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)

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)

Psychiatric genomics research with African populations comes with a range of practical challenges around translation of psychiatric genomics research concepts, procedures, and nosology. These challenges raise deep ethical issues particularly around legitimacy of informed consent, a core foundation of research ethics. Through a consideration of the constitutive function of language, the paper problematises like‐for‐like, designative translations which often involve the ‘indigenization’ of English terms or use of metaphors which misrepresent the risks and benefits of research. This paper argues that effective (...) translation of psychiatric genomics research terminology in African contexts demands substantive engagement with African conceptual schemas and values. In developing attenuated forms of translational thinking, researchers may recognise the deeper motivational reasons behind participation in research, highlighting the possibility that such reasons may depart from the original meaning implied within informed consent forms. These translational issues might be ameliorated with a critical re‐examination of how researchers develop and present protocols to institutional ethics review boards. (shrink)

Informed consent procedures for participation in psychiatric genomics research among individuals with mental disorder and intellectual disability can often be unclear, particularly because the underlying ethos guiding consent tools reflects a core ethical tension between safeguarding and inclusion. This tension reflects important debates around the function of consent tools, as well as the contested legitimacy of decision-making capacity thresholds to screen potentially vulnerable participants. Drawing on human rights, person-centred psychiatry and supported decision-making, this paper problematises the use of consent procedures (...) as screening tools in psychiatric genomics studies, particularly as increasing normative emphasis has shifted towards the empowerment and participation of those with mental disorder and intellectual disabilities. We expound on core aspects of supported decision-making, such as relational autonomy and hermeneutic competence, to orient consent procedures towards a more educative, participatory framework that is better aligned with developments in disability studies. The paper concludes with an acknowledgement of the pragmatic and substantive challenges in adopting this framework in psychiatric genomics studies if this participatory ethos towards persons with mental disorder and intellectual disability is to be fully realised. (shrink)

Background The rise in genomic and biobanking research worldwide has led to the development of different informed consent models for use in such research. This study analyses consent documents used by investigators in the H3Africa (Human Heredity and Health in Africa) Consortium. Methods A qualitative method for text analysis was used to analyse consent documents used in the collection of samples and data in H3Africa projects. Thematic domains included type of consent model, explanations of genetics/genomics, data sharing and feedback of (...) test results. Results Informed consent documents for 13 of the 19 H3Africa projects were analysed. Seven projects used broad consent, five projects used tiered consent and one used specific consent. Genetics was mostly explained in terms of inherited characteristics, heredity and health, genes and disease causation, or disease susceptibility. Only one project made provisions for the feedback of individual genetic results. Conclusion H3Africa research makes use of three consent models—specific, tiered and broad consent. We outlined different strategies used by H3Africa investigators to explain concepts in genomics to potential research participants. To further ensure that the decision to participate in genomic research is informed and meaningful, we recommend that innovative approaches to the informed consent process be developed, preferably in consultation with research participants, research ethics committees and researchers in Africa. (shrink)

A prefrontal control system that is less mature than the limbic reward system in adolescence is thought to impede self-regulatory abilities, which could contribute to poor dietary choices and obesity. We, therefore, aimed to examine whether structural morphology of the prefrontal cortex and the amygdala are associated with dietary decisions and obesity in children and adolescents. Seventy-one individuals between the ages of 8–22 years participated in this study; each participant completed a computer-based food choice task and a T1- and T2-weighted (...) structural brain scans. Two indices of obesity were assessed, including age- and sex-specific body mass index and waist-to-height ratio. The behavioral task included rating 60 food stimuli for tastiness, healthiness, and liking. Based on each participant’s self-ratings, 100 binary food choices were then made utilizing a computer mouse. Dietary “self-control” was calculated as the proportion of trials where the individual chose the healthier food item over the total number of trials. Cortical thickness and amygdala subnuclei volumes were quantified using FreeSurfer 6.0 and CIT168 atlas, respectively. We found that WHtR was negatively associated with the thickness of bilateral superior frontal, left superior temporal, right insula, and right inferior temporal regions. We also found WHtR to be positively associated with the volume of the central nucleus region of the amygdala, after adjusting for the hemisphere, age, sex, and intracranial volumes. A similar data pattern was observed when BMIz was used. Moreover, we found that across all participants, thinner right superior frontal cortex and larger left CEN volumes predicted lower dietary self-control. These results suggest that differential development of the PFC and amygdala relate to obesity and dietary self-control. Further longitudinal studies are merited to determine causal relationships among altered PFC to amygdala neural circuitry, dietary self-control, and obesity. (shrink)

BackgroundMulti-centre studies generally cost more than single-centre studies because of larger sample sizes and the need for multiple ethical approvals. Multi-centre studies include clinical trials, clinical quality registries, observational studies and implementation studies. We examined the costs of two large Australian multi-centre studies in obtaining ethical and site-specific approvals.MethodsWe collected data on staff time spent on approvals and expressed the overall cost as a percent of the total budget.ResultsThe total costs of gaining approval were 38 % of the budget for (...) a study of 50 centres (mean cost AUD $6960 per site) and 2 % for a study of 11 centres (mean cost AUD $2300 per site). Seventy-five and 90 % of time was spent on repeated tasks, respectively, and many time-consuming tasks, such as reformatting documents, did nothing to improve the study design or participant safety.ConclusionsImprovements have been made to the ethical approval application system, but more gains could be made without increasing risks of harm to research participants. We propose that ethical review bodies and individual sites publish statistics on how long they take to process approvals which could then be nationally benchmarked. (shrink)

Community engagement has been recognised as an important aspect of the ethical conduct of biomedical research, especially when research is focused on ethnically or culturally distinct populations. While this is a generally accepted tenet of biomedical research, it is unclear what components are necessary for effective community engagement, particularly in the context of genomic research in Africa.

Since the collapse of the Soviet Union, the United States has faced the challenge of reorienting its foreign policy to address post-Cold War conditions. In this new edition of a groundbreaking work -- one of the first to bring critical theory into dialogue with more traditional approaches to international relations -- David Campbell provides a fundamental reappraisal of American foreign policy, with a new epilogue to address current world affairs and the burgeoning focus on culture and identity in the (...) study of international relations. Extending recent debates in international relations, Campbell shows how perceptions of danger and difference work to establish the identity of the United States. He demonstrates how foreign policy, far from being an expression of a given society, constitutes state identity through the interpretation of danger posed by others. Copyright © Libri GmbH. All rights reserved. (shrink)

In this article, I make the case for the continued relevance of Plato’s Timaeus. I begin by sketching Allan Bloom’s picture of the natural sciences today in The Closing of the American Mind, according to which the natural sciences are, objectionably, increasingly specialized and have ejected humans qua humans from their purview. I argue that Plato’s Timaeus, despite the falsity of virtually all of its scientific claims, provides a model for how we can pursue scientific questions in a comprehensive way (...) that stresses their connections to other disciplines, including the humanities, and that puts humanity qua humanity back in the picture. I then argue that being led by Plato’s philosophy to return humanity conceptually to the natural world can improve our thinking regarding climate change and other important environmental crises. (shrink)

The conversation with Jill H. Casid and Anna Campbell is a reconceptualization of several themes to develop an aesthetic that incorporates notions of the necropolitical and redefines the concept of the Anthropocene as the Necrocene. The Necrocene implies an era marked by death, decay, and the consequences of human impact on the environment, as well as a critical reflection on the choices individuals and societies make that contribute to the transition from the Anthropocene to the Necrocene. These reflections serve (...) as cautionary tales or reflections on the unsustainable path of the Anthropocene. An important reflection in the interview is how queer and transgender people are using art and assemblages to refuse the terms of the current tensions of the culture wars. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:IntroductionStuart J. Youngner (bio), Laura A. Siminoff (bio), and Renie Schapiro (bio)This issue of the Kennedy Institute of Ethics Journal (KIEJ) centers on a piece of empirical research. The motivation behind the study of Laura Siminoff, Christopher Burant, and Stuart Youngner (2004) was to find out more about what the general public understands and believes about when a person is dead. More specifically, the study tried to determine how (...) members of the public define death, especially their acceptance and interpretation of the medical concept of "brain death," and their attitudes toward the so-called "dead donor rule," an informal but powerful social and legal norm insisting that the taking of organs for transplantation not cause the death of the source of those organs.As the demand for organs increases and the waiting list grows, the United States has explored multiple ways to expand the pool of potential donors. One approach has been to gerrymander (coherently or not) the line between life and death to shift patients who are extremely compromised but traditionally considered to be in the living category into the dead category. In this way, the dead donor rule remains technically intact. This reasoning is explicit in the report of the Harvard Medical School Ad Hoc Committee (1968) that "introduced" "brain death" to the American culture. Since then, other efforts to redraw the line have been proposed and rejected.One alternative to gerrymandering is to consider under what conditions, if any, it is morally acceptable to violate the dead donor rule. Some would argue that this alternative is the more "honest" approach. Rather than sidestepping moral problems by calling people dead, it brings the moral problems to the surface where the necessity of sticking to the rule can be considered on its own merits. However, when the Journal of the American Medical Association printed a position paper that proposed making anencepahlic newborns an exception to the dead donor rule, along with arguments about why this was acceptable, the outcry was so great that the proposal was retracted (AMA 1995).Clearly, our society has identified organ transplantation as a priority, although two papers in this volume (those by Courtney Campbell and by Megan Crowley-Matoka and Robert Arnold) take issue with that prioritization. The fact that the donor pool has remained relatively stable (and inadequate) despite massive efforts [End Page 211] to increase it speaks, at least in part, to the cultural and legal resistance to "new" ways to procure more organs. Voluntarism seems to have peaked. Financial incentives clash with the heavily endorsed notion of the "gift of life" and seem to many to violate the dignity of the human body. Presumed consent or eminent domain, in which the community has a greater claim to a person's organs than that person or his/her family, go against the grain of American individual freedom and the ethos of patient autonomy.Abandoning the dead donor rule generally is regarded as an even tougher sell to the American public and its legislators. The study by Siminoff and colleagues attempts, among other things, to gauge just how tough this sell would be. What the data actually demonstrate is a matter of interpretation, and this issue of the KIEJ is devoted to some of those interpretations. The authors, with the exception of Daniel Hausman, came together for a meeting in Cleveland, Ohio, during which the study's methods and data were presented with time for questions, clarifications, and general discussion. The authors then worked with the editors to generate the papers printed in this volume.The issue begins with a presentation of the study conducted by Siminoff and colleagues. The same paper also appears in the journal Social Science and Medicine, where it includes the conclusions of the authors (Siminoff, Burant, and Youngner 2004). In the current volume, we present only the methodology of and data from the study, allowing a number of distinguished commentators to offer their own conclusions and reflections.The first response comes from Tracy Schmidt, Executive Director of Intermountain Donor Services, one of our nation's organ procurement organizations (OPOs). For years, organ procurement professionals have reported anecdotal stories about families who wished to donate organs of... (shrink)

Feeling Power is a bold and provocative book whose breadth of inquiry is stunning. Author Megan Boler sets out to rescue emotions from their devalued and obscure political status by showing that they are both a site of social control and also a site for political resistance. She situates her inquiry within the context of education, convinced that classrooms, especially within higher education, constitute significant locations of social and political struggle. -/- Boler takes the reader on a wide-ranging interdisciplinary (...) exploration where she analyzes various discourses to show how emotions get visibly and invisibly addressed in education and how emotions reflect particular historical, cultural, and social arrangements. Her broad conception of emotion resonates with philosophical accounts that view emotions as (partially) cognitive as well as with accounts that give emotions a role in moral judgments and ethical reasoning. -/- In Part I, Boler builds upon the work of feminist theorists, such as Elizabeth Spelman (1989, 1991), Alison Jaggar (1989), Sandra Bartky (1990), and Sue Campbell (1997), and uses key concepts drawn from poststructural theorists to develop a theoretical framework for revealing and explicating the myriad ways in which the "politics of emotion," shaped by different scholarly disciplines, functions in public education to enforce social control of the nation's citizens. Through astute, gender-sensitive historical critiques of the mental hygiene and character education movements, and a close analysis of Daniel Goleman's (1995) contemporary notion of emotional intelligence, Boler shows how we are taught to internalize and enact emotional rules, and roles, that serve to maintain society's particular stratifications of gender, race, and class. The chapters on emotional intelligence and the emotional literacy curricula founded on this concept are, I think, among the best in the book. Together they constitute a persuasive example of the power of Boler's method of discourse analysis. (shrink)

In this paper I argue that human beings should reason, not in accordance with classical logic, but in accordance with a weaker ‘reticent logic’. I characterize reticent logic, and then show that arguments for the existence of fundamental Gödelian limitations on artificial intelligence are undermined by the idea that we should reason reticently, not classically.

How does the Christian response to the problem of evil contrast with that of other worldviews? Most attempts at answering the problem of evil either present a straightforward account of the truth claims of Christianity or defend a minimalist concept of God. This book is different. Inside, you'll examine four worldviews' responses to the problem of evil. Then, you'll hear the author's argument that Christian theism makes better sense of the phenomenon of evil in the worldâe"equipping you to reach an (...) informed conclusion. This book's unique approachâe"integrating worldviews with apologetics with theologyâe"will give you a better understanding of the debate surrounding the problem of evil, in both philosophy and theology. Learn to think cogently and theologically about the problem of evil and Christianity's ability to answer its challenges with Worldviews and the Problem of Evil as your guide. (shrink)

This book is based on the work done by a group of British and Italian psychoanalysts who have been meeting twice yearly since 2003 to study clinically the relationship between the mind and the body of their patients The analytical dyad became the focus of a dialectical movement between body and mind and between subject and object. Containing contributions from a range of distinguished British and Italian analysts, this book covers such key topics as somatic symptoms, the embodied unconscious, bodily (...) expressions of affect, sexuality, violence, self-harm, suicide attempts, hypochondria, hysteria, anorexia and bulimia, splits and fragmentation associated with the body. The theoretical understanding is inspired by various psychoanalytic theoreticians, including Freud, M. Klein, Winnicott and Bion and their theories on sexuality, infantile sexuality, libido, aggressiveness, dead instinct, Oedipus complex and mother-child relationship. Offering new advances in theoretical thinking and practical applications for clinical work, this book will be essential for all psychoanalysts and mental health clinicians interested in understanding serious mental disturbance that is represented in the body. (shrink)

This book is based on the work done by a group of British and Italian psychoanalysts who have been meeting twice yearly since 2003 to study clinically the relationship between the mind and the body of their patients The analytical dyad became the focus of a dialectical movement between body and mind and between subject and object. Containing contributions from a range of distinguished British and Italian analysts, this book covers such key topics as somatic symptoms, the embodied unconscious, bodily (...) expressions of affect, sexuality, violence, self-harm, suicide attempts, hypochondria, hysteria, anorexia and bulimia, splits and fragmentation associated with the body. The theoretical understanding is inspired by various psychoanalytic theoreticians, including Freud, M. Klein, Winnicott and Bion and their theories on sexuality, infantile sexuality, libido, aggressiveness, dead instinct, Oedipus complex and mother-child relationship. Offering new advances in theoretical thinking and practical applications for clinical work, this book will be essential for all psychoanalysts and mental health clinicians interested in understanding serious mental disturbance that is represented in the body. (shrink)

This book provides an interdisciplinary perspective on working with young people, focusing on education, health and social work, and draws on projects and perspectives from the United Kingdom, the United States, Canada and Australia. The volume highlights the ethical challenges and dilemmas as these and other services are integrated and addresses how ethical practices are confronted and shared across disciplines.<BR> The first section looks at professional practice; the second foregrounds children's and young people's voices and is especially concerned with children (...) and young people as co-researchers. Subjects addressed within the text include sex education, health education, custodial care, confidentiality and gaining consent, ethical issues around ICT and researching with vulnerable populations.<BR> The book is intended for both scholars and practitioners. It places examples in clearly articulated theoretical frameworks as well as considering professional principles and practice. (shrink)

In this new edition are a detailed bibliography, index, and textual supplements, making it the perfect text for scholars and advanced students of Hume, ...

Ned Block, John Campbell; Functional Role and Truth Conditions, Proceedings of the Aristotelian Society, Volume 88, Issue 1, 1 June 1988, Pages 273–292, https:/.

This study analyzes interview data from 37 science and engineering faculty involved in university-industry relations. Faculty are particularly concerned about how these relations affect their work with graduate students. Our analysis is guided by ritual exchange theory and network theory. First, we explore the ways faculty define and redefine what makes industrial or corporate research appropriate or inappropriate for training graduates. Second, we examine difficulties and tensions faculty face when they work with students on industrial or corporate projects. These difficulties (...) and tensions center on intellectual property and we look at how faculty negotiate with industry over restrictions on publication of graduate student and faculty research results, on faculty and graduate student involvement in start-up companies, and on faculty and graduate student ownership of intellectual property. (shrink)

HUME’S PHILOSOPHICAL SUBVERSION OF RELIGION, NATURAL AND REVEALED, WAS LIFELONG: THE "RELIGIOUS HYPOTHESIS" IS EMPTY. SO I HAVE ARGUED IN A NEW READING OF THE "DIALOGUES". THE ONLY HOPE FOR HUMANITY LIES IN MAN HIMSELF. HUME DISTINGUISHES BETWEEN THE "VULGAR" AND THE "ENLIGHTENED." AT THE APEX OF THE "ENLIGHTENED" STAND THE "HEROES IN PHILOSOPHY," OF WHOM ONLY GALILEO AND NEWTON ARE SPECIFIED. THE "ENLIGHTENED" PROVIDE LEADERSHIP AND KNOWLEDGE, A DUTY WE MAY VIEW AS THE "RELIGION OF MAN." QUITE POSSIBLY HUME (...) CONSIDERED HIMSELF THE THIRD "HERO IN PHILOSOPHY." EVIDENCE IS PROVIDED BY HIS TRIUMPHAL RECEPTION IN PARIS, 1763-1765: "THEY CONSIDER ME AS ONE OF THE GREATEST GENIUSES IN THE WORLD." THUS THE "RELIGION OF MAN" IRONICALLY CONSTITUTES HUME’S PERSONAL RELIGION. (shrink)

Advertisements for high-technology products and services visualize processes and phenomena which are unvisualizable, such as globalization, networks, and information. We turn our attention specifically to the case of nanotechnology advertisements, using an approach that combines visual and sonic culture. Just as phenomena such as complexity and networks have become established in everyday discourse, nanotechnology seizes the social imaginary by establishing its own aesthetic conventions. Elaborating Raymond Williams’ concept of structures of feeling, we show that in visualizing nanotechnology, its stakeholders employ (...) spaces, verbs, and objects of feeling. These favorable nanotechnology structures of feeling are woven into the social imaginary, recursively producing the reality they describe. (shrink)

This study explores African students' use of cultural metaphoric reasoning in classifying everyday situations as hot or cold, as is part of Sotho cultural tradition. It documents the extent to which such metaphoric reasoning is related to the use of science (mis)conceptions of heating. Written probes were used to document cultural metaphoric reasoning and science misconceptions of students entering a university science program. The same instruments were used as postprobes after a 4-week teaching intervention using experimental cognitive conflict strategies for (...) various standard misconceptions on heating. The findings show that almost a third of the sample used metaphoric reasoning consistently. This group was, as expected, significantly dominated by Sotho speakers. Initially, a large percentage of students explained the particulate effect of heating in terms of melting, shrinking, or breaking up of atoms. Most students identified specific materials as good insulators against coldness or against heat. Heat transfer was frequently explained in terms of absorption, diffusion, or reflection rather than conduction. There were no significant differences in the type and frequencies of these alternative concepts held by cultural metaphoric and noncultural metaphoric reasoners before the intervention. The teaching program did not affect cultural metaphoric reasoning, but had significant and equal benefits for the conceptual understanding of both groups, with the exception that the cultural metaphoric reasoners were more persistent in attributing observable properties to atoms. The present study suggests some further modification to the teaching strategies and concludes that, at this level of education, students are able to distinguish between different types of reasoning appropriate for cultural everyday situations and scientific contexts. (shrink)

Over the last decade, stem cell research has generated an enormous amount of public, political and bioethical debate. These debates have overwhelmingly tended to focus on two moral issues: the moral status of human embryos and the duty to care for the sick and vulnerable. This preoccupation, especially on the question of moral status, has not only dichotomized the debate around two fundamentally incommensurable positions, it has come at the cost of other important issues largely being ignored. In highlighting some (...) of the bioethical and regulatory deficiencies of this fixation, we draw on recent developments in the experimental use of autologous adult stem cells to argue for a more inclusive approach to the ethical issues surrounding stem cell research. (shrink)

This book theorises technology and its host of social, material, and epistemic transformation techniques, tools, and methods as indeterminate through sixteen methodologically diverse contributions from media philosophy, art and architectural theory, mathematics, computer science, and anthropology scholars.