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)

Introduction -- Boundaries and battlegrounds : negotiating formal ethical approval for research with children and young people -- Ethical spaces and places -- The rights of participation and the realities of inclusion -- The illusion of autonomy : from agency to interdependency -- Ramifications of category entitlement : in what ways does who we are determine what we say? -- Privileging voices -- Conclusion.

Because of historical mistreatment of ethnic minorities by research and medical institutions, it is particularly important for researchers to be mindful of ethical issues that arise when conducting research with ethnic minority populations. In this article, we focus on the ethical issues related to the inclusion of ethnic minorities in clinical trials of psychosocial treatments. We highlight 2 factors, skepticism and mistrust by ethnic minorities about research and current inequities in the mental health care system, (...) that researchers should consider when developing psychosocial interventions studies that include ethnic minorities. (shrink)

Britain’s Economic and Social Research Council offered criteria for excellence in research which appear to express a shared basic idea of research–as–dialogue. This approach does not appear to be met very well by business ethics research in the USA or the UK, but it was seen to be impressively present in some of the German contributions to the European Business Ethics Network conference held in Frankfurt last year. Dr Collier analyses the conditions which may underlie this (...) difference of approach and considers the contribution of modern “discourse ethics to the process of dialogue, concluding that dialogue “is an essential characteristic of research excellence”, and that without it we therefore fail to meet both our own standards and the needs of the business community”. Dr Collier is Lecturer in Management Studies the Judge Institute of Management Studies at the University of Cambridge, and Fellow of Lucy Cavendish College. (shrink)

This case study article draws upon experiences of a doctoral student and supervisor to reflect on the way in which we construct ethical narratives around our research. We seek to draw attention to the manner in which strict adherence to ERB guidelines can be problematic and risks causing more harm than it seeks to mitigate. We aim to show that we as researchers should focus on the potential harm caused to particularly vulnerable participants and draw attention to the (...) need to refocus conceptions of ethics away from a narrow, bureaucratic framework and towards moral concerns so as to avoid causing undue harm. (shrink)

Evaluation of clinical ethical case consultations has been discussed as an important research task in recent decades. A rigid framework of evaluation is essential to improve quality of consultations and, thus, quality of patient care. Different approaches to evaluate those services appropriately and to determine adequate empirical endpoints have been proposed. A key challenge is to provide an answer to the question as to which empirical endpoints—and for what reasons—should be considered when evaluating the quality of a service. (...) In this paper, we argue for an approach that adopts the role of ethics consultants as its point of departure. In a first step, we describe empirical and ethical characteristics of evaluating clinical ethical case. We show that the mode of action and the explicit normative character of the interventions constitute two characteristics which pose challenges to the selection of appropriate quality criteria and require special attention. In a second step, we outline the way in which an analysis of the role of ethics consultants in the context of a clinical ethical case consultation services can account for the existing challenges by linking empirically measurable endpoints with normative theory. Finally, we discuss practical implications of our model for evaluation research. (shrink)

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)

This book present research in ethics with topics including a step-by-step guide to students; wellbeing and disadvantage; ethical disposition of accounting and business management students; collegiality of journals and self-citation on annual bibliometric scorings; trends of tainted publications and their authors' publication profiles; from bioethics to biopolitics and the limits of liberalism.

This paper addresses the growing concern over violation of research ethics in marketing, in particular rights of human subjects in fieldwork, notably the right to informed consent; right to privacy and confidentiality; and right not to be deceived or harmed as a result of participation in a research. The paper highlights the interaction of the three main parties involved in most marketing research: the sponsoring organization (client or user), researcher, and participant in the survey, focusing on researcher’s (...) ethical responsibilities in interacting with human subjects in surveys. The paper stresses the importance of ethical integrity in marketing research and emphasizes the need to establish a universal model for regulatory requirements and well institutionalized practice of ethical research. (shrink)

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

We review and synthesize over two decades of research on ethical culture in organizations, examining eighty-nine relevant scholarly works. Our article discusses the conceptualization of ethical culture in a cross-disciplinary space and its critical role in ethical decision-making. With a view to advancing future research, we analyze the antecedents, outcomes, and mediator and moderator roles of ethical culture. To do so, we identify measures and theories used in past studies and make recommendations. We propose, (...) inter alia, the use of validated measures, application of a wider range of theories, adoption of longitudinal studies, and study of group-level data in organizations. We explore research possibilities in new and emergent forms of organizations, ways of organizing work, and technology in ethical decision-making, such as the role of artificial intelligence. We also recommend the study of a broad range of leadership styles and their influence in shaping ethical cultures in organizations. (shrink)

The burgeoning field of biomedical research involving the mixture of human and animal materials has attracted significant ethical controversy. Due to the many dimensions of potential ethical conflict involved in this type of research, and the wide variety of research projects under discussion, it is difficult to obtain an overview of the ethical debate. This paper attempts to remedy this by providing a systematic review of ethical reasons in academic publications on human-animal chimera (...) research. We conducted a systematic review of the ethical literature concerning human-animal chimeras based on the research question: “What ethical reasons have been given for or against conducting human-animal chimera research, and how have these reasons been treated in the ongoing debate?” Our search extends until the end of the year 2017, including MEDLINE, Embase, PhilPapers and EthxWeb databases, restricted to peer-reviewed journal publications in English. Papers containing ethical reasons were analyzed, and the reasons were coded according to whether they were endorsed, mentioned or rejected. Four hundred and thirty-one articles were retrieved by our search, and 88 were ultimately included and analyzed. Within these articles, we found 464 passages containing reasons for and against conducting human-animal chimera research. We classified these reasons into five categories and, within these, identified 12 broad and 31 narrow reason types.15% of the retrieved passages contained reasons in favor of conducting chimera research, while 85% of the passages contained reasons against it. The reasons against conducting chimera research fell into four further categories: reasons concerning the creation of a chimera, its treatment, reasons referring to metaphysical or social issues resulting from its existence and to potential downstream effects of chimera research. A significant proportion of identified passages fell under Category C. We hope that our results, in revealing the conceptual and argumentative structure of the debate and highlighting some its most notable tendencies and prominent positions, will facilitate continued discussion and provide a basis for the development of relevant policy and legislation. (shrink)

Decapod crustaceans are faceless animals with five pairs of legs, an external skeleton and multiple nerve centres rather than a single brain. They include common seafood species such as crayfish, crabs, lobsters, prawns and shrimp. These characteristics make them difficult to empathise with and consequently legal protection of decapods ranges from strong, through circumstantial to non-existent. Whether they are capable of experiencing pain depends on definitions and the requirement for absolute proof of an inherently subjective psychological experience. Yet like other (...) animals, decapods fulfil neuroanatomical, pharmacological and behavioural criteria that are consistent with a pain response. Whether they experience stress, harm and distress is less controversial because these conditions are more measurable than the pain response. To balance animal welfare concerns with scientific merit whilst providing confidence for the growing public awareness of crustacean welfare, use of decapod crustaceans in research should require ethical review. (shrink)

In the context of academic research, a diversity of ethical issues, conditioned by the different roles of members within these institutions, arise. Previous studies on this topic addressed mainly the perceptions of researchers. However, to our knowledge, no studies have explored the transversal ethical issues from a wider spectrum, including other members of academic institutions as the research ethics board (REB) members, and the research ethics experts. The present study used a descriptive phenomenological approach to (...) document the ethical issues experienced by a heterogeneous group of Canadian researchers, REB members, and research ethics experts. Data collection involved socio-demographic questionnaires and individual semi-structured interviews. Following the triangulation of different perspectives (researchers, REB members and ethics experts), emerging ethical issues were synthesized in ten units of meaning: (1) research integrity, (2) conflicts of interest, (3) respect for research participants, (4) lack of supervision and power imbalances, (5) individualism and performance, (6) inadequate ethical guidance, (7) social injustices, (8) distributive injustices, (9) epistemic injustices, and (10) ethical distress. This study highlighted several problematic elements that can support the identification of future solutions to resolve transversal ethical issues in research that affect the heterogeneous members of the academic community. (shrink)

Background: Research involving adults lacking mental capacity relies on the involvement of a proxy or surrogate, although this raises a number of ethical concerns. Empirical studies have examined attitudes towards proxy decision-making, proxies’ authority as decision-makers, decision accuracy, and other relevant factors. However, a comprehensive evidence-based account of proxy decision-making is lacking. This systematic review provides a synthesis of the empirical data reporting the ethical issues surrounding decisions made by research proxies, and the development of a (...) conceptual framework of proxy decision-making for research. Methods: A systematic review was conducted according to PRISMA guidelines. Databases including MEDLINE, EMBASE, and CINAHL were searched using a combination of search terms, and empirical data from eligible studies were retrieved. The review followed the framework synthesis approach to refine and develop a conceptual framework. Results: Thirty-four studies were included in the review. Two dimensions of proxy decision-making emerged. The ethical framing criteria of decision-making used by proxies: use of a substituted judgement, use of a best interests approach, combination of substituted judgement and best interests, and ‘something else’, and the active elements of proxy decision-making: ‘knowing the person’, patient-proxy relationship, accuracy of the decision, and balancing risks, benefits and burdens, and attitudes towards proxy decision-making. Interactions between the framing criteria and the elements of decision-making are complex and contextually-situated. Conclusions: The findings from this systematic review challenge the accepted reductionist account of proxy decision-making. Decision-making by research proxies is highly contextualized and multifactorial in nature. The choice of proxy and the relational features of decision-making play a fundamental role: both in providing the proxy’s authority as decision-maker, and guiding the decision-making process. The conceptual framework describes the relationship between the framing criteria used by the proxy, and the active elements of decision-making. Further work to develop, and empirically test the proposed framework is needed. (shrink)

In business ethics, there is a large body of literature focusing on the conditions, factors, and influences in the ethical decision-making processes. This work builds upon the past critical reviews by updating and extending the literature review found in Craft’s :221–259, 2013) study, extending her literature review to include a total of 141 articles. Since past reviews have focused on categorizing results based upon various independent variables, we instead synthesize and look at the trends of these based upon the (...) four ethical decision making categories: Awareness, Behavior, Judgment, and Intention. We focus on the moderation and mediation effects found within these studies and provide an in-depth analysis of future trends. Furthermore, we also highlight key statistical and methodological concerns, outline overarching trends, and directions of future research in empirical ethical decision making. (shrink)

BackgroundGenome-wide association studies (GWAS) provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia (...) and Oceania.DiscussionWe explore ethical issues in three key areas: protecting the interests of research participants, regulation of international collaborative genomics research and protecting the interests of scientists in low income countries. With regard to participants, important challenges are raised about community consultation and consent. Genomics research raises ethical and governance issues about sample export and ownership, about the use of archived samples and about the complexity of reviewing such large international projects. In the context of protecting the interests of researchers in low income countries, we discuss aspects of data sharing and capacity building that need to be considered for sustainable and mutually beneficial collaborations.SummaryMany ethical issues are raised when genomics research is conducted on populations that are characterised by lower average income and literacy levels, such as the populations included in MalariaGEN. It is important that such issues are appropriately addressed in such research. Our experience suggests that the ethical issues in genomics research can best be identified, analysed and addressed where ethics is embedded in the design and implementation of such research projects. (shrink)

Hank Greely’s target article, “Human Brain Surrogates Research: The Onrushing Ethical Dilemma” reviews the manifold scientific and ethical questions surrounding models of human brains used i...

BackgroundAn increasing number of studies utilize intracranial electrophysiology in human subjects to advance basic neuroscience knowledge. However, the use of neurosurgical patients as human research subjects raises important ethical considerations, particularly regarding informed consent and undue influence, as well as subjects’ motivations for participation. Yet a thorough empirical examination of these issues in a participant population has been lacking. The present study therefore aimed to empirically investigate ethical concerns regarding informed consent and voluntariness in Parkinson’s disease patients (...) undergoing deep brain stimulator (DBS) placement who participated in an intraoperative neuroscience study.MethodsTwo semi-structured 30-minute interviews were conducted preoperatively and postoperatively via telephone. Interviews assessed participants’ motivations for participation in the parent intraoperative study, recall of information presented during the informed consent process, and participants’ postoperative reflections on the research study.ResultsTwenty-two participants (mean age = 60.9) completed preoperative interviews at a mean of 7.8 days following informed consent and a mean of 5.2 days prior to DBS surgery. Twenty participants completed postoperative interviews at a mean of 5 weeks following surgery. All participants cited altruism or advancing medical science as “very important” or “important” in their decision to participate in the study. Only 22.7% (n = 5) correctly recalled one of the two risks of the study. Correct recall of other aspects of the informed consent was poor (36.4% for study purpose; 50.0% for study protocol; 36.4% for study benefits). All correctly understood that the study would not confer a direct therapeutic benefit to them.ConclusionEven though research coordinators were properly trained and the informed consent was administered according to protocol, participants demonstrated poor retention of study information. While intraoperative studies that aim to advance neuroscience knowledge represent a unique opportunity to gain fundamental scientific knowledge, improved standards for the informed consent process can help facilitate their ethical implementation. (shrink)

(2009). Ni chicha ni limoná: Ethical Dilemmas of a Sibling on Doing Disability Research in Ecuador. Ethics and Social Welfare: Vol. 3, No. 1, pp. 87-94.

Background Randomized controlled trials are central to generating knowledge about effectiveness of interventions as well as risk, protective and prognostic factors related to diseases in emergency newborn care. Whether prospective participants understand the purpose of research, and what they perceive as the influence of the context on their understanding of the informed consent process for RCTs in emergency obstetric and newborn care are not well documented. Methods Conceptual review. Discussion Research is necessary to identify how the illnesses may (...) be prevented, to explore the causes, and to investigate what medications could be used to manage such illness. Voluntary informed consent requires that prospective participants understand the disclose information about the research, and use this to make autonomous informed decision about participation, in line with their preferences and values. Yet the emergency context affects how information may be disclosed to prospective research participants, how much participants may comprehend, and how participants may express their voluntary decision to participate, all of which pose a threat to the validity of the informed consent. I challenge the claim that the ‘understanding’ of research is always necessary for ethical informed consent for research during emergency care. I argue for reconceptualization of the value of understanding, through recognition of other values that may be equally important. I then present a reflective perspective that frames moral reflection about autonomy, beneficence and justice in research in emergency research. Conclusion While participant ‘understanding’ of research is important, it is neither necessary nor sufficient for a valid informed consent, and may compete with other values with which it needs to be considered. (shrink)

Here we describe how more important findings were obtained in a delirium study by using an informal assessment of mental capacity, and, in those who lacked capacity, obtaining consent later when or if capacity returned or a proxy was found. From a total of 233 patients 23 patients lacked capacity as judged by our informal capacity judgment and 210 did not. Of those who lacked capacity, 13 agreed to enter in the study. Six of them regained capacity later. When these (...) 13 participants were excluded from analysis, significant findings were no longer evident. These results show that by the inclusion of subjects who lacked capacity the results of analyses of the condition from whish they suffer are altered. We suggest that this approach to the study of delirium is more ethical than the usual system of strict exclusion of people who lack capacity to give consent and for whom assent is not available. (shrink)

Recent national calls for ethical, legal, and social implications (ELSI) research to “assess and address how ethical, historical, social, economic, legal, regulatory, socio-cultural, and contextual...

For many decades, access to human biological samples, such as cells, tissues, organs, blood, and sub-cellular materials such as DNA, for use in biomedical research, has been central in understanding the nature and transmission of diseases across the globe. However, the limitations of current ethical and regulatory frameworks in sub-Saharan Africa to govern the collection, export, storage and reuse of these samples have resulted in inconsistencies in practice and a number of ethical concerns for sample donors, researchers (...) and research ethics committees. This paper examines stakeholders’ perspectives of and responses to the ethical issues arising from these research practices. (shrink)

Given that health systems research involves different aims, approaches, and methodologies as compared to more traditional clinical trials, the ethical issues present in HSR may be unique or particularly nuanced. This article outlines eight pertinent ethical issues that are particularly salient in HSR and argues that the ethical review process should be better tailored to ensure more efficient and appropriate oversight of HSR with adequate human protections, especially in low- and middle-income countries. The eight ethical (...) areas we discuss include the nature of intervention, types of research subjects, units of intervention and observation, informed consent, controls and comparisons, risk assessment, inclusion of vulnerable groups, and benefits of research. HSR involving human participants is necessary to ensure health systems strengthening and quality of care and to guide public policy intelligently. Health systems researchers must carefully define their intent and goals and openly clarify the values that may influence the premises and design of protocols. As new types of population-level research activities become more commonplace, it is critical that institutional review board and research ethics committee review processes evolve to evaluate these research protocols in ways that address the nuanced features of these studies. (shrink)

Over the past decade, ethical leadership has increasingly become one of the most popular topics in the areas of leadership and business ethics. As a result, there now exists a substantial body of empirical research addressing ethical leadership issues, but the findings reported by this body of research are highly fragmented. The topic has advanced to the stage where a review and synthesis of existing literature can provide great value and help move the scholarly conversation forward. (...) The primary purposes of this article are to review empirical findings from the ethical leadership literature utilizing a framework consisting of the antecedents, mediators, moderators and outcomes of ethical leadership, and suggest a set of interesting research opportunities, thereby facilitating future investigation. We base our synthesis on a review of 62 empirical studies on ethical leadership that were published between 2005 and mid-2015. (shrink)

Tuberculosis (TB) is a potentially fatal infectious disease that, in Aotearoa New Zealand (NZ), inequitably affects Asian, Pacific, Middle Eastern, Latin American, and African (MELAA), and Māori people. Medical research involving genome sequencing of TB samples enables more nuanced understanding of disease strains and their transmission. This could inform highly specific health interventions. However, the collection and management of TB isolate samples for research are currently informed by monocultural biomedical models often lacking key ethical considerations. Drawing on (...) a qualitative kaupapa Māori–consistent study, this paper reports on preliminary discussions with groups of Māori, Pacific, and Afghan people in NZ, whose communities have been harmed by TB and TB stigma. Participants’ discussions highlight key concerns and meanings that ought to inform the development of guidelines and a more robust consultative process for the governance of how TB isolate samples are collected and used both retrospectively and in future research. We argue for ethical processes to be culturally nuanced and community-generated, flexible and meaningful, and situated in relation to the physical and symbolic effects of TB. We discuss the significance of Indigenous data sovereignty, rights, and kāwanatanga (governorship) in shaping a multicultural data sovereignty model. (shrink)

BackgroundDespite its ubiquity in academic research, the phrase ‘ethical challenge(s)’ appears to lack an agreed definition. A lack of a definition risks introducing confusion or avoidable bias. Conceptual clarity is a key component of research, both theoretical and empirical. Using a rapid review methodology, we sought to review definitions of ‘ethical challenge(s)’ and closely related terms as used in current healthcare research literature.MethodsRapid review to identify peer-reviewed reports examining ‘ethical challenge(s)’ in any context, extracting (...) data on definitions of ‘ethical challenge(s)’ in use, and synonymous use of closely related terms in the general manuscript text. Data were analysed using content analysis. Four databases (MEDLINE, Philosopher’s Index, EMBASE, CINAHL) were searched from April 2016 to April 2021.Results393 records were screened, with 72 studies eligible and included: 53 empirical studies, 17 structured reviews and 2 review protocols. 12/72 (17%) contained an explicit definition of ‘ethical challenge(s), two of which were shared, resulting in 11 unique definitions. Within these 11 definitions, four approaches were identified: definition through concepts; reference to moral conflict, moral uncertainty or difficult choices; definition by participants; and challenges linked to emotional or moral distress. Each definition contained one or more of these approaches, but none contained all four. 68/72 (94%) included studies used terms closely related to synonymously refer to ‘ethical challenge(s)’ within their manuscript text, with 32 different terms identified and between one and eight different terms mentioned per study.ConclusionsOnly 12/72 studies contained an explicit definition of ‘ethical challenge(s)’, with significant variety in scope and complexity. This variation risks confusion and biasing data analysis and results, reducing confidence in research findings. Further work on establishing acceptable definitional content is needed to inform future bioethics research. (shrink)

There has been growing consensus to develop relevant guidance to improve the ethical review of global health policy and systems research and address the current absence of formal ethics guidance.

This article concerns the ways in which authors from various fields conceptualise the ethical issues arising in the conduct of research. We reviewed critically and systematically the literature concerning the ethics of conducting research in order to engage in a reflection about the vocabulary and conceptual categories used in the publications reviewed. To understand better how the ethical issues involved in conducting research are conceptualised in the publications reviewed, we 1) established an inventory of the (...) conceptualisations reviewed, and 2) we critically assessed them. We found that the publications reviewed mostly showed examples of descriptive ethics, in that most authors describe ethical issues without reflecting much on them, which could be explained both by 1) a lack of ethical education in research contexts, and 2) by the fact that we do not know what researchers know (or do not) about ethical issues. Additionally, the definitions identified in the publications are scarce and at times imprecise, but this seems more to point out the ethical vocabulary’s difficulties in certain contexts. Further, very few authors offer proper conceptualisations of the ethical issues arising in conducting research. When dealing with vast arrays of ethical issues to conceptualise, perhaps one ought to remember that some typologies already exist that could guide further reflection and help understand other realities for which the current ethical vocabulary may be lacking. We believe that combining the reviewed typologies, both with other well-developed typologies and critical reflection, could help support better ethical practice in conducting research. (shrink)

This article draws attention to the importance of enchantment in business ethics research. Starting from a Weberian understanding of disenchantment, as a force that arises through modernity and scientific rationality, we show how rationalist business ethics research has become disenchanted as a consequence of the normalization of positivist, quantitative methods of inquiry. Such methods absent the relational and lively nature of business ethics research and detract from the ethical meaning that can be generated through research (...) encounters. To address this issue, we draw on the work of political theorist and philosopher, Jane Bennett, using this to show how interpretive qualitative research creates possibilities for enchantment. We identify three opportunities for reenchanting business ethics research related to: moments of novelty or disruption; deep, meaningful attachments to things studied; and possibilities for embodied, affective encounters. In conclusion, we suggest that business ethics research needs to recognize and reorient scholarship towards an appreciation of the ethical value of interpretive, qualitative research as a source of potential enchantment. (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)

Agricultural research raises fundamental ethical and value questions going beyond those in other fields both because of its public funding and because its results have significant impacts on habitats and other species. Questions about the sustainability of modern agriculture, which are shared with other sectors, require us to examine alternative visions and structures. These can be seen to range from status quo preserving ideologies to change-oriented utopias. It is argued that at the national level current ideologies—which include positivistic (...) approaches and belief in the neutrality of technology—mask real structural and policy choices as well as their ethical and value implications. At the international level, the export of fossil-fuel based modes of agriculture to the developing countries raises additional structural, policy, value, and ethical issues. (shrink)

In recent years, a robust body of scholarship has emerged that examines ethical challenges facing the learning health organization model. In “Bystander Ethics and Good Samaritanism,” James Sabin and colleagues make a valuable addition to this scholarship, identifying and exploring the important question of what researchers' obligations are to patients receiving “usual care” if “that care is seen as suboptimal.” The central issue that Sabin et al. faced was whether it would be acceptable for researchers to identify patients with (...) untreated atrial fibrillation but then assign them to a control group that would not receive education about the importance of oral anticoagulation. The authors present this challenge as an issue of “bystander ethics.” To avoid being “bystanders” to identified instances of suboptimal care, the research team decided to instead identify a “delayed intervention” group for which they would not determine the members' anticoagulation status, thereby preventing them from knowing that specific patients met the criteria for oral anticoagulants but were not using them. This “workaround” approach strikes me as disingenuous. (shrink)

The peer commentaries on our Target Article, “Promoting Ethical Payment in Human Infection Challenge Studies,” offer a number of insights that will help advance the co...

Research on sexual violence is fraught with ethical and methodological challenges due to its sensitive nature. This paper describes the ethical and methodological challenges encountered in planning and conducting two exploratory studies on sexual violence that included in-depth interviews of eight female adolescent rape survivors in Ibadan and four married women in Lagos Nigeria who were raped, forced to perform sexual acts and sexually deprived. The first challenge encountered was an Institutional Review Board (IRB) requirement to obtain (...) parental permission from adolescents, when such a requirement may place the adolescent at risk if a parent was a perpetrator of sexual violence. Using arguments emphasizing the Council for International Organization for Medical Sciences guidelines helped convince the IRB to provide a waiver of parental consent. Second, the privacy required to conduct in-depth interviews for rape survivors was difficult to achieve because five of the rape survivors were apprentices who work in public settings which are typically used to conduct business in the informal sector. To overcome this challenge, interviews were conducted in safe locations, investigator's offices and homes of survivors. The culture of silence associated with sexual violence posed a challenge because it encourages perpetration of violence with impunity causing rape survivors to suffer in silence. None of the affected adolescents had sought judicial redress for rape despite availability of stringent punishment for this behaviour. Referral information was provided on where survivors could seek care. Interviews with the women could not be recorded on audio-tapes because of concerns that their partners might identify their voices from the tapes and punish them for this. Although research on sexual violence poses ethical and methodological challenges, it is not only desirable but also feasible to conduct such research in ways that ensure safety of participants. (shrink)

To assist in resolving ethical questions surrounding unregulated mHealth research, we conducted in-depth qualitative interviews with experts from four key stakeholder groups: patient/research advocates, researchers, regulatory professionals, and mobile app/device developers. They discussed challenges and potential solutions in the context of two hypothetical scenarios involving unregulated mHealth research, including notifications/permissions for research use of mHealth data, data access procedures, new primary data collection, offering individual research results, and data sharing and dissemination.

When doing research among vulnerable populations, researchers are obliged to protect their subjects from harm. We will argue that traditional ethical guidelines are not sufficient to do this, since they mainly focus on direct harms that can occur: for example, issues around informed consent, fair recruitment and risk/harm analysis. However, research also entails indirect harms that remain largely unnoticed by research ethical committees and the research community. Indirect harms do not occur during data collection, (...) but in the analysis of the data, and how the data is presented to the scientific and wider societal community. Highly stigmatized research subjects, like substance‐dependent parents, are especially at risk of encountering indirect harm, because the prejudice against them is so persistent. In this paper we discuss two forms of indirect harm. First, researchers have to be aware how their results will be preceived by society. Even when subjects are presented in an objective way, further, out of porportion stigmatization can occur. Researchers sometimes try to counteract this by whitewashing their results, at the risk of downplaying their respondents’ problems. The second risk researchers face is that their own normative judgements influence how they question such parents, report results and interpret statements. Researchers’ own normative judgements may influence the way they present their subjects. This article reviews a broad range of research that exhibits such indirect harms, discussing how and why indirect harms occur and formulating corresponding recommendations on how to prevent them. (shrink)

The earthquakes which struck Nepal’s capital in 2015 were humanitarian disasters. Not only did they inflict tragic loss of life and livelihoods, they also destroyed parts of the Kathmandu Valley’s unique UNESCO World Heritage site. These monuments were not just ornate structures but living monuments playing central roles in the daily lives of thousands, representing portals where the heavens touch earth and people commune with guiding deities. Their rehabilitation was also of economic importance as they represent a major source of (...) tourist income and employment. Unfortunately, the social and political desire for rapid reconstruction resulted in the swift removal of many traditionally constructed foundations and their replacement with modern materials without assessments of whether they contributed towards the collapse of individual monuments. These actions, combined with the wholesale removal, mixing and dumping of modern and historic debris, contributed to a second, equally destructive, cultural catastrophe – irreversible damage to Kathmandu’s Medieval fabric, in a process which frequently excluded local communities and custodians. This case study draws from our collective reflections and lessons learned from our attempts to enable equitable and ethical research partnerships between UK and Nepali colleagues as well as local communities in the debris of the Kasthamandap, Kathmandu’s eponymous monument. After briefly describing the potential of mobilising archaeologists in post-disaster contexts and outlining the challenges of undertaking research in such a setting, our case study utilises the TRUST Code to assess the character and success of our multidisciplinary collaboration in a time of crises. (shrink)

BackgroundThe COVID-19 pandemic presents significant challenges to research ethics committees (RECs) in balancing urgency of review of COVID-19 research with careful consideration of risks and benefits. In the African context, RECs are further challenged by historical mistrust of research and potential impacts on COVID-19 related research participation, as well as the need to facilitate equitable access to effective treatments or vaccines for COVID-19. In South Africa, an absent National Health Research Ethics Council (NHREC) also left (...) RECs without national guidance for a significant duration of the COVID-19 pandemic. We conducted a qualitative descriptive study that explored the perspectives and experiences of RECs regarding the ethical challenges of COVID-19 research in South Africa.MethodsWe conducted in-depth interviews with 21 REC chairpersons or members from seven RECs at large academic health institutions across South Africa that were actively involved in the review of COVID-19 related research from January to April 2021. In-depth interviews were conducted remotely via Zoom. Interviews (60–125 min) were conducted in English using an in-depth interview guide, until data saturation was achieved. Audio-recordings were transcribed verbatim and field notes were converted into data documents. Line-by-line coding of transcripts was performed, and data were organised into themes and sub-themes. An inductive approach to thematic analysis was used to analyse data.ResultsFive main themes were identified, namely: rapidly evolving research ethics landscape, extreme vulnerability of research participants, unique challenges to informed consent, challenges to community engagement during COVID-19, and overlapping research ethics and public health equity issues. Sub-themes were identified for each main theme.ConclusionsNumerous, significant ethical complexities and challenges were identified by South African REC members in the review of COVID-19 related research. While RECs are resilient and adaptable, reviewer and REC member fatigue were major concerns. The numerous ethical issues identified also highlight the need for research ethics teaching and training, especially in informed consent, as well as the urgent requirement for the development of national guidelines for research ethics during public health emergencies. Further, comparative analysis between different countries is needed to develop the discourse around African RECs and COVID-19 research ethics issues. (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)

The purpose of this study is to present a rigorous, focused review on how this field of ethical sourcing research has grown and evolved over the decades, providing implications for future research. We combine two research methodologies in this study: a systematic literature review and a citation network analysis. The former is used as a scientific tool to select the most relevant ethical sourcing articles, while the latter is then applied as a research technique (...) to analyse these selected articles. Such a combined approach allows for a rigorous investigation into this field of research in a more scientific and objective way. Based on this approach, we identify distinctive features of ethical sourcing studies such as growth trends and content issues; important articles that have played a significant role in developing this field; evolutionary paths that show how its knowledge has been created and transferred; emerging trends that have received growing attention in the recent literature; main research areas that underlie the entire ethical sourcing studies; and major implications that need to be pursued in future research. The results of this study provide not only the current status of the literature but also the patterns of evolution in this field of research, thus contributing to the existing literature. (shrink)