The main object of criticism of present-day medical ethics is the standard view of the relationship between theory and practice. Medical ethics is more than the application of moral theories and principles, and health care is more than the domain of application of moral theories. Moral theories and principles are necessarily abstract, and therefore fail to take account of the sometimes idiosyncratic reality of clinical work and the actual experiences of practitioners. Suggestions to remedy the illnesses of contemporary medical (...) ethics focus on re-establishing the connection between the internal and external morality of medicine. This article discusses the question how to develop a theoretical perspective on medical ethical issues that connects philosophical reflection with the everyday realities of medical practice. Four steps in a comprehensive approach of medical ethics research are distinguished: (1) examine health care contexts in order to obtain a better understanding of the internal morality of these practices; this requires empirical research; (2) analyze and interpret the external morality governing health care practices; sociological study of prevalent values, norms, and attitudes concerning medical-ethical issues is required; (3) creation of new theoretical perspectives on health care practices; Jensen's theory of healthcare practices will be useful here; (4) develop a new conception of bioethics that illuminates and clarifies the complex interaction between the internal and external morality of health care practices. Hermeneutical ethics can be helpful for integrating the experiences disclosed in the empirical ethical studies, as well as utilizing the insights gained from describing the value-contexts of health care practices. For a critical and normative perspective, hermeneutical ethics has to examine and explain the moral experiences uncovered, in order to understand what they tell us. (shrink)

BackgroundOne of the next frontiers in HIV research is focused on finding a cure. A new priority includes people with HIV (PWH) with non-AIDS terminal illnesses who are willing to donate their bodies at the end-of-life (EOL) to advance the search towards an HIV cure. We endeavored to understand perceptions of this research and to identify ethical and practical considerations relevant to implementing it.MethodsWe conducted 20 in-depth interviews and 3 virtual focus groups among four types of key (...) stakeholders in the United States (PWH, biomedical HIV cure researchers, HIV clinicians, and bioethicists) to obtain triangulated viewpoints because little was known about the ethics of this topic. Each group was queried as to ethical considerations, safeguards, and protections for conducting HIV cure-related research at the EOL to ensure this research remains acceptable.ResultsAll four key stakeholder groups generally supported HIV cure-related research conducted at the EOL because of the history of altruism within the PWH community and the potential for substantial scientific knowledge to be gained. Our informants expressed that: (1) Strong stakeholder and community involvement are integral to the ethical and effective implementation, as well as the social acceptability of this research; (2) PWH approaching the EOL should not inherently be considered a vulnerable class and their autonomy must be respected when choosing to participate in HIV cure-related research at the EOL; (3) Greater diversity among study participants, as well as multi-disciplinary research teams, is necessitated by HIV cure-related research at the EOL; (4) The sensitive nature of this research warrants robust oversight to ensure a favorable risk/benefit balance and to minimize the possibility of therapeutic misconception or undue influence; and (5) Research protocols should remain flexible to accommodate participants’ comfort and needs at the EOL.ConclusionBecause of the ethical issues presented by HIV cure-related research at the EOL, robust ethical safeguards are of utmost importance. The proposed ethical and practical considerations presented herein is a first step in determining the best way to maximize this research’s impact and social value. More much inquiry will need to be directed towards understanding context-specific and cultural considerations for implementing EOL HIV cure research in diverse settings. (shrink)

This article offers perspectives from academics with recent journal editing experience on a range of ethical issues and dilemmas that regularly pose challenges for those in editorial roles. Each contributing author has provided commentary and reflection on a select topic that was identified in the research literature concerning academic publishing and journal editing. Topics discussed include the ethical responsibilities of working with international and early career contributors to develop work for publication, balancing influence and responsibility to a (...) journal's disciplinary field while maintaining the integrity of editorial and review processes, and the challenges of promoting scholarly research that pushes epistemological, methodological, and political boundaries in an increasingly competitive publishing climate. This article aims to stimulate discussion concerning the roles, responsibilities, and ethical challenges faced by journal editors, and the implications of these for ethical practices in academic publishing today. (shrink)

Research Ethics is a key element of Responsible Research and Innovation (RRI). In spite of an increased interest in this topic there is little empirical evidence about scientists’ practice and perception of Research Ethics. Drawing on a large-scale survey among 4,180 European researchers we present unique insights into Research Ethics activities, researchers’ motivation for ethical behavior, the perceived barriers and benefits as well as the role of institutional support. According to the survey results, most (...) researchers consider ethical issues in their research projects and see it as part of good research practice or are convinced that research must be ethical. Perceived benefits of Research Ethics are higher quality of scientific outputs, higher social relevance of research, increased societal impact and a changed approach to risk. Barriers to ethics activities are particularly seen in the absence of institutional support and incentives. With regard to institutional support, we show that offers and infrastructures of Research Performing Organisations for Research Ethics are not well known among the employed researchers in general. Through a regression analysis about the influence of institutional support on Research Ethics we see at the same time that the provision of an Ethics team that researchers can address and the existence of a policy for designing ethical values and principles into research practice have a positive influence on researchers to engage in Research Ethics activities. The results underlines the importance of low-threshold services and personal contacts for researchers with ethical questions. (shrink)

Ethical research conduct is a cornerstone of research practice particularly when research participants include vulnerable populations. This study mapped the extent of reporting ethical research practices in studies conducted among refugees and war-affected populations in the Arab World, and assessed variations by time, country of study, and study characteristics. An electronic search of eight databases resulted in 5668 unique records published between 2000 and 2013. Scoping review yielded 164 eligible articles for analyses. (...) class='Hi'>Ethical research practices, including obtaining institutional approval, access to the community/research site, and informed consent/assent from the research participants, were reported in 48.2, 54.9, and 53.7% of the publications, respectively. Institutional approval was significantly more likely to be reported when the research was biomedical in nature compared to public health and social, when the study employed quantitative compared to qualitative or mixed methodologies, and when the journal required a statement on ethical declarations. Institutional approval was least likely to be reported in papers that were sole-authored, when these did not mention a funding source, or when published in national journals. Similar results were obtained for access to the community site and for seeking informed consent/assent from study participants. The responsibility of inadequacies in adherence to ethical research conduct in crisis settings is born by a multitude of stakeholders including funding agencies, institutional research boards, researchers and international relief organizations involved in research, as well as journal editors, all of whom need to play a more proactive role for enhancing the practice of ethical research conduct in conflict settings. (shrink)

This study examined Canadian Research Ethics Board practices concerning continuing ethics review of approved studies. A mail-out questionnaire was used to elicit information from Canadian REB representatives about whether their board engaged in continuing ethics review, and, if so, what their methods were. The study found that a majority of REBs conduct continuing ethics review. REBs conduct continuing ethics review of clinical trial research significantly more often than of academic research. The study also found little difference in (...) the frequency of continuing ethics review between academic and other types of REBs. The most commonly reported method for conducting continuing ethics review was a review of ongoing research reports. (shrink)

In theory, HREC members should use the ethical guidelines in the National Statement on the Ethical Conduct of Research Involving Humans as the basis for their decisions, and researchers should design their research in accordance with these guidelines However, very little is known about what researchers and HREC members actually do in practice. In this paper, we report some of the key findings of the study “Human Research Ethics in Practice”, a qualitative interview-based (...) study of health researchers and HREC members in Victoria. The findings shed light on how researchers and HREC members conceptualise ethics, how they use the National Statement, and what deliberative strategies they employ to assess the ethical appropriateness of research studies. The findings also reveal differences and similarities between health researchers’ and HREC members’ perceptions of the roles of HRECs, and point to some sources of misunderstanding and tension. We examine the implications of some of these findings for the ways in which HRECs carry out their task, and research institutions support and promote ethical conduct in research amongst their staff and students. The focus of this study is on health research, but we suggest that the findings are highly relevant to all other research areas where human participants are involved. (shrink)

This article explores two key facets of institutionalized ethical review processes in Germany: (1) their importance in shaping ethical research and (2) their associated challenges, with a specific focus on their implications within the social sciences. Ethical considerations play a pivotal role in (social science) research, safeguarding, amongst others, the rights and well-being of participants and ensuring research integrity. Despite notable progress in promoting research ethics, German research institutions still need to significantly (...) improve their ethics review processes. To address these challenges, this article emphasizes the need for expanding the current management of research ethics and implementing what we call “Institutionalized Research Ethics Practices’’ (IREPs), which include but go beyond the scope of common Institutional Review Boards (IRBs). Drawing on two workshops with researchers and IRB members, and a systematic review of existing IRBs in the German social sciences, we propose concrete recommendations for developing and enhancing IREPs, including a conducive environment, accessibility, fairness, and fostering expertise (CAFE). These enhancements aim to strengthen Germany’s research ethics infrastructure and promote responsible and ethical research practices in the social sciences. (shrink)

BackgroundPromoting the social value of global health research undertaken in resource poor settings has become a key concern in global research ethics. The consideration for benefit sharing, which concerns the elucidation of what if anything, is owed to participants, their communities and host nations that take part in such research, and the obligations of researchers involved, is one of the main strategies used for promoting social value of research. In the last decade however, there has been (...) intense debate within academic bioethics literature seeking to define the benefits, the beneficiaries, and the scope of obligations for providing these benefits. Although this debate may be indicative of willingness at the international level to engage with the responsibilities of researchers involved in global health research, it remains unclear which forms of benefits or beneficiaries should be considered. International and local research ethics guidelines are reviewed here to delineate the guidance they provide.MethodsWe reviewed documents selected from the international compilation of research ethics guidelines by the Office for Human Research Protections under the US Department of Health and Human Services.ResultsAccess to interventions being researched, the provision of unavailable health care, capacity building for individuals and institutions, support to health care systems and access to medical and public health interventions proven effective, are the commonly recommended forms of benefits. The beneficiaries are volunteers, disease or illness affected communities and the population in general. Interestingly however, there is a divide between "global opinion" and the views of particular countries within resource poor settings as made explicit by differences in emphasis regarding the potential benefits and the beneficiaries.ConclusionAlthough in theory benefit sharing is widely accepted as one of the means for promoting the social value of international collaborative health research, there is less agreement amongst major guidelines on the specific responsibilities of researchers over what is ethical in promoting the social value of research. Lack of consensus might have practical implications for efforts aimed at enhancing the social value of global health research undertaken in resource poor settings. Further developments in global research ethics require more reflection, paying attention to the practical realities of implementing the ethical principles in real world context. (shrink)

This book identifies the impact of globalization, advanced technology, and international collaboration on ethical research methods and practice.

As thousands of healthy research participants are being included in small and large imaging studies, it is essential that dilemmas raised by the detection of incidental findings are adequately handled. Current ethical guidance indicates that pathways for dealing with incidental findings should be in place, but does not specify what such pathways should look like. Building on an interview study of researchers’ practices and perspectives, we identified key considerations for the set-up of pathways for the detection, management and (...) communication of incidental findings in imaging research. We conducted an interview study with a purposive sample of researchers at research facilities across the Netherlands. Based on a qualitative analysis of these interviews and on existing guidelines found in the literature, we developed a prototype ethical framework, which was critically assessed and fine-tuned during a two-day international expert meeting with bioethicists and representatives from large population-based imaging studies from the United Kingdom, Germany, Sweden and Belgium. Practices and policies for the handling of incidental findings vary strongly across the Netherlands, ranging from no review of research scans and limited feedback to research participants, to routine review of scans and the arrangement of clinical follow-up. Respondents felt that researchers do not have a duty to actively look for incidental findings, but they do have a duty to act on findings, when detected. The principle of reciprocity featured prominently in our interviews and expert meeting. We present an ethical framework that may guide researchers and research ethics committees in the design and/or evaluation of appropriate pathways for the handling of incidental findings in imaging studies. The framework consists of seven steps: anticipation of findings, information provision and informed consent, scan acquisition, review of scans, consultation on detected abnormalities, communication of the finding, and further clinical management and follow-up of the research participant. Each of these steps represents a key decision to be made by researchers, which should be justified not only with reference to costs and/or logistical considerations, but also with reference to researchers’ moral obligations and the principle of reciprocity. (shrink)

There is a gap in evidence regarding how research trial closure processes are managed to ensure continuity of HIV care for HIV positive participants following trial closure within low income settin...

Volume 34, Issue 3, July-September 2019, Page 171-175.

Research on behavioral ethics is thriving and intends to offer advice that can be used by practitioners to improve the practice of ethics management. However, three barriers prevent this research from generating genuinely useful advice. It does not sufficiently focus on interventions that can be directly designed by management. The typical research designs used in behavioral ethics research require such a reduction of complexity that the resulting findings are not very useful for practitioners. Worse still, (...) attempts to make behavioral ethics research more useful by formulating simple recommendations are potentially very damaging. In response to these limitations, this article proposes to complement the current behavioral ethics research agenda that takes an ‘explanatory science’ approach with a research agenda that uses a ‘design science’ approach. Proposed by Joan van Aken and building on earlier work by Herbert Simon, this approach aims to develop field-tested ‘design propositions’ that present often complex but useful recommendations for practitioners. Using a ‘CIMO-logic’, these propositions specify how an ‘intervention’ can generate very different ‘outcomes’ through various ‘mechanisms’, depending on the ‘context’. An illustration and a discussion of the contours of this new research agenda for ethics management demonstrate its advantages as well as its feasibility. The article concludes with a reflection on the feasibility of embracing complexity without drowning in a sea of complicated contingencies and without being paralyzed by the awareness that all interventions can have both desirable and undesirable effects. (shrink)

Inspired by interviews conducted with scientists who primarily use participatory research forms, the article develops the concept of epistemic caring as a proposal for a participatory research practice that is sensitive for epistemological difference and the associated consequences. Based on the observation that participatory research has so far hardly been able to produce an equal co-constitution of knowledge, the article points out epistemological pitfalls that exist in it and analyses two specific concepts as examples of the (...) risk of problematic epistemological and hegemonic tendencies sneaking into this kind of research practice with harmful consequences for the non-academic participants, that is: empowerment and participation/co-production. Following the recent debate on care in the Environmental Humanities and Karen Barad’s methodological thoughts on diffraction, the article reconceptualizes participatory research as a matter of care consisting of multiple care relations in order to be able to grasp the complex epistemic entaglements and intra-dependencies contained within it. Conceiving these relationships between academic and non-academic participants as an ecology of care themself helps to understand that they are fundamentally precarious and transformative and thus inherently ethical. (shrink)

This article deals with the integration of ethical reflection into the research practices of the project at the Lille Nord-Pas-de-Calais genopole: “Multifactorial genetic pathologies and therapeutic innovations”. The general hypothesis of this text is that changes in research practices in biology (mainly through the use of bioinformatics) imply changes in medical practices, which require critical reflection. This hypothesis could be broken down into three sub-hypotheses: (1) Research in biology is undergoing a complete transformation; (2) Research (...) in biology is a cultural practice, which cannot be reduced to a simple cognitive action; (3) Research in biology is a techno-scientific practice. As for the method, the aim of our research at the Medical Ethics Centre is to elucidate the philosophical and ethical range of biomedical practices. This work entails a double task for reflection. On the one hand, from the revelation of ethical tensions present in these practices, we have to think about what is at stake in these practices, and more broadly in society. On the other hand, we have to analyse the conditions enabling the actors to assume the significance of ethical reflection in their practices. The method set up to undertake this double task could be qualified as “narrative hermeneutics”, as its aim is to attempt to interpret the stakes in practices from proximity with these practices and from what their actors have to say about them. The text then goes on to analyse more specifically the emergence and place of bioinformatics in present-day biomedical research. (shrink)

Responsible conduct of research and ethical publishing practices are debatable issues in the higher education literature. The literature suggests that ‘authorship disputes’ are associated with multi-author paper publication and linked to ethical publishing practices. A few research studies argue authorship matters of a multi-author paper publication, but do not explain how to arrange author list meaningfully in a multi-author paper. How is a principal author of a multi-author paper to be decided? The literature also does not (...) clarify whether language editor could claim authorship for a research paper publication? The paper adopts qualitative methodology that subsumes descriptive, evaluative, and interpretative approaches to answer these questions. While answering these questions, the paper critically examines ‘authorship disputes’ and ‘types of authorship’ relating to research paper publication practices. At the end, the paper proposes a framework that would help to resolve authorship disputes over multi-author paper publication. (shrink)

The ethics review of qualitative health research poses various challenges that are due to a mismatch between the current practice of ethics review and the nature of qualitative methodology. The process of obtaining ethics approval for a study by a research ethics committee before the start of a research study has been described as “procedural ethics” and the identification and handling of ethical issues by researchers during the research process as “ethics in practice.” (...) While some authors dispute and other authors defend the use of procedural ethics in relation to qualitative health research, there is general agreement that it needs to be supplemented with ethics in practice. This article aims to provide an illustration of research ethics in practice by reflecting on the ways in which we identified and addressed ethical and methodological issues that arose in the context of an interview study with mental health service users and relatives. We describe the challenges we faced and the solutions we found in relation to the potential vulnerability of research participants, the voluntariness of consent, the increase of participant access and the heterogeneity of the sample, the protection of privacy and internal confidentiality, and the consideration of personal and contextual factors. (shrink)

Breaches of research integrity have gained considerable attention due to high-profile scandals involving questionable research practices by reputable scientists. These practices include plagiarism, manipulation of authorship, biased presentation of findings and misleading reports of significance. To combat such practices, policymakers tend to rely on top-down measures, mandatory ethics training and stricter regulation, despite limited evidence of their effectiveness. In this study, we investigate the occurrence and underlying factors of questionable research practices (QRPs) through an original survey of (...) 3,005 social and medical researchers at Swedish universities. By comparing the role of the organizational culture, researchers´ norms and counter norms, and individual motivation, the study reveals that the counter norm of Biasedness—the opposite of universalism and skepticism—is the overall most important factor. Thus, Biasedness was related to 40–60% of the prevalence of the questionable practices. The analysis also reveals the contradictory impact of other elements in the organizational environment. Internal competition was positively associated with QRP prevalence, while group-level ethics discussions consistently displayed a negative association with such practices. Furthermore, in the present study items covering ethics training and policies have only a marginal impact on the prevalence of these practices. The organizational climate and normative environment have a far greater influence. Based on these findings, it is suggested that academic leaders should prioritize the creation and maintenance of an open and unbiased research environment, foster a collaborative and collegial climate, and promote bottom-up ethics discussions within and between research groups. (shrink)

Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and (...) physicians' experiences of the pediatric oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)

BackgroundHIV cure research involving cell and gene therapy has intensified in recent years. There is a growing need to identify ethical standards and safeguards to ensure cell and gene therapy (CGT) HIV cure research remains valued and acceptable to as many stakeholders as possible as it advances on a global scale.MethodsTo elicit preliminary ethical and practical considerations to guide CGT HIV cure research, we implemented a qualitative, in-depth interview study with three key stakeholder groups in (...) the United States: (1) biomedical HIV cure researchers, (2) bioethicists, and (3) community stakeholders. Interviews permitted evaluation of informants’ perspectives on how CGT HIV cure research should ethically occur, and were transcribed verbatim. We applied conventional content analysis focused on inductive reasoning to analyze the rich qualitative data and derive key ethical and practical considerations related to CGT towards an HIV cure.ResultsWe interviewed 13 biomedical researchers, 5 community members, and 1 bioethicist. Informants generated considerations related to: perceived benefits of CGT towards an HIV cure, perceived risks, considerations necessary to ensure an acceptable benefit/risk balance, CGT strategies considered unacceptable, additional ethical considerations, and considerations for first-in-human CGT HIV cure trials. Informants also proposed important safeguards to developing CGT approaches towards an HIV cure, such as the importance of mitigating off-target effects, mitigating risks associated with long-term duration of CGT interventions, and mitigating risks of immune overreactions.ConclusionOur study identified preliminary considerations for CGT-based HIV cure across three key stakeholder groups. Respondents identified an ideal cure strategy as one which would durably control HIV infection, protect the individual from re-acquisition, and eliminate transmission to others. Known and unknown risks should be anticipated and perceived as learning opportunities to preserve and honor the altruism of participants. Preclinical studies should support these considerations and be transparently reviewed by regulatory experts and peers prior to first-in-human studies. To protect the public trust in CGT HIV cure research, ethical and practical considerations should be periodically revisited and updated as the science continues to evolve. Additional ethics studies are required to expand stakeholder participation to include traditionally marginalized groups and clinical care providers. (shrink)

Integrating artificial intelligence (AI) into critical domains such as healthcare holds immense promise. Nevertheless, significant challenges must be addressed to avoid harm, promote the well-being of individuals and societies, and ensure ethically sound and socially just technology development. Innovative approaches like Embedded Ethics, which refers to integrating ethics and social science into technology development based on interdisciplinary collaboration, are emerging to address issues of bias, transparency, misrepresentation, and more. This paper aims to develop this approach further to enable future projects (...) to effectively deploy it. Based on the practical experience of using ethics and social science methodology in interdisciplinary AI-related healthcare consortia, this paper presents several methods that have proven helpful for embedding ethical and social science analysis and inquiry. They include (1) stakeholder analyses, (2) literature reviews, (3) ethnographic approaches, (4) peer-to-peer interviews, (5) focus groups, (6) interviews with affected groups and external stakeholders, (7) bias analyses, (8) workshops, and (9) interdisciplinary results dissemination. We believe that applying Embedded Ethics offers a pathway to stimulate reflexivity, proactively anticipate social and ethical concerns, and foster interdisciplinary inquiry into such concerns at every stage of technology development. This approach can help shape responsible, inclusive, and ethically aware technology innovation in healthcare and beyond. (shrink)

In this editorial essay, we argue that business ethics research should be aware of the ethical implications of its own methodological choices, and that these implications include, but go beyond, mere compliance with standardized ethical norms. Methodological choices should be made specifically with reference to their effects on the world, both within and outside the academy. Awareness of these effects takes researchers beyond assuring ethics in their methods to more fully consider the ethics of their methods as (...) knowledge practices that have broader institutional consequences. Drawing from examples in published research, we examine five ways in which authors can formulate their methodological approaches with purpose, care and reflexivity. (shrink)

Alice considered [the idea of un-birthday presents] a little. “I llke birthday presents best,” she said at last.“You don’t know what you’re talking about!” cried Humpty Dumpty. … “[There are three hundred and sixty-four days when you might get un-birthday presents… And only one for birthday presents, you know. There’s a ‘glory’ for you!”“I don’t know what you mean by ‘glory,’” Alice said.Humpty Dumpty smiled contemptuously. “Of course you don’t—till I tell you. I meant ‘there’s a nice knock-down argument for (...) you!’”“But ‘glory’ doesn’t mean ‘a nice knock-down argument,’” Alice objected.“When I use a word,” Humpty Dumpty said in a rather scornful tone, “it means just what I choose it to mean—neither more nor less.”. (shrink)

There has been growing enthusiasm amongst those who undertake research with children, for the development of participatory and visual research methods. The greater availability and affordability of digital technology (such as digital cameras, tablets and smart phones) has meant that there has been greater scope for digital technology to support participatory research methods, or augment more traditional qualitative research methods. While digital technology provides new opportunities for qualitative researchers, they also come with a series of challenges (...) – some of which have been grappled with by those using more traditional research methods but also some which are new. Our study was undertaken in Victoria, Australia, and used a combination of interviews, focus groups and digital storytelling to bring together two strands of work which have historically occurred separately: work with children experiencing domestic violence and programs for men who use domestic violence. While digital storytelling proved to be an effective method of engaging children and young people in the research, a range of challenging ethical issues emerged. Some of these issues were considered as part of the formal ‘procedural ethics’ process, but additional and more challenging issues relating to anonymity and the complex safety considerations of using of the children’s digital stories within programs for men who use violence and dissemination emerged in practice. It is hoped that sharing our experiences and decision-making will contribute to the knowledge base for others considering engaging in sensitive research using digital technology. (shrink)

Ethical research behaviour plays an essential role in ensuring the integrity of knowledge. Consequently, ethical transgressions during the research process negatively influence the knowledge produced, and have wider social consequences for various stakeholders in society. To honour the value and role of ethical research for individuals and society, researchers are required to display ethical judgement and ethically responsible research behaviour. Doctoral students, who are considered to be significant contributors to knowledge creation, can (...) improve the quality of their research through their ethical research behaviour. Owing to the implicit and explicit ethical practices and conflicts that can arise during the research process, the supervision process is an opportune moment for developing ethical research behaviour and ethical capabilities in doctoral students. This article focuses on developing ethical research behaviour in doctoral students, and offers pragmatic guidelines for ways in which this behaviour can be developed during the supervision process. (shrink)

We surveyed 1005 postdoctoral fellows by questionnaire about ethical matters related to biomedical research and publishing; 33% responded. About 18% of respondents said they had taken a course in research ethics, and about 31% said they had had a course that devoted some time to research ethics. A substantial majority stated willingness to grant other investigators, except competitors, access to their data before publication and to share research materials. Respondents’ opinions about contributions justifying authorship of (...) research papers were mainly consistent but at variance with those of many biomedical journal editors. More than half said they had observed what they considered unethical research practices. To increase the chances of getting a grant funded, 27% said they were willing to select or omit data to improve their results; to make publication of their work more likely or to benefit their career, 15% would select or omit data and 32% would list an undeserving author. Of respondents who thought they had been unfairly denied authorship on a paper, or been listed with or asked to list an undeserving author, 75% said they would be willing to list an undeserving author (P<0.001). Having taken a course dealing with research ethics had no effect on stated willingness to select or omit data or to fabricate data in the future, but was positively associated with willingness to grant undeserved authorship (P<0.04). Although these results do not controvert research demonstrating the effectiveness of ethics courses during professional education, they indicate that the research environment is a powerful component of a trainee’s experience and ethical development. (shrink)

Purpose Intellectual honesty and integrity are the cornerstones of conducting any form of research. Over the last few years, scholars have shown great concerns over questionable research practices (QRPs) in academia. This study aims to investigate the questionable research practices amongst faculty members of medical and dental colleges in Pakistan. Method A descriptive multi-institutional online survey was conducted from June-August 2022. Based on previous studies assessing research misconduct, 43 questionable research practices in four domains: Data (...) collection & storage, Data analysis, Study reporting and Collaboration & authorship were identified and investigated. Descriptive (Frequencies, Percentages, Mean, SD) and Inferential (chi square) statistics were calculated. Results A total of 654 faculty members responded. Every respondent reported committing at least one QRP in their career. The most common QRPs included deliberately failing to mention funding, publishing program evaluation data not meant for research purposes or approved by an ethical body, inappropriately storing identifiable information and non-disclosure of any conflicts. There was significant association of age, gender and academic rank with QRPs in ‘Data collection and storage’ and ‘Data Analysis’ domains. Conclusion Medical and dental faculty members participating in this study are involved in a range of questionable research practices (QRPs) in Pakistan. Their confession might have contributed to the faculty developing self-awareness and reinforcing academic integrity. There is a need for reviewing policies and practices to improve research culture. Future research should explore the factors resulting in such practices. (shrink)

As the prevalence of conflict and fragility continue to rise around the world, research is increasingly heralded as a solution. However, current ethical guidelines for working in areas suffering from institutional and social fragility, insecurity or violent conflict have been heavily critiqued as highly abstract; focussed only on data collection; detached from the realities of academia in the Global South; and potentially extractive. This article seeks to respond to that assessment by spotlighting some of the most prevalent challenges (...) researchers face in the pursuit of ethical working practices. It explores the material and epistemic injustices that often shape and underpin research structures and relationships in these contexts. The paper draws on the authors’ experiences of research in conflict-affected and fragile contexts over the last fifteen years and on workshop discussions with researchers based in fragile and conflict-affected contexts conducted in Amman, Bogotá and Dhaka in 2019-2020. The paper works from the premise that achieving ethical research in fragile spaces is not dependent solely on activity at the site of research, but also on decisions made across the entire ecosystem of a research project. It therefore interrogates the full research landscape, from funding models, to research design (including research topics, partnerships, methods, participant selection, and researcher positionality), to dissemination plans and ethical gatekeeping. The paper critically reflects on inequities in the processes of knowledge production about conflict and fragility and the key ethical challenges that researchers encounter. It highlights the need for further guidance, support and accountability to ensure ethical research practices. (shrink)

This article examines whether and how a particular research practice is overseen and supervised, and by whom. This investigation fills notable gaps in the literature on science, including a lack of emphasis on larger sociopolitical structures, a neglect of regulation, and indifference toward ethics. The author focuses on the oversight of a particular research practice; data editing; which embodies qualities that are intriguing to sociologists of science: invisibility, uncertainty, heterogeneity, and reliance on tacit knowledge. These characteristics (...) pose unique challenges to oversight efforts. An analysis of in-depth interviews with gatekeepers reveals that although the methodological and ethical implications of data editing strategies can be substantial, oversight of such practices falls outside the stages and domains of current gatekeeping activity. These findings serve as the basis for recommendations to ensure data integrity while maintaining the professional autonomy of researchers. (shrink)

This article presents results from the national survey conducted in 2018 for the project Research Integrity in Norway. A total of 31,206 questionnaires were sent out to Norwegian researchers by e-mail, and 7291 responses were obtained. In this paper, we analyse the survey data to determine attitudes towards and the prevalence of fabrication, falsification and plagiarism and contrast this with attitudes towards and the prevalence of the more questionable research practices surveyed. Our results show a relatively low percentage (...) of self-reported FFPs, while the number of researchers who report having committed one of the QRPs during the last three years reached a troublesome 40%. The article also presents a ranking of the perceived severity of FFP and QRPs among Norwegian researchers. Overall, there is a widespread normative consensus, where FFP is considered more troublesome than QRPs. (shrink)

Graduate and undergraduate students were asked to evaluate the ethicality and practicality of the lead character in several case scenarios. Students' responses indicated they believed practicality was more important than ethicality. The majority of students were able to determine the correct ethicality of the cases presented to them. The authors conclude that more research is needed in the antecedents of a student's value system.

This paper draws on the experience of one research project in action to evaluate the usefulness of research ethics frameworks when the environment surrounding project negotiation, data collection and dissemination is seriously disturbed by critical incidents. The paper questions the lack of emphasis in research ethics codes on the competence and capacity of agencies when commissioning and sponsoring research. Using events that surrounded one project, the paper researches the research. It explores what impacted on the (...) creation of the context for ethical and effective research and how the researchers responded to the ethical challenges that emerged. Different theoretical understandings and ethical models are drawn upon to explore how a research team translated ethical research in theory into ethical research in practice within an organization in turmoil. (shrink)

This article is autoethnographic, based upon the authors’ experiences and reflections upon encountered moments of ethical tension whilst conducting research in rural Malawi. Given that knowledge production, as a process, has been marred by colonial forms of power, the project was underpinned by efforts to achieve a decolonial approach to the research, including the research ethics. The authors share of their endeavours to counterbalance the challenges of power asymmetries whilst researching and working with an Indigenous community (...) whose reality can be marginalised by the Western canon. The authors attempted to ensure that the values and customs of the researched community were respected and central to the research approach. When researchers are guided by local culture and customs, the participants are able to drive the research approach, incorporate their voice and share knowledge that is true to their context and reality. In this way, the research study is illustrative of how an ethics of care can help to facilitate decolonial research practice. (shrink)

ABSTRACT:Legal scholars and business ethicists are interested in many of the same core issues regarding human and firm behavior. The vast amount of legal research being generated by nearly 10,000 law school and business law scholars will inevitably influence business ethics research. This paper describes some of the recent trends in legal scholarship and explores its implications for three significant aspects of business ethics research—methodology, theory, and policy.

Interview of Olga Simoroz, Sofia Dmitrenko, Evgenia Zaichenko with Viktor Malakhov on the development of ethics as a philosophical discipline in Ukraine of the 60's - 70's.

Like any discipline, bioethics is a developing field of academic inquiry; and recent trends in scholarship have been towards more engagement with empirical research. This ‘empirical turn’ has provoked extensive debate over how such ‘descriptive’ research carried out in the social sciences contributes to the distinctively normative aspect of bioethics. This paper will address this issue by developing a practical research methodology for the inclusion of data from social science studies into ethical deliberation. This methodology will (...) be based on a naturalistic conception of ethical theory that sees practice as informing theory just as theory informs practice – the two are symbiotically related. From this engagement with practice, the ways that such theories need to be extended and developed can be determined. This is a practical methodology for integrating theory and practice that can be used in empirical studies, one that uses ethical theory both to explore the data and to draw normative conclusions. (shrink)

An Institute of Medicine panel charged with reviewing the system for overseeing research involving children concluded in 2004 that Institutional Review Boards, institutions engaged in research, and study sponsors should “adopt explicit written policies on acceptable and unacceptable types and amounts of payments related to [children’s] research participation.” We previously reported data on practices and policies in the U.S. regarding payments to children who participate in research and their parents. Here, we report additional results from our (...) study and identify some of the decisions that must be made in developing payment plans and on which payment policies will be expected to offer guidance. We conclude that further conceptual analysis and empirical research are necessary before IRBs, institutions, and sponsors can develop specific rules on numerous aspects of payment. Nevertheless, payment policies that promote the ethical treatment of children in research and their parents can be developed. We propose a structure for such policies. (shrink)

Arguments in favor of greater research-practice integration in medicine have tended to be ethical, political, or pragmatic. There are good epistemic reasons to pursue greater integration, and it is important to think through these reasons in order to avoid inadvertently designing new systems in ways that replicate the epistemic elitism common within current systems. Meaningful transformation within health care is possible with close attention to all reasons in favor of greater research-practice integration, including epistemic reasons.

The ethics of research projects has become a central aspect in the discussion of how research is conceived and planned in social work and the broader social sciences. Ethics committees play an impo...

The exposure of scientific scandals and the increase of dubious research practices have generated a stream of studies on Questionable Research Practices (QRPs), such as failure to acknowledge co-authors, selective presentation of findings, or removal of data not supporting desired outcomes. In contrast to high-profile fraud cases, QRPs can be investigated using quantitative, survey-based methods. However, several design issues remain to be solved. This paper starts with a review of four problems in the QRP research: the problem (...) of precision and prevalence, the problem of social desirability bias, the problem of incomplete coverage, and the problem of controversiality, sensitivity and missing responses. Various ways to handle these problems are discussed based on a case study of the design of a large, cross-field QRP survey in the social and medical sciences in Sweden. The paper describes the key steps in the design process, including technical and cognitive testing and repeated test versions to arrive at reliable survey items on the prevalence of QRPs and hypothesized associated factors in the organizational and normative environments. Partial solutions to the four problems are assessed, unresolved issues are discussed, and tradeoffs that resist simple solutions are articulated. The paper ends with a call for systematic comparisons of survey designs and item quality to build a much-needed cumulative knowledge trajectory in the field of integrity studies. (shrink)

Purposeful infection of healthy volunteers with a microbial pathogen seems at odds with acceptable ethical standards, but is an important contemporary research avenue used to study infectious diseases and their treatments. Generally termed ‘controlled human infection studies’, this research is particularly useful for fast tracking the development of candidate vaccines and may provide unique insight into disease pathogenesis otherwise unavailable. However, scarce bioethical literature is currently available to assist researchers and research ethics committees in negotiating the (...) distinct issues raised by research involving purposefully infecting healthy volunteers. In this article, we present two separate challenge studies and highlight the ethical issues of human challenge studies as seen through a well-constructed framework. Beyond the same stringent ethical standards seen in other areas of medical research, we conclude that human challenge studies should also include: independent expert reviews, including systematic reviews; a publicly available rationale for the research; implementation of measures to protect the public from spread of infection beyond the research setting; and a new system for compensation for harm. We hope these additions may encourage safer and more ethical research practice and help to safeguard public confidence in this vital research alternative in years to come. (shrink)