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)
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)
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)
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)
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)
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...
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.
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)
Insofar as South Africa underwent a rapid transformation from apartheid to democracy, it may provide a unique laboratory for investigating aspects of revenge and forgiveness. Here we suggest that observations and data from South Africa are partially consistent with the hypotheses generated by MCullough and colleagues. At the same time, the rich range of revenge and forgiveness phenomena in real-life settings is likely to require explanatory concepts other than specialized modules and their computational outputs.
Psychopharmacology - a remarkable development -- Philosophical questions raised by psychopharmacology -- How to think about science, language, and medicine : classical, critical, and integrated perspectives -- Conceptual questions about psychotropics -- Explanatory questions about psychotropics -- Moral questions about psychotropics.
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)
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)
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)
This study investigated the applicability of a novel instrument to assess parent–child attunement in free play interactions, in dyads with an infant with and without visual impairments. We here report the findings on the reliability and applicability of the newly developed Attune & Stimulate Mother–Infant 56-items Instrument in two separate samples: one with infants with VI and one with typically sighted infants. In addition, we assessed the contribution of parental sensitivity to attunement in dyadic interactions. The A&S M-I is an (...) observational comprehensive instrument of behaviors that captures different body parts and their motility, and different senses. The appropriate responding of a parent to the child’s signal reflects the ability to attune in the dyad as well as parent’s ability to stimulate the child to become engaged in the contact or activity. Consistency assessments revealed good reliability for maternal and infant behaviors, acceptable internal consistency and good test–retest reliability. Furthermore, both samples scored significantly above chance level on attunement, suggesting that the instrument captures parent–infant behavioral coordination, and VI was not related to parent–infant attunement. Lastly, a relation between parental sensitivity and attunement was found only in the TS sample. Altogether, these findings provide promising initial evidence of the applicability of the A&S M-I instrument for assessing dyadic attunement across different populations and ages. Having assessed the applicability of this observational instrument, future work should corroborate these findings in larger samples. (shrink)