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)

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)

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)

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)

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)

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.

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)

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)

To 'consequentialise' is to take a putatively non-consequentialist moral theory and show that it is actually just another form of consequentialism. Some have speculated that every moral theory can be consequentialised. If this were so, then consequentialism would be empty; it would have no substantive content. As I argue here, however, this is not so. Beginning with the core consequentialist commitment to 'maximising the good', I formulate a precise definition of consequentialism and demonstrate that, given this definition, several sorts of (...) moral theory resist consequentialisation. My strategy is to decompose consequentialism into three conditions, which I call 'agent neutrality', 'no moral dilemmas', and 'dominance', and then to exhibit some moral theories which violate each of these. (shrink)

Should we allow grave harm to befall one individual so as to prevent minor harms befalling sufficiently many other individuals? This is a question of aggregation. Can many small harms ‘add up’, so that, collectively, they morally outweigh a greater harm? The ‘Close Enough View’ supports a moderate position: aggregation is permissible when, and only when, the conflicting harms are sufficiently similar, or ‘close enough’, to each other. This paper surveys a range of formally precise interpretations of this view, and (...) reveals some of the problems they face. It also proposes a novel interpretation which avoids these problems. (shrink)

In Better Never to Have Been, David Benatar argues that existence is always a harm. His argument, in brief, is that this follows from a theory of personal good which we ought to accept because it best explains several ‘asymmetries’. I shall argue here that Benatar's theory suffers from a defect which was already widely known to afflict similar theories, and that the main asymmetry he discusses is better explained in a way which allows that existence is often not a (...) harm. (shrink)

The consequences of stigma are preventable. We argue that individual attention should be provided to patients when dealing with stigma. Also, in order to deal with the impact of stigma on an individual basis, it needs to be assessed during routine clinical examinations, quantified and followed up to observe whether or not treatment can reduce its impact. A patient-centric anti-stigma programme that delivers the above is urgently needed. To this end, this review explores the experiences, treatment barriers and consequences due (...) to stigma. We also offer putative solutions to this problem. (shrink)

I compare two kinds of holism about values: G.E. Moore's 'organic unities', and Jonathan Dancy's 'value holism'. I propose a simple formal model for representing evaluations of parts and wholes. I then define two conditions, additivism and invariabilism, which together imply a third, atomism. Since atomism is absurd, we must reject one of the former two conditions. This is where Moore and Dancy part company: whereas Moore rejects additivism, Dancy rejects invariabilism. I argue that Moore's view is more plausible. Invariabilism (...) ought to be retained because (a) it eliminates the needless multiplication of values inherent in variable evaluations, and (b) it preserves a certain necessary connection between values and reasons, which Dancy himself endorses. (shrink)

Tracing the impact of the 'memory wars' on science and culture, Relational Remembering offers a vigorous philosophical challenge to the contemporary skepticism about memory that is their legacy. Campbell's work provides a close conceptual analysis of the strategies used to challenge women's memories, particularly those meant to provoke a general social alarm about suggestibility. Sue Campbell argues that we cannot come to an adequate understanding of the nature and value of memory through a distorted view of rememberers. The (...) harmful stereotypes of women's passivity and instability that have repopulated discussions of abuse have led many theorists to regard the social dimensions of remembering only negatively, as a threat or contaminant to memory integrity. Such models of memory cannot help us grasp the nature of harms linked to oppression, as these models imply that changed group understandings of the past are incompatible with the integrity of personal memory. Campbell uses the false memory debates to defend a feminist reconceptualization of personal memory as relational, social, and subject to politics. Memory is analyzed as a complex of cognitive abilities and social/narrative activities where one's success or failure as a rememberer is both affected by one's social location and has profound ramifications for one's cultural status as a moral agent. (shrink)

When dealing with the moving worlds of migration among the Persian diaspora in Australia, memories cannot simply be removed to dusty attic boxes to be stored as an archive. Rather, this analysis takes the body and its sensory engagement with the world as a central focus, arguing that memories are crafted, tasted, smelt and touched in everyday temporalities. In the kitchens and lounges of Persian migrant women the lived past refuses to become undone from the countless revolutions of food, talk (...) and domestic activity that are central to the patterning of memory. In this paper, we argue that these intimate practices have references beyond their domestic dimensions, for they point to a worldly movement of life writ domestically small. It is via a sensory network that the spatially and temporally disparate worlds of homeland and new homes are remembered and forgotten, and where miniature worlds call out to the movement of migration. Indo-Pacific Journal of Phenomenology , Volume 7, Edition 2 September 2007. (shrink)

How do reasons combine? How is it that several reasons taken together can have a combined weight which exceeds the weight of any one alone? I propose an answer in mereological terms: reasons combine by composing a further, complex reason of which they are parts. Their combined weight is the weight of their combination. I develop a mereological framework, and use this to investigate some structural views about reasons, the main two being "Atomism" and "Holism". Atomism is the view that (...) atomic reasons are fundamental: all reasons reduce to atomic reasons. Holism is the view that whole reasons are fundamental. I argue for Holism, and against Atomism. I also consider whether reasons might be "context-sensitive". (shrink)

In this scholarly but non-technical book, Campbell elucidates the concept of truth by tracing its history, from the ancient Greek idea that truth is timeless, unchanging, and free from all relativism, through the seventeenth-century crisis which led to the collapse of that idea, and then on through the emergence of historical consciousness to the existentialist, sociological, and linguistic approaches of our own time. He gives a scholarly but vivid and economical exposition of the views of a remarkably wide range (...) of thinkers, always showing how their ideas engage with our contemporary concerns. He argues that current problems with truth arise from the way differing past conceptions continue to resound in our contemporary use of the word, and suggests that we must formulate a new conception of truth that is compatible with awareness that human existence is finite and contingent--with awareness of our own historicity. (shrink)

Should harms to different individuals be aggregated? Moderate views answer yes and no. Aggregation is appropriate in some but not all cases. Such views need to determine a threshold at which aggregation switches from appropriate to inappropriate. Alex Voorhoeve proposes a method for determining this threshold which links other-regarding and self-regarding ethics. This proposal, however, implies a spurious correlation between favoring aggregation and egoism.

Moral conclusions cannot validly be inferred from nonmoral premises – this principle, commonly called “Hume’s law,” presents a conundrum. On one hand, it seems obviously true, and its truth is often simply taken for granted. On the other hand, an ingenious argument by A. N. Prior seems to refute it. My aim here is a resolution. I shall argue, first, that Hume’s law is ambiguous, admitting both a strong and a weak interpretation; second, that the strong interpretation is false, as (...) shown by Prior’s argument; and, third, that the weak interpretation is true. (shrink)

Our concerns fall into three areas: (1) Barsalou fails to make clear what simulators are (vs. what they do); (2) activation of perceptual areas of the brain during thought does not distinguish between the activation's being constitutive of concepts or a mere causal consequence (Barsalou needs the former); and (3) Barsalou's attempt to explain how modal symbols handle abstraction fails.

William James has long been recognized as a central figure in the American philosophic tradition, and his ideas continue to play a significant role in contemporary thinking. Yet there has never been a comprehensive exploration of the thought of this seminal philosopher and psychologist. In Experiencing William James, renowned scholar James Campbell provides the fuller and more complete analysis that James scholarship has long needed. Commentators typically address only pieces of James's thought or aspects of his vision, often in (...) an attempt to make the task of understanding James seem easier than it is or else to dismiss him as a philosophically unprepared if well-meaning amateur. The isolated nature of these examinations, too often divorced from the original contexts, badly hinders and even distorts their conclusions. Focusing on James's own ideas rather than his critiques of others, and drawing from a wealth of scholarship that includes the completed editions of his writings and correspondence, Experiencing William James provides an invaluable, comprehensive view of James as he participates in and advances the pragmatic spirit that is at the core of American philosophy. Taking the whole of the man's thinking into account, this book offers the richest perspective so far on this great but not fully comprehended intellectual. (shrink)

It is often remarked that Iris Murdoch’s thought deeply influenced the landscape of twentieth-century moral philosophy. It is certainly true that she inspired a generation of Anglo-American philosophers who sought to critique the moral philosophy of their day. However, these philosophers drew almost exclusively from her early philosophical thought, most notably The Sovereignty of Good. When it came to Murdoch’s second book, Metaphysics as a Guide to Morals (MGM), moral philosophers and scholars alike found it hard to place within contemporary (...) moral philosophy.Our aim in this paper is to offer a reading of MGM that is resolute in its commitment to do justice to the book’s resistance against domestication within standard moral philosophy, while taking Murdoch at her word when she writes that her “whole argument can be read as moral philosophy” (MGM, 740). This commitment allows us to read MGM as an integrated unity. More importantly, it allows us to reassess Murdoch’s place in twentieth-century philosophy and to propose MGM as one of the works seeking to transform it. Our hope is that our reading will interest any philosopher who feels that something essential is missing in current typical practices in the discipline. (shrink)

It is often remarked that Iris Murdoch’s thought deeply influenced the landscape of twentieth-century moral philosophy. It is certainly true that she inspired a generation of Anglo-American philosophers who sought to critique the moral philosophy of their day. However, these philosophers drew almost exclusively from her early philosophical thought, most notably The Sovereignty of Good. When it came to Murdoch’s second book, Metaphysics as a Guide to Morals (MGM), moral philosophers and scholars alike found it hard to place within contemporary (...) moral philosophy.Our aim in this paper is to offer a reading of MGM that is resolute in its commitment to do justice to the book’s resistance against domestication within standard moral philosophy, while taking Murdoch at her word when she writes that her “whole argument can be read as moral philosophy” (MGM, 740). This commitment allows us to read MGM as an integrated unity. More importantly, it allows us to reassess Murdoch’s place in twentieth-century philosophy and to propose MGM as one of the works seeking to transform it. Our hope is that our reading will interest any philosopher who feels that something essential is missing in current typical practices in the discipline. (shrink)

Campbell came to the Klamath marshes, a wetland in southern Oregon formed by three ancient, shallow lakes, a vast emptiness that is paradoxically home to an amazing diversity of life, of untold thousands of birds both migratory and resident, of all the interconnected life forms that make up one of North America's richest natural environments.".

Following the socialist revolution, a colossal shift in everyday realities began in the 1920s and '30s in the former Russian empire. Faced with the Siberian North, a vast territory considered culturally and technologically backward by the revolutionary government, the Soviets confidently undertook the project of reshaping the ordinary lives of the indigenous peoples in order to fold them into the Soviet state. In Agitating Images, Craig Campbell draws a rich and unsettling cultural portrait of the encounter between indigenous Siberians (...) and Russian communists and reveals how photographs from this period complicate our understanding of this history. Agitating Images provides a glimpse into the first moments of cultural engineering in remote areas of Soviet Siberia. The territories were perceived by outsiders to be on the margins of civilization, replete with shamanic rituals and inhabited by exiles, criminals, and "primitive" indigenous peoples. The Soviets hoped to permanently transform the mythologized landscape by establishing socialist utopian developments designed to incorporate minority cultures into the communist state. This book delves deep into photographic archives from these Soviet programs, but rather than using the photographs to complement an official history, Campbell presents them as anti-illustrations, or intrusions, that confound simple narratives of Soviet bureaucracy and power. Meant to agitate, these images offer critiques that cannot be explained in text alone and, in turn, put into question the nature of photographs as historical artifacts. An innovative approach to challenging historical interpretation, Agitating Images demonstrates how photographs go against accepted premises of Soviet Siberia. All photographs, Campbell argues, communicate in unique ways that present new and even contrary possibilities to the text they illustrate. Ultimately, Agitating Images dissects our very understanding of the production of historical knowledge. (shrink)

Using Lacanian psychoanalysis as a starting point, Campbell examines contemporary feminism's turn to accounts of feminist 'knowing' to create new conceptions of the political.

Resource Allocation Mechanisms derives the general welfare properties of systems in which individuals are motivated by self-interest. Satisfactory outcomes will emerge only if individual incentives are harnessed by means of a communication and payoff process, or mechanism, involving every agent. Professor Campbell employs a formal and abstract model of a mechanism that brings into prominence the criteria by which the performance of an economy is to be judged. The mechanism approach is used to prove some fundamental theorems about the (...) possibility of designing an economic system satisfying the criteria. It also establishes a way of thinking about economic issues that is becoming increasingly useful in special branches of economics, such as industrial organization and public finance. This book can be viewed as two different texts: one constitutes an introduction to the theory of mechanism design and the other is a treatment of welfare economics with conventional emphasis on Pareto optimality as well as providing substantial material on incentives, uncertainty, and existence of equilibrium. (shrink)