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)

The ethical recruitment of participants with neurological disorders in clinical research requires obtaining initial and ongoing informed consent. The purpose of this study is to characterize barriers faced by research personnel in obtaining informed consent from research participants with neurological disorders and to identify strategies applied by researchers to overcome those barriers. This study was designed as a web-based survey of US researchers with an optional follow-up interview. A subset of participants who completed the survey were selected using a stratified (...) purposeful sampling strategy and invited to participate in an in-depth qualitative interview by phone or video conference. Data were analyzed using a mixed methods approach, including content analysis of survey responses and thematic analysis of interview responses. Over 1 year, 113 survey responses were received from US research personnel directly involved in obtaining informed consent from participants in neurological research. Frequently identified barriers to informed consent included: cognitive and communication impairments (e.g. aphasia), unrealistic expectations of research participants, mistrust of medical research, time constraints, literacy barriers, lack of available social support, and practical or resource-related constraints. Strategies to enhance informed consent included: involving close others to support participant understanding of study-related information, collaborating with more experienced research personnel to facilitate training in obtaining informed consent, encouraging participants to review consent forms in advance of consent discussions, and using printed materials and visual references. Beyond conveying study-related information, researchers included in this study endorsed ethical responsibilities to support deliberation necessary to informed consent in the context of misconceptions about research, unrealistic expectations, limited understanding, mistrust, and/or pressure from close others. Findings highlight the importance of training researchers involved in obtaining informed consent in neurological research to address disease-specific challenges and to support the decision-making processes of potential research participants and their close others. (shrink)

While the phenomenon of ‘moral distress’ has been of interest to the nursing community since Jameton first described it in 1984, moral distress is now understood to effect healthcare professionals...

In recent years, the phenomenon of moral distress has been critically examined—and for a good reason. There have been a number of different definitions suggested, some that claimed to be consistent with the original definition but in fact referred to different epistemological states. In this paper, we re‐examine moral distress by exploring its relationship with moral agency. We critically examine three conceptions of moral agency and argue that two of these conceptions risk placing nurses' values at the center of moral (...) action when it ought to be the patient's values that shape nurses' obligations. We propose that the conception of moral agency advanced by Aimee Milliken which re‐centers patient values, should be more broadly accepted within nursing. We utilize a case example to demonstrate a situation in which the values of a patient's parents (surrogates) justifiably constrained nurses' moral agency, creating moral distress. Through an examination of constraints on nurse agency in this case, we illustrate the problematic nature of ‘narrow' moral distress and the value of re‐considering moral distress. Finally, we provide an action‐oriented proposal identifying mediating steps that we argue have utility for nurses (and other healthcare professionals) to mediate between experiences of narrow moral distress and the exercise of moral agency. (shrink)

While Jameton’s (1984) definition of moral distress has been embraced by researchers and scholars for recognizing the many constraints that nurses experience on their moral agency, it has also been...

Herrera-Ferrá et al.’s (2023) attention to the cultural context of the neurorights movement contributes to the growing conversation on establishing neurorights in response to advancements in neuros...

Supported decision making, as outlined by Peterson et al. highlights real-world challenges in the messy context of clinical care. We agree with Peterson et al. that patients...

Moral distress is a pervasive phenomenon in healthcare for which there is no straightforward “solution.” Rhetoric surrounding moral distress has shifted over time, with some scholars arguing that moral distress needs to be remedied, resolved, and eradicated, while others recognize that moral distress can have some positive value. The authors of this paper recognize that moral distress has value in its function as a warning sign, signaling the presence of an ethical issue related to patient care that requires deeper exploration, (...) rather than evidencing identification of the “right” course of action. Once the experience of moral distress is identified, steps ought to be taken to clarify the moral issue, and, if possible and reasonable, the patient’s values ought to be prioritized. This paper offers concrete actions steps, drawn from theory, which can be used in clinical practice to provide peer support or to facilitate self-reflection for morally distressed individuals. This approach empowers morally distressed individuals to explore ethical issues, identify concrete steps that can be taken, and mitigate feelings of powerlessness that are often associated with moral-constraint distress. The questions guide individuals and peers to reflect first on the micro-space and then more broadly on the institutional culture, facilitating meso- and macro-reflection and action. (shrink)

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

The coronavirus disease (COVID-19) crisis provoked an organizational ethics dilemma: how to develop ethical pandemic policy while upholding our organizational mission to deliver relationship- and patient-centered care. Tasked with producing a recommendation about whether healthcare workers and essential personnel should receive priority access to limited medical resources during the pandemic, the bioethics department and survey and interview methodologists at our institution implemented a deliberative approach that included the perspectives of healthcare professionals and patient stakeholders in the policy development process. Involving (...) the community more, not less, during a crisis required balancing the need to act quickly to garner stakeholder perspectives, uncertainty about the extent and duration of the pandemic, and disagreement among ethicists about the most ethically supportable way to allocate scarce resources. This article explains the process undertaken to garner stakeholder input as it relates to organizational ethics, recounts the stakeholder perspectives shared and how they informed the triage policy developed, and offers suggestions for how other organizations may integrate stakeholder involvement in ethical decision-making as well as directions for future research and public health work. (shrink)

Complex clinical ethics cases require a blend of compassion, sensitivity, and tenacity in order to navigate the hard work required of stakeholders. Each person comes to the table with rich historie...

Russell articulates compelling reasons that bioethicists and health care professionals should take individual responsibility for deconstructing structural injustices in healthcare through in...

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.

In the United States, sex education is more than just an uncomfortable rite of passage, it's an amorphous curriculum that varies widely based on the politics, experience, resources, and biases of the people teaching it. Most often, it's a train wreck, overemphasizing or underemphasizing STIs, teen pregnancy, abstinence, and consent. In Touchy Subject, philosopher Lauren Bialystok and historian Lisa M. F. Andersen make the case for thoughtful sex education, explaining why it's worth fighting for and which kind most deserves (...) our fight, despite all the inconveniences and compromises along the way. They argue that democratic and humanistic aims can be used to provide the tools to reason about the content and form of sex education. In practice, this amounts to a curriculum that meets what are currently considered highly comprehensive standards, incorporates ethics and civics education, and substantially modifies some aspects of teacher training and school design; it also assigns different responsibilities to different actors inside and outside schools, and it responds to the salient features of young people's evolving worlds, including the inequities that put some students at much higher risk of sexual harm than others. Throughout their inquiry, the authors show the reader how sex education has progressed and how the very concept of "progress" remains contestable. (shrink)

The Essay In This Book Deal With Such Topics As Silence As A Constituent Of Language, Justification Of Kant`S Antological Principles, Hegel`S Concept Of Reason, Total Man And The Role Of Revolution, A Meta-Physical Analysis Of Freedom, Dimensions Of Self-Expression, Love As A Form Of Authentic Expression, Radical Education In Institutionalized Surroundings Etc. In Honour Of S.N. Ganguly.

On Advaita philosophy; Sanskrit text with commentary and translation.

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: Biomedical research is influenced by many factors, including the involvement of stakeholder groups invested in research outcomes. Stakeholder involvement in research efforts raises questions of justice as stakeholders’ specific interests and motivations play a role in directing research resources that ultimately produce knowledge, shaping how different conditions (and affected individuals) are understood and treated by society. This issue is highly relevant to child psychiatry research where diagnostic criteria and treatment strategies are often controversial. Biological similarities and stakeholder differences between (...) attention deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) provide an opportunity to explore this issue by comparing research foci and stakeholder involvement in these conditions. Methods: A subset of ADHD and ASD research articles published between 1970 and 2010 were randomly selected from the PubMed database and coded for research focus, funding source(s), and author-reported conflicts of interest (COIs). Chi-squared analyses were performed to identify differences between and within ADHD and ASD research across time. Results: The proportion of ADHD research dedicated to basic, description, and treatment research was roughly similar and remained stable over time, while ASD research showed a significant increase in basic research over the past decade. Government was the primary research funder for both conditions, but for-profit funders were a notable presence in ADHD research, while joint funding efforts between nonprofit and government funders were a notable presence in ASD research. Lastly, COIs were noted more frequently in ADHD than in ASD research. Conclusions: Our study shows significant differences in research foci and funding sources between the conditions, and identifies the specific involvement of for-profit and nonprofit groups in ADHD and ASD, respectively. Our findings highlight the relationship between stakeholders outside the research community and research trajectories and suggest that examinations of these relationships must be included in broader considerations of biomedical research ethics. (shrink)

To call attention to and motivate action on ethical issues in business or society, messengers often criticize groups for wrongdoing and ask these groups to change their behavior. When criticizing target groups, messengers frequently identify and express concern about harm caused to a victim group, and in the process address a target group by criticizing them for causing this harm and imploring them to change. However, we find that when messengers criticize a target group for causing harm to a victim (...) group in this way—expressing _singular concern_ for the victim group—members of the target group infer, often incorrectly, that the messenger views the target group as less moral and unworthy of concern. This inferred lack of moral concern reduces criticism acceptance and prompts backlash from the target group. To address this problem, we introduce _dual concern_ messaging—messages that simultaneously communicate that a target group causes harm to a victim group and express concern for the target group. A series of several experiments demonstrate that dual concern messages reduce inferences that a critical messenger lacks moral concern for the criticized target group, increase the persuasiveness of the criticism among members of the target group, and reduce backlash from consumers against a corporate messenger. When pursuing justice for victims of a target group, dual concern messages that communicate concern for the victim group _as well as_ the target group are more effective in fostering openness toward criticism, rather than defensiveness, in a target group, thus setting the stage for change. (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.

_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.

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)

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)

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)

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)

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)

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)

This book draws on the hermeneutics of Hans-Georg Gadamer to inform a feminist perspective of social identities. Lauren Swayne Barthold moves beyond answers that either defend the objective nature of identities or dismiss their significance altogether. Building on the work of both hermeneutic and non-hermeneutic feminist theorists of identity, she asserts the relevance of concepts like horizon, coherence, dialogue, play, application, and festival for developing a theory of identity. This volume argues that as intersubjective interpretations, social identities are vital (...) ways of fostering meaning and connection with others. Barthold also demonstrates how a hermeneutic approach to social identities can provide critiques of and resistance to identity-based oppression. (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)

Causal selection has to do with the distinction we make between background conditions and “the” true cause or causes of some outcome of interest. A longstanding consensus in philosophy views causal selection as lacking any objective rationale and as guided, instead, by arbitrary, pragmatic, and non-scientific considerations. I argue against this position in the context of causal selection for disease traits. In this domain, causes are selected on the basis of the type of causal control they exhibit over a disease (...) of interest. My analysis clarifies the principled rationale that guides this selection and how it involves both pragmatic and objective considerations, which have been overlooked in the extant literature. (shrink)