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)

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)

Psychiatric disorders present distinct clinical challenges which are partly attributable to their multifactorial aetiology and the absence of laboratory tests that can be used to confirm diagnosis or predict risk. Psychiatric disorders are highly heritable, but also polygenic, with genetic risk conferred by interactions between thousands of variants of small effect that can be summarized in a polygenic risk score. We discuss four areas in which the use of polygenic risk scores in psychiatric research and clinical contexts could have ethical (...) implications. First, there is concern that clinical use of polygenic risk scores may exacerbate existing health inequities. Second, research findings regarding polygenic risk could be misinterpreted in stigmatising or discriminatory ways. Third, there are concerns associated with testing minors as well as eugenics concerns elicited by prenatal polygenic risk testing. Fourth, potential challenges that could arise with the feedback and interpretation of high polygenic risk for a psychiatric disorder would require consideration. While there would be extensive overlap with the challenges of feeding back genetic findings in general, the potential clinical use of polygenic risk scoring warrants discussion in its own right, given the recency of this possibility. To this end, we discuss how lay interpretations of risk and genetic information could intersect. Consideration of these factors would be necessary for ensuring effective and constructive communication and interpretation of polygenic risk information which, in turn, could have implications for the uptake of any therapeutic recommendations. Recent advances in polygenic risk scoring have major implications for its clinical potential, however, care should be taken to ensure that communication of polygenic risk does not feed into problematic assumptions regarding mental disorders or support reductive interpretations. (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)

Dispositional forgiveness is positively associated with many facets of wellbeing and has protective implications against depression and anxiety in adolescents. However, little work has been done to examine neurobiological aspects of forgiveness as they relate to clinical symptoms. In order to better understand the neural mechanisms supporting the protective role of forgiveness in adolescents, the current study examined the middle frontal gyrus, which comprises the majority of the dorsolateral prefrontal cortex and is associated with cognitive regulation, and its relationship to (...) forgiveness and clinical symptoms in a sample of healthy adolescents. In this cross-sectional study, larger MFG volume was significantly associated with higher self-reported dispositional forgiveness scores and lower levels of depressive and anxiety symptoms. Forgiveness mediated the relationship between MFG volume and both depressive and anxiety symptom levels. The mediating role of forgiveness in the relationship between MFG volume and clinical symptoms suggests that one way that cognitive regulation strategies supported by this brain region may improve adolescent mental health is via increasing a capacity for forgiveness. The present study highlights the relevance of forgiveness to neurobiology and their relevance to emotional health in adolescents. Future longitudinal studies should focus on the predictive quality of the relationship between forgiveness, brain volume and clinical symptoms and the effects of forgiveness interventions on these relationships. (shrink)

Em intervalos frequentes ao longo dos anos, o professor Chomsky vituperou tanto contra noções do senso comum quanto contra noções técnicas de linguagem pública ou “linguagem externalizada”, afirmando que elas são confusas, mal definidas ou desprovidas de qualquer interesse científico. Como cientista, ele somente estaria interessado na linguagem pública se ela fosse um “objeto real do mundo real” (Chomsky, 1993, p. 39), e não uma noção “artificial” e “arbitrária” (Chomsky, 1985, p. 26). Proponho articular tal noção de linguagem pública para (...) ele. Chomsky também condena a noção que de o propósito da linguagem é a comunicação. Sustentarei, ao contrário, que uma função primária da faculdade humana da linguagem é apoiar convenções linguísticas, e que estas têm uma função essencialmente comunicativa. (shrink)

Preparing the Next Generation of Oral Historians is an invaluable resource to educators seeking to bring history alive for students at all levels. Filled with insightful reflections on teaching oral history, it offers practical suggestions for educators seeking to create curricula, engage students, gather community support, and meet educational standards. By the close of the book, readers will be able to successfully incorporate oral history projects in their own classrooms.

Recent experimental work suggests that the concept of contextual fields should be generalized to allow the modulation of local information extraction by both external and internal context. The external context relates to the coherent information of the stimulus; the internal context refers to the parts of this information which are relevant for behavior. This dual interaction, present at every level of the hierarchy, requires a fundamental unit of processing more complex than a single neuron appears today. We argue that the (...) cortical column supplies the required mechanisms for a separate top-down and bottom-up processing and allows for interaction without destructive cross-talk. This flexibility might explain why the same basic architecture of a cortical column is used in the whole isocortex. (shrink)

A target question for the scientific study of consciousness is how dimensions of consciousness, such as the ability to feel pain and pleasure or reflect on one’s own experience, vary in different states and animal species. Considering the tight link between consciousness and moral status, answers to these questions have implications for law and ethics. Here we point out that given this link, the scientific community studying consciousness may face implicit pressure to carry out certain research programs or interpret results (...) in ways that justify current norms rather than challenge them. We show that because consciousness largely determines moral status, the use of nonhuman animals in the scientific study of consciousness introduces a direct conflict between scientific relevance and ethics—the more scientifically valuable an animal model is for studying consciousness, the more difficult it becomes to ethically justify compromises to its well-being for consciousness research. Finally, in light of these considerations, we call for a discussion of the immediate ethical corollaries of the body of knowledge that has accumulated and for a more explicit consideration of the role of ideology and ethics in the scientific study of consciousness. (shrink)

The exact process that leads to the eruption of autoimmune reactions against β cells and the evolution of diabetes is not fully understood. Macrophages and T cells may launch an initial immune reaction against the pancreatic islets of Langerhans, provoking inflammation and destructive insulitis. The information on the molecular mechanisms of the emergence of β cell injury is controversial and points to possibly important roles for the perforin–granzyme, Fas–Fas-ligand (FasL) and tumor-necrosis-factor-mediated apoptotic pathways. FasL has several unique features that make (...) it a potentially ideal immunomodulatory tool. Most important, FasL is selectively toxic to cytotoxic T cells and less harmful to regulatory T cells. This review discusses the intrinsic sensitivity of β cells to FasL-mediated apoptosis, the conditions that underlie this β cell sensitivity, and the feasibility of using FasL to arrest autoimmunity and prevent islet allograft rejection. In both the autoimmune and transplant settings, it is imperative to progress from the administration of nonspecific immunosuppressive therapy to the concept of β-cell-specific immunomodulation. FasL evolves as a prime candidate for antigen-specific immunomodulation. BioEssays 28: 211–222, 2006. © 2006 Wiley periodicals, Inc. (shrink)

I argue that activists have co-opted street art as a tool for addressing epistemic injustices, injustices that result from negative identity prejudices that silence certain groups of people unfairly. To defend this claim, I explore the special nature of street art that makes it an especially appropriate tool for activists to enlist in the fight against epistemic injustices. From there, I will examine in detail two case studies which illustrate how street art is used to respond to and correct for (...) these injustices: first, the street art series, “Stop Telling Women to Smile” by Tatyana Fazlalizadeh, and then Chris Metzger’s Inside Out Project in Baltimore. Drawing on these examples, I highlight the features in virtue of which street art constitutes a particularly effective tool for correcting epistemic injustices. (shrink)

This article aims to enhance social technology as a resource that induces education and well-being in maternal and child health, more specifically in contexts of social vulnerability. This is an action research, with social technology characteristics, developed between July/2022 and December/2023, with 17 women (pregnant and postpartum women) from a vulnerable community in the central region of Rio Grande do Sul. Based on education in health and in an interprofessional approach, the social technology developed and called “Endowing lives” is the (...) result of demands previously identified, discussed and implemented with the research participants and local health professionals. The social technology developed expanded interprofessional possibilities, promoted preventive health measures and contributed to the empowerment of pregnant and postpartum women in decision-making. (shrink)

In this article, I explore the relationship between witness-bearing arts as a form of creative activism designed to respond to social injustices. In the first section, I present some common features of bearing witness, as conceptualized within media studies and journalism. Then I explain how artworks placed in the streets can bear witness in a similar way. I argue that witness-bearing art transmits knowledge about certain unjust and harmful events, which then places a moral burden or responsibility on the viewer. (...) To defend this view, I offer some examples of activist art that bears witness to certain events. I suggest that witness-bearing art is placed in the streets in order to make certain truths publicly available, by offering evidence of them embedded in the artwork. The final section considers why the bearing witness is especially effective for activist art. Witness-bearing art plays a crucial knowledge-transmitting function, one which enables art to engage in creative activism. I conclude by considering how witness-bearing art offers a powerful and persuasive voice for the oppressed. (shrink)

Street art has exploded: it pervades our back alleys, surrounds us at bus-stops, covers billboards, competes with advertising and generally serves as urban wallpaper in most cities. But what is street art? A far cry from mere graffiti, street art has gained some social acceptance, but it remains neither officially sanctioned like public art, nor institutionally condoned, like its more traditional artistic cousins in museums. Somewhere in between these two extremes, street art has emerged, occupying a metaphysically suspect grey area (...) between illegal activity and bona fide art. This paper explores the nature of this emerging art form and draws out some of the differences between street art, public art and ‘mere’ graffiti. (shrink)

This study assesses the extent to which job application forms violate the New Zealand Human Rights Act. The sample for the study includes 229 job application forms, collected from a variety of large and small, public- and private-sector organizations that together employ approximately 200,000 workers. Two hundred and four or 88% of the job application forms contain at least one violation of the Act. One hundred and sixty five or 72% contain two or more and 140 or 61% contain three (...) or more violations. The most common violations concern age, gender, nationality, and disability. The least common concern political opinion, ethical belief, religious belief, and sexual orientation. Despite widespread violations, many forms do have non-discriminatory questions that yield the same kind of useful information as discriminatory questions. Employers could incorporate these into their job application forms to bring themselves into compliance with the law. The same lessons also generally apply to North American employers, given the high degree of comparability between American, Canadian, and New Zealand anti-discrimination laws. (shrink)

The basic assumption present in these articles is that naturalism is highly compatible with a wide range of relevant philosophical questions and that, regardless of the classical problems faced by the naturalist, the price paid in endorsing naturalism is lower than that paid by essentialist or supernaturalist theories. Yet, the reader will find a variety of approaches, from naturalism in Moral Philosophy and Epistemology to naturalism in the Philosophy of Language, Philosophy of Mind and of the Aesthetics.

Lowering the standard of care in a pandemic is a recipe for inferior care and discrimination. Wealthy white patients will continue to get “standard of care” medicine, while the poor and racial mino...

As healthcare providers engage in the politics of reforming and humanizing our immigration and asylum “system” it is critical that they are able to refer their patients whose health is directly impacted by our immigration laws and policies to experts who can help them navigate the system and obtain the healthcare they need.

As recent elections in Iran and Iraq have shown, the increasing diversity of religious practices around the world may redefine democracy as we know it—leaving many of us to wonder just how compatible religion and democracy really are. _The Pluralist Paradigm _explores this difficult question with essays from a variety of disciplines, including theology, philosophy, political science, sociology, and ethics. It will be an ideal reference for anyone concerned with fostering tolerance in a progressively global society.

Debates about the role of the university in a democratic society have been constant throughout history; but current discussions seem to be of a different order for several reasons. First, universit...

Providing a broad base of essential knowledge critical to undergraduate students, Situating Feminism will also inspire new directions in critical thought and theoretical advancement for academics and professionals in the areas of women's and culture studies, political science, social work, communication, sociology, and psychology.

In Back to the Dance Itself, Sondra Fraleigh edits essays that illuminate how scholars apply a range of phenomenologies to explore questions of dance and the world; performing life and language; body and place; and self-knowing in performance. Some authors delve into theoretical perspectives, while others relate personal experiences and reflections that reveal fascinating insights arising from practice. Collectively, authors give particular consideration to the interactive lifeworld of making and doing that motivates performance. Their texts and photographs study body (...) and the environing world through points of convergence, as correlates in elemental and constant interchange modeled vividly in dance. Selected essays on eco-phenomenology and feminism extend this view to the importance of connections with, and caring for, all life. Contributors: Karen Barbour, Christine Bellerose, Robert Bingham, Kara Bond, Hillel Braude, Sondra Fraleigh, Kimerer LaMothe, Joanna McNamara, Vida Midgelow, Ami Shulman, and Amanda Williamson. (shrink)

Many works are attributed to artists after their death, even when someone else has contributed substantively to the content of the work or when the work left by the artist is deemed incomplete by any standard of completion. Call these works posthumous works.1 Consider, for instance, Garden of Eden, Mysterious Stranger, Silmarillion, Symphony No. 10, Symphony No. 7, Sagrada Familia, the film A.I., Woyzeck, to name just a few. These are examples where..

Edith Stein comes alive through these warm, totally attentive letters. She joins a deeply sensitive heart with her keen intelligence, revealing herself to be a wise mentor and a caring friend available to anyone who approached her. Here we learn what was truly important to her: the total well-being of those who treasured her letters enough to preserve them even while suffering the havoc of war and oppression. This volume offers the first English translation of the majority of her (...) surviving letters, with 4 photos and a fully linked index of recipients. (shrink)