Europe: The Space and Time of ReflectionOn the Complutense Research Group La Europa de la Escritura.

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)

Evidence exists that behavioral and social science researchers have been frustrated with regulations and institutional review boards (IRBs) from the 1970s through today. Making matters worse, many human participants protection instruction programs - now mandated by IRBs - offer inadequate reasons why researchers should comply with regulations and IRBs. Promoting compliance either for its own sake or to avoid penalties is contrary to the developmental aims of moral education and may be ineffective in fostering the responsible conduct of research. This (...) article explores the concept of professional virtue and argues that compliance is capable of becoming a professional virtue like scientific honesty. This requires, however, that regulatory and IRB demands contribute to human well-being and to the aims of research as a profession and that researchers, therefore, internalize the norms that underlie regulatory and IRB demands. This, in turn, requires a series of changes in the way society develops, promulgates, and enforces regulatory and IRB rules. The challenge is, simply put, to embed compliance into the world of living morality. (shrink)

Open peer commentary on the article “Developing a Dialogical Platform for Disseminating Research through Design” by Abigail C. Durrant, John Vines, Jayne Wallace & Joyce Yee. Upshot: The commentary reflects on Durrant et al. from the perspective of a conference participant. It also addresses the dynamics at the meeting point of multidisciplinary practice-led design research.

Western laws and codes of ethics frequently require that private health information be treated confidentially. However, cross-cultural research shows that it is not always easy to determine what members of a culture consider to be private or how they wish private information to be handled. This article begins by presenting an ethnographic study of patient–healer relationships in Sri Lanka; researchers were surprised to find that participants' views of health and privacy differed greatly from typical Western views, and that the privacy (...) protections they had put in place caused discomfort among participants. Building on this ethics case study, the article explores two main questions. First, can a single definition of privacy possibly do justice to the cultural variations that exist, or does a conceptual definition inevitably run the risk of ethnocentrism? Second, to what extent is strict compliance with research regulations or ethics codes ethically justifiable when following the rules will obviously cause unease in international participants? (shrink)

Participatory action research (PAR) is a form of community-driven qualitative research which aims to collaboratively take action to improve participants’ lives. This is generally achieved through cognitive, reflexive learning cycles, whereby people ultimately enhance their wellbeing. This approach builds on two assumptions: (1) participants are able to reflect on and prioritize difficulties they face; (2) collective impetus and action are progressively achieved, ultimately leading to increased wellbeing. This article complicates these assumptions by analyzing a two-year PAR project with mothers of (...) disabled children from a South African urban settlement. Participant observation notes, interviews, and a group discussion served as primary data. We found that mothers’ severe psychological stress and the strong intersectionality of their daily challenges hampered participation. Consequently, mothers considered the project ‘inactionable’. Yet, many women quickly started expressing important individual and collective wellbeing transformations. To understand these ‘unlikely’ transformations, a feminist relational account, in particular, that of relational wellbeing, proves essential. We reflect on the consequences of these findings for the dominant PAR methodology and operationalization, and propose to sensitize future PAR with marginalized women by employing relational wellbeing as an overarching ontological awareness. (shrink)

Western laws and codes of ethics frequently require that private health information be treated confidentially. However, cross-cultural research shows that it is not always easy to determine what members of a culture consider to be private or how they wish private information to be handled. This article begins by presenting an ethnographic study of patient-healer relationships in Sri Lanka; researchers were surprised to find that participants' views of health and privacy differed greatly from typical Western views, and that the privacy (...) protections they had put in place caused discomfort among participants. Building on this ethics case study, the article explores two main questions. First, can a single definition of privacy possibly do justice to the cultural variations that exist, or does a conceptual definition inevitably run the risk of ethnocentrism? Second, to what extent is strict compliance with research regulations or ethics codes ethically justifiable when following the rules will obviously cause unease in international participants? (shrink)

BackgroundAs Canadian global health researchers who conducted a qualitative study with adults with and without disabilities in Uganda, we obtained ethics approval from four institutional research ethics boards (two in Canada and two in Uganda). In Canada, research ethics boards and researchers follow the research ethics norms of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2), and the National Guidelines for Research Involving Humans as Research Participants of Uganda (NGRU) in Uganda. The preparation and implementation of this (...) qualitative research raised specific ethical issues related to research participant privacy and the importance of availability and management of financial resources.Main bodyOur field experience highlights three main issues for reflection. First, we demonstrate that, in a global health research context, methodological and logistic adjustments were necessary throughout the research implementation process to ensure the protection of study participants’ privacy, especially that of people with disabilities, despite having followed the prescribed Canadian and Ugandan ethics norms. Data collection and management plans were adapted iteratively based on local realities. Second, securing financial support as a key aspect of financial management was critical to ensure privacy through disability-sensitive data collection strategies. Without adequate funding, the recruitment of research participants based on disability type, sex, and region or the hiring of local sign language interpreters would not have been possible. Third, although the TCPS2 and NGRU underscore the significance of participants’ privacy, none of these normative documents clearly express this issue in the context of global health research and disability, nor broadly discuss the ethical issue related to financial availability and management.ConclusionsConducting research in resource limited settings and with study participants with different needs calls for a nuanced and respectful implementation of research ethics in a global health context. We recommend a greater integration in both the TCPS2 and NGRU of global health research, disability, and responsible conduct of research. This integration should also be accompanied by adequate training which can further guide researchers, be they senior, junior, or students, and funding agencies. (shrink)

Engaging patients in research has come to be viewed as a vital component of high‐quality research, and funders now regard engaging patients and other stakeholders as a core criterion for funding decisions. In response, numerous empirical and conceptual papers have emerged to guide the process of engagement. However, as Emily Largent and colleagues rightly note, the inquiry of whom to engage has received less attention. While several teams have suggested that the selection of patients for engagement is an important consideration, (...) researchers generally have little guidance on how to undertake this process. To that end, Largent and colleagues offer an important contribution to the literature. I agree with their argument regarding the centrality of critically examining which patients to engage in research and with their recommendations to maximize the positive goals of patient engagement. However, three issues warrant further consideration. (shrink)

With respect to the ethical debate about the treatment of animals in biomedical and behavioral research, Harry F. Harlow represents a paradox. On the one hand, his work on monkey cognition and social development fostered a view of the animals as having rich subjective lives filled with intention and emotion. On the other, he has been criticized for the conduct of research that seemed to ignore the ethical implications of his own discoveries. The basis of this contradiction is discussed and (...) propositions for current research practice are presented. (shrink)

Doing research in a globalized context – regardless of the discipline – requires language decisions at different stages of the research process. Many of these language decisions have ethical implications. Existing literature and ethical guidance tend to focus on ethical concerns that arise in communication with participants who use a language different from the main research language. As this article shows, language decisions with potential ethical implications can occur in many additional ways. Two questions guided this work: how do language (...) decisions and research ethics intersect at different stages of the research process, and what potential harm is related to language decisions and how can such concerns be mitigated? Relevant literature – combined with practical research experiences – show that language decisions can potentially result in harm at the conception stage of research projects, when working with participants, during data analysis, interpretation, and dissemination, as well as when managing a research project. Thus, the article highlights that the role of language-related ethical dilemmas is not only organizational (e.g., ensuring participants can understand what the research is about), but also social (e.g., developing trust and relationships in research teams) as well as ideological (e.g., awareness of power structures and diverse worldviews). In order to support researchers in globalized contexts, this article offers a reflective framework that complements regulatory guidance issued by ethical bodies and facilitates a deeper awareness of ethical implications related to language decisions in a multilingual world. (shrink)

Most public and non-profit organisations that fund health research provide the majority of their funding in the form of grants. The calls for grant applications are often untargeted, such that a wide variety of applications may compete for the same funding. The grant review process therefore plays a critical role in determining how limited research resources are allocated. Despite this, little attention has been paid to whether grant review criteria align with widely endorsed ethical criteria for allocating health research resources. (...) Here, we analyse the criteria and processes that ten of the largest public and non-profit research funders use to choose between competing grant applications. Our data suggest that research funders rarely instruct reviewers to consider disease burden or to prioritise research for sicker or more disadvantaged populations, and typically only include scientists in the review processes. This is liable to undermine efforts to link research funding to health needs. (shrink)

This article describes a process of developing, implementing and evaluating a clinical ethics support service intervention with the goal of building up a context-sensitive structure of minimal clinical-ethics in an oncology department without prior clinical ethics structure. Scholars from different disciplines have called for an improvement in the evaluation of clinical ethics support services for different reasons over several decades. However, while a lot has been said about the concepts and methodological challenges of evaluating CESS up to the present time, (...) relatively few empirical studies have been carried out. The aim of this article is twofold. On the one hand, it describes a process of development, modifying and evaluating a CESS intervention as part of the ETHICO research project, using the approach of qualitative-formative evaluation. On the other hand, it provides a methodological analysis which specifies the contribution of qualitative empirical methods to the evaluation of CESS. We conclude with a consideration of the strengths and limitations of qualitative evaluation research with regards to the evaluation and development of context sensitive CESS. We further discuss our own approach in contrast to rather traditional consult or committee models. (shrink)

A standard view would suggest that research is a neutral apolitical activity. It neutralizes external pressures by its fidelity to robust scientific methods. However, politics is an inevitable part of human knowledge. Our knowledge of the world is always mediated by human priorities. What matters is therefore a contested and political debate rather a neutral accumulation of factual data. How researchers manage this varies. Research paradigms are one way in which research engages with knowledge. They frame knowledge within epistemological and (...) ontological philosophies. In this paper, I will explore this view in relation to neo‐positivism, qualitative research, Foucault and critical realism. I will argue that if nursing knowledge is to be effective it needs to acknowledge the political, particularly in the context of neoliberalism. Healthcare systems are having to cope with a social world increasingly dominated by market fundamentalism, extreme levels of inequality and a rise in xenophobia. These forces are undermining the provision of ethically sound health care, misdirecting research practice and contributing to a discourse of dehumanization. These forces need to be challenged politically and I will argue that epistemologically diverse approaches, alongside a realist ontology can provide a way forward for nursing research. (shrink)

In European science and technology policy, various styles have been developed and institutionalised to govern the ethical challenges of science and technology innovations. In this paper, we give an account of the most dominant styles of the past 30 years, particularly in Europe, seeking to show their specific merits and problems. We focus on three styles of governance: a technocratic style, an applied ethics style, and a public participation style. We discuss their merits and deficits, and use this analysis to (...) assess the potential of the recently established governance approach of ‘Responsible Research and Innovation’ (RRI). Based on this analysis, we reflect on the current shaping of RRI in terms of ‘doing governance’. (shrink)

ABSTRACTThere is a growing body of literature describing conceptual frameworks for working with participatory visual methods. Through a global health lens, this paper examines some key themes within these frameworks. We reflect on our experiences of working with with an array of PVM to engage community members in Vietnam, Kenya, the Philippines and South Africa in biomedical research and public health. The participants that we have engaged in these processes live in under-resourced areas with high prevalence of communicable and non-communicable (...) diseases. Our paper describes some of the challenges that we have encountered while using PVM to foster knowledge exchange, build relationships and facilitate change among individuals and families, community members, health workers, biomedical scientists and researchers. We consider multiple ethical situations that have arisen through our work and discuss the ways in which we have navigated and negotiated them. We offer our reflections and learning from facil... (shrink)

This paper was delivered at the 2009 annual conference of the National Council on Ethics in Human Research. It is a reflective piece based on many years of experience with human research ethics and the role of Research Ethics Boards in human participant research.

The tension in evidence-based practice and reflective practice -- The relationship between reflection and action research -- An overview of theories of consciousness and unconsciousness -- What do we mean by creativity? -- Using metaphor and symbolism as analysis -- Infinite possibilities of knowing and transformation -- Concluding thoughts; the linkages to action research and critical creativity.

Critical reflection helps professionals to learn directly from their practice experience, so that they can improve their own work in an ongoing and flexible way - something essential in today's complex and changing organisations. It allows change to be managed in a way which enables individuals to preserve a sense of what is fundamentally important to them as professionals. It is particularly important as it can also help make sense of some fundamental issues, and so also has implications for (...) how we live our lives. However, more systematic research on critical reflection is needed to help us understand what works best for professionals in different settings. This timely work explores how critical reflection is researched, evaluated and used as a research method itself, with the aim of improving how it is taught and practised in a rigorous and transferable way. Developing a more comprehensive and multi-disciplinary view of the current state of critical reflection and the research directions which need to be taken, the book is divided into four parts. It: - Provides an overview of different perspectives on critical reflection and stimulates dialogue between them - Establishes some common platforms from which to develop further research directions - Identifies the major issues in evaluating critical reflection teaching, and main methods for doing so - Contributes to social science methodological innovations by exploring how methods based on critical reflection can be used for researching professional practice - Contains contributions from academics who are internationally known and highly experienced in different aspects of critical reflection. Researching Critical Reflectionis an important reference for all students, practitioners, and researchers - including in the areas of education, management, health and social work - who engage with critical reflection to develop their practice. (shrink)

Recent research governance documents say that the body of research evidence must reflect population diversity. The response to this needs to be more sophisticated than simply ensuring minorities are present in samples. For quantitative research looking primarily at treatment effects of drugs and devices four suggestions are made. First, identify where the representation of minorities in samples matters—for example, where ethnicity may cause different treatment effects. Second, where the representation of a particular group matters then subgroup analysis of the results (...) will usually be necessary. Third, ensuring representation and subgroup analysis will have costs; deciding on whether such representation is worthwhile will involve cost benefit analysis. Fourth, the representation of minorities should not be seen as mainly a locality issue. For qualitative research it is argued that the representation of diversity is often important. Given the small samples of many qualitative projects, however, the best way to ensure representation occurs is to allow a proliferation of such research, not to stipulate such representation in samples. (shrink)

Mobile phones play an essential role in the everyday lives and social relationships of young people. They are deeply embedded in peer interactions, not only as tools but also as references of interaction. The article is based on an empirical study, which investigates how young people interpret various situations of interaction through, and related to, mobile phones. Providing a useful heuristic to reconstruct the inherent rules, claims and expectations of such situations, Goffman’s concept of the interaction order was modified in (...) regard to youth-specific and mobile media-specific dimensions with the help of a grounded theory approach. The article deals with the methodical strategies that were applied as well as respective methodological questions that arose during the research process. In order to gain insights into the participants’ episodic and semantic knowledge about mobile media related situations, group interviews/discussions, mobile phone diaries and individual interviews were conducted. Each collection strategy is discussed in respect to its preconditions and execution. Additionally, problems regarding the role of the researcher in relation to the participants will be explicated. (shrink)

Dust is a distinctive material that, in addition to its physical properties, reveals anthropological and cultural dimensions, particularly within aesthetic contexts. In a collaborative project focused on “dust,” a theoretical-systematic approach is combined with an artistic-practical-participatory one. Philosophical reflections and artistic concepts related to the material “dust,” specific artworks involving dust, and the relationship between artwork and theory are interwoven. Thus, the text discusses various types of dust, the role of the artist, different modes of perception, cultural context, forms of (...) dust and materiality, media-specific characteristics, and questions of mediation. Throughout this process, common practices of artistic and theoretical engagement are transformed and developed. (shrink)

Researchers studying health systems in low-income countries face a myriad of ethical challenges throughout the entire research process. In this article, we discuss one of the greatest ethical challenges that we encountered during our fieldwork in West Africa: the difficulty of protecting the confidentiality of participants while locally disseminating results of health systems research to stakeholders. This reflection is based on experiences of authors involved in conducting evaluative research of interventions aimed at improving health systems in West Africa. Our (...) observation and collaboration with the research projects’ stakeholders informed our analysis. Examples from two research projects illustrate the issues raised. We found that in some cases there is a risk that local stakeholders may be able to identify research participants, or at least groups of participants, during the dissemination of results, even if they are anonymized. Four factors can interact and influence this challenge: 1) hierarchical structure, 2) small milieu, 3) immersion in a few sites, and 4) vested interests of decision-makers. For example, local stakeholders can sometimes find out when and where the data were collected. Moreover, health systems, especially rural healthcare centres, in West African countries can be small settings, so people often know each other. Some types of participants have unique characteristics or positions in the health system that may make them more easily identifiable by local stakeholders familiar with the environment. We identified a number of potential strategies that can help researchers minimize this difficulty and improve ethical research practices. These strategies pertain to the development of the study design, the process of obtaining informed consent, the dissemination of results, and the researchers’ reflexivity. Researchers must develop and adopt strategies that enable them to respect their promise of confidentiality while effectively disseminating sometimes sensitive results. Reflections surrounding ethical issues in global health research should be deepened to better address how to manage competing ethical responsibilities while promoting valuable research uptake. (shrink)

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

The graduate course in research ethics in the Graduate School for Integrative Sciences and Engineering at the National University of Singapore consists of a semester long mandatory course titled: “Research Ethics and Scientific Integrity.” The course provides students with guiding principles for appropriate conduct in the professional and social settings of scientific research and in making morally weighted and ethically sound decisions when confronted with moral dilemmas. It seeks to enhance understanding and appreciation of the moral reasoning underpinning various rules (...) and legislative constraints associated with research subjects and procedures. Further, students are trained to critically analyse cases and issues associated with scientific misconduct preparing them to act in a responsible and effective manner should they encounter such cases. The diverse background and training of the cohort also provide a unique setting and opportunity for student-initiated collaborative interdisciplinary learning. This article offers a reflective account of the course and some preliminary insights into learning outcomes. (shrink)

Research involving migrant youth involves navigating and negotiating complex challenges in order to uphold their rights and dignity, but also all while maintaining scientific rigour. COVID-19 has changed the global landscape within many domains and has increasingly highlighted inequities that exist. With restrictions focusing on maintaining physical distancing set in place to curb the spread of the virus, conducting in-person research becomes complicated. This article reflects on the ethical and methodological challenges encountered when conducting qualitative research during the pandemic with (...) Syrian migrant youth who are resettled in Canada. The three areas discussed from the study are recruitment, informed consent and managing the interviews. Special attention to culture as being part of the study’s methodology as an active reflexive process is also highlighted. The goal of this article is to contribute to the growing understanding of complexities of conducting research during COVID-19 with populations which have layered vulnerabilities, such as migrant youth. This article hopes that the reflections may help future researchers in conducting their research during this pandemic by being cognizant of both the ethical and methodological challenges discussed. (shrink)

Following the integration of artistic disciplines within the university, artists have been challenged to review their practice in academic terms. This has become a vigorous epicentre of debates concerning the nature of research in the artistic disciplines. The special issue "On Reflecting and Making in Artistic Research Practice" captures some of this debate. This editorial article presents a broad-brush outline of the debates raging in the artistic disciplines and presents three discernible trends in those debates. The trends highlight different core (...) questions: (1) Art as research: Can artistic practice represent forms of inquiry acceptable within academic settings? (2) Academically-attuned practice-led research: Can art practice and research practice cooperate as equal partners within the university context? (3) Artistic research: Can the academic notion of research be extended to include the unique results possible through artistic research? The articles in the special issue offer a discussable overview of the current stage in the development of artistic research, demonstrating how creative practice and research practice can come together. (shrink)

In European science and technology policy, various styles have been developed and institutionalised to govern the ethical challenges of science and technology innovations. In this paper, we give an account of the most dominant styles of the past 30 years, particularly in Europe, seeking to show their specific merits and problems. We focus on three styles of governance: a technocratic style, an applied ethics style, and a public participation style. We discuss their merits and deficits, and use this analysis to (...) assess the potential of the recently established governance approach of ‘Responsible Research and Innovation’. Based on this analysis, we reflect on the current shaping of RRI in terms of ‘doing governance’. (shrink)

Peirce measures the testability of scientific hypotheses by these oft-repeated standards: "money, time, energy, thought". His concept of testability is outlined and developed. It is found to be strikingly different, but not incompatible with, the positivist-empiricist concept of testability- in-principle. Peirce's concept of testability is, however, much richer than the received positivist-empiricist concept, and plays a larger, more central role in the logic of science, as Peirce sees it. In particular, Peirce's concept, in its role in his theory of the (...) economy of research, shows how the acceptance of scientific hypotheses is itself a function of economic factors, and thus is not value-neutral. (shrink)

We reflect on a decade of Responsible Research and Innovation (RRI) as a discourse emerging from the European Commission (EC) 10 years ago. We discuss the foundations for RRI, its emergence during the Seventh Framework programme and its subsequent evolution during Horizon 2020. We discuss how an original vision for RRI became framed around five so-called ‘keys’: gender, open access, science communication, ethics and public engagement. We consider the prospects for RRI within the context of the EC’s Open Science agenda (...) and Horizon Europe programme, before closing with some reflections on the contribution RRI has made to debates concerning the relationship between science, innovation and society over the last decade. (shrink)

This study reviews research about the recognition of one’s own face and discusses scientific techniques to investigate differences in brain activation when looking at familiar faces compared to unfamiliar ones. Our analysis highlights how people do not possess a perception of their own face that corresponds precisely to reality, and how the awareness of one’s face can also be modulated by means of the enfacement illusion. This illusion allows one to maintain a sense of self at the expense of a (...) precise discrimination of self-face. The internal dynamics of different brain processes, associated with the construction of bodily identity and the sense of self and capable of integrating signals from different sensory channels, particularly visual and tactile, create a mirror-mask effect. According to this effect, the self-face reflected by a mirror becomes a mask for the self, which has the features of the subject’s face, but nonetheless does not correspond perfectly to its characteristics. This poses interesting questions about the nature and construction of one’s self, as self-face reflections allow the mind to mediate between analogue and virtual reality, between past and future events, between memories and plans of action and, most importantly, between beliefs about our identities. (shrink)

Domestic and sexual violence research has traditionally been associated with feminist qualitative methodology; however, quantitative methods are increasingly used by feminists in research examining the prevalence of and issues related to rape and sexual assault, either as standalone methods or in combination with other, qualitative methods (i.e. mixed methods). Freedom of Information (FOI) requests are a data collection tool that allow citizens to obtain data held by public authorities in the UK and are particularly useful for uncovering information on marginalised (...) groups who may be difficult to recruit in qualitative research. Whilst they are frequently used by journalists, their potential is yet to be fully realised by social researchers. This paper reflects on the use of Freedom of Information requests in a mixed-method feminist study exploring sexual violence against people aged 60 years and over. (shrink)

This paper aims to reflect upon ethical dilemmas arising from educational research in humanitarian contexts, particularly when involving children. In recognition of the paucity of knowledge on how...

In Brazil, the epicenter of the Zika crisis, brown, black, and indigenous poor women living in municipalities with scarce resources were disproportionally affected. The gendered consequences of the epidemic exposed how intersectional lenses are central to understand the impact of public health emergencies in the lives of women and girls. The demand for Zika-affected children and women to be research participants is relevant for an ethical analysis of participant protection procedures during a crisis. We investigated how women experienced research participation (...) by analyzing their narratives. Two-year-long longitudinal qualitative study in Brazilian sites located in the epidemic's epicenter was performed using mixed methods: ethnography with women from two distinct states and individual semi-structured interviews with five women in different Zika-affected states, four of which were community leaders. All women in the study were mothers or grandmothers of Zika-affected children. Thematic analysis was used for data evaluation. Women perceived being pressured to participate in research and a lack of benefit sharing. Structural determinants of gender inequality, such as its effect on power distribution, were found to impact research participant protection. Formal procedures for research protocols approvals were insufficient in protecting participants because these instruments were unable to account for structural aspects. Communitarian mobilization, through WhatsApp groups, was found to be an important mechanism to create conditions to challenge oppressive structures. Strengthening public health, effective community-based participation in research planning and implantation of ethical strategies that promotes gender equality can have transformative effect on unequal power structures and promote participant protection. (shrink)

An ethics reflection group is one of a range of ethics support services developed to better handle ethical challenges in healthcare. The aim of this article is to evaluate the implementation process of interdisciplinary ERGs in psychiatric and general hospital departments in Denmark. To our knowledge, this is the first study of ERG implementation to include both psychiatric and general hospital departments. The implementation and evaluation strategies are inspired by action research, using a qualitative approach and systematic text condensation (...) of 28 individual interviews and 4 focus groups with clinicians, ethics facilitators and ward managers. The implementation process was influenced by both structural factors and factors related to clinicians having different values, interests and experiences. Structural barriers and promotors in the process to implement ERG included the following sub-categories: Organizational factors, recruitment and training of ethics facilitators, the deliberation model, planning and recruitment of participants to the ERGs, the support of the ward managers and the project group. Barriers and promotors found among clinicians included the following sub-categories: Expectations and pre-understandings of ERGs, understandings of a physician’s job, challenges experienced by ethics facilitators. At the end of the study, when it was decided that the ERGs should be continued, the implementation strategies were remodeled by the participants to meet new challenges. The study of ERG implementation identified important structural and professional barriers and promotors that are likely to be relevant to anyone wanting to implement ethics support services across various types of healthcare services. (shrink)

Research concerned with human beings is always an interference of some kind, thus posing ethical dilemmas that need justification of procedures and methodologies. It is especially true in social work when facing mostly sensitive populations and sensitive issues. In the process of conducting a research on the emotional life histories of Israeli men who batter their partners, some serious ethical questions were evoked such as (a) Did the participants really give their consent? (b) What are the limits of the (...) class='Hi'>researcher-participants relationship and who decides them? (c) For whom is the study beneficial? and (d) To what degree did the methodology fit with the participants? In this article, I discuss the Socratic idea of truth revealed through dialogue and the idea of reciprocity that was developed in Buber's (1949) ethics of dialogue and Habermas' (1990) communicative ethics. The 3 essential conclusions drawn from the ethical questions raised and the discussion of the thinkers that are mentioned previously are (a) dialogical methodology is ethically justified; (b) dynamic interactions give a more holistic perspective of the human nature, thus enriching the field; and (c) through dialogical methodology both researcher and participant profit from growth of knowledge, which is a key for empowerment and change. (shrink)

Research-oriented universities are known for prolific research activity that is often supported by students in faculty-guided research. To maintain ethical standards, universities require on-going training of both faculty and students to ensure Responsible Conduct of Research (RCR). However, previous research has indicated RCR-based training is insufficient to address the ethical dilemmas that are prevalent within academic settings: navigating issues of authorship, modeling relationships between faculty and students, minimization of risk, and adequate informed consent. U.S. universities must explore ways to identify (...) and improve RCR concerns for current (faculty) and future researchers (students). This article reports the findings of a self-study (_N_ = 50) of research stakeholders (students and faculty) at a top tier research institution. First, we report on their perceived importance of applying RCR principles. Second, we explore relationships between stakeholder backgrounds (e.g., prior training, field, and position) and how they ranked the degree of ethical concerns in fictitious vignettes that presented different unethical issues university students could encounter when conducting research. Vignette rankings suggested concerns of inappropriate relationships, predatory authorship and IRB violations which were judged as most unethical, which was dissimilar to what sampled researchers reported in practice as the most important RCR elements to understand and adhere to for successful research. Regression models indicated there was no significant relationship between individuals’ vignette ethics scores and backgrounds, affirming previous literature suggesting that training can be ineffectual in shifting researcher judgments of ethical dilemmas. Recommendations for training are discussed. (shrink)

This paper explores the critical roles of researchers in research involving vulnerable populations. Its purpose is to reflect on the complex nature of vulnerability of Bhutanese refugee women who had resettled in Australia involved in research looking at the barriers to accessing preventive cancer screening. First, we describe the vulnerabilities considered prior to the research study and the actions taken to protect participants while the study was conducted. Second, we discuss those vulnerabilities that we did not anticipate, but were subsequently (...) revealed during the study and consequently included in the study findings. These vulnerabilities should be considered for future research involving similar populations. It is important for researchers to use appropriate research designs that enable the voice of vulnerable people to be heard and to use research strategies that ensure findings are robust and participants are protected and empowered. Potential implications include the development of research practices that take account of the sources of vulnerabilities and consideration of how different vulnerabilities can evolve and affect findings and research recommendations. (shrink)

This paper is a critical reflection on the concepts of Responsible Innovation (RI) and Responsible Research and Innovation (RRI). We offer an account of the emergence of these related but different accounts of responsible innovation that have recently been adopted by funders. We further report on our exploration of the knowledge and understanding of these concepts through the views of senior scientists involved in synthetic biology research projects. Though most of our respondents struggled to provide a clear account of (...) RI/RRI we identified that existing “practices of responsibility” include many aspects of RI/RRI but that this often went unrecognized as such. Most respondents associated RI/RRI with risk avoidance. While some visions of RI/RRI see scientists as taking an active role in shaping the future of innovation, we suggest that it is not for such individuals to take decisions alone on the types of futures a society should have available to it. (shrink)