DBS (...) and responsive neurostimulation (RNS). Open-ended questions elicited motivations for joining the trial, understanding of study procedures at the time of initial informed consent, the process of exiting from research, and decisions about device removal or post-trial device use. Thematic analysis identified categories related to: limited preparedness for the end of research participation, straightforwardness of decisions to explant or keep the device, reconciling with the end of research participation, reconciling post-trial expectations, and achieving a sense of closure after exit from research. A preliminary theoretical model describes contextual factors influencing the process and experience of exit from research. Experiences of clinical trial participants should guide research practices to enhance the ethical design and conduct of clinical trials in DBS and other brain devices. (shrink)

According to mainstream philosophical views causal explanation in biology and neuroscience is mechanistic. As the term ‘mechanism’ gets regular use in these fields it is unsurprising that philosophers consider it important to scientific explanation. What is surprising is that they consider it the only causal term of importance. This paper provides an analysis of a new causal concept—it examines the cascade concept in science and the causal structure it refers to. I argue that this concept is importantly different from the (...) notion of mechanism and that this difference matters for our understanding of causation and explanation in science. (shrink)

Dispositional ascriptions do not entail the counterfactuals we might expect, as interfering factors may be poised to prevent the disposition from manifesting in its very stimulus conditions. Such factors are commonly called finks and masks. It is thought, however, that finks and masks cannot be intrinsic to the disposition bearer; if an intrinsic property of the object would prevent a particular response in certain conditions, the object fails to have the corresponding disposition. I argue that we should accept intrinsic finks (...) and masks if we think there are finks and masks at all, and also if we maintain that paradigmatic dispositions are intrinsic. This last point is particularly problematic for the claim that there cannot be intrinsic finks and masks, for if paradigmatic dispositions are not intrinsic then the central argument for the impossibility of intrinsic finks and masks is undermined. (shrink)

_Twenty-First Century Inequality & Capitalism: Piketty, Marx and Beyond_ is a collection of critical essays on the economist’s iconic 2014 book, from the perspective of critical theory, global political economy or public sociology, mostly drawn from the Marxist tradition.

This chapter is a sustained reflection on the sorts of place-based knowledge that characterise making one’s way around in a Ruist world. As we know, Confucius and Mencius spent much of their lives travelling, and, I argue, this was essential in forming their vision of a comprehensive and cohesive world order. I suggest three motifs for place-based knowing: terrestrial geography, metaphysical geography, and moral geography. Terrestrial geography includes physical, topographical, and social geographical paradigms. These are connected by the importance of (...) travel, by way of which one experiences the physical counterparts of such thematic analogies as lofty mountains and resolute evergreens. Finding and forging pathways through life and avoiding stagnating dead-ends reveal the second motif, metaphysical geography. In metaphysical geography, the metaphor of smooth movement along clear paths represents success, understanding, even wisdom. Blocked, unnavigable, and dead-end paths represent failure, confusion, and ignorance. In moral geography, space, time, people, events, and things are oriented and relationally connected via moral landmarks and ties. Knowing what to do on behalf of oneself and the world is the most epistemologically potent geographical knowledge one may have. It requires a depth of knowledge both of oneself and the world, as well as how one’s moral acts will have the most profound effects. (shrink)

This article explores the question of the role of religion in the public square through the lens of Richard Rorty’s more general public–private distinction. When we note his various positions over the years on the role of religion in the public square we observe a shift that yields a more favorable public role for religion so long as it limits itself to social action and refrains from making knowledge-claims that serve as tools of the powerful. But if, according to Rorty, (...) religion per se is no longer the problem, then what becomes of his efforts to endorse a more general public–private distinction? The argument set forth assesses the inadequacies and limitations of Rorty’s assumptions about the public–private split and suggests another way of framing the issue that will prove productive in debates concerning the role of religion in the public square. (shrink)

In this paper, I identify a form of epistemic insensitivity that occurs when someone fails to make proper use of the epistemic tools at their disposal in order to bring their beliefs in line with epistemically relevant evidence that is available to them. I call this kind of insensitivity agential insensitivity because it stems from the epistemic behavior of an individual agent. Agential insensitivity can manifest as a failure to either attend to relevant and available evidence, or appropriately interpret evidence (...) that is attended to. The concept of agential insensitivity allows us to conceptualize the kind of not-knowing involved in forms of ignorance that are cultivated and maintained by individual agents, especially when this ignorance is enabled or encouraged by social structures. I use the skepticism about racial disparities in policing practices that is displayed by many white Americans as a lens for exploring this connection. Understanding agential insensitivity thus provides insight into both social and epistemic phenomena. (shrink)

While there is now considerable anxiety about whether the psychological theory presupposed by virtue ethics is empirically sustainable, analogous issues have received little attention in the virtue epistemology literature. This paper argues that virtue epistemology encounters challenges reminiscent of those recently encountered by virtue ethics: just as seemingly trivial variation in context provokes unsettling variation in patterns of moral behavior, trivial variation in context elicits unsettling variation in patterns of cognitive functioning. Insofar as reliability is a condition on epistemic virtue, (...) we have reason to doubt that human beings possess the cognitive materials required for epistemic virtue, and thereby reason to think that virtue epistemology is threatened by skepticism. We conclude that while virtue epistemology has resources for addressing this challenge, exploiting these resources forces tradeoffs between empirical and normative adequacy. (shrink)

In this article, we analyse the novel case of Phoenix, a non-binary adult requesting ongoing puberty suppression to permanently prevent the development of secondary sex characteristics, as a way of affirming their gender identity. We argue that the aim of OPS is consistent with the proper goals of medicine to promote well-being, and therefore could ethically be offered to non-binary adults in principle; there are additional equity-based reasons to offer OPS to non-binary adults as a group; and the ethical defensibility (...) of facilitating individual requests for OPS from non-binary adults also depends on other relevant considerations, including the balance of potential benefits over harms for that specific patient, and whether the patient’s request is substantially autonomous. Although the broadly principlist ethical approach we take can be used to analyse other cases of non-binary adults requesting OPS apart from the case we evaluate, we highlight that the outcome will necessarily depend on the individual’s context and values. However, such clinical provision of OPS should ideally be within the context of a properly designed research study with long-term follow-up and open publication of results. (shrink)