Net‐risk pediatric research encompasses interventions and studies that pose risks and do not offer a compensating potential for clinical benefit. These interventions and studies are central to efforts to improve pediatric clinical care. Yet critics argue that it is unethical to expose children to research risks for the benefit of unrelated others. While a number of ethical justifications have been proposed, none have received widespread acceptance. This leaves funders with uncertainty over whether they should support and (...) institutional review boards with uncertainty over whether they should approve net‐risk pediatric research. To try to answer these questions, this article describes a justification that I previously proposed and considers two objections to it. This analysis reveals that the opportunity to contribute to a valuable project can justify exposing children to risks even though some trials turn out to be valueless and others turn out to be harmful. It follows that, to protect pediatric participants, institutional review boards need to assess whether trials have the potential to collect socially valuable information and whether they are likely to enroll and retain a sufficient number of participants. (shrink)

Doctoral programs at U.S. universities play a critical role in the development of human resources both in the United States and abroad. This volume reports the results of an extensive study of U.S. research-doctorate programs in five broad fields: physical sciences and mathematics, engineering, social and behavioral sciences, biological sciences, and the humanities. Research-Doctorate Programs in the United States documents changes that have taken place in the size, structure, and quality of doctoral education since the widely used 1982 (...) editions. This update provides selected information on nearly 4,000 doctoral programs in 41 subdisciplines at 274 doctorate-granting institutions. This volume also reports the results of the National Survey of Graduate Faculty, which polled a sample of faculty for their views on the scholarly quality of program faculty and the effectiveness of doctoral programs in preparing research scholars/scientists. This much-anticipated update of such an essential reference will be useful to education administrators, university faculty, and students seeking authoritative information on doctoral programs. (shrink)

The Russian philosopher and cultural theorist Mikhail Bakhtin has traditionally been seen as the leading figure in the group of intellectuals known as the Bakhtin Circle. The writings of other members of the Circle are considered much less important than his work, while Bakhtin's achievement has been exaggerated in proportion to the downgrading of the thinkers with whom he associated in the 1920s. This volume, which includes new translations and studies of the work of the most important members of (...) the Circle, sets out to correct the distortions in the established representations of its activity. The original contributions to literary and linguistic theory made by Valentin Voloshinov and Pavel Medvedev (but frequently credited to Bakhtin) are assessed, and the distinctiveness of their approaches is highlighted. (shrink)

The quality of doctoral-level chemistry (N=145), computer science (N=58), geoscience (N=91), mathematics (N=115), physics (N=123), and statistics/biostatistics (N=64) programs at United States universities was assessed, using 16 measures. These measures focused on variables related to: program size; characteristics of graduates; reputational factors (scholarly quality of faculty, effectiveness of programs in educating research scholars/scientists, improvement in program quality during the last 5 years); university library size; research support; and publication records. Chapter I discusses prior attempts to assess quality in (...) graduate education, development of the study plans, and the selection of disciplines and programs to be evaluated. Chapter II discusses the methodology used, focusing on each of the assessment measures. Chapters III to VIII present, respectively, findings from the analyses of the chemistry, computer science, geoscience, mathematics, physics, and statistics/biostatistics programs. Chapter IX includes a summary of results, correlations among measures, several additional analyses, and suggestions for future studies. Among the findings reported are those indicating that mathematics programs had, on the average, the largest number of faculty (N=33) in December 1980 followed closely by physics (N=28) and chemistry (N=23), and that 80 percent of computer science students had job commitments by graduation. (Survey instruments and supporting documentation are included in appendices.) (JN). (shrink)

Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic (...) class='Hi'>research participants, researchers, research ethics committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants’ needs and contextual realities: de-emphasising the role of experts and institutions in the consenting process, clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and more effective support for research participants during and after the study. (shrink)

Joshua Crites and Eric Kodish focuses on unrealistic optimism as a significant factor in parental decisions when consenting for their child to participate in a phase I study.1 They define unrealistic optimism as ‘when people perceive their own personal outcomes as being more positive than those of other people in similar circumstances’. Faced with the dire circumstances of relapsed malignant disease with a fatal outcome, most parents are confronted with the dilemma of either accepting the inevitable death of their child (...) or clinging to straws of hope. When approached by an investigator who suggests that there is still something that can be done in the ‘fight against the disease’ there is an opportunity to retain a glimmer of hope. No matter how impartial and accurate …. (shrink)

The quality of doctoral-level biochemistry (N=139), botany (N=83), cellular/molecular biology (N=89), microbiology (N=134), physiology (N=101), and zoology (N=70) programs at United States universities was assessed, using 16 measures. These measures focused on variables related to: (1) program size; (2) characteristics of graduates; (3) reputational factors (scholarly quality of faculty, effectiveness of programs in educating research scholars/scientists, improvement in program quality during the last 5 years); (4) university library size; (5) research support; and (6) publication records. Chapter I discusses (...) prior attempts to assess quality in graduate education, development of the study plans, and the selection of disciplines and programs to be evaluated. Chapter II discusses the methodology used, focusing on each of the assessment measures. Chapters III to VIII present, respectively, findings from the analyses of the biochemistry, botany, cellular/molecular biology, microbiology, physiology, and zoology programs. Chapter IX includes a summary of results, correlations among measures, several additional analyses, and suggestions for future studies. Among the findings reported are those indicating that cellular/molecular biology programs had, on the average, the largest number of faculty and that students in cellular/molecular biology, biology, biochemistry, microbiology, and physiology received a relatively high fraction of financial support. (Survey instruments and supporting documentation are included in appendices.) (JN). (shrink)

Using the infamous research studies in Tuskegee and Guatemala, the article examines the difference between victims and bystanders. The victims can include families, sexual partners, and children not just the participants. There are also the bystanders in the populations who are affected, even vaguely, decades after the initial studies took place. Differing reparations for victims and bystanders through lawsuits and historical acknowledgments has to be part of broader discussions of historical justice, and the weighing of the impact (...) of racism and imperial research endeavors. (shrink)

Household confinement due to the rapid spread of the pandemic caused by COVID-19 has brought very significant changes, such as the forced stay-at-home of children due to the closure of schools. This has meant drastic changes in the organization of daily life and restrictions on their activities, including exercise, which could affect the quality of life of the children due to its importance. In order to study the relationship between physical activity and psychological well-being of minors, a study has been (...) carried out with Mixed Methods Research, combining survey methodology with transversal design with qualitative methodology using discourse analysis. A total of 234 parents of minors in Spain and several Spanish-speaking countries in America participated. The instrument was a questionnaire in Google Forms, which included the Kidscreen-27 quality of life scale. The results show significant differences in both the type of physical activity and its frequency due to age, and differences in parents’ perception of whether their children’s physical activity levels were sufficient or not, both on the health, mood and school subscales, and in the categorization of open responses referring to concerns due to the pandemic, analyzed with the ALCESTE technique. The relationship between physical activity of children and adolescents and quality of life is clearly concluded. (shrink)

This essay defines and critiques ‘methodocentrism’, the belief that predetermined research methods are the determining factor in the validity and importance of educational research. By examining research in science studies and posthumanism, the authors explain how this methodocentrism disenables research from taking account of problems and non-human actants that are presumed to be of no importance or value in existing social science research methodologies, both qualitative and quantitative. Building from a critique of these methods (...) as profoundly anthropocentric, the authors examine three crucial problematics in which methodocentrism functions in educational research: the institutionalization of graduate training, a wide-spread privileging of the visual, and the seeming necessity of ‘data’ in social scientific research methodologies. Ultimately, this article does not reject the necessity of particular studies having methods—rigorous, philosophically grounded approaches to problems in the world—but it argues that the belief that methods must be selected from existing options and assembled before approaching the ‘objects’ of study is not only a form of bad science, it is also deeply implicated in anthropocentric and colonialist politics. Instead, what research requires today is a thorough rethinking of the very distinction between subject and object and a renewed questioning of how agency functions in specific research settings. (shrink)

Worldwide there are currently over 1200 research studies being performed on the topic of COVID-19. Many of these involve children and adults over age 65 years. There are also numerous studies testing investigational vaccines on healthy volunteers. No research team is exempt from the pressures and speed at which COVID-19 research is occurring. And this can increase the risk of honest error as well as misconduct. To date, 33 papers have been identified as unsuitable for (...) public use and either retracted, withdrawn, or noted with concern. Asia is the source of most of these manuscripts (n=19; 57.6%) with China the largest Asian subgroup (n=11; 57.9%). This paper explores these findings and offers guidance for responsible research practice during pandemics. (shrink)

With the advent and popularity of Television by the end of 1950s and early 1960s, researchers focused the role and effects of this new medium on its growing audience. Himmelweit and Schramm are considered the pioneer researchers in the field. The volume of scientific studies regarding televised violence was largely increased following the landmark State Reports in US published between 1972 and 1982. These reports indicated that the proliferation of TV has exposed children to media violence at home. However, (...) violence is rarely caused by a single factor, it rather involves multiple factors. Signorielli in her book Violence in the Media rightly commented that television plays a unique role of an entertaining storyteller but the increasing commercialization of TV is a serious matter of concern.1 The objective of this literature review is to provide a holistic overview of the landmark studies conducted on televised violence and its contribution to real life crimes and violence in society. (shrink)

This paper recognizes the complexity of the debate on informed consent and discusses the importance of the ongoing process of consent for people affected by Huntington's disease (HD). Although written information may not be the most appropriate form of obtaining informed consent in qualitative research, it remains an important part of the ethical approval process for health research in the UK. This paper draws on a study in which the information sheet and consent form were specifically designed to (...) help obtain consent from people who may be impaired by the cognitive and physical effects of HD. The forms were developed by drawing on expert opinion and relevant literature and fall in line with recommendations from the Mental Capacity Act 2005 to encourage people to make their own decisions. The paper describes the feasibility of a method for obtaining consent as an ongoing process with patients affected by HD using information sheets and consent forms specifically designed for people with potential cognitive and/or physical impairments. In conclusion, this paper adds a pragmatic approach to the debate on informed consent by describing the development of a written information sheet and consent form being used in a current social research study. Particular emphasis is placed on the importance of written information being adapted according to the needs of potential participants. (shrink)

Scholars of ethnomethodologically informed discourse studies are often sceptical of the use of interview data such as focus group data. Some scholars quite simply reject interview data with reference to a general preference for so-called naturally occurring data. Other scholars acknowledge that interview data can be of some use if the distinction between natural and contrived data is given up and replaced with a distinction between interview data as topic or as resource. In greater detail, such scholars argue that (...) interview data are perfectly adequate if the researcher wants to study the topic of interview interaction, but inadequate as data for studying phenomena that go beyond the phenomenon of interview interaction. Neither of these more and less sceptical positions are, on the face of it, surprising due to the ethnomethodological commitment to study social order as accomplished in situ, not as something that pre-exists or goes beyond the situated interaction. This article, however, challenges not only the first, but also the second position and suggests that it is, after all, possible to do committedly ethnomethodological studies of focus group data that demonstrate how members of a focus group setting accomplish certain rational orders, and, significantly, how they do so by utilizing certain available resources. (shrink)

Guidelines for health research focus on protecting individual research subjects. It is also vital to protect the communities involved in health research. In particular, a number of studies have been criticized on the grounds that they exploited host communities. The present paper attempts to address these concerns by providing an analysis of community exploitation and, based on this analysis, determining what safeguards are needed to protect communities in health research against exploitation. (edited).

Teaching research methods is especially challenging because we not only wish to convey formal knowledge and encourage critical thinking, as with any course, but also to enable our students dream up meaningful research projects, translate them into logical steps, conduct the research in a professional manner, analyze the data, and write up the project in APA style. We also wish to spark interest in the topics of research papers, and in the intellectual challenge of creating a (...) research report, but we have learned just how difficult these goals can be from teaching undergraduates and from serving as journal reviewers: many submissions contain flaws such as elementary errors of logic (e.g., using a null control condition instead of a placebo or dummy treatment), tangled statistics, a lack of graphs, and ungrammatical, unclear writing that violates APA rules. Yet these manuscripts are written by university faculty, often with doctorates and years of experience. Even published papers may contain egregious faults (Standing & McKelvie, 1986). And although we have both published widely, we still hone our skills. It requires optimism to expect that a typical undergraduate will do better, on the basis of just a year or two of studies in psychology. In this paper, we describe a systematic set of methodology courses and two specific practices that we think can help. Methodology Courses as the Backbone of our Psychology Program How can methodology courses promote undergraduate involvem... (shrink)

According to the standard view of informed consent, a prospective subject's consent to participate in a research study is invalid if the individual fails to comprehend the information about the study standardly disclosed to him. I argue that this involves three mistakes. First, the standard view confuses an ethical aspiration with a minimum ethical standard. Second, it assigns the entire responsibility for producing comprehension in study participants to the investigators. Most importantly, the standard view requires the termination of many (...) otherwise perfectly ethical research studies. This last conclusion follows from appreciating a pervasive phenomenon that is known as the "therapeutic misconception." I argue that a prospective subject's consent to participate in research can be perfectly valid even if he or she does not comprehend the information that investigators are required to disclose. Furthermore, I explain that this alternative view does not in the least compromise the vital goal of ensuring the protection of subjects in research. (shrink)

The aim of this review was to analyse the empirical studies that focus on ethics in nursing care for older people, scoping the need and areas for further study. A search of the MEDLINE and CINAHL databases (earliest to August 2009) was conducted using the the keywords: ethic* and nursing or care or caring and elderly or aged or older. After a four-stage process, 71 empirical articles were included in the review, with informants ranging from elderly people to relatives, (...) caregivers, managers and students in care settings. The review focusses on the concepts, contexts, methods and validity of these studies. Based on the analysis, the reviewed research seems to be fragmented and multifaceted, focussing on selected issues such as autonomy, self-determination and informed consent. No large research programs or research traditions were found so it was not possible to draw any conclusions about suitable methods, study designs or instruments of measurement for use in this research area. (shrink)

Investigators and institutional review boards should integrate plans about the appropriate disclosure of individual genetic results when designing research studies. The ethical principles of beneficence, respect, reciprocity, and justice provide justification for routinely offering certain results to research participants. We propose a result-evaluation approach that assesses the expected information and the context of the study in order to decide whether results should be offered. According to this approach, the analytic validity and the clinical utility of a specific (...) result determine whether it should be offered routinely. Different results may therefore require different decisions even within the same study. We argue that the threshold of clinical utility for disclosing a result in a research study should be lower than the threshold used for clinical use of the same result. The personal meaning of a result provides additional criteria for evaluation. Finally, the context of the study allows for a more nuanced analysis by addressing the investigators' capabilities for appropriate disclosure, participants' alternative access to the result, and their relationship with the investigators. This analysis shows that the same result may require different decisions in different contexts. (shrink)

For valid informed consent, it is crucial that patients or research participants fully understand all that their consent entails. Testing and revising informed consent documents with the assistance of their addressees can improve their understandability. In this study we aimed at further developing a method for testing and improving informed consent documents with regard to readability and test-readers’ understanding and reactions. We tested, revised, and retested template informed consent documents for biobank research by means of 11 focus group (...) interviews with members from the documents’ target population. For the analysis of focus group excerpts we used qualitative content analysis. Revisions were made based on focus group feedback in an iterative process. Focus group participants gave substantial feedback on the original and on the revised version of the tested documents. Revisions included adding and clarifying explanations, including an info-box summarizing the main points of the text and an illustrative graphic. Our results indicate positive effects on the tested and revised informed consent documents in regard to general readability and test-readers’ understanding and reactions. Participatory methods for improving informed consent should be more often applied and further evaluated for both, medical interventions and clinical research. Particular conceptual and methodological challenges need to be addressed in the future. (shrink)

Microbiome research shows that human health is foundationally intertwined with the ecology of microbial communities living on and in our bodies. This challenges the categorical separation of organisms from environments that has been central to biomedicine, and questions the boundaries between them. Biomedicine is left with an empirical problem: how to understand causal pathways between host health, microbiota and environment? We propose a conceptual tool – environmentality – to think through this problem. Environmentality is the state or quality of (...) being an environment for something else in a particular context: a fully perspectival proposition. Its power lies partly in what Isabelle Stengers has called the efficacy of the word itself, contrasting the dominant sense of the word environment as something both external and fixed. Through three case studies, we argue that environmentality can help think about the causality of microbiota vis-a-vis host health in a processual, relational and situated manner, across scales and temporalities. We situate this intervention within historical trajectories of thought in biomedicine, focusing on the challenge microbiome research poses to an aperspectival body. We argue that addressing entanglements between microbial and human lives requires that the environment is brought into the clinic, thus shortening the conceptual gap between medicine and public health. (shrink)

Military metaphors are pervasive in biomedicine, including HIV research. Rooted in the mind set that regards pathogens as enemies to be defeated, terms such as “shock and kill” have become widely accepted idioms within HIV cure research. Such language and symbolism must be critically examined as they may be especially problematic when used to express scientific ideas within emerging health-related fields. In this article, philosophical analysis and an interdisciplinary literature review utilizing key texts from sociology, anthropology, history, and (...) Chinese and African studies were conducted to investigate the current proliferation of military metaphors. We found the use of these metaphors to be ironic, unfortunate, and unnecessary. To overcome military metaphors we propose to give them less aggressive meanings, and/or replace them with more peaceful metaphors. Building on previous authors' work, we argue for the increased use of “journey” metaphors as meaningful, cross-culturally app... (shrink)

For the past three decades A. A. Long has been at the forefront of research in Hellenistic philosophy. In this book he assembles a dozen articles on Stoicism previously published in journals and conference proceedings. The collection is biased in favour of Professor Long's more recent studies of Stoicism and is focused on three themes: the Stoics' interpretation of their intellectual tradition, their ethics and their psychology. The contents of the book reflect the peculiarly holistic and systematic features (...) of Stoicism. The papers are printed here in their original form for the most part, but the author has made some minor corrections and stylistic or bibliographical changes. He has also added a postscript to three papers whose topics have been the subject of much discussion during the years since they first appeared. (shrink)

Bioethical research has tended to focus on theoretical discussion of the principles on which the analysis of ethical issues in biomedicine should be based. But this discussion often seems remote from biomedical practice where researchers and physicians confront ethical problems. On the other hand, published empirical research on the ethical reasoning of health care professionals offer only descriptions of how physicians and nurses actually reason ethically. The question remains whether these descriptions have any normative implications for nurses and (...) physicians? In this article, we illustrate an approach that integrates empirical research into the formulation of normative ethical principles using the moral-philosophical method of Wide Reflective Equilibrium (WRE). The research method discussed in this article was developed in connection with the project ‘Bioethics in Theory and Practice’. The purpose of this project is to investigate ethical reasoning in biomedical practice in Denmark empirically. In this article, we take the research method as our point of departure, but we exclusively discuss the theoretical framework of the method, not its empirical results. We argue that the descriptive phenomenological hermeneutical method developed by Lindseth and Norberg (2004) and Pedersen (1999) can be combined with the theory of WRE to arrive at a decision procedure and thus a foundation for the formulation of normative ethical principles. This could provide health care professionals and biomedical researchers with normative principles about how to analyse, reason and act in ethically difficult situations in their practice. We also show how to use existing bioethical principles as inspiration for interpreting the empirical findings of qualitative studies. This may help researchers design their own empirical studies in the field of ethics. (shrink)

This book examines the ethical issues in pediatric medical research. It argues that policies and practices on the participation of children must focus primarily on minimizing risks. It offers specific recommendations to revise Subpart D of the federal regulations to provide greater protection where necessary and remove obstacles that do not provide additional protection but interfere with access. The book is divided into four sections. Section 1 focuses on the issue of access versus protection in pediatric research. Section (...) 2 deals with challenges to regulations. Section 3 discusses the strengths and limits of current regulations, while different case studies are examined in Section 4. (shrink)

Biodiversity studies comprise the systematic examination of the full array of different kinds of organisms together with the technology by which the diversity can be maintained and used for the benefit of humanity. Current basic research at the species level focuses on the process of species formation, the standing levels of species numbers in various higher taxonomic categories, and the phenomena of hyperdiversity and extinction proneness. The major practical concern is the massive extinction rate now caused by human (...) activity, which threatens losses in the esthetic quality of the world, in economic opportunity, and in vital ecosystem services. (shrink)

ABSTRACT Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic (...) research participants, researchers, research ethics committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants’ needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study. (shrink)

Video ethics in educational research involving children is a recent topic that has arisen since the increase in the use of visual mediums in research (such as photovoice and video) especially with the development of new and ubiquitous internet technologies and social media. This paper emerged as an expressed concerned by a group of scholars associated with the new Video Journal of Education and Pedagogy (Brill) that was established in 2016. The paper is the result of a collective (...) writing process over a period of a few months that discusses visual studies in education and visual ethics in relation to qualitative research in education, and as it applies to children. The article also uses the newly established convention of open review, publishing the results with the paper. (shrink)

Survival after solid-organ transplantation has improved significantly, and many contemporary transplant recipients are of childbearing potential. There are limited data to guide decision-making surrounding pregnancy after transplantation, variations in clinical practice, and significant knowledge gaps, all of which raise significant ethical issues. Post-transplant pregnancy is associated with an increased risk of maternal and fetal complications. Shared decision-making is a central aspect of patient counselling but is complicated by significant knowledge gaps. Stakeholder interests can be in conflict; exploring these tensions can (...) help patients to evaluate their options and inform their deliberations. We argue that uniform, evidence-based recommendations for pregnancy after solid organ transplantation are needed. Conducting research, including patient-engaged studies, in this area should be priority for the transplant community. (shrink)

BackgroundEmpirical research can become relevant for bioethics in at least two ways. First, by informing the development or refinement of ethical recommendations. Second, by evaluating how ethical recommendations are translated into practice. This study aims to investigate the scope and objectives of empirical studies evaluating how ethical recommendations are translated into practice. MethodsA sample of the latest 400 publications from four bioethics journals was created and screened. All publications were included if they met one of the following three (...) criteria: (1) evaluative empirical research, (2) non-evaluative empirical research and (3) borderline cases. For all publications categorized as evaluative empirical research we analyzed which objects (norms and recommendations) had been evaluated.Results234 studies were included of which 54% (n = 126) were categorized as non-evaluative empirical studies, 36% (n = 84) as evaluative empirical studies, and 10% (n = 24) as borderline cases. The object of evaluation were aspirational norms in 5 of the 84 included evaluative empirical studies, more specific norms in 14 (16%) studies and concrete best practices in 65 (77%) studies. The specific best practices can be grouped under five broader categories: ethical procedures, ethical institutions, clinical or research practices, educational programs, and legal regulations.ConclusionsThis mapping study shows that empirical evaluative studies can be found at all stages in the translational process from theory to best practices. Our study suggests two intertwined dimensions for structuring the field of evaluative/translational empirical studies in bioethics: First, three broader categories of evaluation objects and second five categories for types of best practices.Trial registration: The methodology used was described in a study protocol that was registered publicly on the Open Science Framework (https://osf.io/r6h4y/). (shrink)

This article is devoted to theexploration of some trends in gender studies incontemporary Russia and is based on ourresearch and teaching in the field over thecourse of seven years. The main concepts ofgender research – gender, feminism,women's subjectivity – were introduced to theRussian public early in 1990s; Russian genderstudies began to develop as a whole due to theapplication of Western concepts and theories.The article examines the growth of genderstudies over the last 10 years, contextualdifferences as well as theoretical (...) approachesin Russian gender studies as these have arisenin the context of the `Russia – West'dichotomy. (shrink)

Two decades have passed since the first attempts were made to establish systematic ethical review of human research in the Baltic States. Legally and institutionally much has changed. In this paper we provide an historical and structural overview of ethical review of human research and identify some problems related to the role of ethical review in establishing quality research environment in these countries. Problems connected to (a) public availability of information, (b) management of conflicts of interest, (c) (...) REC composition and motivation of REC members, and (d) differing levels of stringency of ethical review for different types of studies, are identified. Recommendations are made to strengthen cooperation among the Baltic RECs. (shrink)

Over the past two decades, there has been a marked increase in the number of students with mild disabilities who receive social studies instruction in the general education classroom. This research uses the seminal 1994 Passe and Beattie study as a comparative referent to examine current instructional strategies used to teach such students. The current study sought to answer: What instructional practices do contemporary general educators use to teach social studies to students with disabilities? And have these (...) practices changed in twenty-years? Comparative and comparison results are provided with suggestions to differentiate social studies instruction to meet the learning needs of students with mild disabilities. (shrink)

This case explores the ethical landscape around recontacting a subject's relatives to return genetic research results when the informed consent form signed by the original cohort of subjects is silent on whether investigators may share new information with the research subject's family. As a result of rapid advances in genetic technology, methods to identify genetic markers can mature during the life course of a study. In this case, the investigators identified the genetic mutation responsible for the disorder after (...) a number of their original subjects had died. The researchers now have the ability to inform relatives of the subject about their risk of developing the same disease. Mark Rothstein, JD, from the University of Louisville School of Medicine, provides an overview of the medical/scientific, legal, and ethical issues underlying this case. Lauren Milner, PhD, and colleagues at Stanford University explore how the relationship between researcher and subject affect this debate. Seema Shah, JD, and colleagues at the National Institutes of Health and University of California, Los Angeles discuss whether and how requirements of the duty to warn are applicable in this case. (shrink)

Hofmann and Holm’s recent survey on issues of research misconduct with PhD graduates culminated with a notable conclusion by the authors: ‘ Scientific misconduct seems to be an environmental issue as much as a matter of personal integrity’. Here, we re-emphasise the usefulness of an education-based countermeasure against toxic research environments or cultures that promote unethical practices amongst the younger researchers. We posit that an adequately conducted course in research ethics and integrity, with a good dose of (...) case studies and analyses, can function in a manner that is metaphorically akin to vaccination. The training would cultivate the ability to analyse and build confidence in young researchers in making decisions with sound moral reasoning as well as in speaking up or arguing against pressure and coercions into unacceptable behaviour. A sufficiently large number of young researchers exposed to research ethics trainings would essentially provide a research community some degree of lasting herd immunity at its broadest base. Beyond passive immunity, a crop of research ethics-savvy young researchers could also play active and influential roles as role models for others at their level and perhaps even help correct the wayward attitudes of some senior researchers and initiate prompt action from institutional policy makers in a bottom-up manner. (shrink)

ABSTRACTComparative effectiveness studies, referred to here as “usual-care” trials, seek to compare current medical practices for the same medical condition. Such studies are presumed to be safe and involve only minimal risks. However, that presumption may be flawed if the trial design contains “unusual” care, resulting in potential risks to subjects and inaccurately informed consent. Three case studies described here did not rely on clinical evidence to ascertain contemporaneous practice. As a result, the investigators drew inaccurate conclusions, (...) misinformed research participants, and subjects’ safety was compromised. Before approving usual-care protocols, IRBs and scientific review committees should evaluate the quality and completeness of information documenting usual-care practices. Guidance from governmental oversight agencies regarding evidence-based documentation of current clinical practice could prevent similar occurrences in future usual-care trials. Accurate information is necessary to ensure that trials comply with government regulations that require minimizing research risks to subjects and accurate informed consent documents. (shrink)

In an age where digital images are omnipresent, the use of participant photography in qualitative research has become accessible and commonplace. Yet, scant attention is paid to the social justice impact of photovoice amongst studies that have used this innovative method as a way to promote social justice. There is a need to review this method to understand its contributions and possibilities. This literature review of photovoice research studies (i) explores whether authors implicitly or explicitly related (...) the methodologies to their aims of promoting social justice (methodology–method fit) and (ii) outlines the social justice research impact of photovoice findings using the framework of social justice awareness, amelioration and transformation. PubMed, Scopus, PsycINFO and Web of Science databases were searched from the years 2008–13 using the following keywords: photovoice; photonovella; photovoice and social justice; and photovoice and participatory action research. Of the 30 research studies reviewed, only thirteen identified an underlying methodology guiding the photovoice method. The social justice impacts emphasized were more related to social justice awareness (n = 30) than amelioration (n = 11) or transformation (n = 3). Future researchers using photovoice as a way to promote social justice are encouraged to assess and plan for the social justice impact desired. (shrink)

Research Ethics, Volume 18, Issue 3, Page 210-225, July 2022. Interview-based research in multilingual situations can present researchers with specific ethical challenges relating to language-based power play, data handling and presentation. Studies indicate favouring the L1 as an interviewing language may produce better quality data, but external pressures can favour English as the dominant research language. This article examines researcher perceptions and experiences of the ethical consequences of language choice and the practical issues involved. Interviews were (...) conducted with five European researchers working on an interview-based project with experiences of diverse interviewing scenarios. The four moral principles of respect for autonomy, justice, beneficence and non-maleficence were used as a framework for analysis. The analysis revealed a nuanced picture of ethical issues in both L1- and English-oriented scenarios. This included potential misrepresentation and deculturalisation of the data in the former, and language-based power asymmetries in the latter. The findings highlight the importance of documenting ethics-related methodological details of language use, and advocates publication practices favouring the inclusion and foregrounding of L1 data. (shrink)

In order to illuminate the potential harms of MRI research, we present data obtained by examining MRI research proposal files that had been submitted for review to several Canadian Research Ethics Boards. The data reveal that REB review of the studies contained omissions, considerable variability, and sometimes confusion regarding MRI research risks and risk classification. If our findings reflect the general state of REB review of MRI research in Canada and elsewhere, there is a (...) pressing need for REBs to be educated about MRI risks in order to responsibly facilitate the disclosure of these research risks in consent forms and during the consent process. Developing a standard template consent form that discloses MRI research risks might be a way to ensure attention to and disclosure of risks. (shrink)

This paper evaluates four recent randomized clinical trials in which the informed consent of participants was either not sought at all, or else was conducted with critical information missing from the consent documents. As these studies have been taking place, various proposals to conduct randomized clinical trials without consent have been appearing in the medical literature. Some of the explanations offered for why it is appropriate to bypass consent or disclosure requirements appear to represent a fundamental misunderstanding of applicable (...) government regulations and even the research enterprise. Others are the result of conceptual disagreements about the importance and application of traditional research ethics norms to ‘comparative effectiveness research’ and modern research environments. Common among these explanations, however, is a failure to appreciate when a research intervention, rather than merely an observation or review of data, is taking place. Review committees and investigators are failing to see, or choosing to ignore, interventions in the lives of research subjects. When these studies have come to light, government agencies with oversight authority have done little or backed down. Prestigious medical journals have published research results knowing that the required consent was not obtained, or they have stood by the published studies even after the inadequacy of consent is discovered. This article critically examines this erosion of consent in theory and practice and calls for restoring the requirement of informed consent to its proper place as a priority in human subjects research. (shrink)

ABSTRACT Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic (...) research participants, researchers, research ethics committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants’ needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study. (shrink)

This paper highlights the significance of sensory studies and psychophysical investigations of the relations between psychic and physical phenomena for our understanding of the development of the physics discipline, by examining aspects of research on sense perception, physiology, esthetics, and psychology in the work of Gustav Theodor Fechner, Hermann von Helmholtz, Wilhelm Wundt, and Ernst Mach between 1860 and 1871. It complements previous approaches oriented around research on vision, Fechner’s psychophysics, or the founding of experimental psychology, by (...) charting Mach’s engagement with psychophysical experiments in particular. Examining Mach’s study of the senses and esthetics, his changing attitudes toward the mechanical worldview and atomism, and his articulation of comparative understandings of sensual, geometrical, and physical spaces helps set Mach’s emerging epistemological views in the context of his teaching and research. Mach complemented an analytic strategy focused on parallel psychic and physical dimensions of sensation, with a synthetic comparative approach – building analogies between the retina, the individual, and social life, and moving between abstract and sensual spaces. An examination of the broadly based critique that Mach articulated in his 1871 lecture on the conservation of work shows how his historical approach helped Mach cast what he now saw as a narrowly limiting emphasis on mechanics as a phase yet to be overcome. (shrink)

We explore the relationship between ethnomethodology (EM), ethnography and the needs of managers and designers in industry, considering both ethnomethodological and industrial criteria of adequacy and explicating their relationship through the concept of “audience.” We examine a range of studies in this light, with a view to their possible candidacy as hybrid studies and identify three types of application of EM studies of work: market research, design, and business improvement. Application in the first of these fields (...) we dub “anthropological,” in that it consists in studying and reporting back on the ways of exotic people (customers). This is the application most commonly found in studies of computer supported co-operative work (CSCW). A second CSCW application, “technomethodology,” involves the introduction of EM concepts into the design process. A further application, dubbed “holding-up-a-mirror,” involves reporting back to members of a setting upon their own activities. We argue that technomethodology and holding-up-a-mirror both offer the possibility of creating hybrid disciplines. We consider the objection that improvement and design involve the introduction of value judgements that threaten the practice of EM indifference, arguing that action research can serve as a guarantee of unique adequacy (UA) by testing the researcher’s understanding as analysis in action in the setting. Furthermore, the standard of reporting required by the UA criterion contributes to the effectiveness of proposed solutions. (shrink)