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)

In their paper “Research approvals iceberg: how a ‘low-key’ study in England needed 89 professionals to approve it and how we can do better” Petrova and Barclay highlight concerns with the health research regulatory environment in the UK. As long-standing chairs of NHS research ethics committees, researchers, and also academics in research ethics, we are also often frustrated with the regulatory process in the UK. However, we think that Petrova and Barclay’s analysis is misleading because it conflates research ethics with (...) governance and funding processes, thus failing to adequately distinguish between the national coordinating function of the Health Research Authority, local research governance processes, and interactions with research sponsors and/or the Clinical Research Network. (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)

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)

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)

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)

Re-Visioning "Kamakura" Buddhism. Edited by Richard K. Payne., University of Hawai'i Press, Honolulu 1998. vii, 280 pp. Pb, $24.95. ISBN 0-8248-2078-9;.

Are humans rational? Various experiments performed over the last several decades have been interpreted as showing that humans are irrational we make significant and consistent errors in logical reasoning, probabilistic reasoning, similarity judgements, and risk-assessment, to name a few areas. But can these experiments establish human irrationality, or is it a conceptual truth that humans must be rational, as various philosophers have argued? In this book, Edward Stein offers a clear critical account of this debate about rationality in philosophy (...) and cognitive science. He discusses concepts of rationality - the pictures of rationality that the debate centres on - and assesses the empirical evidence used to argue that humans are irrational. He concludes that the question of human rationality must be answered not conceptually but empirically, using the full resources of an advanced cognitive science. Furthermore, he extends this conclusion to argue that empirical considerations are also relevant to the theory of knowedge - in other words, that epistemology should be naturalized. from the reviews: 'Stein has done a great service in bringing together all of the important arguments in the human rationality debate and providing a measured critical assessment of them.... This will be an important book and is essential reading for epistemologists, philosophers of mind, and cognitive and evolutionary psychologists.' Choice 'very considerable value... for professionals' Times Higher Education Supplement. (shrink)

Stigma against mental disability within the medical field continues to impose significant barriers on physicians and trainees. Here, we examine several implications of this stigma and propose steps toward greater inclusion of persons with mental disabilities in the physician workforce.

Successful clinical trials are important for all of us, but they can be extremely complicated to design and run, so work must be done to consider what commonly goes wrong and how these issues can be addressed. Gelinas et al suggest an ethical argument for institutional prioritisation of clinical trials conducted among limited populations. This is to ensure successful recruitment and prevent competing trials rendering each other irrelevant through lack of statistical power. But they overlook the fact that effective prioritisation (...) already occurs, and their suggestion produces yet another hurdle for researchers to overcome. Their argument hinges around the claim that allocation of participants to trials represents an inevitable rationing scenario and, like all rationing scenarios, the best methods should be used for objectively determining how limited resources are distributed to achieve the end goal.1 Although they acknowledge that both individuals and clinicians may have preferences as to which trial a patient participates in, trial interventions are by definition experimental, and therefore choosing between trials is not really analogous to choosing between alternative clinical interventions. Here it seems that although clinical instinct is important when determining treatment options, a clinical trial is a specific attempt to create systematic justified knowledge and thus individual patient/clinician autonomy …. (shrink)

Exploring the current clash between the prevailing conceptions of heritage as, on the one hand, something valued and thus worth saving and, on the other, a haunting and unwanted legacy, this book urges a radical reconsideration of our understanding of heritage in line with the notion of an unruly legacy. The fundamental argument is based on a less anthropocentric and more ecologically focussed perspective, where case studies are presented on the following countries: Canada, Iceland, Japan, Norway, Poland, Sweden and the (...) United States. (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)

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)

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)

This study investigated the applicability of a novel instrument to assess parent–child attunement in free play interactions, in dyads with an infant with and without visual impairments. We here report the findings on the reliability and applicability of the newly developed Attune & Stimulate Mother–Infant 56-items Instrument in two separate samples: one with infants with VI and one with typically sighted infants. In addition, we assessed the contribution of parental sensitivity to attunement in dyadic interactions. The A&S M-I is an (...) observational comprehensive instrument of behaviors that captures different body parts and their motility, and different senses. The appropriate responding of a parent to the child’s signal reflects the ability to attune in the dyad as well as parent’s ability to stimulate the child to become engaged in the contact or activity. Consistency assessments revealed good reliability for maternal and infant behaviors, acceptable internal consistency and good test–retest reliability. Furthermore, both samples scored significantly above chance level on attunement, suggesting that the instrument captures parent–infant behavioral coordination, and VI was not related to parent–infant attunement. Lastly, a relation between parental sensitivity and attunement was found only in the TS sample. Altogether, these findings provide promising initial evidence of the applicability of the A&S M-I instrument for assessing dyadic attunement across different populations and ages. Having assessed the applicability of this observational instrument, future work should corroborate these findings in larger samples. (shrink)

Originally published: New York: Random House, 1972.

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)

Journal of Philosophy of Education, Volume 56, Issue 2, Page 227-237, April 2022.

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.

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)

It has been repeatedly argued, most recently by Nicholas Maxwell, that the special theory of relativity is incompatible with the view that the future is in some degree undetermined; and Maxwell contends that this is a reason to reject that theory. In the present paper, an analysis is offered of the notion of indeterminateness (or "becoming") that is uniquely appropriate to the special theory of relativity, in the light of a set of natural conditions upon such a notion; and reasons (...) are given for regarding this conception as (not just formally consistent with relativity theory, but also) philosophically reasonable. The bearings upon Maxwell's program for quantum theory are briefly considered. (shrink)

Children as learners need adults who love them, even when the children are unable to give anything in return. Furthermore, adults should be able to make wise judgements concerning what is good for the children. The clarification of these principles and of their educational import has to start within our own cultural tradition. Agape (unconditional love, neighbour-love or charity) is a basic concept in the Christian tradition. Phronesis (moral wisdom, practical judgement or prudence) has a key position in the Aristotelian (...) tradition. In his Summa TheologiaeThomas Aquinas has combined these traditions and ethical concepts, with agape (in Latin caritas) as the commanding concept. The article will explore some key challenges and productive resources revealed by this combination for today's education and upbringing. (shrink)

Background The review of human participant research by Research Ethics Committees or Institutional Review Boards is a complex multi-faceted process that cannot be reduced to an algorithm. However, this does not give RECs/ IRBs permission to be inconsistent in their specific requirements to researchers or in their final opinions. In England the Health Research Authority coordinates 67 committees, and has adopted a consistency improvement plan including a process called “Shared Ethical Debate” where multiple committees review the same project. Committee reviews (...) are compared for consistency by analysing the resulting minutes. Methods We present a description of the ShED process. We report an analysis of minutes created by research ethics committees participating in two ShED exercises, and compare them to minutes produced in a published “mystery shopper” exercise. We propose a consistency score by defining top themes for each exercise, and calculating the ratio between top themes and total themes identified by each committee for each ShED exercise. Results Our analysis highlights qualitative differences between the ShED 19, ShED 20 and “mystery shopper” exercises. The quantitative measure of consistency showed only one committee across the three exercises with more than half its total themes as top themes. The average consistency scores for the three exercises were 0.23, 0.35 and 0.32. There is a statistically significant difference between the ShED 19 exercise, and the ShED 20 and mystery shopper exercises. Conclusions ShED exercises are effective in identifying inconsistency between ethics committees and we describe a scoring method that could be used to quantify this. However, whilst a level of inconsistency is probably inevitable in research ethics committee reviews, studies must move beyond the ShED methodology to understand why inconsistency occurs, and what an acceptable level of inconsistency might be. (shrink)

The risky investment game of Gneezy and Potters :631–645, 1997) has been proposed as a simple tool to measure risk aversion in applied settings, especially attractive in settings where participants may have limited education. However, this game can produce a significant endowment effect, so that analysis of the behavior in this game should not be done in the Expected Utility Theory framework. The paper illustrates this point, by showing that risk tolerance can be much higher when the initial endowment concerns (...) a risky lottery. (shrink)

Including empirical examples and theoretical clarifications on many of the analytical issues raised in his recently published Down to Earth, this conversation with Bruno Latour and his collaborator, Danish sociologist Nikolaj Schultz, offers key insights into Latour’s recent and ongoing work. Revolving around questions on political ecology and social theory in our ‘New Climatic Regime’, Latour argues that in order to have politics you need a land and you need a people. This interview present reflections on such politics, such land (...) and such people, and it ends with a call for a sociology that takes up the task of connecting the three by investigating what he and Schultz call ‘geo-social classes’. The interview was conducted by Jakob Stein in Paris in November 2018. (shrink)

Valid consent requires the potential research participant understands the information provided. We examined current practice in 50 proposed Clinical Trials of Investigational Medicinal Products to determine how this understanding is checked. The majority of the proposals ( n = 44) indicated confirmation of understanding would take place during an interactive conversation between the researcher and potential participant, containing questions to assess and establish understanding. Yet up until now, research design and review have not focussed upon this, concentrating more on written (...) material. We propose ways this interactive conversation can be documented, and the process of checking understanding improved. (shrink)

In this article, we address the limitations of sustainable development as an orienting educational horizon of hope and change, given that mainstream development presumes the possibility of perpetual growth and consumption on a finite planet. Facing these limitations requires us to consider the inherently violent and unsustainable nature of our modern-colonial modes of existence. Thus, we propose a shift from “education for sustainable development” to “education for the end of the world as we know it.” We contend that the predicament (...) we face is not primarily rooted in ignorance and thus solvable with more knowledge, nor primarily rooted in immorality and thus solvable with more normative values; rather, it is rooted in denials that stem from harmful desires for and investments in the continuity of the securities and satisfactions promised by modernity-coloniality. Faced with these denials, we emphasize a collective need to “grow up” so that we might “show up” differently to do the work that is needed as we face unprecedented global challenges. (shrink)