Simple Heuristics That Make Us Smart invites readers to embark on a new journey into a land of rationality that differs from the familiar territory of cognitive science and economics. Traditional views of rationality tend to see decision makers as possessing superhuman powers of reason, limitless knowledge, and all of eternity in which to ponder choices. To understand decisions in the real world, we need a different, more psychologically plausible notion of rationality, and this book provides it. It is about (...) fast and frugal heuristics--simple rules for making decisions when time is pressing and deep thought an unaffordable luxury. These heuristics can enable both living organisms and artificial systems to make smart choices, classifications, and predictions by employing bounded rationality. But when and how can such fast and frugal heuristics work? Can judgments based simply on one good reason be as accurate as those based on many reasons? Could less knowledge even lead to systematically better predictions than more knowledge? Simple Heuristics explores these questions, developing computational models of heuristics and testing them through experiments and analyses. It shows how fast and frugal heuristics can produce adaptive decisions in situations as varied as choosing a mate, dividing resources among offspring, predicting high school drop out rates, and playing the stock market. As an interdisciplinary work that is both useful and engaging, this book will appeal to a wide audience. It is ideal for researchers in cognitive psychology, evolutionary psychology, and cognitive science, as well as in economics and artificial intelligence. It will also inspire anyone interested in simply making good decisions. (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)

Background: Academic productivity has been studied by scholars all round the world for many years. However, in Vietnam, this topic has scarcely been addressed. This research therefore aims at better understanding the correlations between gender, age, research experience, the leading role of corresponding authors, and the total number of their publications in the specific realm of social sciences and humanities. Methods: The study employed a Scopus dataset with publication profiles of 410 Vietnamese researchers between 2008 and 2017. (...) Results: Men did not differ from women in academic publications (P=0.827). The proficiency of corresponding authors positively correlated with the number of published papers (rs=0.61, P<0.001). Lastly, the age of lead authors strongly correlated with scientific output (rs=0.74, P<0.001 for authors between 40 and 50 years of age). Conclusion: While scientific output correlated with the author ages and number of articles in which they led, it was not correlated with their gender in Vietnamese social science and humanities authors. (shrink)

Teaching graduate students how to do research can be a challenge for many instructors because "research education" is not an established field of research like other areas of teaching such as mathematics education, nursing education, science education, and statistics education. There are no scholarly journals devoted solely to teaching research methods; these sources are instead scattered across disciplines and journals (e.g., Nurse Researcher, Volume 13, Number 2, 2005; Sociology, Volume 15, Issue 4, 1981; and Scandinavian Journal (...) of Educational Research, Volume 49, Issue 1, 2005). Furthermore, even though research methods courses are a staple in most graduate training programs, instructors were rarely taught how to teach research methods as part of their own graduate programs. Left to their own devices, instructors of research courses must rely on a network of peers, scattered research literature, and much trial-and-error as they develop and improve upon their own research methods courses. (shrink)

Traditional approaches to human subjects protections in the United States focus on the ethical principles from the Belmont Report: respect for persons, beneficence, and justice. Since research regu...

This grounded study investigated the negotiation of authorship by faculty members, graduate student mentors, and their undergraduate protégés in undergraduate research experiences at a private research university in the northeastern United States. Semi-structured interviews using complementary scripts were conducted separately with 42 participants over a 3 year period to probe their knowledge and understanding of responsible authorship and publication practices and learn how faculty and students entered into authorship decision-making intended to lead to the publication of peer-reviewed technical (...) papers. Herein the theoretical model for the negotiation of authorship developed through the analysis of these interviews is reported. The model identifies critical causal and intervening conditions responsible for the coping strategies faculty and students employ, which, in our study, appear to often produce unfortunate consequences for all involved. The undergraduate student researchers and their graduate student mentors interviewed in this study exhibited a limited understanding of authorship and the requirements for authorship in their research groups. The power differential between faculty and students, the students’ limited epistemic development, the busy-ness of the faculty, and the faculty’s failure to prioritize authorship have been identified as key factors inhibiting both undergraduate and graduate students from developing a deeper understanding of responsible authorship and publication practices. Implications for graduate education and undergraduate research are discussed, and strategies for helping all students to develop a deeper understanding of authorship are identified. (shrink)

A national survey on researchers’ experiences with their institutional review boards (IRBs) is presented, focused exclusively on social and behavioral researchers. A wide range of experiences is apparent in the data, especially in terms of turnaround time for submitted protocols, incidence of data collection without prior IRB approval, and stated reasons for "going solo." Sixty-two percent felt that the turnaround time they typically experience is "reasonable," and 44% said they had not experienced long delays in obtaining approval. However, 48% (...) of respondents reported either conducting a project without IRB approval or modifying an existing project without IRB approval, with anticipated time for approval being the dominant reason offered for doing so. This adds a new dimension to the widely discussed "national IRB crisis" (e.g., Illinois White Paper, 2005). The article concludes with 2 preliminary recommendations for IRB reform. (shrink)

This research presents the results of a survey regarding scientific misconduct and questionable research practices elicited from a sample of 1215 management researchers. We find that misconduct is not encountered often by reviewers nor editors. Yet, there is a strong prevalence of misrepresentations. When it comes to potential methodological improvements, those that are skeptical about the empirical body of work being published see merit in replication studies. Yet, a sizeable majority of editors and authors eschew open data policies, (...) which points to hidden costs and limited incentives for data sharing in management research. (shrink)

While research ethics and developing respective competencies is gaining prominence in higher education institutions, there is limited knowledge about the learning process and scaffolding during such training. The global health crisis has made the need for facilitator-independent training materials with sufficient support even more pronounced. To understand how knowledge building takes place and how computer-supported collaborative learning supports research ethics learning, we analysed: 1) how the participants’ understanding was displayed during the collaborative learning process utilising the developed ethics (...) resource; and 2) whether the scaffolding provided by the resource supported the learning process. Epistemic evidence was collected during design-based research involving 36 PhD students and researchers with supervisory experience divided into 11 groups. Data was analysed qualitatively utilising the SOLO taxonomy. The results revealed that: 1) participants displayed high levels of understanding and the need for the facilitator support decreased with the use of the online ethics resource; 2) the learners were able to evaluate their learning outcomes with satisfactory accuracy; 3) when used linearly, the online ethics resource helped learners to achieve high levels of understanding even when the scaffolding gradually faded. Based on the lessons learnt, design principles were extracted to develop research ethics competencies in higher education, and also recommendations for research ethics training were outlined. (shrink)

Donors, scientists and farmers all benefit when research and development projects have high impact. However, potential benefits are sometimes not realized. Our objective in this study is to determine why resource-poor farmers in Togo (declined to) adopt recommended practices that were promoted through a multi-organizational project on soil fertility management. We examine the processes and outcomes related to the adoption process. The project was undertaken in three villages in the Central Region of Togo in West Africa. The development and (...) research processes that took place during the implementation of the project were critically analyzed using a conceptual framework that may be useful for improving the impact of future participatory projects. At the macro level, opportunities for innovation were not deliberately explored with participating farmers and other village members; consequently “pre-analytical choices” made during the planning phase resulted in practices that resource-poor farmers were, for a variety of reasons, unable or unwilling to adopt. From the outset, donors and scientists focused on soil fertility management, but failed to take into account the wider economic context within which soil fertility management took place. This was a major obstacle to the subsequent adoption of recommended management strategies. Scientists and donor partners measured the success of the Project in terms of crop productivity, but farmers’ choices were influenced by a complex mix of socio-economic, political and technical factors. We also illustrate the importance of selecting appropriate categories of farmers for a particular experiment. We conclude that for participatory research and development projects to be successful, it is not enough to develop technologies that “work” in a technical sense. In order to be scaled up and widely implemented, such technologies must also meet a variety of needs of resource-poor farmers and be acceptable from a socio-cultural point of view. (shrink)

Background Performance evaluation is vital for IRB operations. As the number of IRBs and their responsibilities in reviewing and supervising clinical research grow in China, there is a significant need to evaluate their performances. To date, little research has examined IRB performance within China. The aim of this study was to ascertain the perspectives and experiences of IRB employees and researchers to understand the current status of IRBs; compare collected results with those of other countries; and identify shortcomings (...) to improve IRB performance. Methods This study was conducted in China from October 2020 to September 2021, using an online survey with the IRB-researcher assessment tool-Chinese version. Results 757 respondents were included in the analysis and classified into IRB employees, researchers, or those who are both IRB employees and researchers. Overall, the score for an ideal IRB was significantly higher than that of an actual IRB. Compared to the US National Validation study, Chinese participants and American participants both agree and differ in their perspectives on the most and least important ideal items. Conclusion This investigation provides a benchmark of the perceived performance of actual IRBs in China. IRBs in China can be precisely adjusted by targeting identified areas of weakness to improve their performances. (shrink)

Canada’s Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans mandates that all research involving human subjects be reviewed and approved by a research ethics board . We have little evidence on how researchers are dealing with this requirement in multisite studies, which involve more than one REB. We retrospectively examined 22 REB submissions for two minimal-risk, multisite studies in leading Canadian institutions. Most REBs granted expedited review to the studies, while one declared the application to be (...) exempt from review. Time between submission and approval ranged greatly, from four to 546 days. We received a total of 155 REB queries for changes and clarifications, most of which asked for further information, clarification, or additional documents. Less than a third of the REB queries were requests for specific changes, and a vast majority had a very limited impact on the research projects. Institutions also varied broadly in their description of what was required of local principal investigators. We conclude that the organizational and practical challenges these results imply could deter researchers from embarking on multisite research projects, and that recently proposed changes to the TCPS will not solve these problems. (shrink)

BackgroundLimited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understanding embedded in a multi-disease community health screening and biobank platform study known as ‘Vukuzazi’ in rural KwaZulu-Natal, South Africa.MethodsSemi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, and (...) research staff that worked on the study. The interviews were transcribed, and themes were identified from the interview transcripts, manually coded, and thematically analysed.ResultsThirty-nine individuals were interviewed. We found that the research team explained biobanking and future genomic research by describing how hereditary characteristics create similarities among individuals. However, recollection and understanding of this explanation seven months after participation was variable. The large volume of information about the Vukuzazi study objectives and procedures presented a challenge to participant recall. By the time of interviews, some participants recalled rudimentary facts about the genetic aspects of the study, but many expressed little to no interest in genetics and biobanking.ConclusionParticipant’s understanding of information related to genetics and biobanking provided during the consent process is affected by the volume of information as well as participant’s interest in the subject matter being discussed. We recommend that future studies undertaking biobanking and genomic research treat explanations of this kind of research to participants as an on-going process of communication between researchers, participants and the community and that explanatory imagery and video graphic storytelling should be incorporated into theses explanations as these have previously been found to facilitate understanding among those with low literacy levels. Studies should also avoid having broader research objectives as this can divert participant’s interest and therefore understanding of why their samples are being collected. (shrink)

In this paper the authors, starting from the experience described and commented on in earlier work by Mancini and Sbordone, deal with the three main epistemological problems that the research group they participated in had to face:The conflicting and ambiguous relationship between psychoanalysis and social researchThe classical epistemological problem of the relationship between the subject and object of research within the perspective of action researchThe problem arising from their experience, i.e., the risk of manipulation, and the (...) way to deal with it from an epistemic perspectiveThe three problems are dealt with one at a time, but from a common perspective, i.e., the attempt to integrate the richness and variety of human subjectivity in social research. As to the relationship between psychoanalysis and social research, a special section is devoted to the implications of an integrated or convergent methodology on team-working in organisations. (shrink)

Transfers of critically ill neonates are frequent phenomena. Even though parents’ participation is regarded as crucial in neonatal care, a transfer often means that parents and neonates are separated. A systematic review of the parents’ experiences of neonatal transfer is lacking. This paper describes a meta‐study addressing qualitative research about parents’ experiences of neonatal transfer. Through deconstruction and reflections of theories, methods, and empirical data, the aim was to achieve a deeper understanding of theoretical, empirical, contextual, historical, and methodological (...) issues of qualitative studies concerning parents’ experiences of neonatal transfer over the course of this meta‐study (2000–2017). Meta‐theory and meta‐method analyses showed that caring, transition, and family‐centered care were main theoretical frames applied and that interviewing with a small number of participants was the preferred data collection method. The meta‐data‐analysis showed that transfer was a scary, unfamiliar, and threatening experience for the parents; they were losing familiar context, were separated from their neonate, and could feel their parenthood disrupted. We identified ‘wavering and wandering’ as a metaphoric representation of the parents’ experiences. The findings add knowledge about meta‐study as an approach for comprehensive qualitative research and point at the value of meta‐theory and meta‐method analyses. (shrink)

More involvement of sub-Saharan African countries in biomedical studies, specifically in genetic research, is needed to advance individualized medicine that will benefit non-European populations. Missing infrastructure, cultural and religious beliefs as well as lack of understanding of research benefits can pose a challenge to recruitment. Here we describe recruitment efforts for a large genetic study requiring three-generation pedigrees within the Yoruba homelands of Nigeria. The aim of the study was to identify genes responsible for keloids, a wound healing (...) disorder. We also discuss ethical and logistical considerations that we encountered in preparation for this research endeavor. (shrink)

The article formulates the main issues that form the research field of the anthropology of sacrifice. The first group of problems is associated with a description of the fundamental anthropological nature of the phenomenon of sacrifice and answering the question of whether sacrifice is a cultural universal, and if so, what this universality can be based on, what prototypical forms of sacrifice can be identified and how they can be described. The second group of problems is associated with the (...) task of understanding how the phenomenon of sacrifice is changing today and what anthropological meaning these changes have. In a situation where explicit human sacrifice is taboo, one can speak of the emergence of substitute practices and the emergence of analogs in which the structural elements of the classical ritual are distributed in space and time and are presented in a different order. As a result, in modern society, victims-sufferers are analogous to classical sacrificial victims and therefore often go through sacralizing rituals and practices. However, a fundamentally important question is whether a structure change in distributed sacrifice incurs a change in social functions? And if these changes exist, how essential they are, how much they affect the very semantic core of the anthropology of sacrifice. The third group of problems is associated with the sphere of praxis in its classical understanding, i.e., it represents issues related to political, economic, and ethical implications associated with the phenomenon of sacrifice and analogs of the ritual of sacrifice in modern societies. Here it is also impossible to avoid relating modern discourses and practices to archaic prototypes and identifying similarities and differences, and most importantly, describing transformations and problematizing their anthropological meaning. Since modern society is immersed in the media environment, it is extremely important to discuss the influence of the media on these processes. In general, the anthropology of sacrifice as a research project allows us to look at many of the most pressing social issues of our time from a new angle. (shrink)

There is empirical evidence suggesting a positive link between direct experiences in nature and people’s environmental attitudes (EA) and behaviors (EB). This has led researchers to encourage more frequent contact with nature, especially during childhood, as a way of increasing pro-environmentalism (i.e., pro-EA and pro-EB). However, the association between experiences in nature and EA/EB is complex, and specific guidelines for people’s everyday contact with nature cannot be provided. This article offers an overview of the research conducted until know about (...) the relation between experiences in nature and pro-environmentalism, and opens up new inquiries for future research. We begin with an introduction to people’s current tendency toward an alienation from the natural world and set out the objectives of the article. It is followed by three main sections. The first one reports on what experiences in nature refer to, how and where they occur. The second section describes the different approaches used to investigate and interpret the experiences in nature-EA and EB relation. The last section provides suggestions for future research. We close by making some final remarks about the importance of (re)stablishing a greater interaction with nature for people’s pro-EA and EB. (shrink)

The application of machine learning in health care holds great promise for improving care. Indeed, our own team is collaborating with experts in machine learning and statistical modeling to bu...

Experiences of substitute decision-makers with requests for consent to non-therapeutic research participation during the dying process, including to what degree such requests are perceived as burdensome, have not been well described. In this study, we explored the lived experiences of family members who consented to non-therapeutic research participation on behalf of an imminently dying patient. We interviewed 33 family members involved in surrogate research consent decisions for dying patients in intensive care. Non-therapeutic research involved continuous physiological (...) monitoring of dying patients prior to and for 30 min following cessation of circulation. At some study centres participation involved installation of bedside computers. At one centre electroencephalogram monitoring was used with a subset of participants. Aside from additional monitoring, the research protocol did not involve deviations from usual end-of-life care. Thematic analysis of interviews suggests most family members did not perceive this minimal-risk, non-therapeutic study to affect their time with patients during the dying process, nor did they perceive research consent as an additional burden. In our analysis, consenting for participation in perimortem research offered families of the dying an opportunity to affirm the intrinsic value of patients’ lives and contributions. This opportunity may be particularly important for families of patients who consented to organ donation but did not proceed to organ retrieval. Our work supports concerns that traditional models of informed consent fail to account for possible benefits and harms of perimortem research to surviving families. Further research into consent models which integrate patient and family perspectives is needed. All data relevant to the study are included in the article. (shrink)

There is increasing global pressure to ensure that pregnant women are responsibly and safely included in clinical research in order to improve the evidence base that underpins healthcare delivery during pregnancy. One supposed barrier to inclusion is the assumption that pregnant women will be reluctant to participate in research. There is however very little empirical research investigating the views of pregnant women. Their perspective on the benefits, burdens and risks of research is a crucial component to (...) ensuring effective recruitment. The Research In Pregnancy Ethics study set out to ascertain the views of pregnant women about research participation using an inductive thematic analysis. We conducted semi-structured interviews with 20 women who had participated in a double-blind randomised placebo controlled trial in Wellington while pregnant. Our results show that at least some pregnant women recognise the value and importance of research during pregnancy. The women we interviewed were deeply invested in the research process and outcomes. Key motivations for participating were altruism, playing a valuable civic role and the importance of research. The main perceived burdens related to inconvenience and time commitment. For some women, possible randomization to the placebo arm was regarded as a burden or disadvantage. (shrink)

Do we remember what pain feels like? Investigations into this question have sometimes led to ambiguous or apparently contradictory results. Building on research on pain memory by Rohini Terry and colleagues, I argue that this lack of agreement may be due in part to the difficulty researchers face when trying to convey to their study's participants the type of memory they are being tasked with recalling. To address this difficulty, I introduce the concept of 'qualitative memory', which, arguably, is (...) the sort of memory we have of what red looks like yet lack with respect to pain. I also briefly address a number of consequences the acknowledgment of qualitative memory would potentially have for philosophy, arguing that if we fail to have qualitative memories of certain sensations, such as pain, the standard philosophical accounts of experience, rational choice, and the sources of moral action may all need revision. (shrink)

We employ data envelopment analysis on a series of experiments performed in Fermilab, one of the major high-energy physics laboratories in the world, in order to test their efficiency (as measured by publication and citation rates) in terms of variations of team size, number of teams per experiment, and completion time. We present the results and analyze them, focusing in particular on inherent connections between quantitative team composition and diversity, and discuss them in relation to other factors contributing to scientific (...) production in a wider sense. Our results concur with the results of other studies across the sciences showing that smaller research teams are more productive, and with the conjecture on curvilinear dependence of team size and efficiency. (shrink)

The intention of this article is to make an educational analysis of Merleau-Ponty’s theory of experience in order to see what it implicates for educational practice as well as educational research. In this way, we can attain an understanding what embodied experience might mean both in schools and other educational settings and in researching educational activities. The analysis will take its point of departure in Merleau-Ponty’s analysis and criticism of empiricist and neokantian theories of experience. This (...) will be followed up by an introduction of some central concepts in Merleau-Ponty’s own understanding of experience with emphasis on their relevance for educational analysis. This way of presenting the theory of embodied experience has the advantage of being able to indicate the difference it makes in the field of theories of experience. (shrink)

Debates in the philosophy of science typically take place around issues such as realism and theory change. Recently, the debate has been reformulated to bring in the role of experiments in the context of theory change. As regards realism, Ian Hacking’s contribution has been to introduce ‘intervention’ as the basis of realism. He also proposed, following Imre Lakatos, to replace the issue of truth with progress and rationality. In this context we examine the case of the vitalism — reductionism debate (...) in biology inspired by the works of Indian physicist-turned-biologist Jagadish Chandra Bose (1858–1937), in the early twentieth century. Both camps had their characteristic hardcores. Vitalists led by John S. Burdon-Sanderson and Augustus D. Waller accepted religious metaphysics to support their research programme, which ultimately degenerated. Bose worked more with the ideals of science such as Occam’s razor, large-scale systematization of phenomena and novel prediction. I argue that his religious metaphysics, instead of acting as a protective shield, helped him to consolidate his position and allowed further problem shift resulting in a research programme that involved consciousness too. His research programme remains relevant even today. (shrink)

The Experiment Must Continue is a beautifully articulated ethnographic history of medical experimentation in East Africa from 1940 through 2014. In it, Melissa Graboyes combines her training in public health and in history to treat her subject with the dual sensitivities of a medical ethicist and a fine historian. She breathes life into the fascinating histories of research on human subjects, elucidating the hopes of the interventionists and the experiences of the putative beneficiaries. Historical case studies highlight failed attempts (...) to eliminate tropical diseases, while modern examples delve into ongoing malaria and HIV/AIDS research. Collectively, these show how East Africans have perceived research differently than researchers do and that the active participation of subjects led to the creation of a hybrid ethical form. By writing an ethnography of the past and a history of the present, Graboyes casts medical experimentation in a new light, and makes the resounding case that we must readjust our dominant ideas of consent, participation, and exploitation. With global implications, this lively book is as relevant for scholars as it is for anyone invested in the place of medicine in society. (shrink)

Research Ethics, Volume 18, Issue 3, Page 193-209, July 2022. This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: (...) approaches used to convey information and enhance research participants’ understanding and challenges faced during the consenting process. Several barriers and facilitators for obtaining consent were identified. Innovative and potentially effective consenting strategies were identified in this study that should be studied and independently verified. (shrink)

Experts by Experience in the context of mental health are those who have personal experience of using, or caring for someone who uses, mental health and social care services. How do people with lived experience of mental illness contribute to scientific knowledge and personal growth? This volume comprises three distinct philosophical perspectives focused on specific theoretical and practical challenges for theorizing expertise by experience in philosophical mental health research: the idea of subjectivity in 'lived (...) class='Hi'>experience' and the issue of scientific validation, the prospects of shared meaning-making and the problem of injustice in 'co-production', and the philosophical role of values in navigating difference and value disagreement in psychiatry. (shrink)

Meeting appropriate ethical standards for research involving human participants, mean ensuring confidentiality. It is assumed that the research participant will accept the safeguarding protocols necessary to ensure confidentiality. This assumption however oversimplifies the variation of motivations that goes into participants’ decisions to participate in research. Drawing on reflections from my fieldwork experience in Ghana, I answer the questions: Why do research participants reject confidentiality? What ethical position can one take when the researcher and the researched (...) have conflicting perspectives about confidentiality? I contend that participants with personal stake refuse confidentiality when they want to be acknowledged for their data. Rejecting confidentiality is however, embedded in the individual perspective, cultural, and political context of the study area. The ethical concerns of such refusal can be ameliorated if confidentiality is nuanced to include six categorically distinct but mutually non-exclusive stages: research-planning, ongoing-information, writing-up, reality-after-research, differential-disseminations, and no-confidentiality-clause. The paper further argues that whilst maintaining institutional allegiance in this matter is crucial, employing confidentiality should lie at the intersection of participants’ motivation for taking part in the research, the socio-cultural-specific-context of the study location and the nature of the topic being explored. (shrink)

Background Informed consent is often cited as the “cornerstone” of research ethics. Its intent is that participants enter research voluntarily, with an understanding of what their participation entails. Despite agreement on the necessity to obtain informed consent in research, opinions vary on the threshold of disclosure necessary and the best method to obtain consent. We aimed to investigate Australian researchers’ views on, and their experiences with, obtaining informed consent. Methods Semi-structured interviews were conducted with 23 researchers from (...) NSW institutions, working in various fields of research. Interviews were analysed and coded to identify themes. Results Researchers reported that consent involved information disclosure, understanding and a voluntary decision. They emphasised the variability of consent interactions, which were dependent on potential participants’ abilities and interests, study complexity and context. All researchers reported providing written information to potential participants, yet questioned the readability and utility of this information. The majority reported using signed consent forms to ‘operationalise’ consent and reported little awareness of, and lack of support in implementing more dynamic informed consent procedures, such as verbal informed consent, that was fit for the purposes of their studies. Views on Human Research Ethics Committees varied. Some reported inconsistent, arduous inputs on the information form and consent process. Others expressed reliance on HRECs for guidance, viewing them as institutional safeguards. Conclusions This study highlights the importance of transparent relationships, both between researchers and participants, and between researchers and HRECs. Where the relationship with study participants was reported as more robust, researchers felt that they were better able to ensure participants made better, more informed decisions. Where the relationship with HRECs was reported as more robust, researchers were more likely to view them as institutional safeguards, rather than as bureaucratic hindrances. Conscientious and mindful researchers are paramount to ensuring the procedure accommodates individual requirements. This study advocates that when designing ethical informed consent practices, researchers should be integrated as autonomous players with a positive input on the process, rather than, in the worst case, predatory recruiters to be curtailed by information forms and oversight. (shrink)

Clinical research is a necessity if effective and safe treatments are to be developed. However, this may well include the need for research that is best described as ‘invasive’ in that it may be associated with some discomfort or inconvenience. Limitations in the undertaking of invasive research involving people with intellectual disabilities (ID) are perhaps related to anxieties within the academic community and among ethics committees; however, the consequence of this neglect is that innovative treatments specific to (...) people with ID may not be developed. Such concerns are likely to continue while there is limited published knowledge regarding the actual experiences of people with ID who have participated in invasive clinical research. As part of a pilot study trialling the novel use of a surgically inserted device to curb overeating in people with Prader–Willi syndrome (PWS) we have investigated the experience of research through semistructured qualitative interviews involving three participants and their carers. Thematic analysis revealed that the adults with PWS and their family carers rated their participation positively, seeing it as a rewarding and enriching experience. This brief report discusses findings from our interview data in order to highlight strategies which may ensure that research is acceptable to participants, meets the necessary ethical standards and is able to achieve the aims set out by the researchers. To our knowledge, this is the first study to record experiences directly from people with PWS and their carers regarding their involvement in invasive clinical research. (shrink)

Background:Research integrity has gained attention in the general public as well as in the research community. We wanted to investigate knowledge, attitudes, and practices amongst researchers that...

Theoretical and empirical research in bioethics frequently focuses on ethical dilemmas or problems. This paper draws on anthropological and phenomenological sources to develop an alternative framework for bioethical enquiry that allows examination of a broader range of how the moral is experienced in the everyday lives of individuals and groups. Our account of moral experience is subjective and hermeneutic. We define moral experience as “Encompassing a person's sense that values that he or she deem important are being (...) realised or thwarted in everyday life. This includes a person's interpretations of a lived encounter, or a set of lived encounters, that fall on spectrums of right-wrong, good-bad or just-unjust”. In our conceptualisation, moral experience is not limited to situations that are heavily freighted with ethically-troubling ramifications or are sources of debate and disagreement. Important aspects of moral experience are played out in mundane and everyday settings. Moral experience provides a research framework, the scope of which extends beyond the evaluation of ethical dilemmas, processes of moral justification and decision-making, and moral distress. This broad research focus is consistent with views expressed by commentators within and beyond bioethics who have called for deeper and more sustained attention in bioethics scholarship to a wider set of concerns, experiences and issues that better captures what is ethically at stake for individuals and communities. In this paper we present our conceptualisation of moral experience, articulate its epistemological and ontological foundations and discuss opportunities for empirical bioethics research using this framework. (shrink)