ABSTRACT Objective: To identify perceived barriers to capacity building for local research ethics oversight in El Salvador, and to set an agenda for international collaborative capacity building. Methods: Focus groups were formed in El Salvador which included 17 local clinical investigators and members of newly formed research ethics committees. Information about the proposed research was presented to participants during an international bioethics colloquium sponsored and organized by the St. Jude Children's Research Hospital in collaboration with the National Ethics Committee of (...) El Salvador and the University of El Salvador. Interviews with the focus group participants were qualitatively analyzed. Results: Participants expressed the need to tailor the informed consent process and documentation to the local culture; for example, allowing family members to participate in decision‐making, and employing shorter consent forms. Participants indicated that economic barriers often impede efforts in local capacity building. Participants valued international collaboration for mutual capacity building in research ethics oversight. Conclusions: Research ethics committees in El Salvador possess a basic knowledge of locally relevant ethical principles, though they need more training to optimize the application of bioethical principles and models to their particular contexts. Challenges increase the value of collaborative exchanges with ethics committee members in the United States. Further research on facilitating communication between host country and sponsor country ethics committees can maximize local research ethics expertise, and thus raise the standard of protecting human participants involved in international research. (shrink)

Some have characterized patients living with intractable pain as a vulnerable population in both clinical and research settings. Labeling the population as vulnerable, however, does not provide clarity regarding the potential risks that they face when they participate in research. Instead, research vulnerability for patients in pain is a function of an interaction between their pain conditions and elements of the research enterprise. Therefore, the identification of potential risks requires consideration not only of characteristics of patients with chronic pain, but (...) also consideration of features of researchers, the quality of institutional oversight, and the medical/social environment within which the research is conducted. This paper provides an analysis of those risks and provides some suggestions as to how the risks might be better managed. (shrink)

The concept of vulnerability has been the topic of considerable discussion in research bioethics, largely because of dissatisfaction with early constructions of the concept that were based on subpopulations of research subjects. These subpopulations have attributes likely to undermine their capacity to provide autonomous informed consent: persons who are relatively or absolutely incapable of protecting their own interests through negotiations for informed consent. Several subpopulations were seen as requiring special protections, including children, pregnant women, prisoners, racial minorities, the economically disadvantaged, (...) the very sick, and the institutionalized. Recent years have witnessed the identification of other subpopulations with attributes that could render them vulnerable, as well. For example, the Council for the International Organization of Medical Societies has named such potentially vulnerable groups as the homeless, nursing home residents, patients with incurable diseases, patients in the emergency department, employees, students, and members of communities who are unfamiliar with modern medicine. (shrink)

This is a good time for determinists. One hundred and fifty years of Darwinian thought have undermined belief in the exceptional status of human beings. Biological reductionism is in the ascendant. One of its most recent manifestations—evolutionary psychology, which has been widely influential both within and beyond academe—argues that individual behaviour and even social institutions are expressions of genes, the vast majority of which are common to humans and the higher primates. The implicit, largely unconscious, principles that inform gene-determined human (...) behaviour are rooted in their survival value; and the entity whose survival is served is not the conscious organism but the genome itself. Since the actual reasons for our actions are beyond our ken, they are not truly voluntary. Yet more radical attacks on the notion of human freedom have come from neuroscience: ever more sophisticated and seemingly complete accounts of the human mind in terms of the functioning of our brains, appear to embed even higher level awareness in the material world. (shrink)

This is a good time for determinists. One hundred and fifty years of Darwinian thought have undermined belief in the exceptional status of human beings. Biological reductionism is in the ascendant. One of its most recent manifestations—evolutionary psychology, which has been widely influential both within and beyond academe—argues that individual behaviour and even social institutions are expressions of genes, the vast majority of which are common to humans and the higher primates. The implicit, largely unconscious, principles that inform gene-determined human (...) behaviour are rooted in their survival value; and the entity whose survival is served is not the conscious organism but the genome itself. Since the actual reasons for our actions are beyond our ken, they are not truly voluntary. Yet more radical attacks on the notion of human freedom have come from neuroscience: ever more sophisticated and seemingly complete accounts of the human mind in terms of the functioning of our brains, appear to embed even higher level awareness in the material world. (shrink)

This book details the results of the authors' research using laboratory animals to investigate individual choice theory in economics-consumer-demand and labour supply behaviour and choice under uncertainty. The use of laboratory animals provides the opportunity to conduct controlled experiments involving precise and demanding tests of economic theory with rewards and punishments of real consequence. Economic models are compared to psychological and biological choice models along with the results of experiments testing between these competing explanations. Results of animal experiments are used (...) to address questions of social policy importance. (shrink)

Most Americans today view mines as little more than ugly scars on the landscape, places with no connection to an American way of life. This creative new work will force many to rethink that impression: after an introduction to the history of mining in America, the authors present eight visual and historical essays about diverse sites across the nation, each of which reveals mines not simply as physical degradations but as evolving cultural artifacts of the American landscape.

Many critics seem to consider it inappropriate or unnecessary to ask what Montaigne means by the faculty of judgment. Laumonier speaks of "Ie bon sens, qu'il oppose si souvent a la memoire et qu'il appelle encore 'jugement' et 'entendement', c'est-a-dire la faculte de penser et de reflechir juste. " 1 Our appreciation of what is implied by judgment, that is by Montaigne's notion of judgment, has been delayed perhaps by a too facile acceptance of a so-called synonymity of meaning among (...) the psychological terms used by Montaigne. In a discussion of key concepts in Montaigne, Donald M. Frame has accurately summarized the present situation with regard to our knowledge of Montaigne's notion of judgment and other key concepts: "We all have our hunches, but we need more than that. " 2 For the expression of his interest and concern for the intellectual and moral activities and capabilities of the mind, Montaigne draws upon a broad and elementary semantic field. These primary psychological terms are jugement, entendement, sens, raison, discours, and conscience. Al­ though these words may be used synonymously, Montaigne does seem to maintain certain basic distinctions among them; frequent substi­ tutions of terms must be the result of semantic and ideational differ­ ences. Moreover, the association of several psychological words within a single sentence implies gradations, however slight they may be. (shrink)

Objective: The present study examines the validity of 11 new Holtzman Inkblot Technique indices. These were chosen from Exner’s Comprehensive System indices using two criteria: first, they had to be valid according to meta-analysis, and second, they must be computed using the HIT standard scoring system.Methods: Both techniques were administrated with a retest interval from 1 to 7days to a sample of 139 subjects from the general population. The validity of the new indices was studied through Pearson correlation with the (...) corresponding RCS indices.Results: Nine of the 11 new indices showed significant correlations with Rorschach scales, confirming our hypotheses. The correlation ranged from a minimum of 0.144 to a maximum of 0.414.Conclusions: The results provide support for the validity of the new HIT indices and have important implications for both clinical and research fields. (shrink)

In this paper, we report on the development and validity of the Professional Decision-Making in Research measure, a vignette-based test that examines decision-making strategies used by investigators when confronted with challenging situations in the context of empirical research. The PDR was administered online with a battery of validity measures to a group of NIH-funded researchers and research trainees who were diverse in terms of age, years of experience, types of research, and race. The PDR demonstrated adequate reliability and parallel form (...) correlation. As hypothesized, the PDR was significantly negatively correlated with narcissism, cynicism, moral disengagement, and compliance disengagement; it was not correlated with socially desirable responding. In regression analysis, the strongest predictors of higher PDR scores were low compliance disengagement, speaking English as a native language, conducting clinical research with human subjects, and low levels of narcissism. Given that the PDR was written at an eighth grade reading level to be suitable for use with English as a second language participants and that only one-fourth of items focused on clinical research, further research into the possible roles of culture and research ethics training across specialties is warranted. This initial validity study demonstrates the potential usefulness of the PDR as an educational outcome assessment measure and a research instrument for studies on professionalism and integrity in research. (shrink)

In this article, we present results from a literature review of intrinsic, instrumental, and relational values of nature conducted for the Intergovernmental Science-Policy Platform on Biodiversity and Ecosystem Services, as part of the Methodological Assessment of the Diverse Values and Valuations of Nature. We identify the most frequently recurring meanings in the heterogeneous use of different value types and their association with worldviews and other key concepts. From frequent uses, we determine a core meaning for each value type, which is (...) sufficiently inclusive to serve as an umbrella over different understandings in the literature and specific enough to help highlight its difference from the other types of values. Finally, we discuss convergences, overlapping areas, and fuzzy boundaries between different value types to facilitate dialogue, reduce misunderstandings, and improve the methods for valuation of nature's contributions to people, including ecosystem services, to inform policy and direct future research. © 2023 The Author(s). Published by Oxford University Press on behalf of the American Institute of Biological Sciences. (shrink)

In this paper, we report on the development and validity of the Professional Decision-Making in Research measure, a vignette-based test that examines decision-making strategies used by investigators when confronted with challenging situations in the context of empirical research. The PDR was administered online with a battery of validity measures to a group of NIH-funded researchers and research trainees who were diverse in terms of age, years of experience, types of research, and race. The PDR demonstrated adequate reliability and parallel form (...) correlation. As hypothesized, the PDR was significantly negatively correlated with narcissism, cynicism, moral disengagement, and compliance disengagement; it was not correlated with socially desirable responding. In regression analysis, the strongest predictors of higher PDR scores were low compliance disengagement, speaking English as a native language, conducting clinical research with human subjects, and low levels of narcissism. Given that the PDR was written at an eighth grade reading level to be suitable for use with English as a second language participants and that only one-fourth of items focused on clinical research, further research into the possible roles of culture and research ethics training across specialties is warranted. This initial validity study demonstrates the potential usefulness of the PDR as an educational outcome assessment measure and a research instrument for studies on professionalism and integrity in research. (shrink)

This book explores the pervasiveness of poetry's impact on philosophy and, conversely, how philosophy has sometimes resisted or denied poetry's influence.

PURPOSE: There is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants. METHODS: A multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer. Respondents indicated their preferred mode of communication of research results with respect to implications; timing, provider, and content of the results; reasons for and against (...) providing results; and barriers to providing results. RESULTS: Four hundred nine parents (including 19 of deceased children) and 86 adolescents responded. Most parents (n = 385; 94.2%) felt that they had a strong right to research results. For positive results, most wanted a letter or e-mail summary (n = 238; 58.2%) or a phone call followed by a letter (n = 100; 24.4%). If the results were negative, phone call (n = 136; 33.3%) or personal visits (n = 150; 36.7%) were preferred. Parents wanted the summary to include long-term sequelae and suggestions for participants (n = 341; 83.4%), effect on future treatments (n = 341; 83.4%), and subsequent research steps (n = 284; 69.5%). Understanding the researcher was a main concern about receiving results (n = 145; 35.5%). Parents felt that results provide information to support quality of life (n = 315; 77%) and raise public awareness of research (n = 282; 68.9%). Adolescents identified similar preferences. CONCLUSION: Parents of children with cancer and adolescents with cancer feel strongly that they have a right to be offered research results and have specific preferences of how and what information should be communicated. (shrink)

As guidelines for neonatal resuscitation evolve from a growing evidence base, clinicians must ensure that practice is closely aligned with the available evidence, based on methodologically sound and ethically conducted research. This paper reviews ethical, legal and risk-management issues arising during the design of a quality-assurance project to make video recordings of neonatal resuscitations after high-risk deliveries. The issues, which affect patients, researchers, staff and the hospital at large, include the following: 1) Informed consent for research involving emergency procedures is (...) often not possible, for lack of time to provide sufficient information. The mental capacity of the subject or parent may be compromised by the impending emergency, and freedom of choice is threatened by the time pressure to consent. 2) Video recording of the inevitable medical errors raises issues of whether participating staff may be identifiable and accountable, affecting their willingness to participate in such research. The approach to staff participation and identification is reviewed. 3) The use of video data for education threatens the privacy of research subjects. The ethics of maintaining privacy is balanced with the ethics of using the data to improve practice of resuscitation. 4) The research subjects (patients, or the staff whose performance is being monitored) must be defined. 5) There are legal and ethical aspects of management and ownership of data. 6) The role of the Human Research Ethics Committee in protecting the research subject and possibly the medicolegal interests of the hospital is discussed. This paper reviews the literature and discusses the issues. (shrink)

Background: Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. Methods: This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (...) (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Results: Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). Conclusions: AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials. (shrink)

This four-volume set presents an unrivalled collection of the key literature in European sociology. The prestigious texts range across the European tradition from enlightenment to contemporary theory. The collection explodes the myth that the European tradition in sociology is a debate with the ghosts of Karl Marx and Max Weber, demonstrating that the tradition is far more deeply rooted and broadly based. Volume 1 is devoted to the emergence of European sociology. The contribution of classical political economy and the Enlightenment (...) is examined. Commentaries on the work of Hobbes, Locke, Montesquieu, Taine, Rousseau, de Tocqueville, Comte and St. Simon are included. The volume creates a vivid and compelling picture of the origins of European sociology. Volume 2 covers the rise of the classical period in social theory. It includes commentaries on the contribution of Marx, Spencer, Dilthey, Weber, Durkheim and Simmel. An overview of the main contributions of the founding fathers is also included. Volume 3 moves on to explore the main developments in the first half of the twentieth century. The contributions of the Durkheimian Tradition, Mauss, Mannheim, Lukacs, Gramsci and British sociology are presented. The volume provides a synoptic view of the diversity and emerging complexity of European sociology. Volume 4 identifies the main developments from post-industrial theory to the present day. The volume includes commentaries on the work of Aron, Foucault, Habermas, Giddens, Bourdieu, Boudon and Gellner. Selections on structuralism, polysemy, the positivist dispute and the neo-liberal tradition widen out the picture. The collection is the benchmark work for understanding the history, contribution and dilemmas of the European tradition. Full account is taken of the reference needs of students as well as of academics. Each hardcover volume of 416 pages is bound to the highest standards. The lettering on the cover is gold embossed. The slip case for the four volumes is also embossed. The volumes are not available separately. (shrink)