The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing p...

Brain-Computer Interface is a set of technologies that are of increasing interest to researchers. BCI has been proposed as assistive technology for individuals who are non-communicative or paralyzed, such as those with amyotrophic lateral sclerosis or spinal cord injury. The technology has also been suggested for enhancement and entertainment uses, and there are companies currently marketing BCI devices for those purposes as well as health-related purposes. The unprecedented direct connection created by BCI between human brains and computer hardware raises various (...) ethical, social, and legal challenges that merit further examination and discussion. To identify and characterize the key issues associated with BCI use, we performed a scoping review of biomedical ethics literature, analyzing the ethics concerns cited across multiple disciplines, including philosophy and medicine. Based on this investigation, we report that BCI research and its potential translation to therapeutic intervention generate significant ethical, legal, and social concerns, notably with regards to personhood, stigma, autonomy, privacy, research ethics, safety, responsibility, and justice. Our review of the literature determined, furthermore, that while these issues have been enumerated extensively, few concrete recommendations have been expressed. We conclude that future research should focus on remedying a lack of practical solutions to the ethical challenges of BCI, alongside the collection of empirical data on the perspectives of the public, BCI users, and BCI researchers. (shrink)

From a twenty-first century partnership between bioethics and neuroscience, the modern field of neuroethics is emerging, and technologies enabling functional neuroimaging with unprecedented sensitivity have brought new ethical, social and legal issues to the forefront. Some issues, akin to those surrounding modern genetics, raise critical questions regarding prediction of disease, privacy and identity. However, with new and still-evolving insights into our neurobiology and previously unquantifiable features of profoundly personal behaviors such as social attitude, value and moral agency, the difficulty of (...) carefully and properly interpreting the relationship between brain findings and our own self-concept is unprecedented. Therefore, while the ethics of genetics provides a legitimate starting point - even a backbone - for tackling ethical issues in neuroimaging, they do not suffice. Drawing on recent neuroimaging findings and their plausible real-world applications, we argue that interpretation of neuroimaging data is a key epistemological and ethical challenge. This challenge is two-fold. First, at the scientific level, the sheer complexity of neuroscience research poses challenges for integration of knowledge and meaningful interpretation of data. Second, at the social and cultural level, we find that interpretations of imaging studies are bound by cultural and anthropological frameworks. In particular, the introduction of concepts of self and personhood in neuroimaging illustrates the interaction of interpretation levels and is a major reason why ethical reflection on genetics will only partially help settle neuroethical issues. Indeed, ethical interpretation of such findings will necessitate not only traditional bioethical input but also a wider perspective on the construction of scientific knowledge. (shrink)

Moral enhancement refers to the possibility of making individuals and societies better from a moral standpoint. A fierce debate has emerged about the ethical aspects of moral enhancement, notably because steering moral enhancement in a particular direction involves choosing amongst a wide array of competing options, and these options entail deciding which moral theory or attributes of the moral agent would benefit from enhancement. Furthermore, the ability and effectiveness of different neurotechnologies to enhance morality have not been carefully examined. In (...) this paper, we assess the practical feasibility of moral enhancement neurotechnologies. We reviewed the literature on neuroscience and cognitive science models of moral judgment and analyzed their implications for the specific target of intervention in moral enhancement. We also reviewed and compared evidence on available neurotechnologies that could serve as tools of moral enhancement. We conclude that the predictions of rationalist, emotivist, and dual process models are at odds with evidence, while different intuitionist models of moral judgment are more likely to be aligned with it. Furthermore, the project of moral enhancement is not feasible in the near future as it rests on the use of neurointerventions, which have no moral enhancement effects or, worse, negative effects. (shrink)

Gilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in the context (...) of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)

In the debate on the ethics of the non-medical use of pharmaceuticals for cognitive performance enhancement in healthy individuals there is a clear division between those who view “cognitive enhancement” as ethically unproblematic and those who see such practices as fraught with ethical problems. Yet another, more subtle issue, relates to the relevance and quality of the contribution of scholarly bioethics to this debate. More specifically, how have various forms of speculation, anticipatory ethics, and methods to predict scientific trends and (...) societal responses augmented or diminished this contribution? In this paper, we use the discussion of the ethics of cognitive enhancement to explore the positive and negative contribution of speculation in bioethics scholarship. First, we review and discuss how speculation has relied on different sets of assumptions regarding the non-medical use of stimulants, namely: terminology and framing; scientific aspects such as efficacy and safety; estimates of prevalence and consequent normalization; and the need for normative reflection and regulatory guidelines. Second, three methodological guideposts are proposed to alleviate some of the pitfalls of speculation: acknowledge assumptions more explicitly and identify the value attributed to assumptions; validate assumptions with interdisciplinary literature; and adopt a broad perspective to promote more comprehensive reflection. We conclude that, through the examination of the controversy about cognitive enhancement, we can employ these methodological guideposts to enhance the value of contributions from bioethics and minimize potential epistemic and practical pitfalls in this case and perhaps in other areas of bioethical debate. (shrink)

Gilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in the context (...) of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)

Gilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in the context (...) of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)

The prospects of enhancing cognitive or motor functions using neuroscience in otherwise healthy individuals has attracted considerable attention and interest in neuroethics (Farah et al., Nature Reviews Neuroscience 5:421–425, 2004; Glannon Journal of Medical Ethics 32:74–78, 2006). The use of stimulants is one of the areas which has propelled the discussion on the potential for neuroscience to yield cognition-enhancing products. However, we have found in our review of the literature that the paradigms used to discuss the non-medical use of stimulant (...) drugs prescribed for attention deficit/hyperactivity disorder (ADHD) vary considerably. In this brief communication, we identify three common paradigms—prescription drug abuse, cognitive enhancement, and lifestyle use of pharmaceuticals—and briefly highlight how divergences between paradigms create important “ethics blind spots”. (shrink)

Neuroethics is an interdisciplinary field that arose in response to novel ethical challenges posed by advances in neuroscience. Historically, neuroethics has provided an opportunity to synergize different disciplines, notably proposing a two-way dialogue between an ‘ethics of neuroscience’ and a ‘neuroscience of ethics’. However, questions surface as to whether a ‘neuroscience of ethics’ is a useful and unified branch of research and whether it can actually inform or lead to theoretical insights and transferable practical knowledge to help resolve ethical questions. (...) In this article, we examine why the neuroscience of ethics is a promising area of research and summarize what we have learned so far regarding its most promising goals and contributions. We then review some of the key methodological challenges which may have hindered the use of results generated thus far by the neuroscience of ethics. Strategies are suggested to address these challenges and improve the quality of research and increase neuroscience's usefulness for applied ethics and society at large. Finally, we reflect on potential outcomes of a neuroscience of ethics and discuss the different strategies that could be used to support knowledge transfer to help different stakeholders integrate knowledge from the neuroscience of ethics. (shrink)

The application of neurostimulation techniques such as deep brain stimulation —often called a brain pacemaker for neurological conditions like Parkinson's disease —has generated “currents of hope.” Building on this hope, there is significant interest in applying neurostimulation to psychiatric disorders such as major depression and obsessive-compulsive disorder. These emerging neurosurgical practices raise a number of important ethical and social questions in matters of resource allocation, informed consent for vulnerable populations, and commercialization of research.

This article proposes a novel integrative approach to moral judgment and a related model that could explain how unconscious heuristic processes are transformed into consciously accessible moral intuitions. Different hypothetical cases have been tested empirically to evoke moral intuitions that support principles from competing moral theories. We define and analyze the types of intuitions that moral theories and studies capture: those focusing on agents (A), deeds (D), and consequences (C). The integrative ADC approach uses the heuristic principle of “attribute substitution” (...) to explain how people make intuitive judgments. The target attributes of moral judgments are moral blameworthiness and praiseworthiness, which are substituted with more accessible and computable information about an agent's virtues and vices, right/wrong deeds, and good/bad consequences. The processes computing this information are unconscious and inaccessible, and therefore explaining how they provide input for moral intuitions is a key problem. We analyze social heuristics identified in the literature and offer an outline for a new model of moral judgment. Simple social heuristics triggered by morally salient cues rely on three distinct processes (role-model entity, action analysis, and consequence tallying—REACT) in order to compute the moral valence of specific intuitive responses (A, D, and C). These are then rapidly combined to form an intuitive judgment that could guide quick decision making. The ADC approach and REACT model can clarify a wide set of data from empirical moral psychology and could inform future studies on moral judgment, as well as case assessments and discussions about issues causing “deadlocked” moral intuitions. (shrink)

Common understandings of neuroethics, i.e., of its distinctive nature, are premised on two distinct sets of claims: (1) neuroscience can change views about the nature of ethics itself and neuroethics is dedicated to reaping such an understanding of ethics; (2) neuroscience poses challenges distinct from other areas of medicine and science and neuroethics tackles those issues. Critiques have rightfully challenged both claims, stressing how the first may lead to problematic forms of reductionism while the second relies on debatable assumptions about (...) the nature of bioethics specialization and development. Informed by philosophical pragmatism and our experience in neuroethics, we argue that these claims are ill-founded and should give way to pragmatist reconstructions. Namely, neuroscience, much like other areas of empirical research on morality, can provide useful information about the nature of morally problematic situations but it does not need to promise radical and sweeping changes to ethics based on neuroscientism. Furthermore, the rationale for the development of neuroethics as a specialized field need not to be premised on the distinctive nature of the issues it tackles or of neurotechnologies. Rather, it can espouse an understanding of neuroethics as both a scholarly and a practical endeavor dedicated to resolving a series of problematic situations raised by neurological and psychiatric conditions. (shrink)

Research conducted on Brain-Computer Interfaces has grown considerably during the last decades. With the help of BCIs, users can gain a wide range of functions. Our aim in this paper is to analyze the impact of BCIs on autonomy. To this end, we introduce three abilities that most accounts of autonomy take to be essential: the ability to use information and knowledge to produce reasons; the ability to ensure that intended actions are effectively realized ; and the ability to enact (...) intentions within concrete relationships and contexts. We then consider the impact of BCI technology on each of these abilities. Although on first glance, BCIs solely enhance self-determination because they restore or improve abilities, we will show that there are other positive, but also negative impacts on user autonomy, which require further philosophical and ethical discussions. (shrink)

Abstract:Vulnerability is an important criterion to assess the ethical justification of the inclusion of participants in research trials. Currently, vulnerability is often understood as an attribute inherent to a participant by nature of a diagnosed condition. Accordingly, a common ethical concern relates to the participant’s decisionmaking capacity and ability to provide free and informed consent. We propose an expanded view of vulnerability that moves beyond a focus on consent and the intrinsic attributes of participants. We offer specific suggestions for how (...) relational aspects and the dynamic features of vulnerability could be more fully captured in current discussions and research practices. (shrink)

There might be value in examining the phenomenon of free will, without attempting to solve the debate surrounding its existence. Studies have suggested that diminishing belief in free will increases cheating behavior and that basic physiological states such as appetite diminish free will. These findings, if robust, could have important philosophical and ethical implications. Accordingly, we aimed to critically review methodologies and results in the body of literature that speaks to the two following questions: whether certain factors can change belief (...) in free will or not and whether changes in belief in free will impact different attitudinal or behavioral factors or not. Searching the PubMed and PsycInfo databases with different keyword strategies supplemented with reference section searches, we found 52 relevant papers for review. For each distinct study, we extracted information regarding: sample characteristics and related analyses, procedures and methodology, factors investigated, results, and effect sizes. Overall, we found that the samples were heavily constituted of women, of students and younger participants, with little information about representation of ethnic minorities. Procedures and methodology relied strongly on the use of experimental manipulations and a wide array of scales, including scales created by researchers. Several studies suggest the static and consequential properties of belief in free will. However, these conclusions are restrained by numerous limitations of the supporting body of evidence and the absence of replication studies. (shrink)

Ethics designates a structured process by which important human values and meanings of life are understood and tackled. Therein, the ability to discuss openly and reflect on (aka deliberation) understandings of moral problems, on solutions to these problems, and to explore what a meaningful resolution could amount to is highly valued. However, the indicators of what constitutes a high-quality ethical deliberation remain vague and unclear. This article proposes and develops a pragmatist approach to evaluate the quality of deliberation. Deliberation features (...) three important moments: (1) broadening and deepening the understanding of the situation, (2) envisioning action scenarios, (3) coming to a judgment based on the comparative evaluation of scenarios. In this paper, we propose seven criteria to evaluate ethical deliberations: (1) collaborative diversity, (2) experiential literacy, (3) organization of experiences, (4) reflective capacity to instrumentalize the experiences of others, (5) interactional creativity, (6) openness of agents, (7) quality of the reformulation of scenarios. These criteria are explained and applied to the three moments of deliberation. Based on these criteria, three kinds of outcomes for deliberations are identified and discussed: good ethical deliberations, partial ethical deliberations, bad ethical deliberations. Our proposal will guide researchers and practitioners interested in the evaluation of the quality of ethical deliberations. It provides a reference tool that allows them to identify the possible limitations of a deliberation and to implement actions aimed at correcting these limitations in order to achieve the desired qualitative objectives. (shrink)

BackgroundFunctional neurodiagnostics could allow researchers and clinicians to distinguish more accurately between the unresponsive wakefulness syndrome and the minimally conscious state. It remains unclear how it informs surrogate decision-making.ObjectiveTo explore how the next of kin of patients with disorders of consciousness interpret the results of a functional neurodiagnostics measure and how/why their interpretations influence their attitudes towards medical decisions.Methods and SampleWe conducted problem-centered interviews with seven next of kin of patients with DOC who had undergone a functional HD-EEG examination at (...) a neurological rehabilitation center in Germany. The examination included an auditory oddball paradigm and a motor imagery task to detect hidden awareness. We analyzed the interview transcripts using structuring qualitative content analysis.ResultsRegardless of the diagnostic results, all participants were optimistic of the patients’ meaningful recovery. We hypothesize, that participants deal with the results of examinations according to their belief system. Thus, an unfavorable evaluation of the patient’s state had the potential to destabilize the participant’s belief system. To re-stabilize or to prevent the destabilization of their belief system, participants used different strategies. Participants accepted a “positive” HD-EEG result since it stabilized their belief system.ConclusionWe hypothesize, that a group of next of kin of patients with DOC deals with functional neurodiagnostics results on the basis of the result’s value and their high hope that the patient will recover meaningfully. A psychological mechanism seems to moderate the impact of functional neurodiagnostics on surrogate treatment decisions. (shrink)

Free will has been the object of debate in the context of addiction given that addiction could compromise an individual’s ability to choose freely between alternative courses of action. Proponents of the brain-disease model of addiction have argued that a neuroscience perspective on addiction reduces the attribution of free will because it relocates the cause of the disorder to the brain rather than to the person, thereby diminishing the blame attributed to the person with an addiction. Others have worried that (...) such displacement of free will attribution would make the person with a drug addiction less responsible. Using the paradigmatic literature on the seductive allure of neuroscience explanations, we tested whether neuroscience information diminishes attributions of free will in the context of addiction and whether respondent characteristics influence these attributions and modulate the effect of neuroscience information. We performed a large-scale, web-based experiment with 2,378 German participants to explore how attributions of free will in the context of addiction to either alcohol or cocaine are affected by: (1) a text with a neurobiological explanation of addiction, (2) a neuroimage showing effects of addiction on the brain, and (3) a combination of a text and a neuroimage, in comparison to a control group that received no information. Belief in free will was measured using the FAD-Plus scale and was, subsequent to factor analysis, separated into two factors: responsibility and volition. The investigated respondent characteristics included gender, age, education, self-reported knowledge of neuroscience, substance-use disorder (SUD), and having a friend with SUD. We found that attributions of volition (in the cocaine-subsample) were reduced in the text and neuroimage-treatment compared to the control group. However, respondent characteristics such as education and self-reported knowledge of neuroscience were associated with lower attributions of responsibility for both substances, and education was associated with lower attribution of volition for the alcohol sub-sample. Interaction analyses showed that knowledge of neuroscience was found to generally decrease attribution of responsibility. Further research on attribution of free will should consider the effects of context and respondent characteristics, which appeared surprisingly larger than those induced by experimental treatments. (shrink)

Abstract:Vulnerability is an important criterion to assess the ethical justification of the inclusion of participants in research trials. Currently, vulnerability is often understood as an attribute inherent to a participant by nature of a diagnosed condition. Accordingly, a common ethical concern relates to the participant’s decisionmaking capacity and ability to provide free and informed consent. We propose an expanded view of vulnerability that moves beyond a focus on consent and the intrinsic attributes of participants. We offer specific suggestions for how (...) relational aspects and the dynamic features of vulnerability could be more fully captured in current discussions and research practices. (shrink)

The concept of free will has been heavily debated in philosophy and the social sciences. Its alleged importance lies in its association with phenomena fundamental to our understandings of self, such as autonomy, freedom, self-control, agency, and moral responsibility. Consequently, when neuroscience research is interpreted as challenging or even invalidating this concept, a number of heated social and ethical debates surface. We undertook a content analysis of media coverage of Libet’s et al.’s :623–642, 1983) landmark study, which is frequently interpreted (...) as posing a serious challenge to the existence of free will. Media descriptions of Libet et al.’s experiment provided limited details about the original study. Overall, many media articles reported that Libet et al.’s experiments undermined the existence of free will, despite acknowledging that several methodological limitations had been identified in the literature. A propensity to attribute greater credibility than warranted to neurobiological explanations could be at stake. (shrink)

Living labs are interdisciplinary and participatory initiatives aimed at bringing research closer to practice by involving stakeholders in all stages of research. Living labs align with the principles of participatory research methods as well as recent insights about how participatory ways of generating knowledge help to change practices in concrete settings with respect to specific problems. The participatory, open, and discussion‐oriented nature of living labs could be ideally suited to accompany ethical reflection and changes ensuing from reflection. To our knowledge, (...) living labs have not been explicitly trialed and reported in ethics literature. In this discussion paper, we report and discuss four initial issues that marked the process of setting up a living lab in ethics: (1) determining the goals and expected outcomes of an ethics living lab; (2) establishing operational procedures; (3) selecting communities and defining pilot projects; and (4) adopting a lens to tackle emerging questions and challenges. We explain these four issues and present the paths taken based on the novel and specific orientation, that is, living ethics, at the basis of this project. In alignment with living ethics and É‐LABO, we approach challenges as learning opportunities to ask not only “how” questions but also “why” questions. We hope that this discussion paper informed by our experience helps to clarify the theoretical, methodological, and practical approaches necessary to successfully adopt and employ living labs in ethics. (shrink)

ABSTRACT There is a growing interest in various forms of naturalism in bioethics, but there is a clear need for further clarification. In an effort to address this situation, I present three epistemological stances: anti‐naturalism, strong naturalism, and moderate pragmatic naturalism. I argue that the dominant paradigm within philosophical ethics has been a form of anti‐naturalism mainly supported by a strong ‘is’ and ‘ought’ distinction. This fundamental epistemological commitment has contributed to the estrangement of academic philosophical ethics from major social (...) problems and explains partially why, in the early 1980s, ‘medicine saved the life of ethics’. Rejection of anti‐naturalism, however, is often associated with strong forms of naturalism that commit the naturalistic fallacy and threaten to reduce the normative dimensions of ethics to biological imperatives. This move is rightly dismissed as a pitfall since ethics is, in part, a struggle against the course of nature. Rejection of naturalism has drawbacks, however, such as detering bioethicists from acknowledging the implicit naturalistic epistemological commitments of bioethics. I argue that a moderate pragmatic form of naturalism represents an epistemological position that best embraces the tension of anti‐naturalism and strong naturalism: bioethics is neither disconnected from empirical knowledge nor subjugated to it. The discussion is based upon historical writings in philosophy and bioethics. (shrink)

Since the 1960s, scientists, engineers, and healthcare professionals have developed brain–computer interface (BCI) technologies, connecting the user’s brain activity to communication or motor devices. This new technology has also captured the imagination of publics, industry, and ethicists. Academic ethics has highlighted the ethical challenges of BCIs, although these conclusions often rely on speculative or conceptual methods rather than empirical evidence or public engagement. From a social science or empirical ethics perspective, this tendency could be considered problematic and even technocratic because (...) of its disconnect from publics. In response, our trinational survey (Germany, Canada, and Spain) reports public attitudes toward BCIs (N = 1,403) on ethical issues that were carefully derived from academic ethics literature. The results show moderately high levels of concern toward agent-related issues (e.g., changing the user’s self) and consequence-related issues (e.g., new forms of hacking). Both facets of concern were higher among respondents who reported as female or as religious, while education, age, own and peer disability, and country of residence were associated with either agent-related or consequence-related concerns. These findings provide a first look at BCI attitudes across three national contexts, suggesting that the language and content of academic BCI ethics may resonate with some publics and their values. (shrink)

There is substantial evidence that methylphenidate (MPH; Ritalin), is being used by healthy university students for non-medical motives such as the improvement of concentration, alertness, and academic performance. The scope and potential consequences of the non-medical use of MPH upon healthcare and society bring about many points of view.

The concept of vulnerability is widely used in research ethics to signal attention to participants who require special protections in research. However, this concept is vague and under‐theorized. There is also growing concern that the dominant categorical approach to vulnerability (as exemplified by research ethics regulations and guidelines delineating vulnerable groups) is ethically problematic because of its assumptions about groups of people and is, in fact, not very guiding. An agreed‐upon strategy is to move from categorical towards analytical approaches (focused (...) on analyzing types and sources of vulnerability) to vulnerability. Beyond this agreement, however, scholars have been advancing competing accounts of vulnerability without consensus about its appropriate operationalization in research ethics. Based on previous debates, we propose that a comprehensive account of vulnerability for research ethics must include four components: definition, normative justifications, application, and implications. Concluding that no existing accounts integrate these components in a functional (i.e., practically applicable) manner, we propose an integrative and functional account of vulnerability inspired by pragmatist theory and enriched by bioethics literature. Using an example of research on deep brain stimulation for treatment‐resistant depression, we illustrate how the integrative‐functional account can guide the analysis of vulnerability in research within a pragmatist, evidence‐based approach to research ethics. While ultimately there are concerns to be addressed in existing research ethics guidelines on vulnerability, the integrative‐functional account can serve as an analytic tool to help researchers, research ethics boards, and other relevant actors fill in the gaps in the current landscape of research ethics governance. (shrink)

Ethics is often viewed as the elaboration of and compliance to norms, a.k.a. as the deductive model of ethics. This is well illustrated by the mainstream development of codes of ethics and ethics committees in the healthcare setting and beyond. Drawing upon a recent synthesis of pragmatist insights on the nature of ethics as well as contemporary scholarship on human flourishing, I explain how ethics is not primarily about the compliance of experience and agency to preset norms but about liberation (...) and empowerment within a process of existential meaning-making. This point is made in the context of two important tasks of ethics: (1) understanding moral problems and (2) providing guidance for solving such problems. (shrink)

International media have reported cases of pregnant women who have had their children apprehended by social services, or who were incarcerated or forced into treatment programs based on a history of substance use or lack of adherence to addiction treatment programs. Public discourse on the biology of addiction has been criticized for generating stigma and a diminished perception of self-control in individuals with an addiction, potentially contributing to coercive approaches and criminalization of women who misuse substances during pregnancy. We explored (...) whether this is the case based on literature from social psychology, ethics, addiction research, science communication, and philosophy. The literature shows that the relationship between public discourse on biological aspects of addiction and issues such as stigma and perceptions of diminished self-control are unclear, largely due to the complexity of these phenomena. However, concerns about the biological approach are nevertheless legitimate given the broader social and policy context of women’s health. (shrink)

In this article we report relevant data that shed light on the topic of hope and patients’ expectations in the use of DBS, for standard, approved, and established indications, based on a broader qualitative study on the ethical and social challenges that healthcare providers face in the field of DBS.

We investigated the acceptability and frequency of the use of cognitive enhancement (CE) drugs and three different types of academic misconduct (plagiarism, cheating in exams, and falsifying/fabricating data). Data from a web-based survey among German university students were used. Moral acceptability was relatively low for CE drug use and moderate for academic misconduct, while the correlation of their respective acceptability was moderately weak. Prevalence of CE drug use was lower than for academic misconduct and (very) lightly correlated with the prevalence (...) of plagiarism and fabrication/falsification. Acceptability of the investigated behaviors was associated with higher prevalence rates of each behavior. (shrink)

Rare diseases, defined as having a prevalence inferior to 1/2000, are poorly understood scientifically and medically. Appropriate diagnoses and treatments are scarce, adding to the burden of living with chronic medical conditions. The moral significance of rare disease experiences is often overlooked in qualitative studies conducted with adults living with rare diseases. The concept of morally problematic situations arising from pragmatist ethics shows promise in understanding these experiences. The objectives of this study were to (1) acquire an in-depth understanding of (...) morally problematic situations experienced by adults living with rare diseases in the province of Québec and (2) to develop an integrative model of the concept of morally problematic situations. To this end, an online survey targeting this population was developed through a participatory action research project. Respondents provided 90 long testimonies on the most important morally problematic situations they faced, often in healthcare settings. An integrative model was developed based on various qualitative analyses of these testimonies and relevant literature. The integrative model showcases that morally problematic situations have causes (i.e., contextual and relational factors, personal factors, jeopardized valuations), have affective repercussions (i.e., emotions and feelings, internal tensions), prompt action (i.e., through empowerment strategies leading to the evolution of situations), and elicit outcomes (i.e., factual consequences, residual emotions and feelings, positive or negative resolutions). In sum, this study advances understanding of the moral experiences of adults living with rare diseases while proposing a comprehensive conceptual tool to guide future empirical bioethics research on moral experiences. (shrink)

The legalization of cannabis in Canada instantiates principles of harm-reduction and safe supply. However, in-depth understanding of values at stake and attitudes toward legalization were not part of extensive democratic deliberation. Through a qualitative exploratory study, we undertook 48 semi-structured interviews with three Canadian stakeholder groups to explore opinions and values with respect to the legalization of cannabis: (1) members of the general public, (2) people with lived experience of addiction and (3) clinicians with experience treating patients with addiction. Across (...) all groups, participants tended to be in favor of legalization, but particular opinions rested on their viewpoint as stakeholders. Clinicians considered the way legalization would affect an individual’s health and its potential for increasing rates of addiction on a larger scale. People with lived experience of addiction cited personal autonomy more than other groups and stressed the need to have access to quality information to make truly informed decisions. Alternatively, members of the public considered legalization positive or negative in light of whether one’s addiction affected others. We elaborate on and discuss how scientific evidence about drug use impact values relates and how can different arguments play in democratic debates about legalization. (shrink)

Bioethics has made a compelling case for the role of experience and empirical research in ethics. This may explain why the movement for empirical ethics has such a firm grounding in bioethics. However, the theoretical framework according to which empirical research contributes to ethics—and the specific role it can or should play—remains manifold and unclear. In this paper, we build from pragmatic theory stressing the importance of experience and outcomes in establishing the meaning of ethics concepts. We then propose three (...) methodological steps according to which the meaning of ethics concepts can be refined based on experience and empirical research: function identification, function enrichment, and function testing. These steps are explained and situated within the broader commitment of pragmatic ethics to a perspective of moral growth and human flourishing. We hope that this proposal will give specific direction to the bridging of theoretical and empirical research in ethics and thus support stronger actualization of ethics concepts. (shrink)

The degree of autonomy present in the choices made by individuals with an addiction, notably in the context of research, is unclear and debated. Some have argued that addiction, as it is commonly understood, prevents people from having sufficient decision-making capacity or self-control to engage in choices involving substances to which they have an addiction. Others have criticized this position for being too radical and have counter-argued in favour of the full autonomy of people with an addiction. Aligning ourselves with (...) middle-ground positions between these two extremes, we flesh out an account of voluntary action that makes room for finer-grained analyses than the proposed all-or-nothing stances, which rely on a rather static metaphysical understanding of the nature of the voluntariness of action. In contrast, a dynamic concept of voluntary action better accounts for varying levels of voluntariness of the person with an addiction which takes into consideration internal and external determinants of choice. Accordingly, like other components of autonomous choices such as level of information, voluntariness can fluctuate. Therefore, there are important implications for research and clinical ethics in matters of consent, recruitment, and therapeutic approaches. Overall, our proposal is inspired by a pragmatist understanding of voluntary action, notably with respect to how voluntariness is both informed by actions and experiences that shape one's view of the world. (shrink)

Stimulant drugs, transcranial magnetic stimulation, brain-computer interfaces, and even genetic modifications are all discussed as forms of potential cognitive enhancement. Cognitive enhancement can be conceived as a benefit-seeking strategy used by healthy individuals to enhance cognitive abilities such as learning, memory, attention, or vigilance. This phenomenon is hotly debated in the public, professional, and scientific literature. Many of the statements favoring cognitive enhancement (e.g., related to greater productivity and autonomy) or opposing it (e.g., related to health-risks and social expectations) rely (...) on claims about human welfare and human flourishing. But with real-world evidence from the social and psychological sciences often missing to support (or invalidate) these claims, the debate about cognitive enhancement is stalled. In this paper, we describe a set of crucial debated questions about psychological and social aspects of cognitive enhancement (e.g., intrinsic motivation, well-being) and explain why they are of fundamental importance to address in the cognitive enhancement debate and in future research. We propose studies targeting social and psychological outcomes associated with cognitive enhancers (e.g., stigmatization, burnout, mental well-being, work motivation). We also voice a call for scientific evidence, inclusive of but not limited to biological health outcomes, to thoroughly assess the impact of enhancement. This evidence is needed to engage in empirically informed policymaking, as well as to promote the mental and physical health of users and non-users of enhancement. (shrink)

Dissecting Bioethics, edited by Tuija Takala and Matti Hayry, welcomes contributions on the conceptual and theoretical dimensions of bioethics. The department is dedicated to the idea that words defined by bioethicists and others should not be allowed to imprison people’s actual concerns, emotions, and thoughts. Papers that expose the many meanings of a concept, describe the different readings of a moral doctrine, or provide an alternative angle to seemingly self-evident issues are particularly appreciated. To submit a paper or to discuss (...) a suitable topic, contact Tuija Takala [email protected].:This article examines some of the assumptions and implications associated with the Belmont era context in which the concept of therapeutic misconception was forged. We argue that the justification of therapeutic misconception should be reconsidered based on less paternalistic and more participatory models of research. Finally, we identify conceptual and practical approaches that might better reflect contemporary research practice. (shrink)

In the article “Nudging and Informed Consent”, Cohen argues that the use of “nudging” by physicians in the clinical encounter may be ethically warranted because it results in an informed consent where obligations for beneficence and respect for autonomy are both met. However, the author's overenthusiastic support for nudging and his quick dismissal of shared decision-making leads him to assume that “soft” manipulation is un-problematic and that “wisdom” on the side of medical professionals will suffice to guard against abuse. Opposing (...) this view, we propose that: 1) patient preferences and values should not be boiled down to rational or irrational decisions based on cognitive reasoning alone, 2) potential threats to the physician-patient must be mitigated and could be minimized by employing alternative strategies that acknowledge the impact of cognitive heuristics in shaping decision-making but maintain transparency and trust, and 3) patient preferences and values can be legitimately influenced only under specific circumstances. The latter include: (1) exhaustion of other means; (2) evidence that nudging is effective in a specific context; (3) evidence of clear and active public misinformation (e.g., industry promoting smoking); (4) explicit pubic dialogue between various stakeholders including medical professional societies about nudging; (5) upholding shared decision-making as a preferred approach; and (6) a rich understanding of clinical reality beyond the simple dichotomy of beneficence-autonomy. (shrink)

Stigma can influence the prevention and identification of fetal alcohol spectrum disorder, a leading cause of developmental delay in North America. Understanding the effects of public health practices and policies on stigma is imperative. We reviewed social science and biomedical literatures to understand the nature of stigma in FASD and its relevance from an ethics standpoint in matters of health practices and policies. We propose a descriptive model of stigma in FASD and note current knowledge gaps; discuss the ethical implications (...) of stigma based on two distinct criteria ; and describe two cases and the concerns associated with inadvertent stigmatization by public health initiatives for FASD. We recommend further empirical and ethical analyses to examine whether public health policies and practices inadvertently stigmatize and impact the success of public health initiatives and programs for FASD. (shrink)

“Everyday ethics” is a term that has been used in the clinical and ethics literature for decades to designate normatively important and pervasive issues in healthcare. In spite of its importance, the term has not been reviewed and analyzed carefully. We undertook a literature review to understand how the term has been employed and defined, finding that it is often contrasted to “dramatic ethics.” We identified the core attributes most commonly associated with everyday ethics. We then propose an integrative model (...) of everyday ethics that builds on the contribution of different ethical theories. This model proposes that the function of everyday ethics is to serve as an integrative concept that (1) helps to detect current blind spots in bioethics (that is, shifts the focus from dramatic ethics) and (2) mobilizes moral agents to address these shortcomings of ethical insight. This novel integrative model has theoretical, methodological, practical, and pedagogical implications, which we explore. Because of the pivotal role that moral experience plays in this integrative model, the model could help to bridge empirical ethics research with more conceptual and normative work. (shrink)

In the care of patients with disorders of consciousness (DOC), some ethical difficulties stem from the challenges of accurate diagnosis and the uncertainty of prognosis. Current neuroimaging research on these disorders could eventually improve the accuracy of diagnoses and prognoses and therefore change the context of end-of-life decision making. However, the perspective of healthcare professionals on these disorders remains poorly understood and may constitute an obstacle to the integration of research. We conducted a qualitative study involving healthcare professionals from an (...) acute care university medical center. A short questionnaire captured demographic data as well as the experience of participants with DOC patients. A semi-structured interview was used to explore attitudes toward ethical issues identified in a previous literature review. Qualitative content analysis of interviews was conducted with the NVivo software. Accurate diagnosis among DOC is often regarded as a challenge, but this was generally not the case for our participants because most reported high confidence in DOC diagnoses. However, participants reported struggling with prognosis, especially because of its essential role for end-of-life decision making and communication with families. Variability of opinion between healthcare professionals was reported and identified by some as a minor issue while others stressed how families struggle with different medical opinions. End-of-life decision making encompassed a large proportion of ethical challenges in these patients, and the removal of artificial nutrition and hydration created significant discomfort in a minority of participants. The concept of futility was subject to wide-ranging understandings with both favorable and unfavorable opinions. Our data suggest that to ensure the incorporation of new evidence-based advances, attention should be directed to the real-world practices and challenges of accurate diagnosis and prognosis. Given pervasive challenges in end-of-life care, we recommend improved training of healthcare professionals in the care of patients with DOC, particularly in end-of life care, understanding the context of decision making, and determining how to optimally integrate new neuroscience research on the care of patients with DOC. (shrink)

For each one of the approximately 800,000 people who die from suicide every year, an additional twenty people attempt suicide. Many of these attempts result in hospitalization or in contact with other healthcare services. However, many personal, educational, and institutional barriers make it difficult for healthcare professionals to care for suicidal individuals. We reviewed literature that discusses suicidal patients in healthcare settings in order to highlight common ethical issues and to identify knowledge gaps. A sample was generated via PubMed using (...) keywords “[(ethics OR *ethic*) AND suicid*] AND [English (Language) OR French (Language)]” (final N = 52), ethics content was extracted according to scoping review methodology, and categorized thematically. We identified three main areas posing ethical challenges for health professionals caring for suicidal individuals and their families. These were: (1) making clinical decisions for patients in acute care or when presented with specific circumstances; (2) issues arising from therapeutic relationships in chronic care, and (3) organizational factors. There is considerable uncertainty about how to resolve ethical issues when caring for someone who is suicidal. The stigma associated with suicide and mental illness, problems associated with risk–benefit assessments, and the fear of being held liable for malpractice should a patient die by suicide were overarching themes present across these three categories. Caring for suicidal patients is clinically and ethically challenging. The current literature highlights the complexity and range of decisions that need to be made. More attention should be paid to the difficulties faced by healthcare professionals and the development of solutions. (shrink)

Research on the use of propranolol as a pharmacological memory dampening treatment for post-traumatic stress disorder is continuing and justifies a second look at the legal and ethical issues raised in the past. We summarize the general ethical and legal issues raised in the literature so far, and we select two for in-depth reconsideration. We address the concern that a traumatized witness may be less effective in a prosecution emerging from the traumatic event after memory dampening treatment. We analyze this (...) issue in relation to sexual assault, where the suggestion that corroborating evidence may remedy any memory defects is less likely to be helpful. We also consider the clinical ethical question about a physician's obligation to discuss potential legal consequences of memory dampening treatment. We conclude that this latter question reflects a general problem related to novel medical treatments where the broader socio-legal consequences may be poorly understood, and suggest that issues of this sort could usefully be addressed through the promulgation of practice guidelines. (shrink)