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)

In 1856, the State of Ohio began an enumeration of its population to count and identify people with disabilities. This paper examines the ethical role of the accounting profession in this project, which supported the transatlantic eugenics movement and its genocidal attempts to eliminate disabled persons from the population. We use a theoretical approach based on Levinas who argued that the self is generated through engagement with the Other, and that this engagement presupposes a responsibility to and for the Other. (...) We show that successive waves of legislation relied on State and County auditors along with Township clerks and assessors to conduct the mechanics of the enumeration of the population, which focused on the identification, categorization, and counting of the disabled people of the State. We argue that the accounting-based technologies of enumeration and reporting objectify the enumerated persons and deny the auditor’s pre-existing ethical obligation to this new Other. We show how the financial expertise and structures of the State were engaged in the execution of this mandate, which remained in place for over a century and supported a program of institutionalization. We consider the ramifications of this for our understanding of the ethical role of public sector accounting in the United States over this period, which has been under-explored. (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)

Inicialmente, o texto indaga sobre o significado do exercício do filósofo social; pretende também localizar as origens do debate moderno sobre ‘subjetividade’ no pensamento filosófico e social. As idéias norteadoras de Kant, se situam na confluência e na disjunção entre razão (conhecimento) e subjetividade (moral). A partir dessa referência, o debate entre alguns pensadores considerados como pós-modernos (Badiou e Zizek), por um lado, e por outro Castoriadis que recusa esta nomenclatura, vão derivando idéias novas sobre ‘sujeito’ e ‘verdade’. Esse debate (...) não é sem conseqüências para a teoria sociológica que assume para si o desafio de introduzir a categoria de ‘sujeito’ em seus cânones (Touraine). As reflexões de Stengers servem também para questionar e aproximar as práticas da produção do conhecimento e dos discursos científicos. Finalmente, restam desafios para se pensar teorias e práticas sócio-ambientais à luz desses conceitos apresentados ao longo do texto. (shrink)

As a 2006 Institute of Medicine report highlights, surprisingly little empirical attention has been paid to how prisoners arrive at decisions to participate in modern research. With our study, we aimed to fill this gap by identifying a more comprehensive range of factors as reported by prisoners themselves during semistructured interviews. Our participants described a diverse range of motives, both favoring and opposing their eventual decision to join. Many are well-recognized considerations among nonincarcerated clinical research participants, including a desire for (...) various forms of personal benefit, altruism, and concern about study risks and inconveniences. However, a number of influences seem unique to prisoners. Participants did not report that they were not coerced into enrolling, and they have even been under pressure not to enroll. However, many sought to enroll in order to obtain access to better health care, raising a concern about whether they were unfairly exploited. (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)

This experimental writing piece by the Earth Unbound Collective explores the ethical, political and pedagogical challenges in addressing climate change, activism and justice. The provocation Earth Unbound: the struggle to breathe and the creative thoughts that follow are inspired by the contagious energy of what Donna Haraway calls response-ability or the ability to respond. This energy ripples through monthly reading groups and workshops organised by this interdisciplinary collective that emerged organically in January 2020.

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)

O livro reúne 19 artigos apresentados no I Simpósio Internacional de Ética e Política (Mestrado em Filosofia da UFG, 1996). Embora demarcado por limites - sejam inerentes à própria reflexão filosófica, sejam contigentes à abordagem conceitual do tema -, o tema da ética na política oferece contribuições para uma ação com o bem comum. Os textos recuperam aspectos da história do pensamento político ocidental, como também dão seguimento a essa história, oferecendo argumentos para a abordagem teórica da ética e da (...) política. (shrink)

In this paper we present an overview of Professor Newton C. A. da Costa’s work in logic, emphasizing the main results obtained by him in the several areas of his research activity. The text furnish a detailed bibliographic reference of his works, which are listed in the last section.

O artigo mostra como se originou a Naturphilosophie , filosofia-da-natureza, de Schelling a partir do seu confronto crítico com a biologia de Kielmeyer, as concepções de natureza de Goethe e sobretudo com a teoria do organismo da Terceira Crítica de Kant.

Book ARAÚJO, João Pedro Gonçalves. Histórias, tradições e pensamentos batistas. São Paulo: Fonte Editorial, 2015. 208p. ISBN 978-85-6825-209-3.

Resenha do livro: REIMER, Haroldo. Liberdade Religiosa na História e nas Constituições do Brasil. São Leopoldo: Oikos, 2013.

Efforts to embed anti-heterosexist curriculum at the Toronto District School Board (TDSB) can become confused and contradictory because of the persistent subjection of the student to the curriculum, and by maintaining sex as a subject of danger and prohibition. Examples from the new TDSB anti-discrimination curriculum resource that were perceived as politically controversial in 2011 are briefly assessed with the popular queer(ed) theories of Foucault (1978/1990), Butler (1990; 1993), and Rubin (1984/1993). Deleuze's (1988) interpretation of Spinoza’s work is also plumbed (...) to explain the consequences of heterosexist discourse in schools. The Deleuzian-Spinozan example of the caricatures of the “moralist trinity” shows that heterosexist discourses promote the production of “sad passions” throughout social relationships by creating “sad” characters within each individual. Finally, anti-heterosexist action in schools is described as modelling consent in curriculum and exposing relationships of subjection. (shrink)

NAVEGAR É PRECISO; VIVER NÃO É PRECISO: A LIBERDADE DE LOCOMOÇÃO NA INTERNET.

A pesquisa demonstra que a nova magia na contemporaneidade se dá por meio da ritualização de programas, que são estruturados com a clara intenção de programar o comportamento idolátrico da sociedade. A partir da teorização de Vilém Flusser examina-se o processo idolátrico das imagens que transforma as pessoas em sombras das imagens, presas ao desejo da imortalidade. O problema reside em saber como o ser humano se ocupará de símbolos, códigos, sistemas e como será sua vida nesse ambiente imaterial. Até (...) que nível a sociedade atual está programada? Os aparelhos vão resolver os problemas, ou seja, eles funcionarão em função da sociedade? Em primeiro lugar, explicita-se a lógica do funcionamento dos aparelhos. Depois, como a ciência se automatizou e transformou o programador em programado: de sujeito a objeto do processo ao transferir ao programa do aparelho todo o seu poder, tornando a sociedade em massa programada, que funciona em função dos aparelhos. O processo de idolatrização está em curso, entretanto o que se percebe é que a humanidade caminha para um totalitarismo programador. (shrink)

O texto tem por objetivo analisar e desenvolver uma crítica filosófica sobre o sistema capitalista globalizado, que atinge a vida de muitos no mundo todo influenciando não apenas o campo econômico, mas a vida concreta das pessoas, tendo como base teórica pensadores da Escola do DEI, Costa Rica. Trata-se de um processo injusto apadrinhado pelas teorias econômicas e pela realidade da escassez dos bens econômicos, que articula dois polos opostos: um que ao mesmo tempo domina, explora e exige sacrifícios, provoca (...) a adesão e fascínio das pessoas através do consumo de mercadorias; e outro cuja fundamentação mítica impõe como legítimo a exigência de sacrifícios humanos. Ao mesmo tempo que fascina e seduz, envolve a sociedade num caráter sacrifical, sedutor e de injustiça social. Assim, é possível destacar que nem o Estado, nem o mercado se apresentam capazes de evoluir para uma sociedade mais humana, justa e democrática. Atualmente a democracia e a justiça econômica amparam, sobretudo, os favorecidos e satisfeitos, cujo modelo prioriza a política do imediatismo da acomodação do pensamento econômico e político, levando a sociedade à regressão social e antropológica. (shrink)

In this paper we aim to discuss a theoretical explanation for the positive relationship between patients’ knowledge and their trust in healthcare personnel. Our approach is based on John Dewey’s notion of continuity. This notion entails that the individual’s experiences are interpreted as interrelated to each other, and that knowledge is related to future experience, not merely a record of the past. Furthermore, we apply Niklas Luhmann’s theory on trust as a way of reducing complexity and enabling action. Anthony Giddens’ (...) description and analysis of the high modern society provides a frame for discussing the preconditions for patient-healthcare personnel interaction. High modernity is dominated by expert systems and demands trust in these. We conclude that patient knowledge and trust in healthcare personnel is related because both knowledge and trust are future- and action-oriented concepts. The traits of high modernity provides opportunities and challenges as the personnel can and must perform discretion. This discretion must be made in a context where knowledge is considered uncertain and preliminary. (shrink)

BackgroundCritical to conducting high quality research is the ability to attract and retain participants, especially for longitudinal studies. Understanding participant experiences and motivators or barriers to participating in clinical research is crucial. There are limited data on healthy participant experiences in longitudinal research, particularly in low- and middle-income countries. This study aims to investigate quantitatively participant experiences in a South African birth cohort study.MethodsMaternal participant experience was evaluated by a self-administered survey in the Drakenstein Child Health Study, a longitudinal birth (...) cohort study investigating the early life determinants of child health. Pregnant mothers, enrolled during the second trimester, were followed through childbirth and the early childhood years. Satisfaction scores were derived from the participant experience survey and quantitatively analyzed; associations between satisfaction scores and sociodemographic variables were then investigated using a linear regression model.ResultsData were included from 585 pregnant mothers, who had participated in the study for a median time of 16 months. Overall participant satisfaction was high and associated with increased attendance of study visits. Reasons for participating were a belief that involvement would improve their health, their child’s health or the health of family and friends. Potential reasons for leaving the study were inconvenience, not receiving clinical or study results, and unexpected changes in study visits or procedures. Variables associated with higher overall satisfaction scores were no prior participation in research, higher socioeconomic status, less intensive follow-up schedules and having experienced stressful life events in the past year.ConclusionsSatisfaction scores were high and associated with increased visit attendance. Participants’ perceived benefits of study participation, most notably the potential for an improvement in the health of their child, were a significant motivator to enroll and remain in the study. The consistent theme of perceived health benefits as a motivator to join and remain in the study raises the question of whether participation in research results in actual improvements in health. (shrink)

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)

This text aims to show that the way of aesthetic knowledge in Schopenhauer functions as a critic to the instrumetnal rationality of the science under the regency of the principle of suffciente reason.O presente texto intenta mostrar que o modo de conhecimento estético em Schopenhauer funciona como um poder de crítica à racionalidade instrumental da ciência regida pelo princípio de razão.

The Legal Knowledge Engineering is a new topic of investigationof Artificial Intelligence. This paper discusses some relevant problems relatedto this new area in a summarized way. Within the Normative Law Theory,one question that arises naturally is that of contradiction, like for example:articles conflicting with other articles inside the same code, codes conflictingwith codes, codes conflicting with jurisprudence, and in general, treatmentswith conflicting propositions in Normative Law Theory. This paper suggeststo treat directly inconsistencies in the Legal Knowledge Engineering; thisengineering has as (...) underlying logic a paraconsistent annotated deontic logic.There are three main approximations in Legal Knowledge Engineering basedon: cases, rules and logic. In this paper, we consider the approximationbased on logic. It is considered a paraconsistent annotated deontic logic.Based on this logic, it is established a new proposal that is called Paraconsistent Legal Knowledge Engineering. For this proposal, it it is suggested ameta-interpreter to support the deontic operators as well as inconsistency —entitled on this paper Paralog D that can be used as a base to handle withthe issues discussed. (shrink)

O presente texto examina a definição de loucura de amor em Schopenhauer para, a partir do exemplo literário da personagem Ofélia do Hamlet de Shakespeare, dado pelo Boddhishatva de Frankfurt, fazer uma conexão com a loucura de amor da personagem Rubião do romance Quincas Borba de Machado de Assis.

Resenha: CRUZ, Eduardo Rodrigues da. Religião e ciência. São Paulo: Paulinas, 2014.