Psychiatric disorders present distinct clinical challenges which are partly attributable to their multifactorial aetiology and the absence of laboratory tests that can be used to confirm diagnosis or predict risk. Psychiatric disorders are highly heritable, but also polygenic, with genetic risk conferred by interactions between thousands of variants of small effect that can be summarized in a polygenic risk score. We discuss four areas in which the use of polygenic risk scores in psychiatric research and clinical contexts could have ethical (...) implications. First, there is concern that clinical use of polygenic risk scores may exacerbate existing health inequities. Second, research findings regarding polygenic risk could be misinterpreted in stigmatising or discriminatory ways. Third, there are concerns associated with testing minors as well as eugenics concerns elicited by prenatal polygenic risk testing. Fourth, potential challenges that could arise with the feedback and interpretation of high polygenic risk for a psychiatric disorder would require consideration. While there would be extensive overlap with the challenges of feeding back genetic findings in general, the potential clinical use of polygenic risk scoring warrants discussion in its own right, given the recency of this possibility. To this end, we discuss how lay interpretations of risk and genetic information could intersect. Consideration of these factors would be necessary for ensuring effective and constructive communication and interpretation of polygenic risk information which, in turn, could have implications for the uptake of any therapeutic recommendations. Recent advances in polygenic risk scoring have major implications for its clinical potential, however, care should be taken to ensure that communication of polygenic risk does not feed into problematic assumptions regarding mental disorders or support reductive interpretations. (shrink)

Jewish spirituality and religion include dynamics that are different from other traditions and have important implications for relational forms of spirituality. Certain approaches to relational Judaism (e.g. Mussar) have offered insights for understanding the folk psychology of relational spirituality in Jewish contexts but have not generated empirical research. Existing research in the psychology of Jewish religion and spirituality draws on several theoretical frameworks and has generated helpful findings. In this synthetic review, we foreground the role of theory in psychological research (...) and offer a brief review of several theoretical frameworks used in research on the psychology of Jewish religion and spirituality (cognitive-behavioral, psychodynamic, cultural psychology of religion, and positive psychology). The relational spirituality model (RSM) is summarized as a conceptual framework that could be useful for future research in this area. We use the RSM as a heuristic organizing framework to review several lines of prior empirical research on the psychology of Jewish religion and spirituality that fit within the RSM domains of spiritual dwelling, seeking, and struggles. The final section outlines future directions in research in this area based on the RSM, with particular attention to dimensions of diversity (e.g. gender, sexual orientation), diverse contexts of Jewish spirituality, Jewish spirituality in relation to both mental health suffering and flourishing, and historical trauma. We also highlight the need for research on Jewish spiritual development in communal settings (e.g. congregations, seminaries) to provide a deeper understanding at both individual and communal levels, and interdisciplinary integration with Jewish theology. (shrink)

The availability of a range of new psychotropic agents raises the possibility that these will be used for enhancement purposes (smart pills, happy pills, and pep pills). The enhancement debate soon raises questions in philosophy of medicine and psychiatry (eg, what is a disorder?), and this debate in turn raises fundament questions in philosophy of language, science, and ethics. In this paper, a naturalistic conceptual framework is proposed for addressing these issues. This framework begins by contrasting classical and critical concepts (...) of categories, and then puts forward an integrative position that is based on cognitive-affective research. This position can in turn be used to consider the debate between pharmacological Calvinism (which may adopt a moral metaphor of disorder) and psychotropic utopianism (which may emphasize a medical metaphor of disorder). I argue that psychiatric treatment of serious psychiatric disorders is justified, and that psychotropics are an acceptable kind of intervention. The use of psychotropics for sub-threshold phenomena requires a judicious weighing of the relevant facts (which are often sparse) and values. (shrink)

Glas's article is one of several in an interesting special issue focused on applying concepts from enactivism to psychiatry; his focuses on anxiety in particular. Given ongoing developments in work on enactivism, and ongoing debates about how to progress psychiatry, this application is timely. Here, I make three general points about the application of enactivism to psychiatry; I exemplify these with occasional comments on social anxiety disorder.First, as de Haan notes in her introduction, the term enactivism encompasses a number of (...) authors and ideas. Wilson and Foglia note that enactivism falls within a broader literature on "embodied cognition." This literature is partly conceptual, but also relies on... (shrink)

The posterior parietal cortex (PPC) is the most likely site where egocentric spatial relationships are represented in the brain. PPC cells receive visual, auditory, somaesthetic, and vestibular sensory inputs; oculomotor, head, limb, and body motor signals; and strong motivational projections from the limbic system. Their discharge increases not only when an animal moves towards a sensory target, but also when it directs its attention to it. PPC lesions have the opposite effect: sensory inattention and neglect. The PPC does not seem (...) to contain a “map” of the location of objects in space but a distributed neural network for transforming one set of sensory vectors into other sensory reference frames or into various motor coordinate systems. Which set of transformation rules is used probably depends on attention, which selectively enhances the synapses needed for making a particular sensory comparison or aiming a particular movement. (shrink)

The central theme of this book is that technological advances in medicine have created a multitude of choices for each individual -- choices that can influence how we live and die. These choices are difficult ones, and the book provides a better understanding of the issues. Thus, the implications of each choice become clearer. Such decisions remain inherently very difficult and personal. Thoughtful, compassionate societies must consider these difficult problems. Can we develop mechanisms to assist in the medical choices that (...) will inevitably take place throughout each individual's life? Jane Stein makes a stimulating effort to clarify these subjects in this book. She calls to attention problems we would prefer to avoid, touches the untouchable, and in so doing contributes to a constructive debate on the future of human life. - Preface. (shrink)

"This book will take its place in libraries next to the finest works abou;this creative thinker." —Religious Studies Review "... gives a fine sense of the present state and the future direction of Edwards studies... Recommended for upper-division undergraduate and graduate students." —Choice "... this volume opens up new windows, not only on previously neglected texts of Jonathan Edwards, but on the larger cultural functions and effects of those texts." —Journal of the History of the Behavioral Sciences Here is a (...) compact survey of current Edwards scholarship. These essays present groundbreaking contemporary scholarship focusing on the writings of the 18th-century American philosopher and theologian Jonathan Edwards. They range widely across the Edwardsian canon, including his most prominent and important published texts—Religious Affections and The Nature of True Virtue—as well as unfamiliar treatises and sermons. (shrink)

BackgroundCommunity engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research participants and their community from research-related risks, (...) as well as intrinsic goals such as promoting the respect of participants and their community. However, successful community engagement depends on the degree to which CABs legitimately represent and engage with communities targeted for research. Currently, there is little literature describing the use of CABs in genomics research taking place in developing countries, and even less in the field of genomics research relating to mental illness. The aim of this article is to describe and consider the contributions made by a researcher-driven, population-specific CAB in a genomics of schizophrenia research project taking place in South Africa, from the perspective of the research team.DiscussionFour broad discussion topics emerged during the CAB meetings namely: 1) informed consent procedures, 2) recruitment strategies, 3) patient illness beliefs and stigma experiences, and 4) specific ethical concerns relating to the project. The authors consider these discussions in terms of their contributions to instrumental and intrinsic goals of community engagement.SummaryThe CAB gave valuable input on the consent processes and materials, recruitment strategies and suggested ways of minimizing the potential for stigma and discrimination. All of these contributions were of an instrumental nature, and helped improve the way in which the research took place. In addition, and perhaps more importantly, the CAB made a unique and important contribution relating to intrinsic functions such as promoting the respect and dignity of research participants and their community. This was particularly evident in ensuring sensitivity and respect of the community’s traditional beliefs about schizophrenia and its treatment, and in this way promoting a respectful relationship between the research team and the participants. (shrink)

Tilmes concludes his interesting and informative piece with the sentence that “analysis of psychiatric vagueness merits further consideration.” I agree with this point, as well as with his earlier assertion that how one understands psychiatric vagueness may implicate the diagnostic model that one adopts, and the research that one pursues. Fortunately, there has been recent attention to vagueness in psychiatry, addressing both degree-vagueness and combinatorial vagueness. Vagueness in psychiatry is related to a range of nosological debates, including about the...

A central methodological innovation in cognitive science has been the development of connectionist or neural network models of psychological phenomena. These models may also comprise a theoretically integrative and methodologically rigorous approach to psychiatric phenomena. In this paper we employ connectionist theory to conceptualize obsessive-compulsive disorder . We discuss salient phenomenological and neurobiological findings of the illness, and then reformulate these using neural network models. Several features and mechanisms of OCD may be explicated in terms of disordered networks. Neural network (...) modeling appears to constitute a novel and potentially fertile approach to psychiatric disorders such as OCD. (shrink)

Despite the effort on DSM-5 and ICD-11, few appear satisfied with these classification systems. We suggest that the core reason for dissatisfaction is expecting too much from them; they do not provide discrete categories that map to specific causes of disease, they describe clinical syndromes intended to guide treatment choices. Here we review work on anxiety and anxiety disorders to argue that while clinicians draw a pragmatic distinction between normal and abnormal emotions based on considerations such as severity and duration, (...) understanding the evolutionary origins and utility of the emotions, including the adaptive value of adverse emotions, is key for formulating comprehensive assessments of an individual patient’s symptoms and for providing a conceptual foundation for pharmacotherapy, psychotherapy, and public health. (shrink)

Understanding the origins of evil behaviour is one of our most important intellectual tasks. A distinction can perhaps be drawn between overt sadistic cruelty and the lack of empathy to suffering that is a hallmark of evil. There is increasing data available on the prevalence, proximal psychobiological underpinnings, and distal evolutionary basis for these contrasting phenomena.

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 12.3 (2005) 261-263 [Access article in PDF] The Philosophy of Evil Dan J. Stein Keywords philosophy, evil, self-deception, psychopathy, narcissism, sadism Kubarych (2005) first draws on Peck (1983) to suggest a distinction between psychopaths who have no conscience and therefore no need for self-deception, and evil narcissists who use self-deception to keep the emotional consequences of their crimes out of awareness. He then draws (...) on Davidson (1985) to emphasize a parallel between self-deception (or weakness of the warrant) where an irrational belief conflicts with the evidence, and akrasia (or weakness of the will) where an irrational intention is in conflict with one's values.Although self-deception has long been de-scribed and debated (Fingarette 2000; McLaughlin and Rorty 1988; Mele 2001), a cognitive-affective neuroscience of self-deception has become possible only recently. Such an approach includes several strands. First, contemporary information processing constructs (e.g., schemas) have been used to reframe the early insights of writers like Freud and James, and to emphasize how inattention to painful truths provide a shield against anxiety (Goleman 1997). Second, the theoretical framework of evolutionary psychology has been used to emphasize the adaptive advantages of self-deception (Lockard and Delroy 1988). Third, functional brain imaging studies have noted increased activity in executive regions (e.g., prefrontal and anterior cingulate cortices) during attempted deception but not during truthful responding, suggesting that the former requires active effort (Spence et al. 2004). The functional imaging of memory suppression suggests similar processes (Anderson et al. 2004). To date, however, there has been little functional imaging work on self-deception.Similarly, although evil has always been a key concern of philosophical thought, a cognitive-affective neuroscience of evil has emerged only in recent years (Stein 2000). Evil actions are not homogenous, and this area of research again comprises a number of different strands. First, there are actions where the primary aim is not necessarily to hurt, but where harm is in fact inflicted. (A contested, but perhaps useful example, is the battery-raising of animals for human consumption [Singer 2001]). Second, there are actions where the aim is to hurt, and where harm to the other may even be enjoyed. (During normal altruistic punishment, for example, reward circuitry is activated [de Quervain et al. 2004]). Third, there are actions characterized by impulsive aggression, and a relative absence of executive control. (There may be psychobiological distinctions between reactive aggression in response to frustration or threat, and instrumental aggression that is more goal directed [Blair 2004]).What are the implications of these two sets of cognitive-affective neuroscience literature for a philosophical consideration of evil and of narcissism? [End Page 261] It may be useful to differentiate healthy processes (e.g., having sufficient frontal cortical activity to be able to deceive others) from psychopathologic processes (e.g., not having the necessary frontal-amygdala circuitry required for empathic processing of emotions in social interaction). Similarly, it may be useful to differentiate between normal healthy narcissism (Taylor and Brown 1988) and pathologic malignant narcissism (Kernberg 1985), and between normal altruistic punishment (Hamilton 1963) and pathologic sadistic personality (Kaminer and Stein 2001). In addition, it is perhaps the case that some cognitive-affective processes that do not seem to involve psychopathology may nevertheless be seen as evil (e.g., arguably, the processes that allow a human to eat a battery-raised chicken), whereas some cognitive-affective processes that are clearly psychopathologic may not be viewed as evil (e.g., impulsive aggression in the context of a frontal lobe tumor may be viewed as excusable, as "mad" rather than "bad").Taken together with recent work on the cognitive-affective neuroscience of psychopathy, narcissism, and sadism, these considerations may lead to somewhat different approaches from those taken by Peck and Davidson. In his work on psychopathy, for example, Blair emphasizes a dysfunction in cognitive-affective processing resulting in abnormalities in the weighing up of social emotions (Blair 2004). This account is not inconsistent with a view that in psychopathy there is a disturbance in moral processing that is evil (contra Peck). Furthermore, this... (shrink)

Many of Rose's criticisms of determinism in biology have clear relevance to modern cognitive and psychiatric science; too narrow a focus on the brain as an information processing machine runs the risk of neglecting the context in which information processing takes place, and too narrow a focus on the neuroscience of psychopathology runs the risk of neglecting other levels of explanation for these phenomena. It should be emphasized, however, that animal and genetic studies of phenomena of interest to cognitive and (...) psychiatric science (e.g., Alzheimer's disorder, schizophrenia, attention deficit/hyperactivity disorder, and violence), while perhaps only providing a partial perspective, may be useful in understanding these phenomena and in leading to appropriate psychiatric interventions. (shrink)

Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during (...) this consent process? 760 Xhose people with schizophrenia and 760 controls were matched to sex, age, level of education and recruitment region. We used descriptive statistics to determine the proportion of participants who consented to cell line creation and immortalization. Logistic regression methods were used to examine the predictors of consent. Reflections from study recruiters were elicited and discussed to identify key questions raised by participants about consent. Approximately 40% of participants consented to cell line storage. The recruiter who sought consent was a strong predictor of participant’s consent. Participants recruited from the South African Eastern Cape, and older participants, were more likely to consent; both these groups were more likely to hold traditional Xhosa values. Neither illness nor education were significant predictors of consent. Key questions raised by participants included two broad themes: clarification of what cell immortalisation means, and issues around individual and community benefit. These findings provide guidance on the proportion of participants likely to consent to cell line immortalisation in genomics research in Africa, and reinforce the important and influential role that study recruiters play during seeking of this consent. Our results reinforce the cultural and contextual factors underpinning consent choices, particularly around sharing and reciprocity. Finally, these results provide support for the growing literature challenging the stigmatizing perception that people with severe mental illness are overly vulnerable as a target group for heath research and specifically genomics studies. (shrink)

Preparing the Next Generation of Oral Historians is an invaluable resource to educators seeking to bring history alive for students at all levels. Filled with insightful reflections on teaching oral history, it offers practical suggestions for educators seeking to create curricula, engage students, gather community support, and meet educational standards. By the close of the book, readers will be able to successfully incorporate oral history projects in their own classrooms.

ABSTRACTSchumpeter’s theory of socialism pivots on his response to Ludwig von Mises’s claim that rational economic calculation is “impossible” in a socialist economy. Mises held that because socialism eliminates market prices for the means of production, it is impossible under socialism to know the relative scarcities of productive inputs, and thus to determine rationally which of any number of technologically feasible production projects to pursue. Schumpeter appears to assume away Mises’s epistemic concerns about socialism by contending that it is theoretically (...) possible to determine which goods should be produced in a socialist economy if all the relevant data are known—which begs the question Mises had asked. Did Schumpeter really commit such an elementary error of interpretation? Or was the appearance of doing so part of his attempt to communicate to the reader of Capitalism, Socialism and Democracy a host of reservations about the likely consequences of socialism in practice, even as he ostentatiously praised its feasibility in principle? (shrink)

A variety of mental disorders—including ASD, ADHD, major depression, and anxiety disorder, among others—may directly impact what an agent notices or fails to notice. A recent debate has emphasised the potential significance of such “impairment-derived ignorance,” and argued that failure to account for certain compelling cases would seriously undermine theories which intend to establish the conditions for blameworthy ignorance. In this comment we argue, contra a recent challenge, that Quality of Will (QW) accounts are able to explain the normative significance (...) of impairment-derived ignorance. The plausible, ambivalent results QW accounts yield in difficult cases of impairment-derived ignorance further reveals the explanatory power of such accounts when it comes to blameworthy ignorance. (shrink)

This article describes and evaluates an approach to create and/or improve tactical agents through direct human interaction in real time through a force-feedback haptic device. This concept takes advantage of a force-feedback joystick to enhance motor skill and decision-making transfer from the human to the agent in real time. Haptic devices have been shown to have high bandwidth and sensitivity. Experiments are described for this new approach, named Instructional Learning. It is used both as a way to build agents from (...) scratch as well as to improve and/or correct agents built through other means. The approach is evaluated through experiments that involve three applications of increasing complexity – chasing a fleer, shepherding a flock of sheep into a pen, and driving a virtual automobile through a simulated road network. The results indicate that in some instances, instructional learning can successfully create agents under some circumstances. However, instructional learning failed to build and/or improve agents in other instances. The Instructional Learning approach, the experiments, and their results are described and extensively discussed. (shrink)

Psychiatric genetic research investigates the genetic basis of psychiatric disorders with the aim of more effectively understanding, treating, or, ultimately, preventing such disorders. Given the challenges of recruiting research participants into such studies, the potential for long‐term benefits of such research, and seemingly minimal risk, a strong claim could be made that all non‐acute psychiatric inpatients, including forensic and involuntary patients, should be included in such research, provided they have capacity to consent. There are tensions, however, regarding the ethics of (...) recruiting psychiatric inpatients into such studies. In this paper our intention is to elucidate the source of these tensions from the perspective of research ethics committee interests and decision‐making. We begin by defining inpatient status and outline some of the assumptions surrounding the structures of inpatient care. We then introduce contemporary conceptions of vulnerability, including Florencia Luna’s account of vulnerability which we use as a framework for our analysis. While psychiatric inpatients could be subject to consent‐related vulnerabilities, we suggest that a particular kind of exploitation‐related vulnerability comes to the fore in the context of our case study. Moreover, a subset of these ethical concerns takes on particular weight in the context of genetic research in low‐ and middle‐income countries. At the same time, the automatic exclusion of inpatients from research elicits justice‐related vulnerabilities. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:When We Collide: Sex, Social Risk, and Jewish Ethics by Rebecca J. Epstein-LeviJoshua Stein (bio)When We Collide: Sex, Social Risk, and Jewish Ethics by Rebecca J. Epstein-Levi. Bloomington: Indiana University Press, 2023Sex is messy:Ethicists have an unfortunate habit of speaking of sex—or "good" sex, anyway—in lofty, aspirational terms: the physical and spiritual union of committed partners, the human sharing in divine creativity, the two becoming one, and (...) so on. This image of choreographed perfection is reproduced in popular culture. … But the actual practice of sex, by ordinary people, is not so lofty, so beautifully synchronous. Real sex, even "good" sex, is carnivalesque, even grotesque. Real sex involves fluids, farts, jiggling, grunting, adjustments of position, arms falling asleep, and accidental pinching or pulling of hair … and the making of a vast number of frankly ridiculous faces (83).Rebecca J. Epstein-Levi's When We Collide (2023) challenges us to think about sex as it is, rather than as we are conditioned to talk about it (or as we might sometimes like to imagine it). This is foundational to the book. There is a familiar tradition of sanitizing sex, reducing it to teleology, idealized bodies, heteronormativity, and venerated social institutions. In dispensing with this sanitized illusion, the book adopts a healthier and more honest relationship with sex; in order to have a productive discussion about the ethics of any human activity, that discussion should represent the human activity faithfully. Part of the reason that Epstein-Levi takes this approach is to distinguish Jewish ethics' discussion of sex, which regards sex, and therefore sexual ethics, "as an empirical, lived, and granular phenomenon" (3).Discussions in Jewish sexual ethics should treat sex as a lived social experience and be responsive to the messiness of that experience. Epstein-Levi argues that sanitizing sex through appeal to a nebulous notion of how historical [End Page 99] religious traditions must have been puritanical is ahistorical, chauvinistic, and inconsistent with scholarship on rabbinic texts.This is a striking and perhaps subversive view in our present context. Centrally, many associate "religious views" (especially in sexual ethics) with politically Conservative and purity-driven views characteristic of some Christian traditions. The term "Judeo-Christian" in American political discourse is often used evocatively of the heteronormative, sanitized, idealized posture toward sex that Levi explicitly rejects. Epstein-Levi's book recognizes that rabbinic scholarship underrepresents marginalized communities, including women, LGBTQ+ people, and disabled people. This is the major moral and practical focus of Epstein-Levi's analysis; historical traditions in which dominant moral views are shaped by a particular group often have glaring blind spots. When we recognize those blind spots, as members of that tradition, need to be updated simply to address sex as it exists, not as we idealize it.The book centers Jewish texts and methods of thought, but (in my view) readers who will benefit most from reading Epstein-Levi's book are non-Jewish readers thinking about sex. Epstein-Levi's book illustrates methodological differences in Jewish ethics from other approaches. The ethics of sex should change as our knowledge of sex changes; as we learn about sexual activity and about the social lives of people, we should apply that knowledge to our understanding. For Jewish thought, ethics is discursive, not fixed; our understanding of ethics requires constant consideration and discussion as our understanding of the world changes and improves.One central focus of the book is risk; our knowledge of sex changes as we understand and mediate against the risks involved in sexual activity and as we learn more about how risk works itself. Risk is tied up in all social activity, including sex. The ethics of sex requires discussion of risk but often does so in a way not congruous with the discussion of risk in other areas of social life. "Sex is dangerous. … Sexual intercourse opens us up to risks of infections, violence, and, if we are in possession of functional ovaries and a uterus, pregnancy" (98). All social activity is risky; we are all acutely aware given the prospects of exposure to strains of a novel coronavirus and the way we have changed our... (shrink)

Ensuring the trustworthiness of autonomous systems and artificial intelligence is an important interdisciplinary endeavour. In this position paper, we argue that this endeavour will benefit from technical advancements in capturing various forms of responsibility, and we present a comprehensive research agenda to achieve this. In particular, we argue that ensuring the reliability of autonomous system can take advantage of technical approaches for quantifying degrees of responsibility and for coordinating tasks based on that. Moreover, we deem that, in certifying the legality (...) of an AI system, formal and computationally implementable notions of _responsibility_, _blame_, _accountability_, and _liability_ are applicable for addressing potential responsibility gaps (i.e. situations in which a group is responsible, but individuals’ responsibility may be unclear). This is a call to enable AI systems themselves, as well as those involved in the design, monitoring, and governance of AI systems, to represent and reason about who can be seen as responsible in prospect (e.g. for completing a task in future) and who can be seen as responsible retrospectively (e.g. for a failure that has already occurred). To that end, in this work, we show that across all stages of the design, development, and deployment of trustworthy autonomous systems (TAS), responsibility reasoning should play a key role. This position paper is the first step towards establishing a road map and research agenda on how the notion of responsibility can provide novel solution concepts for ensuring the _reliability_ and _legality_ of TAS and, as a result, enables an effective embedding of AI technologies into society. (shrink)

We routinely take diminished capacity as diminishing moral responsibility (as in the case of immaturity, senility, or particular mental impairments). The prospect of enhanced capacity therefore poses immediate questions with regard to moral responsibility. Of particular interest are those capacities that might allow us to better avoid serious harms or wrongdoing. We can consider questions of responsibility with regards to enhancement at various removes. In the first instance: where such (safe and effective) interventions exist, do we have an obligation to (...) undergo such enhancement? Secondly: once enhanced, would the ambit of our responsibility therefore increase? Some philosophers have argued that enhanced capacities potentially generate “hyperresponsibility.” Hyperresponsible people would be held to a different and higher moral standard than those of us with more ordinary human capacities, and are liable to be more blameworthy for wrongdoing than ordinary agents. This chapter discusses the implications of enhancement for three central views of responsibility, namely: capacity-based, control-based and revelation-based views. Debates around moral responsibility have primarily concerned diminished capacities; as such the prospect of enhancement introduces new terrain—and potentially new fault-lines and complexities—in which to interrogate our theoretical conceptions of the foundations (and limits) of moral responsibility. (shrink)

BackgroundCritical to conducting high quality research is the ability to attract and retain participants, especially for longitudinal studies. Understanding participant experiences and motivators or barriers to participating in clinical research is crucial. There are limited data on healthy participant experiences in longitudinal research, particularly in low- and middle-income countries. This study aims to investigate quantitatively participant experiences in a South African birth cohort study.MethodsMaternal participant experience was evaluated by a self-administered survey in the Drakenstein Child Health Study, a longitudinal birth (...) cohort study investigating the early life determinants of child health. Pregnant mothers, enrolled during the second trimester, were followed through childbirth and the early childhood years. Satisfaction scores were derived from the participant experience survey and quantitatively analyzed; associations between satisfaction scores and sociodemographic variables were then investigated using a linear regression model.ResultsData were included from 585 pregnant mothers, who had participated in the study for a median time of 16 months. Overall participant satisfaction was high and associated with increased attendance of study visits. Reasons for participating were a belief that involvement would improve their health, their child’s health or the health of family and friends. Potential reasons for leaving the study were inconvenience, not receiving clinical or study results, and unexpected changes in study visits or procedures. Variables associated with higher overall satisfaction scores were no prior participation in research, higher socioeconomic status, less intensive follow-up schedules and having experienced stressful life events in the past year.ConclusionsSatisfaction scores were high and associated with increased visit attendance. Participants’ perceived benefits of study participation, most notably the potential for an improvement in the health of their child, were a significant motivator to enroll and remain in the study. The consistent theme of perceived health benefits as a motivator to join and remain in the study raises the question of whether participation in research results in actual improvements in health. (shrink)