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)

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.

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)

Can the theory that reality is a simulation be tested? We investigate this question based on the assumption that if the system performing the simulation is nite (i.e. has limited resources), then to achieve low computational complexity, such a system would, as in a video game, render content (reality) only at the moment that information becomes available for observation by a player and not at the moment of detection by a machine (that would be part of the simulation and whose (...) detection would also be part of the internal computation performed by the Virtual Reality server before rendering content to the player). Guided by this principle we describe conceptual wave/particle duality experiments aimed at testing the simulation theory. (shrink)

Abstract:In this paper, I evaluate the possibility of convergence between animal welfare and environmental ethics. By surveying the most prominent views within each of these respective camps, I argue that animal welfare ethics and ecological theories in environmental ethics are incommensurable in virtue of their respective individualistic and holistic value theories. I conclude by arguing that this conceptual clarification allows us to see that animal welfare ethics can nevertheless be made commensurable with theories in environmental ethics according to which value (...) primarily resides in individuals, rather than in collectives and communities. (shrink)

Robert Kane’s libertarian theory is often attacked on the grounds that undetermined self-forming actions are not amenable to contrastive explanation. I propose that we should understand contrastive explanations in terms of an appeal to structuring causes. Doing so reveals that Kane’s claim that there can be no contrastive explanation for self-forming actions is not an unwanted implication of his appeal to indeterminism, but is actually an implication of the fact that the agent’s will is not yet appropriately structured. I then (...) explain how this can assist Kane with the luck objection. (shrink)

In this essay we will take the American experimental composer John Cage’s understanding of sound as the starting point for an evaluation of that term in the field of sound studies. Drawing together two of the most influential figures in the field, Cage’s thought and work will serve as a lens through which to engage with recent debate concerning the uptake in sound studies of the philosophy of Gilles Deleuze. In so doing we will attempt to develop a path between (...) conflicting sides of sound studies, putting forward an understanding of sound that presents it not as an uninterrogated ontological essence, nor as only a term in a discursive web, but as a problem which must be repeatedly posed anew. We will consider points where this may yet be pushed towards a reified, essentialized understanding of the nature of sound, but move to offset this by emphasizing the production of a practical process of learning and experimentation. (shrink)

The so-called “Levelling Down Objection” is commonly believed to occupy a central role in the debate between egalitarians and prioritarians. Egalitarians think that equality is good in itself, and so they are committed to finding value even in such equality as may only be achieved by “levelling down”–i.e., by merely reducing the better off to the level of the worse off. Although egalitarians might deny that levelling down could ever make for an all-things-considered improvement, they cannot deny that it may (...) make things better in at least one respect. Prioritarians, on the other hand, do deny this; according to them, levelling down cannot make things better in any respect. In this paper I argue that the Levelling Down Objection leans far too heavily on a heretofore unanalysed notion: namely, the notion of “being better in this or that respect.” I propose what I take to be a plausible analysis of that notion, and show that, given the proposed analysis, the prioritarian is no less vulnerable to the Levelling Down Objection than is the egalitarian. I conclude that proponents of the Levelling Down Objection need either to suggest a better analysis or abandon the Levelling Down Objection altogether. (shrink)

This is the first article in a two-part series describing subject and family perspectives from the central thalamic deep brain stimulation for the treatment of traumatic brain injury using the Medtronic PC + S first-in-human invasive neurological device trial to achieve cognitive restoration in moderate to severe traumatic brain injury, with subjects who were deemed capable of providing voluntary informed consent. In this article, we report on interviews conducted prior to surgery wherein we asked participants about their experiences recovering from (...) brain injury and their perspectives on study enrollment and participation. We asked how risks and benefits were weighed, what their expectations and fears were, and how decisions were reached about trial participation. We found that informed consent and enrollment decisions are fraught. Subjects and families were often split, with subjects more focused on putative benefits and families concerned about incremental risk. Both subjects and families viewed brain injury as disruptive to personal identity and relationships. As decisions were made about study enrollment, families struggled with recognizing the re-emergent agency of subjects and ceding decision-making authority to subjects who had previously been dependent upon them for protection and guidance. Subjects and family members reported a hope for the relief of cognitive disabilities, improved quality of life, normalization of interpersonal interactions, and a return to work or school as reasons for study participation, along with altruism and a desire to advance science. Despite these aspirations, both subjects and families appreciated the risks of the intervention and did not suffer from a therapeutic misconception. A second essay to be published in the next issue of Cambridge Quarterly of Healthcare Ethics—Clinical Neuroethics will describe interviews conducted after surgery, the effects of cognitive restoration for subjects, families, and challenges presented to the social structures they will call upon to support them through recovery. This subsequent article will be available online prior to its formal publication in October 2023. (shrink)

The way in which educators choose to engage with learners and to offer opportunities to share knowledge of both the physical world and the world of ideas is an ongoing area of international research interest but remains diffuse and difficult to systematise. This idiosyncratic quality underscores the privileged position of teachers as creative professionals. By exploring Claude Lévi-Strauss’s conception of how and for what purpose we share knowledge within society, this paper explores the relationship between perceptions of teachers’ professional role (...) and the challenges they face working within formal education systems. The artisan quality of teachers’ practice, gained through experience, association and personal commitment, makes possible a visualisation of teacher professionalism as bricolage that, when read alongside theories of teacher agency, generates an affirmative picture of how teacher professionalism may be reframed as creative and responsive rather than homogenous and mechanistic. (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)

David Lewis describes, then attempts to refute, a simple anti-Humean theory of desire he calls ‘Desire as Belief’. Lewis’ critics generally accept that his argument is sound and focus instead on trying to show that its implications are less severe than appearances suggest. In this paper I argue that Lewis’ argument is unsound. I show that it rests on an essential assumption that can be straightforwardly proven false using ideas and principles to which Lewis is himself committed.

Experience the richness of classical literature and philosophy with this insightful analysis of the language used by two of its most famous practitioners: Lucretius and Cicero. Katharine C. Reiley provides a detailed examination of key terms and concepts, shedding new light on the complexity and sophistication of their foundational works. This work has been selected by scholars as being culturally important, and is part of the knowledge base of civilization as we know it. This work is in the "public domain (...) in the United States of America, and possibly other nations. Within the United States, you may freely copy and distribute this work, as no entity (individual or corporate) has a copyright on the body of the work. Scholars believe, and we concur, that this work is important enough to be preserved, reproduced, and made generally available to the public. We appreciate your support of the preservation process, and thank you for being an important part of keeping this knowledge alive and relevant. (shrink)

Keith Lehrer has been publishing on free will and compatiblism since 1960. Our concern here is to present an account of the development on his work on the subject.

This essay examines how C. S. Lewis, in Till We Have Faces, illustrates the Christian’s journey of sanctification through the pre-Christian story of his main character, Orual. She must gain two ‘faces’ in this process that correspond to the two books she writes. First, she must gain the face of self-knowledge through humility. The key components to this face are her memory and the act of writing of her first book, which together create a mirror to reflect her sin back (...) to her. Second, Orual must gain the face of transformation through divine agape love. The humility she learned from her first face now allows her to enter what Lewis describes as the dance of self-giving, which is a crucial element to the second face of transformation in its mortification of Orual’s sin and selfishness. In the second face, Orual gains access to an ‘actual language’ that transcends merely verbal words and involves worshipping the god with her whole being, as do we in being transformed to reflect Christ more clearly. Orual’s writing is a form of this ‘actual language’, and her second book that shares her personal encounter with the god of the mountain reflects to others the beauty of the divine. Similarly, Christians should reflect Jesus with their lives and their art, which are inextricably intertwined because a life lived for Him is the highest form of artwork they can create. (shrink)

Recent epistemology has introduced a new criterion of adequacy for analyses of knowledge: such an analysis, to be adequate, must be compatible with the common view that knowledge is better than true belief. One account which is widely thought to fail this test is reliabilism, according to which, roughly, knowledge is true belief formed by reliable process. Reliabilism fails, so the argument goes, because of the "swamping problem". In brief, provided a belief is true, we do not care whether or (...) not it was formed by a reliable process. The value of reliability is "swamped" by the value of truth: truth combined with reliability is no better than truth alone. This paper approaches these issues from the perspective of decision theory. It argues that the "swamping effect" involves a sort of information-sensitivity that is well modelled decision-theoretically. It then employs this modelling to investigate a strategy, proposed by Goldman and Olsson, for saving reliabilism from the swamp, the so-called "conditional probability solution". It concludes that the strategy is only partially successful. (shrink)

This chapter surveys and critically evaluates all the main arguments both for and against de-extinction. It presents a qualified defence of the claim that conservationists should embrace de-extinction. It ends with a list of do’s and don’ts for conservationist de-extinction projects.

This chapter introduces the two main philosophical questions that are raised by the prospect of extinct species being brought back from the dead—namely, the ‘Authenticity Question’ and the ‘Ethical Question’. It distinguishes different types of de-extinction, and different methods by which de-extinction can be accomplished. Finally, it examines the aims of wildlife conservation with a view to whether they are compatible with de-extinction, or not.

Is the resurrection of an extinct species genuinely possible, or not? Will organisms produced by de-extinction technology be authentic new members of the species that died out, or just convincing fakes? We seek to answer these questions in this chapter. Critics of de-extinction have offered many reasons for thinking that the products of de-extinction will be inauthentic. The bulk of the chapter is taken up with surveying their arguments. We attempt to show that none are convincing. We end the chapter (...) by offering and defending two arguments in favour of the view that authentic de-extinctions are possible. (shrink)

This chapter examines three prime candidates for de-extinction—namely, the aurochs, the woolly mammoth, and the passenger pigeon. It will be about what these animals were like, why people want to resurrect them, and the methods by which their resurrections could be accomplished.

Transitional eras in thought.--Typical eras of transition.--Science and doubt.--The historical spirit and the theory of evolution.--The relation of thought to social movements.--The appeal to faith.--The close of transitional eras.

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)

Come into my office. Usually it is an office of teaching and writing and research. Today the function shifts, as it does periodically throughout the semester. It becomes a space where my students t...

This work has been selected by scholars as being culturally important, and is part of the knowledge base of civilization as we know it. This work is in the "public domain in the United States of America, and possibly other nations. Within the United States, you may freely copy and distribute this work, as no entity (individual or corporate) has a copyright on the body of the work. Scholars believe, and we concur, that this work is important enough to be (...) preserved, reproduced, and made generally available to the public. We appreciate your support of the preservation process, and thank you for being an important part of keeping this knowledge alive and relevant. (shrink)