This paper poses questions regarding the ethical prioritisation in qualitative research studies on assessing a person's or a group's fitness to provide informed consent, arguing that this may have unwanted as well as desirable consequences, particularly in relation to rights of citizenship for socially marginalised populations who tend to be labelled vulnerable. Drawing on three theoretical perspectives (Arendt, Honneth and Bourdieu), it is suggested that the emphasis placed on a research participant's capacity to provide informed consent cannot (...) be regarded solely as a protective measure for ?vulnerable? groups, but is also bound up with their social positioning as socially ?deficient? according to liberal (classical and neo-liberal) models of citizenship. Participation in a qualitative study can be seen as a dimension of the civil and human right to freedom of expression, and this can be particularly important for those labelled vulnerable as freedom of expression is a precondition for recognition and parity of status. Nevertheless, the importance of informed consent is not rejected; instead, it is posited that the protective rights accorded to vulnerable groups in qualitative research need to be considered alongside other human goods, such as the promotion of voice, agency and active citizenship. (shrink)

This paper poses questions regarding the ethical prioritisation in qualitative research studies on assessing a person's or a group's fitness to provide informed consent, arguing that this may have unwanted as well as desirable consequences, particularly in relation to rights of citizenship for socially marginalised populations who tend to be labelled vulnerable. Drawing on three theoretical perspectives (Arendt, Honneth and Bourdieu), it is suggested that the emphasis placed on a research participant's capacity to provide informed consent cannot (...) be regarded solely as a protective measure for ‘vulnerable’ groups, but is also bound up with their social positioning as socially ‘deficient’ according to liberal (classical and neo-liberal) models of citizenship. Participation in a qualitative study can be seen as a dimension of the civil and human right to freedom of expression, and this can be particularly important for those labelled vulnerable as freedom of expression is a precondition for recognition and parity of status. Nevertheless, the importance of informed consent is not rejected; instead, it is posited that the protective rights accorded to vulnerable groups in qualitative research need to be considered alongside other human goods, such as the promotion of voice, agency and active citizenship. (shrink)

The increasing need for innovative research driven by rapid global changes gives doctoral supervisors of early-stage researchers a significant role in facilitating the ethical conduct of qualitative research. In the context of European Commission funding, the demands of research ethics and integrity place a tremendous responsibility on the supervisors of early-stage researchers involved in cross-national projects. This document study seeks to illuminate the role of the supervisors in facilitating research ethics in these projects. (...) Specifically, we describe and discuss the supervisor role associated with five approaches to doctoral supervision of qualitative research, namely those described as ‘Functional’, ‘Enculturation’, ‘Critical thinking’, ‘Emancipation’ and ‘Developing a quality relationship’. The main challenges for supervisors of cross-national research projects are the cultural and linguistic mobilisation of ethical principles in qualitative research processes and the management of the future use of open data. The results from this study have implications for planning and conducting cross-national studies within research involving human participants. These results can guide supervisors in the codification and mobilisation of ethical qualitative research in practice. (shrink)

Name der Zeitschrift: Jahrbuch für Wissenschaft und Ethik Jahrgang: 20 Heft: 1 Seiten: 237-240.

This article explores the process of university Ethical Review both as lived experience and as part of institutional governance at an English university. The article uses Blackburn's distinction between ethics and Ethics (Ethics?A Very Short Introduction, Oxford University Press, Oxford, 2001) as a framework to examine the themes of ?vulnerability?, ?power? and ?relationships?. These themes are analysed closely both within the institutional and the fieldwork contexts, attempting to include the perspectives of all those involved in the (...) class='Hi'>research ethics process. The article does not seek to draw any definitive conclusions but rather to stimulate, and add to the iterative discussion on the process of Ethical Review within institutions. Nonetheless, it does conclude by making some suggestions concerning the way in which the lived experience of ethics could better inform the practice of institutional Ethical Review. (shrink)

It is rare to find honest accounts of the difficulties and dilemmas encountered when conducting sensitive research with vulnerable research populations. This account explores some of the ethical issues raised by a qualitative interview study with lesbians and gay men about their experiences of nursing care. There is tension between the moral duty to conduct research with vulnerable and stigmatized groups in order to improve care, and the inevitable lack of resources that go with such a (...) venture. This increases the risk of harm during the process of research. The risk of harm to both the researchers and the researched is explored and the need for a support structure for both groups is raised. There is a pressing need to develop further understanding about the ways in which the dissemination of research can potentially harm already vulnerable research populations. (shrink)

Gaining ethical approval for qualitative health research and implementing all the planned research processes in a proposed study are not straightforward endeavours. The situation becomes more complex when qualitative research is conducted in a cross-national healthcare and academic context. Also, it is even exhausting when the study is student-based, as student researchers may be considered novices and inexperienced researchers, especially for field-based research. Our aim in this reflective paper is to present, reflect, and discuss (...) the experiences of a doctoral researcher in dealing with two independent institutional review boards in Canada and Ghana during an interdisciplinary Ph.D. project and the ethical dilemmas encountered while collecting data in Ghana. Based on the researcher’s experiences, it became apparent that consent and its documentation can have cultural implications in different settings; hence, institutional review boards must exercise reflexivity in their protocol review practice. Also, sharing research data with participants and institutional leaders while maintaining participant confidentiality and privacy in institutional ethnographic research requires sensitivity to bi-lateral ethical values. With the experiences shared in this paper, we advocate for a dialogic ethical review process in qualitative research where researchers and research ethics boards engage in ongoing dialogue rather than the usual prescriptive format research ethics reviews often assume. (shrink)

This timely and topical look at the role of ethics in fieldwork takes into account some of the major issues confronting qualitative researchers. The main purposes of this book are twofold: to promote an understanding of the harmful possibilities of fieldwork; and to provide ways of dealing with ethical problems and dilemmas. To these ends, examples of actual fieldwork are provided that address ethical problems and dilemmas, and posit ways of dealing with them.

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

This study sought to determine cardiologists’ degrees of ethical awareness and preferred courses of action for ethical dilemmas frequently encountered in clinical settings. For this evaluation, an online survey was created and sent to cardiologists affiliated with various academic posts in Ankara, Turkey. The survey included ten cases with various ethical considerations selected from our book, “Clinic Ethics with Cases from Cardiology.” Four possible action choices were defined for each case. Participants were asked to choose one or more of (...) these preferences. In addition, a fictional change was made in each case’s context without changing the original ethical issue, and participants were asked whether an attitude different from the first chosen one was preferred. The participation ratio was 49/185 (26%), consent ratio 47/185 (25,4%), and completion ratio 44/185 (23,7%). Nine of the ten scenario changes did not change participants’ preferred action. For most questions, action preferences were concentrated between the two options. Although legal regulations did not reduce ethical dilemmas, they clarified physicians’ action preferences. Similarly, as an obscure moral issue gained prominence, physicians were forced to draw clearer lines in their actions. External factors such as healthcare emergencies can change physicians’ ethical dilemma-solving attitudes. (shrink)

The aim of this article is to show the importance of moral sensitivity when including persons with dementia in research. The article presents and discusses ethical challenges encountered when a total of 15 persons with dementia from two nursing homes and seven proxies were included in a qualitative study. The examples show that the ethical challenges may be unpredictable. As researchers, you participate with the informants in their daily life and in the interviews, and it is not possible (...) to plan all that may happen during the research. A procedural proposal to an ethical committee at the beginning of a research project based on traditional research ethical principles may serve as a guideline, but it cannot solve all the ethical problems one faces during the research process. Our main argument in this article is, therefore, that moral sensitivity is required in addition to the traditional research ethical principles throughout the whole process of observing and interviewing the respondents. (shrink)

Qualitative research from a feminist perspective in the postmodern era: methodological, ethical and reflexive concerns Developing methodology is an ongoing process in certain types of qualitative research. This paper describes the process in a study of single midlife women, detailing reflexive concerns on the ethics of data collection and dissemination of research findings from a feminist postmodern perspective, as well as the way in which modification of techniques of analysis occurred as the study progressed. (...) Beginning research questions were concerned with identifying the impact of menopausal symptoms, and the debate surrounding HRT on the lives and decision‐making processes of single midlife women. Initial analysis of data, using grounded theory techniques, indicated a need to place greater emphasis on the way the women constructed or talked about the self, including the embodied self. This led to an exploration of the literature relating to reflexivity, identity construction and embodiment, including feminist poststructuralist interpretations of the discursive and embodied construction of self, and informed both the theoretical framework and the method. The way in which a type of analysis fitting under the broad rubric of discourse analysis, that is one that gave added emphasis to gendered subjectivity, directed further analysis is discussed, as well as the influence on the women of social and scientific discourses in circulation. (shrink)

Qualitative research occupies a useful and important role in social science inquiry. Nonetheless, when ethical issues surrounding this research are discussed, elements of risk may be neglected. Qualitative research often raises concerns about the protection of the confidentiality of not only the participants but also of 3rd parties mentioned in transcribed narratives. Moreover, we argue that, in some instances, qualitative research has considerable potential of inducing negative psychological states. We conclude by presenting a (...) series of recommendations that can be used to address such ethical concerns. (shrink)

Freedom of information requests are increasingly used in sociology, criminology and other social science disciplines to examine government practices and processes. University ethical review boards in Canada have not typically subjected researchers’ FOI requests to independent review, although this may be changing in the United Kingdom and Australia, reflective of what Haggerty calls ‘ethics creep’. Here we present four arguments for why FOI requests in the social sciences should not be subject to formal ethical review by ERBs. These four (...) arguments are: existing, rigorous bureaucratic vetting; double jeopardy; infringement of citizenship rights; and unsuitable ethics paradigm. In the discussion, we reflect on the implications of our analysis for literature on ethical review and qualitative research, and for literature on FOI and government transparency. (shrink)

This article investigates dilemmas in the archiving and sharing of qualitative data in educational research, critically engaging with practices and debates from across the social sciences. Ethical, epistemological and methodological challenges are examined in reference to open access agendas, the politics of knowledge production, and transformations in research practices in the era of data management. We first consider practical and interpretive decisions in archiving qualitative data, then map current policy and regulatory frameworks governing research data (...) management, taking Australia as a case-study. We argue that governance and protocols for data sharing have not attended sufficiently to the distinctive ethical and methodological dimensions and knowledge claims of qualitative research. Instead, approaches associated with quantitative data are extrapolated in ways which construct an imaginary of decontextualised data, abstracted from the conditions of its production. We further argue for more critical attention to the double-edged affordances and ambivalent effects of data sharing and openness and to how data archives are imagined, constructed and curated. This includes greater acknowledgement of the affective and temporal dynamics involved in data archiving, understanding them as practices of (re)invention that also curate ‘archives for the future’ and help to foster an historicising imaginary in educational research. (shrink)

An increase in the number of companies that publish corporate social responsibility (CSR) statements, and a rise in their ‘sustainability’ research, reflects a growing acceptance that broad ethical considerations are key for any type of company. However, little is known about how companies consider moral objectives for their research and development (R&D) activities, or the basis upon which these activities are chosen. This research involves qualitative investigation into Responsible Research and Innovation (RRI) in the Information (...) and Communication Technology (ICT) industry, comprising 30 in-depth, pan-European interviews with key personnel in the industry, and focus groups with employees at 14 different companies. Through investigation of the ‘responsible’ activities these companies currently undertake, we shed light on the types of moral goals they set and their underlying ethical standpoints. By reviewing both the responsible innovation and sustainability discourses, and presenting phenomenological evidence, we demonstrate that companies have adopted some aspects of RRI, even though it might not be recognised as such. Our findings indicate that these innovators recognise some of the ethical and societal concerns associated with their activities but their approach is often piecemeal; primary focus is upon the most immediate issues and on legal compliance, to the detriment of broader societal issues and wider challenges. We recommend explicit mechanisms that draw upon established ethical thought and practical academic work to improve companies' abilities to carry out their sustainability activities, and incorporate them into a responsible business strategy. We conclude with recommendations for innovators, corporate research and development, and policy. (shrink)

Assisted reproduction (ART), particularly that performed using donated gametes, increases the prospect of healthy babies being delivered to increasing numbers of people striving for parenthood. The psychosocial, ethical and legislative issues related both to the donation and receipt of gametes are perceived as extraordinarily complicated. In 2009, a research project aimed at mapping the issues was drawn up and implemented in the Czech Republic. The project should have provided material for consultation purposes, for the work of ethical and legislative (...) bodies, and for better interdisciplinary and international communication in reproductive medicine. Work on the project was affected by several unforeseen events, particularly by the drafting and adoption of a new law on ART (to which the project was initially to have contributed material once concluded). The article describes the dynamic and structural changes occurring within the project due to drafting of the bill as well as the changes and consequences resulting from other circumstances related to the topic researched. (shrink)

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

The map is not the territory - from ontology to epistemology in knowledge construction -- Dialectics: a mechanism of knowledge construction -- Reflectivity reconsidered -- Reflectivity and the researchers' perspective -- Reflectivity and the participants' perspective -- Ethical differences and similarities as sources of reflection and knowledge construction -- Research relations and power differentials: from resistance to collaboration and in-between -- Frames of reference and the control of knowledge -- Reciprocity: the nature and attributes of research relations and (...) power -- Epilogue: from dialectics to dialog across liminal spaces. (shrink)

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

Background Studying global health problems requires international multidisciplinary teams. Such multidisciplinarity and multiculturalism create challenges in adhering to a set of ethical principles across different country contexts. Our group on health system responses to violence against women (VAW) included two universities in a European high-income country (HIC) and four universities in low-and middle-income countries (LMICs). This study aimed to investigate professional and policy perspectives on the types, causes of, and solutions to ethical challenges specific to the ethics approval stage (...) of the global research projects on health system responses to VAW. Methods We used the Network of Ethical Relationships model, framework method, and READ approach to analyse qualitative semi-structured interviews (n = 18) and policy documents (n = 27). In March-July 2021, we recruited a purposive sample of researchers and members of Research Ethics Committees (RECs) from the five partner countries. Interviewees signposted policies and guidelines on research ethics, including VAW. Results We developed three themes with eight subthemes summarising ethical challenges across three contextual factors. The global nature of the group contributed towards power and resource imbalance between HIC and LMICs and differing RECs’ rules. Location of the primary studies within health services highlighted differing rules between university RECs and health authorities. There were diverse conceptualisations of VAW and vulnerability of research participants between countries and limited methodological and topic expertise in some LMIC RECs. These factors threatened the timely delivery of studies and had a negative impact on researchers and their relationships with RECs and HIC funders. Most researchers felt frustrated and demotivated by the bureaucratised, uncoordinated, and lengthy approval process. Participants suggested redistributing power and resources between HICs and LMICs, involving LMIC representatives in developing funding agendas, better coordination between RECs and health authorities and capacity strengthening on ethics in VAW research. Conclusions The process of ethics approval for global research on health system responses to VAW should be more coordinated across partners, with equal power distribution between HICs and LMICs, researchers and RECs. While some of these objectives can be achieved through education for RECs and researchers, the power imbalance and differing rules should be addressed at the institutional, national, and international levels. Three of the authors were also research participants, which had potential to introduce bias into the findings. However, rigorous reflexivity practices mitigated against this. This insider perspective was also a strength, as it allowed us to access and contribute to more nuanced understandings to enhance the credibility of the findings. It also helped to mitigate against unequal power dynamics. (shrink)

Qualitative research poses ethical issues and challenges unique to the study of human beings. In developing the interpersonal relationship that is critical to qualitative research, investigator and participant engage in a dialogic process that often evokes stories and memories that are remembered and reconstituted in ways that otherwise would not occur. Ethical issues are raised when this relationship not only provides qualitative research data, but also leads to some degree of therapeutic interaction for the (...) participant. The purpose of this article is to examine some of the controversies inherent in the researcher's dilemma when this occurs, set within the context of a nursing caring theory (Swanson), and the International Council of Nurses Code of ethics for nurses, which provides guidance on global nursing practice. (shrink)

The present article aims to scrutinize publishing ethics in the fields of paediatrics and paediatric nursing. Full-text readings of all original research articles in paediatrics from a high-income economy, i.e. Sweden, and from all low-income economies in Sub-Saharan Africa, were reviewed as they were indexed and stored in Web of Science for the search period from 1 January 2007 to 7 October 2009. The application of quantitative and qualitative content analysis revealed a marked discrepancy in publishing frequencies (...) between the two contrasting economies. Authors from 16 low-income economies in Sub-Saharan Africa, with at least one article stored, were obviously closely linked to co-authorships and foreign funding sources, predominantly from Europe and the USA. Statements concerning conflicts of interest were frequently missing (both regions), even when multiple financial sources, including companies, were involved. It is necessary to be aware of possible systematic bias when using electronic databases to search for certain topics and regions. Further research regarding publishing ethics in paediatrics and paediatric nursing is emphasized. (shrink)

This article is concerned with ethical issues that have to be considered when under taking qualitative research. Some of the issues - such as informed consent, the dignity and privacy of the research subjects, voluntary participation and protection from harm - are the same as in other types of research and have their basis in moral and ethical principles. Qualitative research, however, generates specific ethical problems because of the close relationship that researchers form with (...) participants. Qualitative research with patients is especially difficult because of their vulnerability and lack of power in the clinical situation. Therefore the potential conflict between the dual role of the nurse - the professional and the research roles - has to be solved. Researchers also learn how to cope with the tension of subjective and objective elements of the research. Nurses who attempt qualitative research have to consider a variety of complex ethical issues, which are addressed in this paper. (shrink)

Background: The right of children to have their voice heard has been accepted by researchers, and there are increasing numbers of qualitative health studies involving children. The ethical and methodological issues of including children in research have caused worldwide concerns, and many researchers have published articles sharing their own experiences. Objectives: To systematically review and synthesise experts’ opinions and experiences about ethical and methodological issues of including children in research, as well as related solution strategies. Research (...) design: The research design was a systematic review of opinion-based evidence, based on the guidelines by Joanna Briggs Institute. Methods: A search of five computerised databases has been conducted in April 2014 and 2271 articles were found. After screening the titles, abstracts, full texts and appraising the quality, 30 articles were finally included in the review. A meta-aggregative approach was applied in the data analysis and synthesis process. Ethical considerations: Ethical approval is not needed as it is a systematic review of published literature. Results: Six themes were identified, including evaluating potential risks and benefits, gaining access, obtaining informed consent/assent, protecting confidentiality and privacy, building rapport and collecting rich data. The similarities and differences between research involving children and that involving adults were indicated. Conclusion: All potential incentives should be justified when designing the study. Further studies need to research how to evaluate individual capacity of children and how to balance protecting children’s right to participate and their interests in the research. Cultural differences related to researching children in different regions should also be studied. (shrink)

ABSTRACT Objective: To describe how local research ethics committees (LRECs) consider and apply research ethics in the evaluation of biomedical research proposals. Design: A qualitative study was conducted using purposeful sampling, focus groups and a grounded theory approach to generate data and to analyse the work of the LRECs. Setting and participants: 11 LRECs of the Mexican Institute of Social Security (IMSS). Results: LRECs considered ethics to be implicit in all types of (...) class='Hi'>research, but that ethics reviews were only necessary for projects that included the direct participation of human beings. The LRECs appeared to understand the importance of consent, as in the completion of a consent form, but did not emphasise the importance of the process of acquiring ‘informed’ consent. The committees considered their main roles or functions to be: (a) to improve the methodological quality of research and to verify – if applicable – the ethical aspects; (b) to encourage personnel to undergo research training; (c) to follow‐up research to oversee the adherence to norms and compliance with a specified research timetable. Conclusions: This study provides a valuable insight into how these LRECs understand the ethical review process. The emphasis of the committees was on rules, regulations, improving research methodology and research training, rather than a focus on efforts to protect the rights and well being of research subjects. The results encourage further normative and descriptive lines of investigation concerning education and the development of LRECs. (shrink)

Drawing on the author’s experience carrying out qualitative research in the field of occupational therapy with people with intellectual disabilities, this article explores ethical issues inherent in ethnographic and case study research, where study designs can evolve over time. Such qualitative methodologies can enable deep understanding of research topics, but detailed description of methods and of the range of potential experiences participants may have is necessary to ensure that they are fully informed and ethics (...) committees satisfied. Thorough consideration is required of ethical issues related to topic relevance and design, recruitment, collection of data and portrayal of participants in the eventual case report. The article illustrates a way in which research of this type can be explained and justified, including how recruitment can be achieved of participants likely to lack capacity to consent to participation themselves. (shrink)

Background While the theoretical benefits and harms of Artificial Intelligence (AI) have been widely discussed in academic literature, empirical evidence remains elusive regarding the practical ethical challenges of developing AI for healthcare. Bridging the gap between theory and practice is an essential step in understanding how to ethically align AI for healthcare. Therefore, this research examines the concerns and challenges perceived by experts in developing ethical AI that addresses the healthcare context and needs. Methods We conducted semi-structured interviews with (...) 41 AI experts and analyzed the data using reflective thematic analysis. Results We developed three themes that expressed the considerations perceived by experts as essential for ensuring AI aligns with ethical practices within healthcare. The first theme explores the ethical significance of introducing AI with a clear and purposeful objective. The second theme focuses on how experts are concerned about the tension that exists between economic incentives and the importance of prioritizing the interests of doctors and patients. The third theme illustrates the need to develop context-sensitive AI for healthcare that is informed by its underlying theoretical foundations. Conclusions The three themes collectively emphasized that beyond being innovative, AI must genuinely benefit healthcare and its stakeholders, meaning AI also aligns with intricate and context-specific healthcare practices. Our findings signal that instead of narrow product-specific AI guidance, ethical AI development may need a systemic, proactive perspective that includes the ethical considerations (objectives, actors, and context) and focuses on healthcare applications. Ethically developing AI involves a complex interplay between AI, ethics, healthcare, and multiple stakeholders. (shrink)

Neither ethics committees nor qualitative researchers can predict the types of ethical dilemmas that will happen in the field, only that they will routinely occur. In Qualitative Ethics in Practice, a team of fifteen top researchers from various disciplines and nationalities offer ethical strategies unique to qualitative researchers for those "big ethical moments" beyond what can be predicted by ethics committees. Ideally structured for qualitative classes that tackle ethics issues, the book -calls (...) for an ethical code unique to the practice of qualitative research; -uses a variety of cases from education, community development, tourism, family, and other settings to examine how researchers addressed ethical dilemmas in practice, including the infamous Belfast Project; -highlights some relevant models and programs being developed that may lead to solutions. (shrink)

The article reconstructs, in economic terms, managerial business ethics perceptions in the Japanese consumer market for fast-moving daily consumption products. An economic, three-level model of moral agency was applied that distinguishes unintentional moral agency, passive intentional moral agency and active intentional moral agency. The study took a qualitative approach and utilized as empirical research design an interview procedure. The study found that moral agency of Japanese firms mostly extended up to unintentional and intentional passive moral agency. Certain (...) myopic managerial views were found to affect active moral agency. This leaves room for business ethics program that aim at the development of active moral agency. (shrink)

Background Genomic research on neurodevelopmental disorders (NDDs), particularly involving minors, combines and amplifies existing research ethics issues for biomedical research. We performed a review of the literature on the ethical issues associated with genomic research involving children affected by NDDs as an aid to researchers to better anticipate and address ethical concerns. Results Qualitative thematic analysis of the included articles revealed themes in three main areas: research design and ethics review, inclusion of (...) research participants, and communication of research results. Ethical issues known to be associated with genomic research in general, such as privacy risks and informed consent/assent, seem especially pressing for NDD participants because of their potentially decreased cognitive abilities, increased vulnerability, and stigma associated with mental health problems. Additionally, there are informational risks: learning genetic information about NDD may have psychological and social impact, not only for the research participant but also for family members. However, there are potential benefits associated with research participation, too: by enrolling in research, the participants may access genetic testing and thus increase their chances of receiving a (genetic) diagnosis for their neurodevelopmental symptoms, prognostic or predictive information about disease progression or the risk of concurrent future disorders. Based on the results of our review, we developed an ethics checklist for genomic research involving children affected by NDDs. Conclusions In setting up and designing genomic research efforts in NDD, researchers should partner with communities of persons with NDDs. Particular attention should be paid to preventing disproportional burdens of research participation of children with NDDs and their siblings, parents and other family members. Researchers should carefully tailor the information and informed consent procedures to avoid therapeutic and diagnostic misconception in NDD research. To better anticipate and address ethical issues in specific NDD studies, we suggest researchers to use the ethics checklist for genomic research involving children affected by NDDs presented in this paper. (shrink)

While it is acknowledged that there is a need for more qualitative research on suicide, it is also clear that the ethics of undertaking such research need to be addressed. This article uses the case study of the authors’ experience of gaining ethics approval for a research project that asks people what it is like to feel suicidal to (a) analyse the limits of confidentiality and anonymity and (b) consider the ways in which the (...) process of ethics review can shape and constrain suicide research. This leads to a discussion of the ways in which ethics committees assess and monitor qualitative research more generally and some preliminary suggestions for how this might be improved. (shrink)

Over the last 50 years, there has been significant development of qualitative research and related methods in healthcare. Theoretical frameworks support researchers in selecting appropriate research approaches, procedures and analytical tools. However, the implications of the choice of theory are sparsely elucidated. Based on a text excerpt from a public debate article, the study aimed to show how different theory‐inspired analytical perspectives produced varied understandings of the same text. The study presented three subanalyses inspired by Bourdieu's sociological (...) theory, Lazarus and Folkman's psychological theory and utilitarian ethics, respectively. The analyses showed that by using different theoretical analytical perspectives in inductive processes, an immediate interpretation of the text was not obvious. It became possible to spot the underlying meta‐theoretical assumptions, as the interpretations were not taken for granted or indisputable. Our analyses suggest that different theoretical lenses lead to different interpretations of the same empirical material, recognising the existence of multiple truths or realities. Thus, utilising a theoretical perspective in inductive analyses can enhance transparency and rigour because the analytical optics are made explicit to the reader. This allows the reader to follow the analysis processes and comprehend from which theoretical starting point a truth arises. (shrink)

This paper argues that qualitative research is both useful and necessary, as it provides an essential means of gaining a richer understanding of patients' perceptions, social processes and meanings. In their paper in this edition of Clinical Ethics, Hallowell and Lawton raise many issues relating to the way that qualitative research is treated by RECs in the UK. In this paper I discuss just three key topics stimulated by their paper: the way that methodology relates (...) to ethics, the experience and character of the researcher, and the normative/descriptive distinction. I strongly support Hallowell and Lawton's appeal for greater communication between qualitative researchers and RECs. In other respects, I would argue that they do not go far enough. The recent review of research ethics structures and the review process provides an opportunity to move away from the present 'one size fits all' approach to ethical review. I would argue that this change could only benefit qualitative research and researchers. (shrink)

Background Protecting the privacy of research participants is widely recognized as one of the standard ethical requirements for clinical research. It is unknown, however, how research professionals regard concepts of privacy as well as the situations in the research setting that require privacy protections. The aim of this study was to explore the views of research professionals from Arab countries regarding concepts and scope of privacy that occur in clinical research. Methods We adopted an (...) exploratory qualitative approach by the use of focus group discussions. We recruited individuals involved in research from Egypt and Morocco. We analyzed focus group data via a constant comparison approach, which consisted of close reading of the transcribed interviews followed by coding and then determining themes and subthemes. Results Between August 2016 and July 2018, we conducted nine focus group discussions. Respondents discussed several privacy issues that occurred before the research began ; during research, and after the research. Respondents revealed their perspectives of patients towards privacy in the clinical and research settings and mentioned that patients are more likely to permit access to their privacy in the clinical setting compared with research setting due to the existence of benefits and trust in clinical care. Respondents also recommended training regarding data protections for individuals involved in research. Conclusions Our study shows that research professionals discussed a range of privacy issues that are present during the different stages of research. We recommend 1) development of standards regarding privacy protections during recruitment efforts; 2) additional training for individuals involved in research regarding best practices with data security in secondary research; 3) a quantitative study involving investigators and REC members to determine their knowledge, attitudes and practices regarding privacy issues that occur in research; and 4) a quantitative study involving patients to elicit their views regarding their privacy concerns in research. (shrink)

Background. Ethics are rules or standards governing the conduct of a person or members of a profession. Medical research must be regulated to ensure that fundamental human rights are not breached in the quest for knowledge. Nigeria had no laws or specific guidelines to regulate health research until 2007, when a national regulatory body, the National Health Research Ethics Committee, was established. Its function is to ensure ethical conduct in research and to accredit institutional (...) and state health research ethics committees.Objective. To document the current role of HRECs in the ethical practice of health research in Nigeria, 4 years after the establishment of the NHREC.Methods. Functioning of the HRECs was evaluated via interviews of 14 members of state and institutional HRECs chosen from selected geopolitical zones of the country.Results. The HRECs surveyed had between nine and 15 members, with more males than females. Review meetings were held only occasionally owing to the competing interests of members, who receive no incentives for participation, and poor funding. Scientific and ethical reviews are conducted together by the same committee, but few members of the HRECs are trained in research ethics. Monitoring of research after approval is poor.Conclusion. Nigeria now has about 30 institutional HRECs, but their functioning is hampered by a shortage of both money and qualified individuals to serve on them. (shrink)

It is difficult to consider, describe or address the ethical issues particular to qualitative research without experience and understanding of the technicalities of qualitative methodologies. The Australian National Statement on the Ethical Conduct of Research Involving Humans charges researchers with a responsibility to demonstrate that they have the appropriate experience, qualifications and competence for their proposed research. Ethical review committees have the responsibility to judge claimed research competence. This article provides practical guidance to researchers (...) and review committees on using formal qualifications and training, explicit claims of competence, and markers of in/competence to assess qualitative research competence. (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)

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)

Ten qualitative research articles published from July 2013 through June 2014 on ethical topics in healthcare and health research are examined here. Full reference information is given for each article. A brief summary of the background, objectives, methods, results and conclusions is offered. These articles were chosen based on the quality of the work done and how well the work fits the interests of Narrative Inquiry in Bioethics readers.