The Road to Darfur: Ethical and Practical Challenges of Embedded Research in Areas of Open Conflict

2020 ◽  
pp. 185-198
Author(s):  
Mateja Peter
Keyword(s):  
Scholarly Work ◽  
Ethical Challenges ◽  
Ethical Considerations ◽  
Research Participants ◽  
The Road ◽  
Physical Access

This chapter concentrates on Mateja Peter's experiences of doing embedded research in Darfur, Sudan. It analyzes the distances between researcher and research participants that are created through physical access restrictions to the field, which may arise from the dangers of an active conflict. It also illustrates how practical considerations of accessing sites of conflict are entangled with ethical considerations for scholarly work and for interventions. The chapter highlights how a combination of practical and ethical constraints impacts what can be said about places that are studied. It also provides a narrative of Peter's fieldwork in Darfur, laying out the context and practical considerations, as well as the ethical challenges of the research.

Ethical Considerations of Research in Disaster-Stricken Populations

2009 ◽  
Vol 24 (2) ◽  
pp. 109-114 ◽  
Author(s):  
John E. Jesus ◽  
Glen E. Michael
Keyword(s):  
Disaster Response ◽  
Disaster Medicine ◽  
Biomedical Ethics ◽  
Respect For Persons ◽  
Ethical Challenges ◽  
Research Subjects ◽  
Ethical Considerations ◽  
Research Participants ◽  
The Core

AbstractRecently, emphasis has been placed on improving and expanding research in disaster response and the treatment of disaster-stricken populations. However, research in these settings presents unique ethical challenges with which the scientific and biomedical ethics communities continue to struggle. At the core of the controversy is the question of how best to balance the critical need for research with the equally important obligation to respect and protect the interests of research participants within the unique stress of a disaster. This concern stems from the potential of increased vulnerability of individuals stricken by disaster over and above their usual vulnerability to risk and exploitation as research subjects. Ethical principles that must be considered in these situations are the same as those that are important when conducting any human research: respect for persons, non-maleficence, beneficence, and justice. This paper explores the ethical challenges that accompany inadequate resources and personnel, the potential vulnerability of research participants, the dual role of physician-researcher, and the importance of the public's perception and trust are explored. It then proposes a number of potential avenues through which to conduct ethically justifiable research that could answer many of the pressing questions in disaster medicine and response.

Ethical challenges when using coercion in mental healthcare: A systematic literature review

2016 ◽  
Vol 25 (1) ◽  
pp. 92-110 ◽  
Author(s):  
Marit Helene Hem ◽  
Elisabeth Gjerberg ◽  
Tonje Lossius Husum ◽  
Reidar Pedersen
Keyword(s):  
Patient Autonomy ◽  
Moral Distress ◽  
Mental Healthcare ◽  
Healthcare Personnel ◽  
Ethical Challenge ◽  
Ethical Challenges ◽  
Best Interest ◽  
Ethical Considerations ◽  
Search Terms ◽  
Healthcare It

Background: To better understand the kinds of ethical challenges that emerge when using coercion in mental healthcare, and the importance of these ethical challenges, this article presents a systematic review of scientific literature. Methods: A systematic search in the databases MEDLINE, PsychInfo, Cinahl, Sociological Abstracts and Web of Knowledge was carried out. The search terms derived from the population, intervention, comparison/setting and outcome. A total of 22 studies were included. Ethical considerations: The review is conducted according to the Vancouver Protocol. Results: There are few studies that study ethical challenges when using coercion in an explicit way. However, promoting the patient’s best interest is the most important justification for coercion. Patient autonomy is a fundamental challenge facing any use of coercion, and some kind of autonomy infringement is a key aspect of the concept of coercion. The concepts of coercion and autonomy and the relations between them are very complex. When coercion is used, a primary ethical challenge is to assess the balance between promoting good (beneficence) and inflicting harm (maleficence). In the included studies, findings explicitly related to justice are few. Some studies focus on moral distress experienced by the healthcare professionals using coercion. Conclusion: There is a lack of literature explicitly addressing ethical challenges related to the use of coercion in mental healthcare. It is essential for healthcare personnel to develop a strong awareness of which ethical challenges they face in connection with the use of coercion, as well as challenges related to justice. How to address ethical challenges in ways that prevent illegitimate paternalism and strengthen beneficent treatment and care and trust in connection with the use of coercion is a ‘clinical must’. By developing a more refined and rich language describing ethical challenges, clinicians may be better equipped to prevent coercion and the accompanying moral distress.

Payments for Participation of Children in Research

2018 ◽  
pp. 244-263
Author(s):  
Douglas S. Diekema
Keyword(s):  
Decision Making ◽  
Research Participation ◽  
Ethical Considerations ◽  
Parental Decision ◽  
Research Participants ◽  
Ethical Implications ◽  
Parental Decision Making ◽  
Participation In Research ◽  
Research Studies ◽  
Current Practices

Providing payment to those who participate is common practice for research studies involving both children and adults. While there may be good reasons for providing payment for research participation, there are also reasons to be concerned about the practice, especially when the subjects are children and the payment has the potential to distort parental decision-making by tempting parents to consider issues other than the welfare of their child. This chapter examines the ethical implications of providing payment to children and their parents for participation in research. After a brief survey of current practices regarding payments to research participants, the chapter will examine the distinct kinds of payments offered to research participants and their parents (Those intended to reimburse expenses and those intended to induce participation), evaluate the ethical considerations relevant to each kind of payment, and make some final recommendations concerning the provision of payments for research involving children.

The Researcher and the Researched: Navigating the Challenges of Research in Conflict-Affected Environments

2020 ◽  
Author(s):  
Eleanor Gordon
Keyword(s):  
Social Science ◽  
Social Science Research ◽  
Science Research ◽  
Ethical Challenges ◽  
Ethical Concerns ◽  
Research Participants ◽  
Methodological Challenges ◽  
Security Challenges ◽  
Different Cultures

Abstract Ethical concerns associated with social science research are heightened in conflict-affected environments, due to increased insecurity and the vulnerability of many research participants. This article considers some of the main challenges faced by researchers in conflict-affected environments and how they can be addressed, focusing in particular on ethical and security challenges. It also considers other challenges, which are often overlooked, such as the epistemological and methodological challenges of acquiring knowledge in conflict-affected environments, where research participants may be from different cultures, may speak different languages, and may be deeply traumatized and distrustful of others. In such places, research participants may employ techniques to assuage or discourage the researcher, including projecting borrowed narratives or remaining silent. This article argues that navigating security and ethical challenges, attending to issues of power, and remaining genuinely self-reflective can help fulfill the optimal potential of research in conflict-affected environments, which is to challenge narratives that perpetuate conflict, harm, and insecurity and to contribute to a better understanding and, thus, response to the challenges of conflict and peacebuilding.

Ethical Considerations for Postdisaster Fieldwork and Data Collection in the Caribbean

2020 ◽  
Vol 64 (8) ◽  
pp. 1129-1144
Author(s):  
Hans M. Louis-Charles ◽  
Rosalyn Howard ◽  
Lionel Remy ◽  
Farah Nibbs ◽  
Grace Turner
Keyword(s):  
Secondary Data ◽  
Ethical Considerations ◽  
Research Participants ◽  
Participant Engagement ◽  
Emergency Managers ◽  
Unethical Practices ◽  
Disaster Survivors ◽  
Human Participant ◽  
The Caribbean ◽  
Local Agencies

The postdisaster environment presents a multitude of ethical and logistical challenges for researchers interested in gathering timely and unpreserved data. Due to the unavailability of secondary data in the immediate aftermath of disasters, postdisaster researchers have become dependent on qualitative methods that involve engaging with disaster survivors as research participants. This is a common interaction in the Caribbean due to the region’s high occurrence of disasters and human participant engagement by external researchers during the postdisaster phase. However, due to escalating unethical practices since the 2010 Haiti earthquake, Caribbean nations are beginning the process of censuring unapproved postdisaster fieldwork by external researchers. In this study, the authors approach these ethical considerations through a justice lens to propose a checklist for postdisaster researchers interested in ethical fieldwork and justice for their research participants. Correspondence with Caribbean emergency managers confirms the negative perception toward external researchers and the trend of enacting protocols that stop unvetted community access following disasters. However, these local agencies acknowledge the benefits of ethical postdisaster research and are open to serving as research coordinating centers. Such coordinating centers would harness local capabilities and lower the likelihood of the duplication of research topics and the overburdening of survivors as research participants.

scholarly journals Navigating cross-cultural research: methodological and ethical considerations

2020 ◽  
Vol 287 (1935) ◽  
pp. 20201245
Author(s):  
Tanya Broesch ◽  
Alyssa N. Crittenden ◽  
Bret A. Beheim ◽  
Aaron D. Blackwell ◽  
John A. Bunce ◽  
...  
Keyword(s):  
Community Involvement ◽  
Cross Cultural ◽  
Research Approach ◽  
Ethical Challenges ◽  
Ethical Considerations ◽  
Social Scientists ◽  
Cultural Research ◽  
The Social ◽  
Cross Cultural Research ◽  
Increasing Demand

The intensifying pace of research based on cross-cultural studies in the social sciences necessitates a discussion of the unique challenges of multi-sited research. Given an increasing demand for social scientists to expand their data collection beyond WEIRD (Western, educated, industrialized, rich and democratic) populations, there is an urgent need for transdisciplinary conversations on the logistical, scientific and ethical considerations inherent to this type of scholarship. As a group of social scientists engaged in cross-cultural research in psychology and anthropology, we hope to guide prospective cross-cultural researchers through some of the complex scientific and ethical challenges involved in such work: (a) study site selection, (b) community involvement and (c) culturally appropriate research methods. We aim to shed light on some of the difficult ethical quandaries of this type of research. Our recommendation emphasizes a community-centred approach, in which the desires of the community regarding research approach and methodology, community involvement, results communication and distribution, and data sharing are held in the highest regard by the researchers. We argue that such considerations are central to scientific rigour and the foundation of the study of human behaviour.

Ethical and Methodological Issues in Large Qualitative Participatory Studies

2018 ◽  
Vol 63 (5) ◽  
pp. 584-603 ◽  
Author(s):  
Naomi Hossain ◽  
Patta Scott-Villiers
Keyword(s):  
Action Research ◽  
International Development ◽  
Participatory Research ◽  
Large Scale ◽  
Well Being ◽  
Ethical Framework ◽  
Human Society ◽  
Ethical Challenges ◽  
Research Participants ◽  
Time Space

Participatory research studies utilizing qualitative data drawn from large, diverse samples appear increasingly common in the social sciences, particularly in international development. This reflects demand for participatory approaches to researching human well-being at scale, comparative research on globalization and development, and breadth and scale in evidence-based policy making. “Big Qual” studies in international development increasingly combine qualitative with participatory methods and incorporate action research, oral histories, case studies, and visual methods. Apart from their scale (more sites and research participants than conventional “face-to-face” research) and diversity of contexts, these studies broadly share a focus on application, and an epistemological and ideological commitment to hearing and amplifying the voices of research participants and contributing to positive change in their lives. Some ethical challenges of Big Qual research—for example, reuse, storage, and sharing of third party data—have been thoroughly debated. Less is known of how complexities across time, space, and culture may shape researcher relations in large-scale participatory research, biasing results against context-specificity and meaningful local political analysis. Drawing on almost a decade’s experience with large participatory research, this article explores why and how scale, encompassing a complex network of institutions, relationships, contexts, and cultures, affects the ethics of these studies. We propose that Bradbury and Reason’s (2001) five criteria for judging the value and contribution of social inquiry are helpful: (a) the quality of relationships built, (b) the usefulness of the research, (c) its trustworthiness, (d) its relevance to vital issues of human society, and (e) its enduring consequence. Drawn from an action research tradition, these criteria constitute a comprehensive ethical framework particularly applicable to Big Qual participatory work in development studies. Through an empirical application of these criteria, the article highlights emerging ethical challenges facing applied social research in increasingly complex, multiscalar, and globalized contexts.

scholarly journals Mining social media data: How are research sponsors and researchers addressing the ethical challenges?

2017 ◽  
Vol 14 (2) ◽  
pp. 1-39 ◽  
Author(s):  
Joanna Taylor ◽  
Claudia Pagliari
Keyword(s):  
Social Media ◽  
Health Research ◽  
Social Research ◽  
International Association ◽  
Academic Community ◽  
Ethical Challenges ◽  
Ethical Considerations ◽  
Social Media Data ◽  
Ethics Guidelines ◽  
Media Data

Background: Data representing people’s behaviour, attitudes, feelings and relationships are increasingly being harvested from social media platforms and re-used for research purposes. This can be ethically problematic, even where such data exist in the public domain. We set out to explore how the academic community is addressing these challenges by analysing a national corpus of research ethics guidelines and published studies in one interdisciplinary research area. Methods: Ethics guidelines published by Research Councils UK (RCUK), its seven-member councils and guidelines cited within these were reviewed. Guidelines referring to social media were classified according to published typologies of social media research uses and ethical considerations for social media mining. Using health research as an exemplar, PubMed was searched to identify studies using social media data, which were assessed according to their coverage of ethical considerations and guidelines. Results: Of the 13 guidelines published or recommended by RCUK, only those from the Economic and Social Research Council, the British Psychological Society, the International Association of Internet Researchers and the National Institute for Health Research explicitly mentioned the use of social media. Regarding data re-use, all four mentioned privacy issues but varied with respect to other ethical considerations. The PubMed search revealed 156 health-related studies involving social media data, only 50 of which mentioned ethical concepts, in most cases simply stating that they had obtained ethical approval or that no consent was required. Of the nine studies originating from UK institutions, only two referred to RCUK ethics guidelines or guidelines cited within these. Conclusions: Our findings point to a deficit in ethical guidance for research involving data extracted from social media. Given the growth of studies using these new forms of data, there is a pressing need to raise awareness of their ethical challenges and provide actionable recommendations for ethical research practice.

Ethical and Cultural Considerations in Informed Consent in Botswana

2007 ◽  
Vol 14 (4) ◽  
pp. 503-509 ◽  
Author(s):  
Sheila Shaibu
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Nurse Educators ◽  
Cultural Practices ◽  
Culturally Sensitive ◽  
Ethical Challenges ◽  
Research Participants ◽  
Cultural Considerations ◽  
Conducting Research

Reflections on my experience of conducting research in Botswana are used to highlight tensions and conflicts that arise from adhering to the western conceptualization of bioethics and the need to be culturally sensitive when carrying out research in one's own culture. Cultural practices required the need to exercise discretionary judgement guided by respect for the culture and decision-making protocols of the research participants. Ethical challenges that arose are discussed. The brokerage role of nurse educators and leaders in contextualizing western bioethics is emphasized.

scholarly journals “A Question of Trust” and “a Leap of Faith”—Study Participants’ Perspectives on Consent, Privacy, and Trust in Smart Home Research: Qualitative Study (Preprint)

2020 ◽  
Author(s):  
Mari-Rose Kennedy ◽  
Richard Huxtable ◽  
Giles Birchley ◽  
Jonathan Ives ◽  
Ian Craddock
Keyword(s):  
Smart Home ◽  
Qualitative Interviews ◽  
Information Provision ◽  
Prima Facie ◽  
Future Research ◽  
Ethical Challenges ◽  
Ethical Considerations ◽  
Ethical Implications ◽  
Health And Social Care ◽  
Types Of Information

BACKGROUND <i>Ubiquitous</i>, <i>smart</i> technology has the potential to assist humans in numerous ways, including with health and social care. COVID-19 has notably hastened the move to remotely delivering many health services. A variety of stakeholders are involved in the process of developing technology. Where stakeholders are research participants, this poses practical and ethical challenges, particularly if the research is conducted in people’s homes. Researchers must observe prima facie ethical obligations linked to participants’ interests in having their autonomy and privacy respected. OBJECTIVE This study aims to explore the ethical considerations around consent, privacy, anonymization, and data sharing with participants involved in SPHERE (Sensor Platform for Healthcare in a Residential Environment), a project for developing smart technology for monitoring health behaviors at home. Participants’ unique insights from being part of this unusual experiment offer valuable perspectives on how to properly approach informed consent for similar smart home research in the future. METHODS Semistructured qualitative interviews were conducted with 7 households (16 individual participants) recruited from SPHERE. Purposive sampling was used to invite participants from a range of household types and ages. Interviews were conducted in participants’ homes or on-site at the University of Bristol. Interviews were digitally recorded, transcribed verbatim, and analyzed using an inductive thematic approach. RESULTS Four themes were identified—motivation for participating; transparency, understanding, and consent; privacy, anonymity, and data use; and trust in research. Motivations to participate in SPHERE stemmed from an altruistic desire to support research directed toward the public good. Participants were satisfied with the consent process despite reporting some difficulties—recalling and understanding the information received, the timing and amount of information provision, and sometimes finding the information to be abstract. Participants were satisfied that privacy was assured and judged that the goals of the research compensated for threats to privacy. Participants trusted SPHERE. The factors that were relevant to developing and maintaining this trust were the trustworthiness of the research team, the provision of necessary information, participants’ control over their participation, and positive prior experiences of research involvement. CONCLUSIONS This study offers valuable insights into the perspectives of participants in smart home research on important ethical considerations around consent and privacy. The findings may have practical implications for future research regarding the types of information researchers should convey, the extent to which anonymity can be assured, and the long-term duty of care owed to the participants who place trust in researchers not only on the basis of this information but also because of their institutional affiliation. This study highlights important ethical implications. Although autonomy matters, trust appears to matter the most. Therefore, researchers should be alert to the need to foster and maintain trust, particularly as failing to do so might have deleterious effects on future research.

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