Dan J Stein

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

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.

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.

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...