Ethics in systematic reviews

Affiliation.

  • 1 Dental Faculty, Paul Sabatier University, Department of Epidemiology, Public Health, Prevention and Legislation, Toulouse University Hospital, Toulouse, France. [email protected]
  • PMID: 20952493
  • DOI: 10.1136/jme.2010.039941

Since its introduction by the Nuremberg Code and the Declaration of Helsinki, the place held by ethics in biomedical research has been continuously increasing in importance. The past 30 years have also seen exponential growth in the number of biomedical articles published. A systematic review of the literature is the scientific way of synthesising a plethora of information, by exhaustively searching out and objectively analysing the studies dealing with a given issue. However, the question of ethics in systematic reviews is rarely touched upon. This could lead to some drawbacks, as systematic reviews may contain studies with ethical insufficiencies, may be a possible way to publish unethical research and may also be prone to conflict of interest. Finally, informed consent given for an original study is not necessarily still valid at the systematic review level. There is no doubt that routine ethical assessment in systematic reviews would help to improve the ethical and methodological quality of studies in general. However, ethical issues change so much with time and location, and are so broad in scope and in context that it appears illusory to search for a universal, internationally accepted standard for ethical assessment in systematic reviews. Some simple suggestions could nevertheless be drawn from the present reflection and are discussed in the paper.

  • Biomedical Research / ethics*
  • Ethics, Research*
  • Informed Consent / ethics
  • Review Literature as Topic*

Ethical Considerations of Conducting Systematic Reviews in Educational Research

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  • Suri, Harsh (Author)
  • Zawacki-Richter, Olaf (Editor)
  • Kerres, Michael (Editor)
  • Bedenlier, Svenja (Editor)
  • Bond, Melissa (Editor)
  • Buntins, Katja (Editor)
  • Open access
  • Published: 24 May 2020

A systematic literature review of the ethics of conducting research in the humanitarian setting

  • William Bruno   ORCID: orcid.org/0000-0001-9429-6874 1 &
  • Rohini J. Haar 2  

Conflict and Health volume  14 , Article number:  27 ( 2020 ) Cite this article

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Research around humanitarian crises, aid delivery, and the impact of these crises on health and well-being has expanded dramatically. Ethical issues around these topics have recently received more attention. We conducted a systematic literature review to synthesize the lessons learned regarding the ethics of research in humanitarian crises.

We conducted a systematic review using the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) guidelines to identify articles regarding the ethics of research in humanitarian contexts between January 1, 1997 and September 1, 2019. We analyzed the articles to extract key themes and develop an agenda for future research.

We identified 52 articles that matched our inclusion criteria. We categorized the article data into five categories of analysis: 32 were expert statements, 18 were case studies, 11 contained original research, eight were literature reviews and three were book chapters. All included articles were published in English. Using a step-wise qualitative analysis, we identified 10 major themes that encompassed these concepts and points. These major themes were: ethics review process (21 articles, [40.38%]); community engagement (15 articles [28.85%]); the dual imperative , or necessity that research be both academically sound and policy driven, clinical trials in the humanitarian setting (13 articles for each, [25.0%)]; informed consent (10 articles [19.23%]); cultural considerations (6 articles, [11.54%]); risks to researchers (5 articles, [9.62%]); child participation (4 articles [7.69%]); and finally mental health , and data ownership (2 articles for each [3.85%]).

Conclusions

Interest in the ethics of studying humanitarian crises has been dramatically increasing in recent years. While key concepts within all research settings such as beneficence, justice and respect for persons are crucially relevant, there are considerations unique to the humanitarian context. The particular vulnerabilities of conflict-affected populations, the contextual challenges of working in humanitarian settings, and the need for ensuring strong community engagement at all levels make this area of research particularly challenging. Humanitarian crises are prevalent throughout the globe, and studying them with the utmost ethical forethought is critical to maintaining sound research principles and ethical standards.

Defined as both natural and man-made disasters, along with both acute and chronic conflicts, humanitarian crises threaten the lives and livelihoods of over 131 million people in the world today [ 1 ]. With more than 68.5 million people currently displaced, 25.4 million of whom are refugees outside their country of origin, the global community is witnessing urgent humanitarian issues that are crossing borders and impacting even those states and communities once thought immune [ 2 , 3 ]. Humanitarian aid is the impartial, independent and neutral delivery of services to populations in immediate danger [ 4 ]. Since the end of World War II, the humanitarian aid sector (in the form of health services, water and sanitation services, nutritional goods and security) has grown tremendously [ 5 ].

With expansion in humanitarian aid delivery and the deepening awareness that humanitarian crises can destroy health systems and have long-term impacts on public health, ensuring that the services provided are effective and acceptable is crucial. Following several highly publicized failures of the humanitarian community, veteran humanitarians from across the spectrum of governmental and non-governmental organizations have attempted to improve humanitarian response [ 6 ]. Initiatives such as the Sphere Project and others aimed to create minimum standards and evidence-based protocols for the delivery of five core components of humanitarian response—water supply and sanitation, nutrition, food aid, shelter and site planning and health services [ 7 ]. Over the past several decades, a key component of the assessment process has been conducting formal monitoring, evaluation and research on humanitarian aid delivery. Studies ranging from randomized control trials to population surveys and qualitative assessments evaluating the full spectrum of humanitarian aid delivery have burgeoned [ 8 ].

Parallel to the increase in professionalization of humanitarian aid, the public health community has been grappling with how to ensure that research on vulnerable populations is conducted ethically and with a focus on the rights and best interests of the community. Spurred by a backlash to unchecked human experimentation carried out through the twentieth century during World War II and the decades afterwards, there is more recognition of the critical importance of considering research ethics, particularly when studying vulnerable populations [ 9 ].

Few populations are as vulnerable to the potential adverse ethical challenges of research as those experiencing a humanitarian crisis [ 10 ]. Faced with weak government protections, disrupted health systems, insecure living conditions, and unreliable food and unsafe water, disaster-affected populations can be particularly at risk of inadequate consent processes and coercion. Furthermore, humanitarian emergencies require timely evaluation and management, making traditional ethics review—typically a protracted process—impractical [ 11 , 12 , 13 ]. These unique challenges, along with underdeveloped oversight and regulatory bodies of host countries and international mechanisms, make ethics considerations a crucial but difficult task in humanitarian research [ 14 , 15 ].

Despite increasing interest and an expanding literature base, there has been limited formal synthesis of the existing published data around the ethical issues of research in the humanitarian setting. We conducted a systematic review to (1) identify ethical issues surrounding research in humanitarian settings, (2) assess how these issues are managed in these unique circumstances and (3) develop an agenda for major issues that will require further discourse.

We conducted a systematic review using the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) guidelines [ 16 ]. The PRISMA checklist has been provided as Supplementary Table  1 . Articles relevant to research ethics in the humanitarian setting were identified and analyzed. We chose to limit the search to articles published after January 1, 1997, when the initiation of the Sphere project marked a paradigm shift in how humanitarian aid was envisioned and carried out. This allows for review of nearly 25 years of literature, therefore spanning a wide swath of potential ethical research. We used the Sphere project dates because it included explicit language highlighting the need for evidence-based practices, which would require significant augmentation in research efforts to provide such an evidence base [ 7 ]. Our search included articles published as late as September 1, 2019, when this study was first undertaken.

Search strategy

We searched PubMed and Scopus for articles with significant discussion of the ethical issues of humanitarian research ethics. After a qualitative assessment of relevant keywords, we identified all pertinent articles based on the following terminology categories (articles could be in any language): (1) humanitarian settings (terms such as humanitarian, global health, disaster, emergency and/or conflict), (2) ethics (terms such as ethic(s), bioethics, human rights and/or rights) and (3) research type (terms such as research, program evaluation, monitoring and evaluation and/or investigation). The full search strategy and MeSH terms can be found in the Appendix . The initial search results of 1459 articles underwent a title and abstract review followed by a full text review by two different authors (WB and RH) (Fig.  1 ). A priori inclusion criteria included the 22-year timeframe mentioned above and selected for articles with robust discussion of ethical issues in the context of conducting research in humanitarian settings. Any article deemed by both reviewers to contain only a superficial mention of ethical issues and to not substantively (1) discuss ethics or (2) focus on research (3) in the context of humanitarian settings was excluded from the final analysis. Ethics was defined broadly as engagement with specific research ethics, as well as human rights issues, and other non-formal discussions of right versus wrong and other moral concepts. Research was defined as discussions including any types of data collection including quantitative and qualitative, as well as data collection for monitoring and evaluation for other programmatic and academic purposes. Humanitarian settings included diverse contexts including conflict and post-conflict states, post-natural disaster settings and refugee camps that requires specific interventions to prevent large scale suffering of the populations. Two authors (WB and RH) reviewed the final list of articles meeting the inclusion criteria.

figure 1

Stages of Systematic Literature Review Utilizing PRISMA Guidelines

Analytical methods

We used a modified meta-ethnographic approach to inductively identify key concepts and synthesize the major themes [ 17 ]. We chose the meta-ethnographic approach as it has been shown useful in other systematic reviews of qualitative health literature in that it utilizes an inductive approach that can account for differences in methodology and focus, and has the potential to provide a higher level of analysis and generate new research questions [ 18 , 19 , 20 ]. We conducted three steps of analysis: (1) Identifying original concepts and ideas from each paper that related to cross-cutting themes; (2) synthesizing these ideas into cross-cutting themes; and (3) identifying major themes. These steps are outlined in Table  2 . Original concepts were topics discussed in each paper, which the authors felt had some relevance to this paper’s focus on humanitarian research ethics. Cross-cutting themes were key concepts that were identified in at least two different articles. We assessed how the cross-cutting themes may fall into broader overarching ideas and coded these into related non-mutually exclusive groups we termed major themes. The synthesis process of extracting these major themes was one of reciprocal translation and constant comparison of concepts across studies. The process elucidated tensions and areas for future research within each major theme, as shown in Table 2 . Any disagreements on the analysis were resolved with discussion and consensus.

This research, based on previously published literature, did not meet criteria for Institutional Review Board approval.

Of the 1459 unique articles resulting from our search terms, 52 matched our inclusion criteria (Table 1 : List of Included Articles). The articles took the shape of five non-mutually exclusive categories of analysis: 32 were expert statements, 18 were case studies, 11 contained original research, eight were literature reviews and three were book chapters. All included articles were published in English. Thirty-four of the 52 (65.38%) articles were published in 2015 or later, ten between 2007 and 2014, and eight were published in the 1997–2006 decade (Fig.  2 ). Of the 52 articles included for final analysis, 23 were published by international teams (meaning that they were comprised of members from at least two different countries), 12 were from the United States, six from the United Kingdom, three from Canada, two each form Ireland, Trinidad and Tobago, and Switzerland, and one each from Australia and India.

figure 2

Included articles by publication date

Thematic analysis

The step-wise analysis is presented in Table 2 . First order analysis of the articles meeting our final inclusion criteria revealed ideas and issues within the context of ethics related research in humanitarian settings. In the second phase of the analysis, qualitative review of the reports identified cross-cutting themes between the papers, and 10 major themes that encompassed these concepts and points. These major themes in descending order of prevalence were ethics review process (21 articles, [40.38%]); community engagement (15 articles [28.85%]); the dual imperative , or necessity that research be both academically sound and policy driven and clinical trials in the humanitarian setting (13 articles for each, [25.0%]); informed consent (10 articles [19.23%]); cultural considerations (6 articles, [11.54%]); risks to researchers (5 articles, [9.62%]); child participation (4 articles [7.69%]), and finally mental health , and data ownership (2 articles for each [3.85%]).

Ethical review

Discussion of the ethical review process was the most commonly identified theme, with 21 articles having a substantive focus on this [ 11 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 ]. Independent ethics review prior to the start of a study is a core component of research ethics. Tansey et al. conducted a survey of ethics review board members with experience in reviewing research ethics in disaster settings. Their results suggest a general feeling that research in this setting is not only of particularly high social value, making it a desirable pursuit, but also necessitates a higher level of justification due to the inherent vulnerability of the research subjects [ 33 ]. There is also general agreement that the innate fluidity and urgency of humanitarian situations make swift and efficient ethics review of paramount importance [ 11 , 25 , 29 ]. Hunt et al. report, “where research is launched in response to a sudden-onset disaster such as an earthquake or hurricane, researchers may need to initiate their protocols quickly in order to answer research questions pertinent to the acute phase of the disaster response” [ 11 ]. However, as mentioned above, the particular vulnerability of the subjects being studied leads many research ethics committees to automatically identify humanitarian research as requiring “the highest level of stringency”. On the other hand, framing research as “needs assessments” and/or “monitoring and evaluation,” which is often done in evaluating aid needs and programs, may act to sideline rigorous ethical review and jeopardize the well-being of the recipient population [ 11 ]. This contradiction of values makes ethical review of humanitarian research particularly challenging.

Authors suggested strategies to mitigate the inherent challenges of ethics review in this setting [ 25 ]. For example, Hunt et al. suggest pre-approved research protocol templates which can be quickly customized for use in individual emergencies [ 11 ]. Eckenwiler et al. propose what they refer to as ‘real-time responsiveness,’ which is an iterative strategy of constant dialogue between ethics reviewers and researchers while studies are being conducted [ 24 ]. Given the potential for misstep in an expedited initial ethics review, Chiumento et al. describe the utility of a post-research ethical audit. The authors explain how this could help to evaluate “procedural ethics against in-practice realities”, which could help inform future studies [ 21 ]. Ethical analysis after data collection may also offer the added benefit of offering lessons on the review and practice process to the reviewers and researchers.

Our results highlighted the particular case of how the humanitarian aid agency Médecins Sans Frontières’ (MSF), who conducts substantial research in humanitarian settings, has devised an independent Ethics Review Board (ERB). The ERB utilizes several of the strategies mentioned above such as pre-approved protocols, engaging in ongoing dialogue between researchers and the ERB and conducting post-research evaluations [ 29 , 31 ]. Saxena et al. reported on a joint panel conducted by the WHO and the African Coalition for Epidemic Research, Response and Training. The authors outline the group’s recommendations for “rapid and sound ethics review”, which includes “preparing national ethics committees for outbreak response; pre-crisis review of potential protocols; multi-country review; coordination between national ethics committees and other key stakeholders; data and benefit sharing; and export of samples to third countries” [ 32 ]. Indeed, as Mezinska et al. point out in their systematic review of ethical guidelines, most of the analyzed documents included in their report did “not attempt to give researchers and other stakeholders a comprehensive overview of how to proceed ethically in all types of research and in all types of disasters”, which the authors see as problematic given that “disaster research is unavoidably context and time sensitive, making generalized guidance less applicable” [ 35 ].

Community engagement

Substantive involvement of the community being studied was identified as an imperative for researchers and a major theme of discussion in 15 articles [ 21 , 22 , 30 , 32 , 33 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 ]. It was generally agreed that active participation is necessary in order to fulfill the ethical requisite that research be of use to the community being studied (also known as beneficence) [ 22 , 48 , 50 ]. As Chiumento et al. identified in their systematic review of mental health literature, the right to participate in research can be viewed as a basic right in and of itself, insofar as it relates to other rights such as self-determination and autonomy [ 22 ]. One important strategy described was involving local community health and government officials in an effort to maximize community support [ 43 ]. More practically speaking, this effort can help limit potential for a community’s misunderstanding of research, which can jeopardize a project’s legitimacy and undermine its acceptance [ 46 ]. Early involvement of community actors, potentially via consultation during study protocol design or community meetings, was suggested [ 21 , 42 ].

The discussions within the articles suggest that community involvement also involves strengthening local institutions, effectively improving their ability to conduct their own research [ 21 , 22 ]. Despite being recognized as an important component of ethical research, it was generally agreed that there is a critical shortage of local capacity to carry out studies, particularly in post-conflict zones where formal institutions are often eroded [ 45 , 47 ]. In their study on the research capacity of Somaliland, Boyce et al. identified potential harms of a “dominance of authors from [High-Income Countries]” [ 45 ]. They explain that, for example, the unrelatability between researcher and subject could lead to a reduced relevance of the research question.

Despite the agreement for “a set of practices that help researchers establish and maintain relationships with the stakeholders to a research program”, Tansey et al. discuss some of the inherent challenges in community participation. Particularly when conducting disaster research, the practicality of including locals can be difficult when “you don’t know when the disaster is going to hit. .. so it would be hard to set up community approvals and engagement beforehand” [ 33 ]. Furthermore, lack of adequately trained researchers and poor local infrastructure are perennial problems [ 45 ]. While ethically desirable, partnering with the local community may, in many circumstances, often prove practically prohibitive.

While including local authorities in research may seem prudent on face value, as discussed in the section on cultural considerations, these articles make clear the potential for ethical ambiguity when dealing with such actors [ 47 , 49 ]. For example, in a civil war context, researchers may hope to adhere to humanitarian principles of impartiality to ensure access to participants and safety for researchers [ 49 ]. Furthermore, as Funk et al. describe in their evaluation of the response to the Syrian conflict, remaining impartial can be impossible. One respondent explained, “You have to understand that even though we declare ourselves as a non-biased health organization with no political standing, the mere fact that we are not ‘pro-government’ makes us [perceived as] ‘the enemy’ and ‘anti-government’” [ 49 ].

The dual imperative

Thirteen articles discuss what humanitarian researchers refer to as the ‘dual imperative,’ which is the inherent tension between ensuring that research is both academically sound and practically relevant [ 28 , 41 , 53 , 55 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 71 ]. Despite the inherent challenges in humanitarian research, the general consensus is that it is justifiable insofar as it is needs-driven and not at the expense of humanitarian action [ 60 ]. However, as researchers attempt to construct sophisticated research and attract funding, there is a move toward a greater level of academic sophistication [ 59 ]. On the individual level, a member of a humanitarian response team may feel responsibilities as both service provider and researcher [ 58 , 61 ]. Wood, in her description of experiences researching conflict zones in El Salvador, describes an inevitable self-inquiry of why this research is worth pursing at the expense of a purely humanitarian medical relief mission. She concludes that her role as a researcher was justified in that a sound understanding of conflict is necessary for its abolishment. Wood does, however, concede that this conclusion may be predicated on the nature of the “relatively benign and coherent conditions” of her work. Specifically, she “did not have to make a decision whether or not to intervene to attempt to prevent or mitigate an attack on civilians.” She “did not have to decide how to leave an area under attack at short notice, retreating with one force or seeking shelter from another.” She was “never faced with direct threats [insisting] that [she] turn over material [she] had gathered” and did not have “to judge how far to press respondents about violence they had suffered or observed because of the focus of [her] research.” The implication was that had she been faced with one of these more charged situations, her resolve in the justification of research would be challenged. In fact, she ends her discussion by stating that “conditions in many civil wars simply preclude ethical field research” [ 62 ].

Another related point of contention identified in our search is a disagreement that arose between a researcher and aid agency. Due to an overtaxed and under resourced system, the Democratic Republic of Congo had engaged in rationing of AIDS medications. Rennie, a global health researcher, had intended to study the community attitudes toward this practice [ 55 ]. Feeling rationing medications to be unethical, the aid agency Médecins Sans Frontières (MSF), specifically MSF-Belgium, wrote a letter informing Rennie that they would not support his investigation [ 55 , 63 ]. They expressed concern that the research might be a form of acquiescence to the practice of drug rationing, which they see as antithetical to the humanitarian mission [ 63 ]. This tension between assessing an existing program and unintentionally bringing legitimacy to it is one of many practical conflicts in humanitarian research that requires further consideration.

Clinical trials in the humanitarian setting

Given that clinical trials are considered imperative for investigating medical interventions, many researchers advocate for these types of studies in the humanitarian setting. Thirteen articles explore the ethics of conducting clinical trials in the humanitarian setting [ 27 , 29 , 30 , 36 , 38 , 46 , 51 , 52 , 53 , 54 , 55 , 56 , 63 ]. Lanini et al. make the point that the principle of clinical equipoise should apply in the humanitarian setting as in any other, making randomized controlled trials (RCTs) the most ethical way to conduct research in this situation, using the recent Ebola outbreak and subsequent drug trials to illustrate their point [ 51 ]. With respect to Ebola, Perez et al. make the claim that, given the lethality of the disease, not including pregnant women and children (two groups often excluded from trials on grounds of inherent vulnerability) in Ebola trials is unethical [ 46 ]. This, however, presupposes a benefit to the experimental arm of a hypothetical trial, which would violate the principle of clinical equipoise and thus Lanini et al.’s justification of clinical trials outlined above [ 51 ]. Salerno et al. argue that the unique circumstances of conducting research in humanitarian settings necessitates that the researcher be less stringent in terms of study design. As the authors explain, “the recipients of experimental interventions, locations of studies, and study design should be based on the aim to learn as much as we can as fast as we can without compromising patient care or health worker safety, with active participation of local scientists, and proper consultation with communities” [ 52 ].

Again, with a focus on the recent Ebola outbreak, Calain makes an argument that insistence on RCTs, in which, by definition, one group of participants will be denied the experimental treatment, equates to a preference toward a collective interest (i.e. societal) over the individual (i.e. the patient) which could violate the basic principle of beneficence [ 53 ]. For Calain, in the face of a catastrophic illness like Ebola, randomization of interventions is seen as a “tragic choice” for humanitarian workers [ 53 ]. Furthermore, as Schopper et al. explained, there is justifiable concern that clinical trials during such an epidemic, which require significant amounts of resources and planning, would detract from the crucial work of directly caring for patients in a resource limited setting [ 29 ].

Informed consent

Like formal ethical review, informed consent is another core component of modern research ethics and was separately discussed in ten articles [ 21 , 22 , 23 , 27 , 37 , 38 , 44 , 46 , 65 , 66 ]. Our results highlight several unique considerations when contemplating informed consent in humanitarian settings. For example, Western norms of written consent might be impossible if research is carried out in a population with low literacy rates or when written consent can violate the need for complete anonymity or expeditious research [ 21 , 22 , 44 ]. Controversy surrounding traditional ideas of informed consent were highlighted by Chiumento et al. in their literature review [ 22 ]. The authors explain that despite the general consensus that informed consent was central to ethical research, there were some authors who emphasized a more informal process that considered “consent as a partnership between researchers and participants” [ 22 ]. Some authors surveyed in the study supported flexibility in informed consent by utilizing a “consent framework” that presumably ensures norms such as autonomy and capacity, but allows some latitude for the researcher to adapt to the circumstances. Germane to this point is what Black et al. describe as “dynamic consent”—where a participant’s willingness to be involved in a project is constantly reassessed [ 44 ].

Chiumento et al. explain that because of cultural norms, the typical processes of consent may be undesirable or even impossible [ 21 ]. In their case study of research conducted in a post-conflict setting in South Asia, they explain that the procurement of informed consent first required permission from gatekeepers (i.e. household males and village elders) [ 21 ]. They outline the concept of negotiated consent in which collaboration with researchers helps to distil what exactly culturally specific consent would look like and proceed with an ad-hoc consent process [ 21 ].

Our results suggest that special attention be paid to informed consent during clinical trials conducted in the humanitarian setting [ 29 , 46 , 51 ]. Particularly illustrative is the idea of informed consent for experimental therapies during the Ebola outbreak in West Africa in 2014–2015 [ 46 ]. Authors raise the question as to whether or not informed consent, free of coercion, can really be possible when potential subjects are faced with such a deadly disease [ 23 ].

The use of participatory visual methods (PVM) poses specific challenges with regard to informed consent. The methods ask researchers to encourage subjects to engage in creative forms of communication and expression, such as drama, photography, film, drawing, design, creative writing and music. The products can then be used to engage the community and answer research questions.

However, as participants are synthesizing novel content during the study, and are often encouraged to draw on traumatic experiences as inspiration for this content, fully informed consent is impossible. This is because neither participants nor investigators can completely anticipate which direction their facilitated creative endeavors might turn [ 44 , 65 ]. This type of research may require more creative or dynamic forms of consent such as frequent check-ins with participants, or “dynamic consent”, as described above.

Cultural considerations

The importance of strong appreciation, humility, and understanding of local culture was discussed to a robust degree in six articles [ 21 , 47 , 50 , 57 , 64 , 67 ]. As Black et al. explain, research can only be legitimate if it accepts the people as central actors [ 57 ]. They describe how community and cultural dynamics may be vital to ensuring that the products of research not be utilized in perverse ways [ 57 ]. The authors explain that analyzed and interpreted data on a particular population could be of strategic value to belligerents in a conflict setting [ 57 ]. This notion presents an obvious ethical challenge as it has the potential to make researchers active participants in conflict or surveillance. One may conclude that the solution is for researchers to refuse to share data with any local authorities. This, however, conflicts with what Ditton et al. refer to as a vital aspect of ethical field research, namely “the importance that the researcher has an appropriate relationship with the legitimate gatekeepers [and policy makers] of a field site” [ 47 ]. As the authors note, local authorities may have perfectly legitimate reasons for demanding cooperation and transparency from researchers. For example, in Thailand, government control of researchers might be justifiable since they espouse it as necessary to ensure that the local population is the ultimate beneficiaries of the research produced within their communities. The government, being responsible for the public’s well-being, argues that having some control over research activities is necessary for them to meet this responsibility [ 47 ].

Despite general agreement about the importance of respect for local customs, there is more ambivalence toward which, if any, customs might justifiably be ignored. Bennouna et al. in their survey of researchers explain that 15% of respondents did not believe that local attitudes should be taken into account when deciding on including children in a study, because “what if they tell us not to listen to children?” implying that local norms should not preclude children from having a right to be heard [ 67 ]. In contrast, Chiumento et al. suggest “that ethical conduct of research does not equate to importing cultural norms.” The authors continue to describe a common “ethically charged dilemma” in which consent or access to participants first requires permission from a “gatekeeper.” Cultural norms may dictate that (often male) household or community leaders are to make decisions in terms of participation and access to research, depriving some members of the community of basic “ethic and human rights norms” such as autonomy and the right to participate or refuse [ 21 ]. These points highlight an unanswered question regarding the universality of ethical principles.

Not only might respect for cultural norms be inherently ethically desirable, but it may also be important for ensuring community participation. As Mfutso-Bengo et al. explain, respect for cultural norms may be necessary “to ensure active community involvement as the community does not perceive overt threats to their way of life” [ 50 ]. Balancing fundamental ethical principles of inclusion and autonomy with cultural norms, the articles agree, requires deep cultural understanding.

Risks to researchers

Five of our included articles discuss the potential risk to researchers working in a humanitarian setting [ 21 , 23 , 49 , 68 , 69 ]. With the inherent instability of many of these contexts, Chiumento et al. summarize the wide range of potential risks to the wellbeing of researchers, stating that “threats to physical safety; risk of psychological distress; potential for accusations of improper behavior; and increased exposure to everyday risks such as infectious illnesses or accidents” must be recognized [ 21 ]. The very nature of conducting research in disaster settings exposes researchers to the potential of witnessing “human carnage and physical destructiveness” [ 23 ]. While researchers have personal decision-making responsibilities, host organizations must also acknowledge their obligations to provide security and mitigate risks while ensuring the researchers are fully informed of potential dangers [ 23 , 69 ].

Child participation

Child participation in research was discussed in four articles [ 43 , 65 , 67 , 70 ]. There was a general consensus that despite being particularly vulnerable, researchers had an ethical responsibility to include children in their studies. This action is necessary, the authors conclude, in order to ensure that children’s voices are heard and that they are not excluded from potential benefits of the research [ 67 ].

D’Amico et al. explain “researchers need to develop specific approaches that ensure children understand the benefit of participating voluntarily in research and that consent is informed and an ongoing process” [ 65 ]. The challenge, however, as the authors explain, is that through research, particularly qualitative forms such as PVM, “dangerous emotional terrain” might be breeched [ 65 ]. The implication is that it is difficult to know whether anyone can fully consent to these unforeseen emotional responses, especially children.

Data ownership

Two articles describe the unique ethical concerns surrounding data ownership when conducting research in the humanitarian setting [ 45 , 57 ]. Often, none of the researchers in question are from the communities being studied, so the potential ethical pitfalls of an abusive extractive nature of data collecting might be created [ 45 ]. The concern arises when researchers from high-income countries collect data on lower income communities and the ultimate benefits are seen in the former [ 57 ].

Mental health

Mental health research, which was discussed in two articles, has some unique features, which create special ethical issues [ 21 , 22 ]. For example, Chiumento et al. describe how community mistrust, stigma and paranoia can be particularly significant with regard to mental health, complicating mental health research [ 21 ]. There is also a particular importance for confidentiality and anonymity during mental health research given the potential for discrimination and stigmatizing behavior [ 22 ].

With the drive toward professionalization of humanitarian practice comes a need to develop a strong evidence base. While the latter half of the twentieth century has seen promising trends in favor of ethical standards for research, the unique conditions of humanitarian work and the particular vulnerabilities of the communities being studied makes exploration of humanitarian research ethics imperative. The time-sensitive nature of the work in combination with complex cultural and security dynamics makes conducting research in the humanitarian setting inherently difficult from an ethical perspective.

Efforts to better understand the nexus between research and humanitarian emergencies are expanding. Other research, including an ongoing review of ethics of humanitarian research and more focused analyses of ethics among specific crises will service to expand this knowledge base [ 72 ]. We hope that this paper, representing a broad review and meta-ethnographic analysis of ethical issues in research over more than two decades, strengthens ethical processes and decision making in the humanitarian sector.

Among the 52 articles included in the analysis, 10 major themes regarding the ethics of humanitarian research were extracted for future analysis. In our qualitative analysis of the articles, we found a general acceptance by authors that the increased vulnerabilities of crisis-affected populations lead to several unique issues. Though identified and described in our search, many of these issues have yet to be adequately resolved in a way that might be useful to further researchers. For example, with regard to respect for local cultural norms, our results highlight a unique conflict between a cultural or political demand to share research with a local authoritative body and moral or ethical apprehensions to do so [ 47 , 57 ]. Authors identified both acceptable and unacceptable reasons for an authoritative body to demand access to research [ 47 , 57 ]. The researcher must then decide whether they cooperate with authorities by sharing products of their research, and risk being complicit in less socially desirable actions, or refuse and risk access to their study population, potentially depriving them of the fruits of their work. And to the related point embodied in the disagreement between MSF-Belgium and Rennie, controversy persists as to whether cooperating with an authoritative body to study a practice in which they are engaged suggests support of that practice [ 55 , 63 ]. Further exploration of these questions is essential as the role of research on humanitarian response expands.

Our results suggest that themes of cultural considerations, community engagement and mental health research incorporate ethical dilemmas related to cultural relativism. Accepting cultural norms such as gaining a husband’s consent for his wife’s participation in a research study, or excluding children from a research project on the grounds that including them is too high risk, equates to denying some of the fundamental principles of ethical research. Therefore, researching these populations may mean conceding to certain undesirable cultural norms and rejecting others that would require the researcher to compromise ethical standards. But where should the line be drawn? What guiding principles can future researchers employ? Bennouna et al.’s survey, which revealed most researchers claimed they would, if necessary, ignore local customs and include a child’s point of view in a study might help answer the question [ 67 ]. More of this type of research needs to be done in order to identify and resolve potential conflicts of local norms and traditional research ethics.

A surprising result of our study was that some researchers held the view that certain components of traditional, modern research ethics, such as formal consent, may be applied less rigidly in the humanitarian setting [ 21 , 22 , 44 ]. For example, arguments have been made that any consent is impossible in the case of experimental treatment for Ebola victims, and the failure to meet traditional standards should not preclude one from conducting this research [ 52 ]. On the other hand, there may be certain universal ethical principles of conducting research that should never be compromised. Exactly which principles these are, if any, have yet to be elucidated.

There are further unanswered questions with regard to the involvement of local institutions. Though our results point to a general agreement about the magnanimity of significant local involvement in research, including the development of local capacity for such work the inherent challenges have yet to be addressed [ 27 , 33 ]. Humanitarian research is often conducted in places with little or no infrastructure and limited numbers of qualified researchers. Including local aid workers as researchers, solely for the inherent value of doing so, may prove costly and distract from other research mandates and aid delivery, particularly in disaster relief. As Tansey et al. put it, “while the global health research literature strongly endorses community engagement in all research, there have been few suggestions for overcoming challenges to carrying it out in the disaster setting” [ 33 ]. Future work must come to terms with this inevitable conflict of ideals.

Despite the unavoidable ethical challenges, the results of this systematic review suggest that not only is it possible to conduct research in this context, but there is an ethical obligation to do so [ 41 , 48 ]. If the global community is compelled to provide assistance in the form of humanitarian action, than those in the humanitarian field must acknowledge the responsibility to develop rational, evidence-based approaches that are, at their core, ethically responsible [ 41 ]. This impulse is reflected in our results, which demonstrate an increasing number of publications on humanitarian research ethics since the inception of the Sphere project. The growing body of literature bodes well for researchers looking to ground their future work in a strong ethical foundation.

We would like to note, however, that the vast majority of articles included in this study were from high-income and Western countries. This highlights a finding in the research itself—that community participation and involvement of researchers from the countries and regions affected by crisis is limited. Addressing this inequity should be prioritized as the field of humanitarian research ethics progresses.

It should be noted that our study has limitations. We attempted to conduct a comprehensive review of the literature with a systematic review, augmented by known grey literature, but may have missed some potentially relevant literature that did not fit the search terms and was not identified via the grey literature review. This review is based primarily on published research literature and may exclude operational or programmatic reports with valuable insights. Also, though our initial search did include book chapters via the Scopus database, and dozens of chapters have been written on the subject, relatively few were screened into our final list of included literature. The reason for this is not immediately apparent. The authors did note a relative difficulty in the searching for and screening of book chapters when compared with other types of articles. This may have lead to a preferential selection of the latter type of literature, at the expense of the former.

The selection of papers was systematic and reproducible, and the analysis of those papers relied on standard qualitative methods. While the analysis may be considered less reproducible, we utilized a standardized interpretive methodology that would reliably highlight the critical findings and points within the papers as evidenced by the strong consensus between the authors (WB and RH) on almost every inclusion and exclusion decision. Though the limited literature base makes drawing firm conclusions difficult, the consistency of issues raised between and within the articles confirms the importance of the major themes elicited in this analysis.

This study represents one of only very few attempts at a systematic review of research ethics in the humanitarian setting. We identified an increase in articles with robust ethical discussions particularly in the past few years. This promising trend could lead to further clarification and stronger ethical grounding of future research. Our data also highlight a number of unanswered questions related to fundamental conflicts that are unique to conducting research in the humanitarian setting. There is a clear need for further research and debate addressing these, and other important questions, such as: When is it appropriate to share data with local authorities? At what point should a researcher abandon a cultural relativistic point of view for an absolutist one? In a modern day humanitarian setting, what components of traditional ethics review may be anachronistic? How can researchers include local stakeholders as co-investigators when they may lack the training or infrastructure to do so? Mechanisms to translate these discussions into practical guidelines will need to be strengthened if the ideals of the Sphere Project are to be realized.

Availability of data and materials

The datasets generated and/or analyzed during the current study are available as tables in the manuscript.

Abbreviations

Ethical Review Board

Low and Middle Income Countries

Médecins Sans Frontières

Randomized Clinical Trial

World Health Organization

Global Humanitarian Overview. United Nations Coordinated Support to Pepole Affected by Disaster. 2019 https://www.unocha.org/sites/unocha/files/GHO2019.pdf . Accessed 15 Feb 2020.

Google Scholar  

UNHCR - Yemen emergency. Available from: https://www.unhcr.org/en-us/yemen-emergency.html . Accessed 31 Jan 2019.

WHO Bangladesh Rohingya crisis. Word Health Organization. 2019. https://www.who.int/emergencies/crises/bgd/en/ . Accessed 31 Jan 2019.

Rysaback-Smith H. History and principles of humanitarian action. Turkish J Emerg Med. 2015;15(Suppl):5–7.

Davey E, Borton J, Foley M. A history of the humanitarian system Western origins and foundations. 2013. https://www.odi.org/publications/7535-history-humanitarian-system-western-origins-and-foundations . Accessed 15 Feb 2020.

Eriksson J, Adelman H, Borton J, Christensen H, Kumar K, Suhrke A, et al. The international response to conflict and genocide: lessons from the Rwanda experience synthesis report joint evaluation of emergency assistance to Rwanda. Organisation for economic co-operation and development. 1996. https://www.oecd.org/countries/rwanda/50189495.pdf . Accessed 15 Feb 2020.

Buchanan-Smith M. How the Sphere Project Came into Being: A Case Study of Policy-Making in the Humanitarian Aid Sector and the Relative Influence of Research. 2003. Overseas Development Institute. https://www.odi.org/sites/odi.org.uk/files/odi-assets/publications-opinion-files/176.pdf . Accessed 15 Feb 2020.

Blanchet K, Ramesh A, Frison S, Warren E, Hossain M, Smith J, et al. Evidence on public health interventions in humanitarian crises. Lancet. 2017;390(10109):2287–96.

Article   PubMed   Google Scholar  

Reverby SM. Ethical failures and history lessons: the U.S. Public Health Service research studies in Tuskegee and Guatemala. In: Public Health Reviews. 2012. https://publichealthreviews.biomedcentral.com/track/pdf/10.1007/BF03391665 . Accessed 15 Feb 2020.

Hunt M, Schwartz L, Pringle J, Boulanger R, Nouvet E, O’Mathúna D, et al. A research agenda for humanitarian health ethics. PLOS Curr. 2014. https://doi.org/10.1371/currents.dis.8b3c24217d80f3975618fc9d9228a144 .

Hunt M, Tansey CM, Anderson J, Boulanger RF, Eckenwiler L, Pringle J, et al. The challenge of timely, responsive and rigorous ethics review of disaster research: views of research ethics committee members. PLoS One. 2016. https://doi.org/10.1371/journal.pone.0157142 .

Article   PubMed   PubMed Central   CAS   Google Scholar  

The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 1978. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html .

Broussard G, Rubenstein LS, Robinson C, Maziak W, Gilbert S, DeCamp M. Challenges to ethical obligations and humanitarian principles in conflict settings: a systematic review. Int J Humanitarian Action. 2019;4:15.

Article   Google Scholar  

Ethics in Complex Humanitarian Emergencies: Summary of a Workshop. National Research Council (US) Roundtable on the Demography of Forced Migration. Washington (DC): National Academies Press (US); 2002.

Leaning J, Guha-Sapir D. Natural Disasters, Armed Conflict, and Public Health. N Engl J Med. 2013;369:1836–42.

Article   CAS   PubMed   Google Scholar  

Liberati A, Altman DG, Tetzlaff J, Mulrow C, Gøtzsche PC, Ioannidis JPA, et al. The PRISMA statement for reporting systematic reviews and Meta-analyses of studies that evaluate health care interventions: explanation and elaboration. BMJ. 2009;339:b2700.

Article   PubMed   PubMed Central   Google Scholar  

Noblit GW, Hare RD. Meta-ethnography: synthesizing qualitative studies. Newbury Park: Sage Publications; 1988.

MacEachen E, Clarke J, Franche R-L, Irvin E, Workplace-based Return to Work Literature Review Group. Systematic review of the qualitative literature on return to work after injury. Scand J Work Environ Health. 2006;32:257–69.

Campbell R, Pound P, Pope C, Britten N, Pill R, Morgan M, et al. Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care. Soc Sci Med. 2003;56:671–84.

Britten N, Campbell R, Pope C, Donovan J, Morgan M, Pill R. Using meta ethnography to synthesise qualitative research: a worked example. J Health Serv Res Policy. 2002;7:209–15.

Chiumento A, Khan MN, Rahman A, Frith L. Managing ethical challenges to mental Health Research in post-conflict settings. Dev World Bioeth. 2016;16:15–28.

Chiumento A, Rahman A, Frith L, Snider L, Tol WA. Ethical standards for mental health and psychosocial support research in emergencies: review of literature and current debates. Glob Health. 2017;13:41.

O’Mathúna DP. Conducting research in the aftermath of disasters: ethical considerations. J Evid Based Med. 2010;3:65–75.

Eckenwiler L, Pringle J, Boulanger R, Hunt M. Real-time responsiveness for ethics oversight during disaster research. Bioethics. 2015;29:653–61.

Falb K, Laird B, Ratnayake R, Rodrigues K, Annan J. The ethical contours of research in crisis settings: five practical considerations for academic institutional review boards and researchers. Disasters. 2019. https://doi.org/10.1111/disa.12398 .

Packenham JP, Rosselli RT, Ramsey SK, Taylor HA, Fothergill A, Slutsman J, et al. Conducting science in disasters: Recommendations from the NIEHS working group for special IRB considerations in the review of disaster related research. Environ Health Perspect. 2017;125:094503.

O’Mathúna D. Research ethics in the context of humanitarian emergencies. J Evid Based Med. 2015;8:31–5.

O’Mathúna D, Siriwardhana C. Research ethics and evidence for humanitarian health. Lancet. 2017;390:2228–9.

Schopper D, Ravinetto R, Schwartz L, Kamaara E, Sheel S, Segelid MJ, et al. Research ethics governance in times of Ebola. Public Health Ethics. 2017;10:49–61.

PubMed   Google Scholar  

Folayan MO, Peterson K, Kombe F. Ethics, emergencies and Ebola clinical trials: the role of governments and communities in offshored research. Pan Afr Med J. 2015;22:10.

PubMed   PubMed Central   Google Scholar  

Schopper D, Dawson A, Upshur R, Ahmad A, Jesani A, Ravinetto R, et al. Innovations in research ethics governance in humanitarian settings. BMC Med Ethics. 2015;16:10.

Saxena A, Horby P, Amuasi J, Aagaard N, Köhler J, Gooshki ES, et al. Ethics preparedness: facilitating ethics review during outbreaks - recommendations from an expert panel. BMC Med Ethics. 2019;20:29.

Tansey CM, Anderson J, Boulanger RF, Eckenwiler L, Pringle J, Schwartz L, et al. Familiar ethical issues amplified: how members of research ethics committees describe ethical distinctions between disaster and non-disaster research. BMC Med Ethics. 2017;18:44.

Chan EYY, Wright K, Parker M. Health-emergency disaster risk management and research ethics. Lancet. 2019;393:112–3.

Mezinska S, Kakuk P, Mijaljica G, Waligóra M, O’Mathúna DP. Research in disaster settings: a systematic qualitative review of ethical guidelines. BMC Med Ethics. 2016;17:62.

Richardson T, Johnston AMD, Draper H. A systematic review of Ebola treatment trials to assess the extent to which they adhere to ethical guidelines. PLoS One. 2017;12:e0168975.

Hussein G, Elmusharaf K. Mention of ethical review and informed consent in the reports of research undertaken during the armed conflict in Darfur (2004-2012): a systematic review. BMC Med Ethics. 2019;20:40.

Alirol E, Kuesel AC, Guraiib MM, de la Fuente-Núñez V, Saxena A, Gomes MF. Ethics review of studies during public health emergencies - the experience of the WHO ethics review committee during the Ebola virus disease epidemic. BMC Med Ethics. 2017;18:43.

Aarons D. Research in epidemic and emergency situations: a model for collaboration and expediting ethics review in two Caribbean countries. Dev World Bioeth. 2018;18:375–84.

Bain LE, Ngwain CG, Nwobegahay J, Sumboh JG, Nditanchou R, Awah PK. Research ethics committees (RECs) and epidemic response in low and middle income countries. Pan Afr Med J. 2018;31:209.

Banatvala N, Zwi AB. Public health and humanitarian interventions: developing the evidence base. BMJ. 2000;321:101–5.

Article   CAS   PubMed   PubMed Central   Google Scholar  

Shanks L, Moroni C, Rivera IC, Price D, Clementine SB, Pintaldi G. “Losing the tombola”: a case study describing the use of community consultation in designing the study protocol for a randomised controlled trial of a mental health intervention in two conflict-affected regions. BMC Med Ethics. 2015;16:38.

Betancourt T, Smith Fawzi MC, Stevenson A, Kanyanganzi F, Kirk C, Ng L, et al. Ethics in Community-Based Research with Vulnerable Children: Perspectives from Rwanda. PLoS One. 2016;11:e0157042 Burns JK, editor.

Black GF, Davies A, Iskander D, Chambers M. Reflections on the ethics of participatory visual methods to engage communities in global health research. Glob Bioeth. 2018;29:22–38.

Boyce R, Rosch R, Finlayson A, Handuleh D, Walhad SA, Whitwell S, et al. Use of a bibliometric literature review to assess medical research capacity in post-conflict and developing countries: Somaliland 1991-2013. Tropical Med Int Health. 2015;20:1507–15.

Carazo Perez S, Folkesson E, Anglaret X, Beavogui A-H, Berbain E, Camara A-M, et al. Challenges in preparing and implementing a clinical trial at field level in an Ebola emergency: A case study in Guinea, West Africa. PLoS Negl Trop Dis. 2017;11:e0005545 Schibler M, editor.

Ditton MJ, Lehane L. The control of foreigners as researchers in Thailand. J Empir Res Hum Res Ethics. 2009;4:49–57.

Ford N, Mills EJ, Zachariah R, Upshur R. Ethics of conducting research in conflict settings. Confl Health. 2009;3:7.

Funk KL, Rayes D, Rubenstein LS, Diab NR, DeCamp M, Maziak W, et al. Ethical Challenges Among Humanitarian Organisations: Insights from the Response to the Syrian Conflict. In: Humanitarian Action and Ethics. London: Zed; 2018.

Mfutso-Bengo J, Masiye F, Muula A. Ethical challenges in conducting research in humanitarian crisis situations. Malawi Med J. 2008;20:46–9.

Lanini S, Zumla A, Ioannidis JPA, Di Caro A, Krishna S, Gostin L, et al. Are adaptive randomised trials or non-randomised studies the best way to address the Ebola outbreak in West Africa? Lancet Infect Dis. 2015;15:738–45.

Salerno J, Hlaing WM, Weiser T, Striley C, Schwartz L, Angulo FJ, et al. Emergency response in a global health crisis: epidemiology, ethics, and Ebola application. Ann Epidemiol. 2016;26:234–7.

Calain P. The ebola clinical trials: a precedent for research ethics in disasters. J Med Ethics. 2018;44:3–8.

Rid A. Individual and public interests in clinical research during epidemics: a reply to Calain : in response to: Calain P. the Ebola clinical trials: a precedent for research ethics in disasters. J Med Ethics. 2018;44:11–2.

Rennie S. Is it ethical to study what ought not to happen? Dev World Bioeth. 2006;6:71–7.

London AJ. Social value, clinical equipoise, and research in a public health emergency. Bioethics. 2019;33:326–34.

Black R. Ethical codes in humanitarian emergencies: from practice to research? Disasters. 2003;27:95–108.

Contractor Q. Fieldwork and social science research ethics. Indian J Med Ethics. 2008;5:22–3.

Jacobsen K, Landau LB. The dual imperative in refugee research: some methodological and ethical considerations in social science research on forced migration. Disasters. 2003;27:185–206.

Pringle JD, Cole DC. Health Research in complex emergencies: a humanitarian imperative. J Acad Ethics. 2009;7:115–23.

Wessells M. Reflections on ethical and practical challenges of conducting research with children in war zones: toward a grounded approach. In: Mazurana D, Jacobsen K, Gale L, editors. Research methods in conflict settings. Cambridge: Cambridge University Press; 2011. p. 81–105.

Wood EJ. The ethical challenges of field research in conflict zones. Qual Sociol. 2006;29:373–86.

Zachariah R, Janssens V, Ford N. Do aid agencies have an ethical duty to comply with researchers? A response to Rennie. Dev World Bioeth. 2006;6:78–80.

Jesus JE, Michael GE. Ethical considerations of research in disaster-stricken populations. Prehosp Disaster Med. 2009;24:109–14.

D’Amico M, Denov M, Khan F, Linds W, Akesson B, et al. Research as intervention? Exploring the health and well-being of children and youth facing global adversity through participatory visual methods. Glob Public Health. 2016;11:528–45.

Aarons D. Addressing the challenge for expedient ethical review of research in disasters and disease outbreaks. Bioethics. 2019;33:343–6.

Bennouna C, Mansourian H, Stark L. Ethical considerations for children’s participation in data collection activities during humanitarian emergencies: a Delphi review. Confl Health. 2017;11:5.

Mneimneh ZN, Axinn WG, Ghimire D, Cibelli KL, Alkaisy MS. Conducting surveys in areas of armed conflict. In: Tourangeau R, Edwards B, Johnson TP, Wolter KM, Bates N, editors. Hard-to-survey populations. Cambridge: Cambridge University Press; 2014. p. 134–56.

Chapter   Google Scholar  

Ethical Challenges in Humanitarian Health in Situations of Extreme Violence . Center for Public Health and Human Rights, Center for Humanitarian Health, Johns Hopkins Bloomberg School of Public Health. 2019. http://hopkinshumanitarianhealth.org/assets/documents/LR_XViolenceReport_2019_final.pdf . Accessed 15 Feb 2020.

Ferreira RJ, Buttell F, Cannon C. Ethical issues in conducting research with children and families affected by disasters. Curr Psychiatry Rep. 2018;20:42.

Leaning J. Ethics of research in refugee populations. Lancet. 2001;357(9266):1432–3.

Martin S, Abd-Elfarag G, Kuhn I, Van Bortel T, Doherty S, O’Mathuna D. A systematic review of the ethical issues in humanitarian health research. International prospective register of systematic reviews. 2018. https://www.crd.york.ac.uk/PROSPERO/display_record.php? RecordID=84470. Accessed 9 Dec 2019.

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We would like to acknowledge Parveen Parmar and Len Rubenstein for support in developing the conceptual framework of this study.

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  • Humanitarian crisis

Conflict and Health

ISSN: 1752-1505

systematic literature review ethical considerations

Ethical consideration dilemma: systematic review of ethics in qualitative data collection through interviews

Journal of Ethics in Entrepreneurship and Technology

ISSN : 2633-7436

Article publication date: 11 August 2023

Issue publication date: 14 December 2023

Qualitative research that involves the use of human participants calls for the need to protect those participants to give their honest view during data collection. This is an important part of every primary data collection in qualitative studies using interviews. This paper aims to investigate all available ethical considerations that need to be observed by the researcher when conducting primary data collection through interview and to explore the theories that underpin the ethics in qualitative studies.

Design/methodology/approach

This paper systemically reviewed existing qualitative data on ethics and gathered information that were analysed and presented on the topic area.

The findings show that ethical considerations deal with the various approaches adopted by the researcher to make the participants feel safe to participate in any given researcher. During an interview process in qualitative research, the findings show that anonymity, voluntary participation, privacy, confidentiality, option to opt out and avoiding misuse of findings are ethical considerations that must be observed by the researcher. The outcome of the investigation also shows that deontology and utilitarianism, rights and virtue are the main theories that underpin ethical considerations in research.

Originality/value

The rights of the research participants need to be respected in qualitative research to assist in gathering accurate information to achieve the objectives of study. This and other ethical principles such as anonymity, privacy, confidentiality, voluntary participation and option to opt out guide the researcher to systematically adhere to data collection approaches that yield valid results in qualitative data collection using interviews.

  • Primary data
  • Qualitative research
  • Ethical theory
  • Informed consent
  • Data collection
  • Ethical approval

Nii Laryeafio, M. and Ogbewe, O.C. (2023), "Ethical consideration dilemma: systematic review of ethics in qualitative data collection through interviews", Journal of Ethics in Entrepreneurship and Technology , Vol. 3 No. 2, pp. 94-110. https://doi.org/10.1108/JEET-09-2022-0014

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Copyright © 2023, Michael Nii Laryeafio and Omoruyi Courage Ogbewe.

Published by Emerald Publishing Limited. This article is published under the Creative Commons Attribution (CC BY 4.0) licence. Anyone may reproduce, distribute, translate and create derivative works of this article (for both commercial and non-commercial purposes), subject to full attribution to the original publication and authors. The full terms of this licence may be seen at http://creativecommons.org/licences/by/4.0/legalcode

1. Introduction

Qualitative research that involves human subjects should focus on using the best form of interaction to gather accurate information. The researcher is vested with the main ideas and the approach to interact with the participants during data collection. However, these human subjects have the choice of what kinds of information they provide to researchers based on the treatment that are shown to them by the researchers. Researchers such as Collis and Hussey (2014) and Smith et al. (2009) proposed that researchers must have a policy of respecting the rights and privileges given to human participants in any given qualitative studies to allow the freedom of expression and the option to opt out at any point during the data collection.

These and other privileges given to the human participants in a research aid in gathering information without fear or pressure from the participants. Saunders et al. (2016) also affirmed by saying that the accuracy of information gathered using interviews largely depends on the honesty of the participants, and this is caused by outlining the ethical considerations that needs to be observed by the researcher. Ethical considerations are fundamental in any kind of research, this provides the opportunity for the researcher to gather the most important information without causing any harm to the participants in the research ( Orb et al. , 2000 ). The aim of this paper is to present a systematic and comprehensive literature review on ethical considerations in qualitative data collection using interviews and highlighting the various theories that underpin the ethical issues in qualitative research.

2. Literature review

Research ethics considers the act of doing good and protecting the rights of participants in research, as well as avoiding any possible harm to any participants ( Kara and Pickering, 2017 ; UK Statistics Authority, 2022 ). Kara and Pickering (2017) further noted in their research study that research ethics often considers the elements which concerns primary data collection than secondary data. For example, in their research that analysed 29 published articles between 2000 and 2015, majority of the article (22) addressed ethical consideration such as anonymity, privacy, confidentiality, informed consent and formal ethical regulations that concerns primary data collection, and the rest consisted of other topics such as ethics and secondary data, ethics and data analysis, theory and life-writing. This became evident that though ethical considerations are associated with other kinds of data, it particularly concerns primary data collection than secondary data. This was also confirmed by Colnerud (2015) who also expressed that ethical considerations help in preventing or reducing any harm that could happen to the human participants during primary data collection. Thus, it becomes very important for the protection of human rights in any kind of research ( Cilliers and Viljieon, 2021 ). In the current trend of research investigation, it is illegal to violate human right under the pretence of research studies. The nature of ethical issues in qualitative research is so delicate as compared to quantitative research ( Drolet et al. , 2022 ). Researchers have the highest accountability to ensure that they notice or identify and foreseeable harm and safeguard the wellbeing of the participants ( Williams-Jones et al. , 2013 ). As such, the actions of researchers, especially those that engage in qualitative studies, have been under high scrutiny due to the likelihood of mistreating the human participants, to gain deeper findings and clarity of information generated.

As noted by Van Burg et al. (2022) , qualitative research has been vital in the development of theories on emerging techniques that helped the existence of men in recent times, such as crowdfunding ( Short et al. , 2017 ), digital technologies ( Nambisan et al. , 2019 ) and lean start-up approach ( Shepherd and Gruber, 2020 ). The relevance of qualitative research has called for the need to ensure internal coherence as noted by Howard-Grenville et al. (2021) where they pointed out that a perfect fit must exist in qualitative studies which helps to link the research question to data collection, data analysis, as well as findings and development of theory.

However, researchers that engage in qualitative studies are faced with three major challenges that raises the issue of ethics in data collection: the researcher–participants relationship, the subjective interpretation of data and findings by the researcher and the research design adopted ( Beauchemin et al. , 2021 ). There is the possibility of disclosing some damaging information under deception. The literature provides an example of researcher’s deception through Humphrey’s study of homosexuals ( Punch, 1994 ). Humphrey used participants’ observation as his data collection technique through the act of deception, and this raised major concerns and shocked American scholars who wanted to have his doctorate degree revoked. Humphrey engaged in controversial research where he observed homosexuals in a public bathroom, and under the disguise of working under a different investigation follows same homosexuals to their various homes. Though this contradicts the ethical principle, Clark (1996) expressed that deception allows the researcher to gather “uncontaminated” data. This approach of “deception” was adopted by Clark (1996) in her forensic unit research. While conducting research over a period of six weeks, Clarke pretended to be working as a nursing auxiliary to observe participants and later take notes. In other words, Clarke did not disclose her identify as a researcher, rather pretended to be a worker at the facility. Clark (1996 , p. 38) justified her approach by expressing that when “dealing with sensitive aspect of subject’s behaviour”, some degree of deception should be permitted. However, Kang and Hwang (2021) pointed out that the act of deception violates human right and exposes the participants to harm and danger.

Misconduct in research studies deeply affects the results of any investigation. While Bruhn et al. (2002) believed that the authenticity of research findings depends on data collection techniques, Davison (2004) also expressed that human participants can give their honest opinion on an investigation when they are given “convenient” environment to operate. Participants should not be manipulated under no circumstance to give any to be involved in a research data collection. Throughout the research life cycle, it is very important for researchers to consider any possible ethical challenges that could occur ( Giorgini et al. , 2016 ). Due to the difficulties associated with identifying any possible ethical issues, ethical committee acts as experts who access the research documents prior to the investigation to make sure all ethical “checklists” are met by the researcher ( Lynöe et al. , 1999 ).

3. Historical background to research ethics

There has been different school of thoughts when a historical account of the birth of ethics in research is being narrated. This approach to rightfully engage human participants in research started when people started to reflect on the best way to interact and live. To recall, history has it that the birth of research ethics in modern studies started when investigators had to protect the human participants in any kind of investigation. To this school of thought, the Doctors Trial of 1946–1947 gave way for a starting point to document regulations that should have been followed by investigators for the Nuremberg Trials for war criminals by the Nazis ( Annas and Grodin, 1992 ). To further expand on the scenario, there were a total of 23 physicians from Germany who wanted to conduct research with human subjects as the main participants in view of uncovering a scientific knowledge regarding limits of the human body as a result exposed those human participants involved in the research to high temperatures and altitudes ( Grodin, 1992 ).

The accused 23 German physicians ended up brutalising and torturing the human subjects involved, as well crippling most of them which led to the death of thousands of the research victims. During the Nazi racial purification policies, these physicians were also exploring ways to racially kill innocent people in a relatively painless manner for reasons of mercy. This was to relieve the foreigners of the racial discrimination met out to them by the Nazis, without their consent. These acts were the most destructive and gruesome experiments that led to the murder of thousands of victims in Germany by the Nazi party in 1942 ( Nuremberg Code, 1947 ).

Research participants must voluntarily consent to research participation.

Research aims should contribute to the good of society.

Research must be based on sound theory and prior animal testing.

Research must avoid unnecessary physical and mental suffering.

No research projects can go forward where serious injury and/or death are potential outcomes.

The degree of risk taken with research participants cannot exceed anticipated benefits of results.

Proper environment and protection for participants is necessary.

Experiments can be conducted only by scientifically qualified persons.

Human subjects must be allowed to discontinue their participation at any time.

Scientists must be prepared to terminate the experiment if there is cause to believe that continuation will be harmful or result in injury or death.

Clinical research must conform to the moral and scientific principles that justify medical research and should be based on laboratory and animal experiments or other scientifically established facts.

Clinical research should be conducted only by scientifically qualified persons and under the supervision of a qualified medical man.

Clinical research cannot legitimately be carried out unless the importance of the objective is in proportion to the inherent risk to the subject.

Every clinical research project should be preceded by careful assessment of inherent risks in comparison to foreseeable benefits to the subject or to others.

Special caution should be exercised by the doctor in performing clinical research in which the personality of the subject is liable to be altered by drugs or experimental procedure.

Following the DoH in 1964, the development of the “Belmont Report” in 1979 became the next set of ethical guidelines that was proposed by the National Commission for the maximum protection of human participants on Biomedical and Behavioural Research. The Belmont Report reviewed and reaffirmed three key ethical guidelines that researchers must follow when dealing with human participants in research, and these are respect for persons, beneficence and justice. The Nuremberg code, DoH and Belmont Report paved way for modern approaches to research ethics in research.

4. Ethical theories

There have been several attempts by scholars in the field of ethics to provide justifications for the need to oblige to some form of principles when engaging human participants in research ( Koski, 2009 ). In essence, it is common and appropriate to consider different ethical theories that underpin the principles of a researcher to clarify what is wrong or right during data collection that involves human participants. The following are four key ethical theories that form the philosophical position of researchers during data collection.

4.1 Deontology

This ethical theory is often associated with the works of Immanuel Kant who expressed that the rightness or wrongness of an action should not be dependent on the consequences of that action, rather on whether that action is right under a series of rules ( Beauchamp, 1991 ). This is mostly regarded as obligation or duty and thus referred to as the rule-based ethics. Under this theory, people must follow their rules and do their duty. Salzman (1995) also pointed out that deontology ethical theory exists within the domain of morality which helps to guide our choice of what is right and wrong. For example, when a computer scientist who has much knowledge in hacking systems learn that there is going to be a nuclear weapon launch that could kill lots of people. Under this circumstance, the computer scientist can hack and cancel the launch of the nuclear weapon, to avoid killing of people ( Olson, 1967 ). However, the deontic view is that it is unprofessional to break into the system of the nuclear weapon without consent or permission. Deontologist advises not to breach the professional code of conduct as a computer scientist ( Waller, 2005 ).

4.2 Utilitarianism

Unlike deontology, this theory mainly focusses on the rightness or wrongness of an action based on the outcome of that action. This is born out of consequentialism which holds that utilitarianism deals with taking actions that produces the greatest benefits to the greatest number of related people ( Shaw, 1998 ). This is a moral principle that holds that the best ethical choice is the actions that produces the best benefits to the greatest number. For example, a healthy person has a good liver, kidney, heart and lungs. Imagine there are four people at the hospital who needs organ transplant each. In this instance, a healthy person can save four people with his/her organs. Utilitarianism theory suggests that the life of one healthy person can save four people at the hospital (greatest number) and that is arguably the best choice to make ( McCloskey, 1957 ). The consequence of taking the life of just one person is saving the lives of four people, though other scholars suggest that taking the life of any person is unethical.

This is a duty-based ethical theory which explains the rights of every person, and it is the duty of another person to respect those rights, thus owing up the duty to respect the rights of another. As Traer (2009 p. 103) explains:

[…] the most widely accepted justification for moral rights relies on Kant's deontological argument that we have a duty to treat every person as an end, and not to our ends, because every person is autonomous and rational, and thus has intrinsic worth.

This theory highly judges a person based on his or her character, rather than the action or outcome of event. This deals with the moral reputation of a person that determines any ethical behaviour (Annas, 1993). As the name suggest, virtue can be expressed as a morally good tendency to act well in some aspects of life ( Hursthouse and Pettigrove, 2018 ). This mainly portrays the character traits and become central to the personality of a person.

When researchers are faced with decision-making situation or data collection when there is the need to adhere to ethical considerations, there are several ethical theories that gives the guidelines to reach a decision that is ethically correct. To reach the right decision when dealing with human participants, each ethical theory helps to adhere to the best practices that lead to taking the best decision.

5. Qualitative research

The choice of this type of research largely depends on the philosophical position of the researcher. This type of research relies on the information supplied by the human subjects in the research. They hold the idea that human subjects under any given piece of research should be given the chance to bring out their views about the topic area in the research. This should be devoid of any predetermined set of questions that gives participants less chance to express themselves. As expressed by Merriam (2009) , qualitative researchers are interested in understanding the meaning people have constructed, that is, how people make sense of their world and the experiences they have in the world. This was affirmed by Parkinson and Drislane (2011) who also expressed that qualitative research use research techniques such as case studies and participants which helps in narrative and descriptive nature of practice. The most common idea from both authors concludes that qualitative research investigates events in their natural settings and successfully attempts to make meaning to the research based on the meanings the human subjects attach to them. Simply put, qualitative research deals with the gathering and analysing of non-numerical data to explore views, experiences or opinions of others.

6. Current and emerging trends in qualitative research

The community of research in qualitative studies has gone through several changes from where the human participants are harmed to the stage where the rights of participants are highly respected and protected ( Roth and von Unger, 2018 ). Qualitative researchers tend to treat ethics as the main characteristics between the researcher and what is researched. To move further, the advancement in technology has led to the transformation of many fields of research and qualitative research is no exception. As a result, qualitative research is going through tremendous and rapid changes and any researcher interested in such investigation should know the state of development in qualitative research ( Costa and Moreira, 2019 ). These changes and other emerging trends could be seen in three main areas ( ESOMAR, 2010 ): sources of data, data collection and analysis of data.

The traditional data sources under qualitative research were mainly through interviews, observation, focus groups and recordings ( Gill et al. , 2008 ). Currently, these methods have been heavily complemented by virtual, textual, visual and other data that is gathered from social media. The introduction of Web 2.0 technologies (interactive contents) has led to the development of social media platforms that enables people all over the world to share their lives and other private information online which is accessed by people all over the world ( Sykora, 2017 ). With creativity and innovation, qualitative researchers have found ways to leverage on this trend to conduct high quality research. As such, as many people around the world creates accounts on Instagram, Facebook, Twitter and other social media platforms, there are vast amount of qualitative data streams that could be accessed by the qualitative researcher. In a nutshell, social media platforms have become an additional source of data for researchers.

The consequence of data available on social media platforms has brought about other emerging data collection tools such as data mining and web crawling techniques used in recent times. For example, software programmes such as Ncapture have been integrated into NVivo which helps to capture social media contents for fast qualitative data analysis. Ncapture is a free web-browser extension created for internet explorer and Google chrome which helps the researcher to collect contents from the web to effectively import into NVivo for qualitative data analysis ( Tom and Richards, 2003 ; Zamawe, 2015 ). This has led to the introduction of “netnography” (the combination of network and ethnography) as a new form of qualitative social media research. Netnography is a specific type of qualitative social media research that relates to data collection, analysis, representation and research ethics that is deeply rooted in research participant’s observation ( Kozinets, 2017 ). Kozinets (2002) further explained that netnography uses an interpretative research philosophy which helps to adapt participants’ observation approach of anthropology to the detail investigation of involvement and experiences which manifest through digital communications.

The traditional qualitative data analysis consists of using humans to code texts manually ( Saunders et al. , 2016 ); however, the introduction of social media research has turned efforts to using automated content analysis (ACA). This consists of techniques that are used to automatically analyse social media contents. Scholars such as Stockwell et al. (2009) and Sievert and Shirley (2014) added that ACA helps qualitative researchers to engage in large-scale data analysis and helps to produce efficient results.

7. Qualitative data collection methods and procedure

7.1 methods.

Data collection is one of the most important parts of every research investigation. It is the systematic process of gathering and collecting information on the interested variables in research to answer the research question and evaluate the outcome of a research (Collis and Hussey, 2016; Saunders et al. , 2016 ). In a qualitative research where human participants are involved, data collection translates into the various processes of gathering and collection data from the targeted participants about the topic area, through, for example, interviews. There are several methods of qualitative data collection, and it is up to the researcher to justify the methods used. The choice of data collection methods for qualitative research is highly influenced by the research philosophical positioning of the researcher ( Saunders et al. , 2016 ). The most common method of collecting qualitative data is through, interviews, group discussions or focus group, observations, surveys and note taking. It is worth mentioning that the interview could take place via telephone, online (through Skype, Zoom and Teams) or face-to-face, and be recorded for analysis. The focus of the research investigation is interviews as the main qualitative data collection methods.

7.2 Interviews

This is the most common form of data collection for qualitative research investigation (Collis and Hussey, 2016). This presents the great opportunity for researchers to fully interact with the participants to solicit for data about a topic area. There are several forms of interviews that are available to the researcher such as unstructured, semi-structured and structured interviews (Oats, 2016). Researchers can choose any form of interviews for the data collection based on the depth of data to be collected to answer the research questions.

7.3 Procedures

A long-standing process of conducting interviews to solicit for information from participants suggests that the researcher must have four main documents ready and to be sent to the participants (interviewee) before conducting the interview ( Denzin and Lincoln, 2011 ). These documents are as follows: consent form, information sheet, interview guide and introduction letter (when the researcher is seeking to involve organisations or institutions).

7.4 Information sheet

It is mostly called participant’s information sheet ( Creswell and Plano Clark, 2007 ). This is a written document that gives the summary of the research project and detailed out how the participants will be affected by their involvement in the data collection for the study ( Saunders et al. , 2016 ). Areas that are clearly detailed out in the information sheet are: (1) What is the study about? (2) How do I join? (3) What happens to the information? (4) Do I have to take part in the research? (5) Will I benefit from the research? and (6) What if I change my mind. These and many other information are provided on the information sheet to give the interviewee an awareness of the research investigation and how he or she will be protected.

7.5 Consent form

Having read the information sheet and become aware of the project, interviewees are given the consent form to sign to show their willingness to take part in the research. This is therefore a signed document that outlines the informed consent of an individual to partake in a research study (Collis and Hussey, 2016). In most cases, the consent form has some information with a tick box against it, asking individual to tick to agree to some key information that will take place in the research before finally signing the document. Some key information that requires a “tick” by the individual (interviewee) are (1) I confirm that I have read and understand the information sheet dated for the above study, (2) I understand that my participation is voluntary and that I am free to withdraw at any time, without giving any reason and (3) I understand that my name will not appear in any reports, articles or presentations.

7.6 Interview guide

Usually limited to a one-page document ( Menzies et al. , 2016 ), the interview guide simply lists the high-level topics that the researcher plans to cover in the interview with the high-level questions that the researcher wants the interviewee to answer under each topic. The topics and questions written on this document is guided by the research questions ( Lazar et al. , 2017 ) that is necessary and sufficient to achieve the aim of the research.

7.7 Introduction letter

This is a letter that is written to an organisation to allow members of its staff members to be involved in data collection ( Saunders et al. , 2016 ) or to seek permission to retrieve data from archives of the organisation, thus often called organisational letter.

All these documents mentioned above must be made ready to commence an interview by the researcher. The researcher through a sampling technique, selects and sends an invitation to the participants and records the number who has agreed to be interviewed. The interview is then recorded and transcribed for analysis.

8. Ethical considerations in conducting interviews

When the information sheet, consent form and interview guide has been designed by the researcher, it now time for the researcher to commence the interview process. This is the time where ethical considerations become very relevant. The following are some of the ethical considerations that must be observed by the researcher during the interview process.

8.1 Anonymity

Providing anonymity to the interviewees means that all the information collected is devoid of personal details of the interviewee such as address, email, name and other key information that could lead to the identification of the interviewee ( Crow and Wiles, 2008 ). Ensuring anonymity of information collected gives protection to the interviewees and allows them to give out key information which ensures reliability of findings ( Saunders et al. , 2015 ). This helps to protect the privacy of voluntary participants in the research investigation.

8.2 Privacy and confidentiality

The interviewer must ensure that any information collected from the interviewee must remain private and confidential; thus, ensuring that no third party has access to the raw data unless otherwise stated by the interviewee for exposure.

8.3 Voluntary participation

To gain reliable information from the interviewee, none must be forced or induced to participate in the research investigation. Forcing participant will mean that they are not willing to give out any information but for material compensation, they will take part which could lead to the collection of false information. Allowing for voluntary participation will ensure that participants understand the research area and accept to engage in the data collection ( Mumford et al. , 2021 ).

8.4 Option to opt out

The researcher must respect the rights of interviews at any point during the data collection to opt out. When this happens any already collected data about the participants must be discarded. This ensures that no interviewee is forced to engage in the research if some questions go against their virtues ( Mumford et al. , 2021 ). The researcher owes it a responsibility to respect the rights of the interviewees.

8.5 Non-maleficence/Beneficence

The ethical principle of non-maleficence and beneficence describes the researcher’s obligation to fully avoid causing any harm to the participant intentionally or be able to identify and eliminate any source of harm to the participant ( Guillemin and Gillam, 2004 ). The researcher in this instance should not over-burden the participant with more questions or create a situation where the participant feels uncomfortable. Any deliberate attempt by the researcher to cause an unwelcome environment will impact negatively to the responses that will be gathered ( Wilson et al. , 2008 ). This was initially a concern in the nursing research where a patient places full trust in the hands of a nurse or health officer, and therefore suffers a deliberate harm by the health officer which could be avoided ( Alderson, 2000 ). For example, where patients handle sensitive and private information to the health officer due to trust. Table 1 below gives a typology of ethical concerns faced by interviewers.

9. Key ethical concerns in entrepreneurship and technology

Technology and entrepreneurship are constantly developing fields that provide numerous benefits to society. However, they also bring up a few ethical concerns. The following are some of the most important ethical issues in technology and entrepreneurship:

Privacy: Personal data collection, storage and use are now easier than ever thanks to technology ( Reynolds, 2019 ). This raises concerns regarding who has access to that data and how it is being used. Technologists and entrepreneurs must respect the privacy of individuals and be open about their data practices.

Security: Cyberattacks and data breaches are becoming increasingly common as technology usage rises ( Reynolds, 2019 ). Business owners and technologists should do whatever it takes to safeguard client information.

Intellectual property: New concepts and inventions are frequently developed through technology. Intellectual property rights must be respected by technologists and entrepreneurs alike, and they must avoid violating the rights of others ( Reynolds, 2019 ).

Bias and discrimination: If technology is not designed and implemented in a way that is fair and inclusive, bias and discrimination can continue ( Van Burg et al. , 2022 ). Technologists and entrepreneurs need to be aware of the possibility of bias and discrimination and take steps to reduce it.

Social obligation: Technologists and entrepreneurs have a responsibility to think about how their products and services will affect society ( Van Burg et al. , 2022 ). They should guarantee that their developments are not unsafe to society and that they are adding to everyone's benefit.

Labour issues: Entrepreneurs and technologists must consider the effects on workers as technology alters the nature of work. They should guarantee that their advancements do not prompt work dislodging or double-dealing ( Van Burg et al. , 2022 ).

Business and innovation present numerous moral difficulties that should be tended to. It is essential for technologists and entrepreneurs to be aware of these issues and to take steps to guarantee that their innovations are socially responsible and beneficial.

10. Gaining ethical approval

Research that involves the use of human participants needs to seek for ethical approval from an ethics committee. Saunders et al. (2016) further expressed that all research that involves human tissues requires that ethical approval must be sought by the university’s research ethics committee. Obtaining ethical approval means that the researcher has adhered to the acceptable ethical standards of a reliable and genuine research study ( Bickman and Rog, 2009 ).

For the application process, the researcher must make available the research proposal, together with the data collection instrument, participants’ information sheet, consent form and then apply for ethics from the university’s ethics committee by filling the ethics form online and attaching the proposal for submission. The ethics committee has been named differently by many universities based on the country or university of application, for example, it is called the “Institutional Review Board” (IRB) in the USA. Section 9 below gives a detail overview of IRB and its composition. The ethics committee (or IRS) reviews the application and examines the proposal to meet all requirements per the ethics standards. Once all requirements are met by the applicant (researcher), ethical approval is granted for the research to commence.

11. Institutional review board

The IRB is also referred to as an independent ethics committee ( Mohamadi et al. , 2014 ) with the sole mandate of reviewing the proposed research methods by researchers to ensure that the methodological pathway is ethical. This is an officially constituted group under the FDA in the USA. This committee is called “Research Ethics Committees” in Spain. This committee assumes the central role in research by approving (or rejecting), monitoring, reviewing social science research involving human participants. The primary aim of the IRB is to conduct a high-level risk-benefit analysis to determine whether research involving humans should be allowed and thus brings no harm and other related risk to the human participants involved ( McNeil, 2014 ).

The purpose of the IRB is to ensure that various steps are taken by the committee to assist in protecting the rights and welfare of the human elements in the research. This means that by the review of the research protocols and other related materials by the IRB, any psychological or physical harm are eliminated ( Alicia, 2009 ). The review process takes the form of assessing the research methods and fully promoting informed consent and voluntary participation by all participants who can make such decisions. The composition of IRB varies among countries; however, it consists of academic scholars and other non-academic scholars which helps to bring a greater scope of understanding and helps to ensure sense of ethics in human-related research. It important to note that the IRB is often applied in health and other social science research which includes sociology, psychology and anthropology. This research often relates to social behaviour, attitude or opinions, as well as research on the quality of health care provided and means of improving the health-care practices.

The growth of research in ethical considerations and debates among qualitative researchers to adapt the IRB reviews to social science research necessitated the formation of specialised ethics committees (as called in the UK) to exclusively oversee social science research investigations. For a better review by the IRB, the specialised ethics committee tries to adequately understand research conducted by social scientists.

It is a usual practice that universities around the world publish all ethical concerns that must be addressed in respective research on their official websites. Students are expected to carefully review such principles and apply to their research. Due to differences or constant changes in culture, all ethical committee members must be subjected to constant training programme to be able to incorporate new and updated cultural changes into the ethical principles for students to be aware. This will help to improve the ethical committee processes. In addition, these ethicists must train teachers or supervisors who oversee the work of research students so that they can acquire the updated and most relevant ethical issues in qualitative research. These supervisors will also teach and explain to students how to apply all needed concerns in ethics. Because ethical concerns are mostly general in most qualitative research, through training programme organised for the students, they become aware to a more narrowed and focused ethical concerns regarding the specific human participants in research. In a cycle of approach, well knowledgeable students on specific ethical issues in qualitative research are more likely to address all ethical concerns before applying for ethical approval. This situation improves the process of the ethics committee and makes their role more effective by responding to students’ applications promptly, because of rightfully responding to all specific ethical concerns. This is illustrated in the framework below ( Figure 1 ).

12. Conclusion

Human beings are at the centre of qualitative research, and the rights of these human participants need to be respected to give out valid information. Researchers conducting a qualitative research investigation must adhere to ethical considerations such as anonymity, voluntary participation, privacy and confidentiality and freedom to walk out in a researcher. Researchers must also make sure consent forms and information sheet are given to the participants to read and agree to take part in a research investigation before conducting interviews. Adhering to ethical considerations in research demonstrate that the research investigation meets the standard of ensuring reliability and validity of findings.

13. Limitations and suggestions for future research

One limitation of this research is it focused on ensuring that the research participants are safe and can give out the right information through tape-recorded interviews. The security nature of the recording device (technology used) can however, exposed the interviewee through device hacking and other cyber-attacks. Further research is therefore recommended to examine the kinds of recording device to use during interview recording to provide data protection from the public and other cyber criminals. The study was also limited to giving a general consent form to the interviewee to sign before the researcher commences the interview. Further research is therefore suggested to explore the content of the consent form to clearly state the most relevant parts that seeks to protect the interviewee. There should also be further research to fully examine the retention and use of recording by the researcher for future studies. This will help to give a measure on how long any interview data recorded should be kept by the researcher before been discarded. In addition, the researcher relied heavily on secondary data that has been collated by other past researchers, and due to the current trends in qualitative research, it is highly suggested that future researcher should adopt the interpretative philosophy using semi-structured interview to fully interact with scholars in qualitative research to uncover any new knowledge about ethics in qualitative research. Research in qualitative studies often overlooks the cultural diversity among participants that helps to understand the worldview of participants. Future research studies should be directed towards exploring how research design in qualitative research should focus on addressing cultural issues in data recoding. This is because there are some tribes or cultures that frowns on recordings and the taking and retention of information after the person’s death. In addition, future research should focus on the effect of training programmes that are organised for the ethics committee and its effects on ethical approval process. In the words, are there any given forums or developmental programmes that are made available to the ethics committee in view of improving knowledge on current ethical concerns and how it has made their role more effective.

systematic literature review ethical considerations

A typology of ethical issues in an interview

Source: Authors’ own work

Alderson , P. ( 2000 ), Qualitative Research: A Vital Resource for Ethical Healthcare , The Welcome Trust , London .

Alicia , M. ( 2009 ), “ Coast IRB, caught in sting, to close ”, The Wall Street Journal .

Annas , G.J. and Grodin , M.A. ( 1992 ), The Nazi Doctors and the Nuremberg Code , Oxford University Press , New York, NY .

Beauchamp , T.L. ( 1991 ), Philosophical Ethics: An Introduction to Moral Philosophy , 2nd ed. , McGraw Hill , New York, NY .

Beauchemin , É. , Côté , L.P. , Drolet , M.J. and Williams-Jones , B. ( 2021 ), “ Conceptualizing ethical issues in the conduct of research: results from a critical and systematic literature review ”, Journal of Academic Ethics , Vol. 20 No. 3 , pp. 335 - 358 , doi: 10.1007/s10805-021-09411-7 .

Bickman , L. and Rog , D. ( 2009 ), “ Applied research design: a practical approach ”, in Bickman , L. and Rog , D. (Eds), Handbook of Applied Social Research Methods , 2nd ed. , Sage , Thousand Oaks, CA , pp. 3 - 43 .

Bruhn , J.G. , Zajac , G. , Al-Kazemi , A.A. and Prescott , L.D. ( 2002 ), “ Moral positions and academic conduct: parameters of tolerance for ethics failure ”, The Journal of Higher Education , Vol. 73 No. 4 , pp. 461 - 493 , doi: 10.1353/jhe.2002.0033 .

Cilliers , L. and Viljieon , K. ( 2021 ), “ A framework of ethical issues to consider when conducting internet-based research ”, South African Journal of Information Management , ISSN: 1560-63x, 2078-1865 .

Clark , H.H. ( 1996 ), Using Language , Cambridge University Press , Cambridge .

Collis , J. and Hussey , R. ( 2014 ), Business Research: A Practical Guide for Undergraduate and Postgraduate Students , 4th ed. , Macmillan education; Palgrave .

Colnerud , G. ( 2015 ), “ Ethical dilemmas in research in relation to ethical review: an empirical study ”, Research Ethics , Vol. 10 No. 4 , pp. 238 - 253 , doi: 10.1177/1747016114552339 .

Costa , A.P. and Moreira , A. ( 2019 ), “ Technology ethics in qualitative research: how to be ”, The Qualitative Report , Vol. 24 No. 13 , pp. 1 - 4 .

Creswell , J. and Plano Clark , V. ( 2007 ), Designing and Conducting Mixed Methods Research , Sage , Thousand Oaks, CA .

Crow , G. and Wiles , R. ( 2008 ), “ Managing anonymity and confidentiality in social research: the case of visual data in community research ”, ESRC National centre for research methods .

Davison , J. ( 2004 ), “ Dilemmas in research: issues of vulnerability and disempowerment for the social workers/researcher ”, Journal of Social Work Practice , Vol. 18 No. 3 , pp. 379 - 393 , doi: 10.1080/0265053042000314447 .

Denzin , N. and Lincoln , Y. ( 2011 ), Handbook of Qualitative Research , 4th ed. , Sage , Thousand Oaks, CA .

Drolet , M. , Rose-Derouin , E. , Leblanc , J. , Ruest , M. and Williams-Jones , B. ( 2022 ), “ Ethical issues in research: perceptions of researchers, research ethics board members and research ethics experts ”, Journal of Academic Ethics , Vol. 21 No. 2 , pp. 269 - 292 , doi: 10.1007/s10805-022-09455-3 .

ESOMAR ( 2010 ), “ Current and emerging trends in qualitative research ”, Athens, Greece in combination with congress-Odyssey , Retrieved from: Current And Emerging Trends In Qualitative Research – WebSM (accessed 18 December 2022 ).

Gill , P. , Stewart , K. , Treasure , E. and Chadwick , B. ( 2008 ), “ Methods of data collection in qualitative research: interviews and focus groups ”, British Dental Journal , Vol. 204 No. 6 , pp. 291 - 295 .

Giorgini , V. , Mecca , J.T. , Gibson , C. , Medeiros , K. , Mumford , M.D. , Connelly , S. and Devenport , L.D. ( 2016 ), “ Researcher perceptions of ethical guidelines and codes of conduct ”, Accountability in Research , Vol. 22 No. 3 , pp. 123 - 138 , doi: 10.1080/08989621.2014.955607 .

Grodin , M.A. ( 1992 ), “ Historical origins of the Nuremberg code ”, in Annas , G.J. and Grodin , M.A. (Eds), The Nazi Doctors and the Nuremberg Code: Human Rights in Human Experimentation , Oxford University Press , Oxford .

Guillemin , M. and Gillam , L. ( 2004 ), “ Ethics, reflexivity and ‘ethically important moments’ in research ”, Qualitative Inquiry , Vol. 10 No. 2 , pp. 261 - 280 .

Howard-Grenville , J. , Nelson , A. , Vough , H. and Zilber , T. ( 2021 ), “ From the editors – achieving fit and avoiding misfit in qualitative research ”, Academy of Management Journal , Vol. 64 No. 5 , pp. 1313 - 1323 .

Hursthouse , R. and Pettigrove , G. ( 2018 ), “ Virtue ethics ”, in Zalta , E.N. (Ed.), Stanford Encyclopedia of Philosophy (Winter 2018 ed.) , Metaphysics Research Lab, Stanford University , Retrieved 2021-02-19 .

Kang , E. and Hwang , H. ( 2021 ), “ Ethical conducts in qualitative research methodology; participants observation and interview process ”, Journal of Research and Publication Ethics , Vol. 2 No. 2 , pp. 5 - 10 .

Kara , H. and Pickering , L. ( 2017 ), “ New directions in qualitative research ethics ”, International Journal of Social Research Methodology , Vol. 20 No. 3 , pp. 239 - 241 .

Koski , G. ( 2009 ), “ Ethical issues in translational research and clinical investigation ”, Clinical and Translational Science , Academic Press .

Kozinets , R.V. ( 2002 ), “ The field behind the screen: using netnography for marketing research in online communities ”, Journal of Marketing Research , Vol. 39 No. 1 , pp. 61 - 72 .

Kozinets , R.V. ( 2017 ), “ Management netnography: axiological and methodological developments in online cultural business research ”, The SAGE Handbook of Qualitative Business and Management Research Methods , Sage , London .

Lazar , J. , Feng , J. and Hochheiser , H. ( 2017 ), Research Methods in Human-Computer Interaction , 2nd ed. , Morgan Kaufmann Publishers , Cambridge, MA .

Lynöe , N. , Sandlund , M. and Jacobsson , L. ( 1999 ), “ Research ethics committees: a comparative study of assessment of ethical dilemmas ”, Scandinavian Journal of Public Health , Vol. 27 No. 2 , pp. 152 - 159 .

McCloskey , H.J. ( 1957 ), “ An examination of restricted utilitarianism ”, The Philosophical Review , Vol. 66 No. 4 , pp. 466 - 485 , doi: 10.2307/2182745 .

McNeil , C. ( 2014 ), “ Debate over institutional review boards continues as alternative options emerge ”, JNCI Journal of the National Cancer Institute , Vol. 99 No. 7 , pp. 502 - 503 .

Menzies , T. , Williams , L. and Zimmerman , T. ( 2016 ), Perspectives on Data Science for Software Engineering , Elsevier .

Merriam , S. ( 2009 ), Qualitative Research: A Guide to Design and Implementation , Jossey-Bass , San Francisco, CA .

Mohamadi , A. , Asghari , F. and Rashidian , A. ( 2014 ), “ Continuing review of ethics in clinical trials: a surveillance study in Iran ”, Journal of Medical Ethics and History of Medicine , PMC 4648212. PMID 26587202 , Vol. 7 , p. 22

Mumford , M.D. , Higgs , C. and Gujar , Y. ( 2021 ), “ Ethics in coercive environments: ensuring voluntary participation in research ”, in Panicker , S. and Stanley , B. (Eds), Handbook of Research Ethics in Psychological Science , American Psychological Association , pp. 113 - 123 .

Nambisan , S. , Wright , M. and Feldman , M. ( 2019 ), “ The digital transformation of innovation and entrepreneurship: progress, challenges and key themes ”, Research Policy , Vol. 48 No. 8 , p. 103773 , doi: 10.1016/j.respol.2019.03.018 .

Nuremberg Code ( 1947 ), “ The doctor's trial: the medical case of the subsequent Nuremberg proceedings ”, United States Holocaust Memorial Museum Online Exhibitions , Retrieved from: Nuremberg Code – United States Holocaust Memorial Museum (ushmm.org) (accessed 2 April 2022 ).

Olson , R.G. ( 1967 ), “ Deontological ethics ”, in Edwards , P. (Ed.), The Encyclopedia of Philosophy , Collier Macmillan , London .

Orb , A. , Eisenhauer , L. and Wynaden , D. ( 2000 ), “ Ethics in qualitative research ”, Journal of Nursing Scholarship , Vol. 33 No. 1 , pp. 93 - 96 .

Parkinson , G. and Drislane , R. ( 2011 ), “ Qualitative research. In online dictionary of the social sciences ”, available at: http://bitbucket.icaap.org/dict.pl

Punch , M. ( 1994 ), Politics and Ethics in Qualitative Research. Handbook of Qualitative Research , Sage , Newbery Park, CA .

Reynolds , G.W. ( 2019 ), Ethics in Information Technology , 6th ed. , Cengage Learning .

Roth , W. and von Unger , H. ( 2018 ), “ Current perspectives on research ethics in qualitative research ”, Qualitative Social Research , Vol. 19 No. 3 , pp. 798 - 809 .

Salzman , T.A. ( 1995 ), Deontology and Teleology: An Investigation of the Normative Debate in Roman Catholic Moral Theology , University Press .

Saunders , B. , Kitzinger , J. and Kitzinger , C. ( 2015 ), “ Anonymising interview data: challenges and compromise in practice ”, Qualitative Research , Vol. 15 No. 5 , pp. 616 - 632 .

Saunders , M. , Lewis , P. and Thornhill , A. ( 2016 ), Research Methods for Business Students , 6th ed. , Pearson .

Shaw , W. ( 1998 ), Contemporary Ethics: Taking Account of Utilitarianism , Wiley-Blackwell , ISBN 978-0-631-20294-3 .

Shepherd , D.A. and Gruber , M. ( 2020 ), “ The lean startup framework: closing the academic–practitioner divide ”, Entrepreneurship Theory and Practice , Vol. 45 No. 5 , p. 104225871989941 , doi: 10.1177/1042258719899415 .

Short , J.C. , Ketchen , D.J. , McKenny , A.F. , Allison , T.H. and Ireland , R.D. ( 2017 ), “ Research on crowdfunding: reviewing the (very recent) past and celebrating the present ”, Entrepreneurship Theory and Practice , Vol. 41 No. 2 , pp. 149 - 160 , doi: 10.1111/etap.12270 .

Sievert , C. and Shirley , K.E. ( 2014 ), “ A method for visualizing and interpreting topics ”, Proceedings of the Workshop on Interactive Language Learning, Visualization, and Interfaces , Association for Computational Linguistics , Baltimore, MD , pp. 63 - 70 .

Smith , J. , Flowers , P. and Larkin , M. ( 2009 ), Interpretive Phenomenological Analysis: Theory, Method and Research , Sage , Thousand Oaks, CA .

Stockwell , P. , Colomb , R.M. , Smith , A.E. and Wiles , J. ( 2009 ), “ Use of an automatic content analysis tool: a technique for seeing both local and global scope ”, International Journal of Human-Computer Studies , Vol. 67 No. 5 , pp. 424 - 436 .

Sykora , M. ( 2017 ), “ Web 1.0 to web 2.0: an observational study and empirical evidence for the historical r(evolution) of the social web ”, International Journal of Web Engineering and Technology , Vol. 12 No. 1 , pp. 70 - 94 .

Tom , R. and Richards , L. ( 2003 ), “ The way ahead in qualitative research ”, Journal of Modern Applied Statistical Methods , Vol. 2 No. 1 .

Traer , R. ( 2009 ), Doing Environmental Ethics , Routledge, Taylor and Francis Group .

UK Statistics Authority ( 2022 ), “ Ethical considerations associated with qualitative research methods ”, available at: https://uksa.statisticsauthority.gov.uk/publication/ethical-considerations-associated-with-qualitative-research-methods/pages/2/ ( accessed 24 April 2023 ).

Van Burg , E. , Cornelissen , J. , Stam , W. and Jack , S. ( 2022 ), “ Advancing qualitative entrepreneurship research: leveraging methodological plurality for achieving scholarly impact ”, Entrepreneurship Theory and Practice , Vol. 46 No. 1 , pp. 3 - 20 .

Waller , B.N. ( 2005 ), Consider Ethics: Theory, Readings, and Contemporary Issues , Pearson Longman , New York, NY .

Williams-Jones , B. , Potvin , M.J. , Mathieu , G. and Smith , E. ( 2013 ), “ Barriers to research on research ethics review and conflicts of interest ”, IRB: Ethics and Human Research , Vol. 35 No. 5 , pp. 14 - 20 .

Wilson , S. , Draper , H. and Ives , J. ( 2008 ), “ Ethical issues regarding recruitment to research studies within the primary care consultation ”, Family Practice , Vol. 25 No. 6 , pp. 456 - 461 .

Zamawe , F.C. ( 2015 ), “ The implication of using NVivo software in qualitative data analysis: evidence-based reflections ”, Malawi Medical Journal , Vol. 27 No. 1 , pp. 13 - 15 .

Further reading

Annas , J. ( 2022 ), “ Virtue and duty: negotiating between different ethical traditions ”, The Journal of Value Inquiry , S2CID 143268990 – via SpringerLink , Vol. 49 No. 4 , p. 609 , doi: 10.1007/s10790-015-9520-y .

Enfield , K.B. and Truwit , J.D. ( 2008 ), “ The purpose, composition, and function of an institutional review board: balancing priorities ”, Respiratory Care , Vol. 53 No. 10 , pp. 1330 - 1336 .

Perrault , E.K. and Keating , D.M. ( 2017 ), “ Seeking ways to inform the uninformed: improving the informed consent process in online social science research ”, Journal of Empirical Research on Human Research Ethics , Vol. 13 No. 1 , pp. 50 - 60 .

Perrault , E.K. and Nazione , S.A. ( 2016 ), “ Informed consent – uninformed participants: shortcomings of online social science consent forms and recommendations for improvement ”, Journal of Empirical Research on Human Research Ethics , Vol. 11 No. 3 , pp. 274 - 280 .

Pope , T.M. ( 2009 ), “ Multi-Institutional healthcare ethics committees: the procedurally fair internal dispute resolution mechanism ”, Campbell Law Review , Vol. 31 , pp. 257 - 331 .

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The role of ethics in science: a systematic literature review from the first wave of COVID-19

Alessia maccaro.

1 School of Engineering, University of Warwick, Coventry, CV47AL UK

2 Institute of Advanced Study, University of Warwick, Coventry, CV47AL UK

Davide Piaggio

Silvio pagliara, leandro pecchia.

3 European Alliance of Medical and Biological Engineering and Science (EAMBES), Leuven, Belgium

4 IUPESM, York, UK

Associated Data

The results of the systematic literature search are available by contacting the authors upon reasonable request.

This paper proposes a systematic literature review on ethics and CoviD-19, aiming to understand the impact and the perception of the pandemic during the first wave (January-June 2020) and the consequences one year later. PubMed was systematically searched up May 2020 to identify studies that took into consideration various ethical issues that have been arising from the Covid-19 outbreak. The eligibility of the papers was determined by two authors, who screened the results mediated by a third author. In order to facilitate the screening, the titles were divided into five sub-thematic macro-areas, namely allocation , policy , specialist , clinical trials , and technology and, when possible, per geographical area. Specifically, a posteriori, we decided to focus on the papers referring to policies and technology , as they highlighted ethical issues that are not overused and worthy of particular attention. Thus, 38 studies out of 233 met our inclusion criteria and were fully analysed. Accordingly, this review touches on themes such as fairness, equity, transparency of information, the duty of care, racial disparities, the marginalisation of the poor, and privacy and ethical concerns. Overall, it was found that despite the increased awareness of interdisciplinarity and the essential reference to ethics, many scientific articles use it with little competence, considering it only a "humanitarian" enrichment. In fact, as we understand, reflecting a year after the outbreak of the pandemic, although Covid-19 is leading scientists to increasingly recognise the importance of ethical issues, there is still a lot of confusion that could be helped by establishing international guidelines to act as a moral compass in times of crisis.

Supplementary information

The online version contains supplementary material available at 10.1007/s12553-021-00570-6.

The spread of COVID-19 begot what the World Health Organisation (WHO) defined a “pandemic” [ 1 ], an emergency condition that has often been compared to other dramatic events in history (e.g., the Spanish flu in 1918). However, on closer inspection, COVID-19 can be regarded as an unprecedented event with its own specificity.

During the first months of the pandemic, the numerous emerging issues were deeply interwoven with ethics, as it is unanimously recognized by the works of politics, medicine, and science. The interdisciplinarity of such works and their continuous and necessary reference to ethics reinforce the belief that bioethics, i.e., a "bridge" between different fields of knowledge, looks more and more "towards the future" [ 2 ]. In fact, in the first few months, the contributions of National Ethics Committees, International Organizations, National Bodies and Professional Association to this topic [ 3 ] were numerous, very rapid, and accompanied a very heated debate on ethical implications between the population and experts from various backgrounds. Nonetheless, the continuous reference to the word “ethics” in the first publications after the declaration of COVID-19 pandemic [ 4 – 7 ] highlighted the need to clarify the most relevant ethical problems related to the scientific community. Hence, it was decided to focus on and deepen the subjects that aroused the interest of specialists the most. Specifically, existing works of reconstruction and/or comparison among national and international documents on the relationship between ethics and COVID-19 were not taken into consideration, to avoid delving into or discoursing about already exhaustively discussed topics.

Consequently, a systematic literature review was opted for. Such review was conducted by an interdisciplinary working group, comprising biomedical engineers and bioethicists, following a multidisciplinary approach, which overcomes the outdated Cartesian model of the separation of knowledge into “silos” of disciplines [ 8 , 9 ]. To facilitate the screening process, the papers were grouped by macro areas that were pinpointed through a thematic analysis [ 10 ], as explained in the methods. In particular, it was decided to analyse only the themes related to policy, technology, resource allocation, and low- and middle-income countries (LMICs) as they fall within our competences and seem to underline relevant ethical questions, which are not always adequately or exhaustively discussed. However, the theme of resource allocation was excluded a priori, because it is a trite topic, currently “abused”, on which anyone expresses their opinion independently from their level of expertise and knowledge. Moreover, many papers, which had a reference to ethics in the title, but that, in fact, did not deal with analysing the ethical implications of the investigated issues, were excluded. In fact, the ultimate purpose of this work was to understand the role that scientists recognize in ethics and the problems related to it: is it seen as a “humanitarian” addition to technical issues or as a structural element and perspective from which to analyse specialistic issues?

Therefore, this paper reports a collection of the most relevant and less conventional ethics challenges related to COVID-19 published in peer-reviewed journals indexed in PubMed, analysed through our multidisciplinary lens. These ethical issues, which emerged during the first wave of the pandemic, were then rediscussed a year later, in order to assess whether the first bioethical perspectives related to COVID-19 were biased by the close succession of the events being analysed, or they were detached enough, and the raised issues remain current a year on.

Systematic literature review

Given the large number of papers and documents that have been and are currently being published since the start of the pandemic, we decided to conduct a systematic literature review. PubMed was selected as the only database to identify all the contributions published from 01/01/2020 up to 19/05/2020 responding to the topics of COVID-19 and ethics. The search string was constructed with the following terms combined with the Boolean operators AND/OR: “ethics”, “ethical”, “bioethics”, “COVID”, “sars cov 2”, “coronavirus” ((ethics OR ethical OR bioethics) AND (COVID OR sars cov 2 OR coronavirus)). We judged eligible only the papers with full text available and in English. In order to facilitate the clustering and further screening of the retrieved articles, they were divided into the most recurring themes and per geographical area. To this regard, the countries were grouped according to the following macro groups, based on the retrieved papers: North America, Europe, LMICs (e.g., Tunisia), Asia, and Israel. Particular attention was dedicated to the contributions regarding LMICs. Finally, only the paper pertaining to our field of expertise, i.e., technologies and policy, made it through the final selection. During this process, two authors independently screened all the titles and abstracts for eligibility. Full texts were considered if the selection was unclear. A third author reviewed and checked the results of the screening search. Any discrepancy was resolved by discussion among all the authors. All the relevant papers were analysed, summarised and coded to facilitate the reading.

Figure  1 shows the electronic database search and the selection process. Only 38 papers out of the initial 233 resulted eligible to be included in our study, which focuses on technology and policy. Figure  2 shows the division in macro groups and Fig.  3 the division per geographical area, when applicable. Online Resource 1 presents all the selected papers organised by recurring themes.

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The flowchart of the systematic literature review

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The distribution of the articles in 5 macro-areas

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The distribution of the articles per geographical area

The 5 pinpointed macro groups of specific works on ethics and COVID-19 were: Policy, Resource allocation, Specialists, Clinical trials, and Technology. The theme of policies, i.e., of the public responses to the crisis, is the one that piques the scientists’ interests the most, according to our review. In this regard, as already mentioned, our review is not exhaustive and does not aim at including all the political guidelines of the various countries, because its hermeneutical horizon [ 11 ] is the point of view of science. Notwithstanding, it was possible to identify a series of specific works on different countries, which allowed comparisons between different areas of the world: LMICs, Asia, Europe, and North America.

The theme of resource allocation is also extremely well-liked. In fact, the first wave of the pandemic caused a scarcity of resources, globally, without any distinction: from personal protective equipment (PPE) to medical devices (MDs) (e.g., ventilators, respirators), beds, drugs for COVID-19 patients or patients suffering from other pathologies, health personnel, and COVID-19 tests. Most specifically, this situation of emergency abruptly showed the lack of competent ad-hoc bodies. This begot extremely heterogeneous approaches to ethics by different individuals, regardless their competence in ethics.

Among the retrieved publications, there were also numerous articles on ethics and COVID-19 written by specialists from various medical fields (e.g., geriatrics, psychiatry, surgery, oncology, and dentistry). Other publication focuses on all healthcare workers (HCWs), such as nurses and midwives, who experienced profound difficulties in this particular historical moment, the common denominator being allocation problems.

A significant number of works was related to clinical trials, in particular concerning vaccines and drugs, dealing with detecting the widespread condition of researchers who had to readdress the scopes of their research, always respecting high ethical standards and safeguarding the testers.

Finally, the last area is that of technology for COVID-19 (e.g., eHealth) and all the related ethical issues.

Discussions

The duality of trust: on the trustworthiness of governments and public trust.

Most of the articles included the topic of infodemic , i.e., “an over-abundance of information – some accurate and some not – that makes it hard for people to find trustworthy sources and reliable guidance when they need it” [ 12 ]. Misinformation circulating through global digital social networks in the first months of this pandemic was focused on trust in governments and policy makers [ 13 – 15 ], questioning the principles of legitimacy and responsibility related to information verification and sharing.

But who was the source of such disinformation?

Larson [ 15 ] claimed that it is was the governments who repressed information hoping to calm anxious publics, as it happened in Iran [ 15 , 16 ] or in China, where healthcare workers, who told the truth about the spread of the virus and the scarcity of resources, were looked at as “whistle-blowers” and forced to withdraw their declarations [ 17 ]. Moreover, some governments deliberately released supposedly reassuring misinformation, risking undermining their own credibility and their abilities to help people counter real health threats. According to Limaye et al. [ 13 ], there is a need for joint action between government agencies and social media companies for fact-check and even removal of false or outdated information. On the other hand, according to Bastani and Bahrami [ 16 ], there is the need of an active and effective presence of health professionals and authorities on social media, due to the poor legal supervision of online content.

Low-quality research contributed to this misinformation, too. In fact, the high demand for information caused an acceleration in reporting scientific results, with many journals publishing without any peer-review and offering open-access to everyone. A proxy for the high number of low-quality research on COVID-19 is also the unprecedented high number of retracted papers. To this regard, we searched for papers on COVID-19 or SARS-Cov-2 and the previous epidemics/pandemics (i.e., avian flu, swine flu, MERS) both on the Retraction Watch Database and OvidSP. As a result, as of May 2021, 124 out of 264,530 papers on COVID-19 (4.68 retractions per 10,000) were retracted, compared to 1.16 per 10,000 papers concerning the previous pandemics/epidemics.

Apart from being unethical, reporting poor quality outcomes is a kind of research misconduct [ 18 ] and inaccuracy. This could also have other consequences, for example exacerbating stigma and discrimination against particular populations [ 19 ]. In fact, Chowkwanyun and Reed [ 20 ], analysing the information circulated in the media in Wisconsin and Michigan on the high percentage of black people affected by Coronavirus, argued that there is always the need for contextualisation unless we want to foster harmful myths and misunderstanding, which undermine the goal of eliminating health inequities. The fear of stigmatization towards specific groups of people is likely to worsen if they are individuals. In this case, the ethical dilemma is the balance between personal and collective interests.

In hindsight, the public health measures that have been implemented can be of different types. Sulmasy and Veatch [ 21 ] identifies four of them:

  • Contact tracing through the self-reporting of recent close interactions by people known to be infected with COVID-19. In this regard, Luo et al. [ 22 ] reported the example of an online questionnaire that circulated in China as an internet approach in COVID-19 participatory surveillance.
  • More "draconian" health measures: new surveillance technologies that employ facial recognition, security cameras, and phone GPS monitoring could attempt to identify everyone who spent at least fifteen minutes within six feet of every infected individual. Each contact could be forcibly quarantined. In this regard, [ 23 ] underlined that apps could also be used as a preventive approach. However, as Vokinger et al. [ 24 ] affirmed, trustworthiness and integrity of contact tracing apps should be assessed with a framework. A review of the tracing apps for the management of COVID-19 can be found in [ 25 ], where the authors underlined that among the advantages there were the increase of personal freedom, of personal feelings of safety, and the improvement of the management of the quarantine. However, governments should implement policies to outline requirements for these apps and should safeguard privacy, access, transparency, the protection and use of these data [ 24 , 25 ]. In particular, Santow [ 26 ] underlined the need for a legal framework to regulate artificial intelligence and data sharing, as they can be the cause of discrimination and violation of human rights.
  • Voluntary contact tracing: it relies on the self-led contact tracing. However, it is not perfect because patients might not remember all their recent contacts.
  • The public naming of infected individuals: in this regard, Sulmasy and Veatch [ 21 ] described the case of the Prestigious University, in which the communication via email about the testing positive of a staff member raised a heated debate regarding the request to reveal the identity of the subject in order to maximize public health benefit and slow the spread of the virus. One of the authors argued that this could breach confidentiality and be harmful to the patient's privacy, who is free to decide whether to make a voluntary disclosure. However, another author believed that the confidentiality breach is morally mandatory to decrease the risk of contagion for other members of the University, because the duty towards the community has priority over the right of confidentiality. This is also discussed by Persad and Emanuel [ 27 ], who reported the proposal of some states (i.e., Chile, Germany and the UK) to implement “certifications of immunity” or “immunity passports” for those who had COVID-19 or who will have received the vaccine in the future. In line with the principle of the “least restrictive alternative” to achieve public health objectives, the author believe that this tracking measure is not unethical and cannot be compared to the yellow star that the Nazis forced the Jews to wear, because it is not a form of discrimination. However, it needs careful implementation and scientific support to be ethical in practice.

Another category of individuals who place the interests of society before their own is that of frontline healthcare workers (HCWs) who are forced to work in precarious conditions at their personal risk [ 28 ]. However, for them there is also another ethical dilemma: that of protecting, together with one's own health, also one's family and loved ones, which often clashes with the duty to treat patients, sometimes in the absence of PPE [ 29 , 30 ]. According to McConnell [ 31 ], there are several factors that adjust the burden of protecting one's family. The authors argued that the moral demands of "Samaritanism" (i.e., one should go out of one's way to help someone else, if it entails a little cost to oneself) do not imply that HCWs take on the risks and burdens associated with treating COVID-19 to save several lives. Likewise, Thomas et al. [ 30 ] denounced the low quantity and quality of PPE and the inadequacy of the related guidance issued by Public Health England. Moreover, he appealed to the precautionary principle and praised the ethical framework of Beauchamp and Childress [ 32 ] that encourages to counterbalance beneficence with non-maleficence. Always according to Thomas JP, political leaders have the moral duty to be open and honest, when informing all frontline HCWs of their own personal risks in caring for COVID-19 patients.

Nonetheless, as in all the aspects of life, economical evaluations cannot be excluded. Hilsenrath [ 33 ] presented a very sensitive issue, that of confronting the medical duty to save lives and the reasoning of economists, who invite people to make decisions on appropriate costs. The author lucidly underlined that although the issue is often bypassed by political leaders, especially Americans, it should be faced by considering an ethical balance, certainly painful, between the ethical and economic damage that countries are experiencing in this historical moment.

Overall, what is required from governments is trust. People place their trust, their lives, health, and economic situation in a sensible and transparent decision-making of governments. Therefore, as Thomas et al. claimed, "it is a reasonable expectation to hold our modern governments to the corresponding standards of our modern health professionals: specifically, transparency in decision-making and the duty of candidate" [ 30 ]. Similarly, Lewnard and Lo [ 34 ] sustained that policymakers maintain the public's trust through the use of evidence-based interventions and fully transparent fact-based communication. To give an example of this, the author also reported on mathematical modelling of the viral transmission under different scenarios to generate evidence of the efficacy of social distancing interventions.

On the other hand, Chaari and Golubnitschaja [ 35 ], supporter of 3P (predict, prevent and personalise) medicine, proposed “real-time” monitoring based on randomized laboratory tests as a source of evidence. However, this clashed with the problem of the lack of tests and the discrepancy between officially recorded and real infection cases. In fact, this could lead to incorrect political decisions heavily influencing the future of a country (e.g., a long-term economic recession due to over-protection of the population, or a post-containment pandemic rebound due to an under-protection of the population). Furthermore, all the measures required from governments (i.e., testing, screening, contact tracing, social distancing, travel restriction) must be as inclusive as possible in particular with vulnerable communities (i.e., homeless, those without insurance or employment, disabled, immigrant, prisoners) [ 14 , 34 ]. This also means being aware that the use of technology to combat the spread of COVID-19 could exacerbate racial, socioeconomic and geographic disparities for populations that lack access to reliable internet access, devices or technological literacy [ 36 ]. Moreover, during the pandemic, the benefits of technologies that allow relationships beyond social distancing have increasingly been experienced and could be a valid assistance tool for the elderly [ 37 ] and favour the communication of hospitalised patients with their families [ 36 ]. This response should also involve millennials and Generation Z more [ 38 ], as, despite the negative stereotypes that circulate around them, they could offer valuable help to overcome this crisis.

Certainly, the use of technology, if regulated, can be of help to scientists. Indeed, O'Reilly-Shah et al. [ 39 ] highlighted the shortcomings in the US healthcare IT infrastructures, underlining the importance of the interoperability of healthcare data, which should refrain from the proprietary control of vendors and be accessible to healthcare providers, especially in times of crisis.

More generally, it could be said that technology and data sharing are particularly important for disseminating knowledge worldwide. Momtazmanesh et al. [ 40 ] sustained that sharing and solidarity are at the base of an indispensable international collaboration to fight the current and future pandemics. The pandemic has increasingly shown the need for an international ethical–political coordination framework [ 23 ], aiming at reducing disparities. In this regard, under the category of policy , many contributions regarded LMICs. One of the recurrent themes was the stress on already overburdened and underfunded public healthcare systems in Africa, India, and Latin America [ 41 – 45 ]. In a more general comparison between the North and the South of the world, Schuklenk et al. [ 43 ] affirmed that there is a significant difference in the number of available intensive care unit beds per population and that the access to cures is often wealth-based, as many hospitals in the South are private. However, Krishna [ 42 ] stated that COVID-19 is just another drop in an already full vase, as the Indian healthcare system is already plagued by internal issues (e.g., no access to medicines, vested political interests etc.). All in all, the policies against COVID-19 are, once again, putting the poorest countries and people at risk [ 43 , 46 ]. In India, for example, the poor were confined in ghettos without a proper social security net and their conditions were exacerbated by the lockdown [ 46 ]. Other approaches used in LMICs to fight COVID-19 include the use of fear appeals to regulate people’s behaviours [ 47 ]. However, it can be argued whether this technique is ethical and acceptable or not. On the other hand, Kapata et al. [ 48 ] positively affirmed that Africa was readier than for the previous epidemic outbreaks.

Other diseases, such as vector-borne and non-communicable diseases, and community-acquired infections are often included among other stressors [ 41 , 42 ]. Krishna [ 42 ] also affirmed that notwithstanding this, COVID-19 obtained much more funding compared to other existing deadly diseases (e.g., diarrhoea).

Another element contributing to exacerbating the situation is the lack of ethics committees in the hospitals to regulate and ease the work of healthcare operators. In fact, the latter do not only have to face very difficult choices in an environment dominated by material scarcity and public distrust [ 41 ], but they also have to work in precarious conditions and their striking for this matter could be seen as patient abandonment [ 43 ]. With regard to this, Gopichandran and Subramaniam [ 44 ] recalled the reciprocity principle , according to which the state should protect the interests of the healthcare workers, who risk their lives to care for those who are infected.

Some authors [ 16 , 44 , 45 , 49 ] agreed on the need for equity and clarity in the way governments inform citizens, not to undermine their trust. Most importantly, it was unanimously stated that policies for COVID-19 should always be adapted to different contexts, above all the ones related to minorities, in the respect of traditional beliefs [ 50 ], and to avoid exacerbations of pre-existing gaps between the rich and the poor [ 46 ]. To this purpose, self-determination is key [ 51 ]: in fact, LMICs should independently shape their response, relying on international partners in a critical manner. For instance, LMICs should avoid the unconditional acceptance of measures adopted in high-income countries that would result inappropriate in resource limited settings [ 52 – 54 ].

Overall, the number and significance of the ethical problems that emerged, which makes us understand how ethics should be increasingly involved in guiding political and scientific legal reasoning, lead us to disagree with Stoeklé and Hervé [ 55 ], who, by separating political discussions, scientific knowledge and ethics writes: "now really isn't the time for ethical reflections" and "ethics is only really useful if you have the time, and right now, time is exactly what we do not have."

Conclusions

This paper presented a systematic overview of scientific papers investigating ethical issues during the first wave of this pandemic. The papers highlighted some recurrent themes, namely the allocation of scarce resources, infodemic, HCWs’ duty to treat versus personal protection, privacy, and the safeguard of minorities.

Reviewing such themes, a year after the outbreak of COVID-19, highlights several facts.

The infodemic has been as devastating as the virus. While it could have been acceptable in the first months of this pandemic, it is somehow surprising that after three waves of COVID-19, there is still confusion around trustworthy sources and reliable guidance. A year after, there is still misinformation spread through digital social networks, although the object of the discussion has changed, focusing now on vaccination safety and scarcity, rather than MDs and PPE. The same doubts raised by Larson [ 15 ], Limaye et al. [ 13 ] and Bastani and Bahrami [ 16 ] in March 2020 on the intentional repression of information perpetuated by governments for calming anxious publics during the first wave, have been recently repeated in regard to the surge of COVID-19 that affected India since March 2021.

After more than 12 months from the first wave, the ethical concerns on the stigma and discrimination against particular populations is still relevant in many ways. For instance, several authors hypothesize a causal link between COVID-19 and the surge of violent acts towards Asians living in the USA [ 56 , 57 ]. On the global scale, this discrimination will certainly not be mitigated by the delay in vaccinating populations in LMICs.

Moreover, the ethical concerns arising from balancing the need for track and trace with the risks for privacy, seem to be still unresolved. After a year and half into the pandemic, the same scepticism has crossed many COVID-19 waves resulting in several Apps being abandoned for more traditional phone-based methods. Similarly, the envisioned “real-time” monitoring based on randomized laboratory tests is still far from being possible and could still lead to incorrect political decisions heavily influencing the future of a country. One year on, in fact, although this risk has lowered, globally, it still is critical for some LMICs, where several challenges hinder COVID-19 testing [ 58 ].

Concerns on immunity certifications and pass, are yet far from being resolved, although the attention has now shifted towards the vaccines.

Concerning HCWs, the memory of recognising their efforts by cheering and clapping from the windows is far.

The scarcity of PPE and MDs seems to be overcome now, in many high-income countries, also thanks to the massive effort of United Nation agencies lead by the World Health Organization. Yet, the problem is far from being solved without structural interventions, as demonstrated by the surge in cases in India.

As regards the ethical issues on the appropriateness of economical evaluations and the transparency of political decisions, raised by authors during the first months of this pandemic, there is a need for more time before one can make unbiased reflections.

Inclusiveness seems to be one of the forgotten principles during this pandemic. While this issue was raised from the very start, the question remains open for several groups of populations, which have been not prioritised during the first wave, such as children, poor, unstable workers, chronic patients, and single parents.

Overall, this review identified a number of papers referring to ethics in their title, which in the end presented little or no contribution to the ongoing discussion on ethical issues arising from COVID-19. While the attention of many scholars to this important topic is remarkable, we conclude this review with the doubt that ethics is still considered as a tick-box exercise by many, when not a “humanitarian embellishment” of their technical work.

Conversely, ethics should be deeply interwoven with science, theoretically and methodologically. Besides, helping the evaluation of the arising issues, ethics could help scientists ponder on the risk–benefit balance of their publications, and also on the final purpose of their work, i.e., the progress of humanity. The unprecedented number of retracted papers suggests that during this pandemic the race to participate to the infodemic overcame the sense of responsibility, which should have imposed, in many cases, a responsible silence [ 59 ].

Below is the link to the electronic supplementary material.

Acknowledgements

DP, AM, LP would like to acknowledge the EPSRC and the Institute of Advanced Studies of the University of Warwick.

Abbreviations

DP and LP received support from the University of Warwick with two Warwick Impact Found grants supported by the EPSRC Impact Accelerator Award (EP/K503848/1 and EP/R511808/1). AM’s Fellowship is supported by the WIRL COFUND – Marie Sklodowska Curie Actions, Institute of Advanced Study, University of Warwick (UK). All the above-mentioned funds supported the systematic literature search and review.

Availability of data and materials

Declarations.

Ethics approval was not required for this study.

The author(s) declare no competing interests.

This article belongs to the Topical Collection: COVID-19 Health Technology: Design, Regulation, Management, Assessment

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Data science ethical considerations: a systematic literature review and proposed project framework

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  • Published: 09 March 2019
  • Volume 21 , pages 197–208, ( 2019 )

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  • Jeffrey S. Saltz   ORCID: orcid.org/0000-0002-8913-1095 1 &
  • Neil Dewar 1  

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Data science, and the related field of big data, is an emerging discipline involving the analysis of data to solve problems and develop insights. This rapidly growing domain promises many benefits to both consumers and businesses. However, the use of big data analytics can also introduce many ethical concerns, stemming from, for example, the possible loss of privacy or the harming of a sub-category of the population via a classification algorithm. To help address these potential ethical challenges, this paper maps and describes the main ethical themes that were identified via systematic literature review. It then identifies a possible structure to integrate these themes within a data science project, thus helping to provide some structure in the on-going debate with respect to the possible ethical situations that can arise when using data science analytics.

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systematic literature review ethical considerations

Boell, S., & Cecez-Kecmanovic, D. (2014). A hermeneutic approach for conducting literature reviews and literature searches. Communications of the Association for Information Systems, 34 , 1.

Article   Google Scholar  

Boyd, D, & Crawford, K. (2012). Critical questions for big data: Provocations for a cultural, technological, and scholarly phenomenon. Information, communication & society, 15 (5), 662–679.

Boyd, D, Levy, K., & Marwick, A. E. (2014). The networked nature of algorithmic discrimination. In Data and discrimination: Collected essays (pp. 43–57). Washington, DC: Open Technology Institute.

Google Scholar  

Boyd, K. (2012). Critical questions for big data. Information, Communication & Society, 15 , 662–679.

Braun, A., & Garriga, G. (2018). Consumer journey analytics in the context of data privacy and ethics. In C. Linnhoff-Popien, R. Schneider & M. Zaddach (Eds.), Digital marketplaces unleashed . Berlin: Springer.

Brey, P., & Soraker, J. (2009). Philosophy of computing and information technology. In D. M. Gabbay, A. W. M. Meijers, J. Woods, & P. Thagard (Eds). Philosophy of technology and engineering sciences (pp. 1341–1408). North Holland: Elsevier.

Chapter   Google Scholar  

Butrymowicz, S., & Garland, S. (2012). How New York city’s value-added model compares to what other districts, states are doing, hechingerreport. Retrieved from http://hechingerreport.org/content/how-new-york-citys-value-added-model-compares-to-what-other-districts-states-are-doing_7757/ .

Bynum, T. (2008). Computer and information ethics. In Stanford encyclopedia of philosophy . Retrieved from http://plato.stanford.edu/entries/ethics-computer/ . Accessed 14 January 2016

Bynum, T., & Rogerson, S. (2003). Computer ethics and professional responsibility: Introductory text . New York: Wiley

Chen, A. (2017). Using machine learning to find the 8 types of players in the NBA, Fastbreak. http://fastbreakdata.com/classifying-the-modern-nba-player-with-machine-learning-539da03bb824 .

Clarke, R. (2016). Big data, big risks. Information Systems Journal, 26 (1), 77–90.

Crawford, K. (2013). The hidden biases in big data. Harvard Business Review Online Edn. Harvard Business Review.

De Laat, P. B. (2017). Big data and algorithmic decision-making: Can transparency restore accountability? ACM SIGCAS Computers and Society, 47 (3), 39–53.

Dorasamy, N., & Pomazalová, N. (2016). Social impact and social media analysis relating to big data. In Data science and big data computing (pp. 293–313). Cham: Springer.

Drosou, M., Jagadish, H. V., Pitoura, E., & Stoyanovich, J. (2017). Diversity in big data: A review. Big data, 5 (2), 73–84.

Elo, S., & Kyngäs, H. (2007). The qualitative content analysis process. Journal of Advanced Nursing, 62 (1), 107–115.

Fairfield, J., & Shtein, H. (2014). Big data, big problems: Emerging issues in the ethics and data science of journalism. Journal of Mass Media Ethics, 29 , 38–51.

Fleiss, J. L., Levin, B., & Paik, M. C. (2004). Determining sample sizes needed to detect a difference between two proportions. Statistical Methods for Rates and Proportions, 2 , 64–85.

Floridi, L., & Taddeo, M. (2016). What is data ethics?. Philosophical Transactions Series A, 374 , 2083.

Fong, K. (2016). The ethics conversation we’re not having about analytics. Harvard Business Review Online Edn. Retrieved from http://blogs.hbr.org/2013/04/thehidden-biases-in-big-data/ . Accessed 20 August 2017.

Fuller, M. (2017). Big data, ethics and religion: New questions from a new science. Religions, 8 (5), 88.

Grindrod, P. (2016). Beyond privacy and exposure: Ethical issues within citizen-facing analytics. Philosophical Transactions of the Royal Society A, 374 (2083), 20160132.

Gumbus, A., & Grodzinsky, F. (2016). Era of big data: Danger of descrimination. ACM SIGCAS Computers and Society, 45 (3), 118–125.

Haffar, J. (2015). Have you seen ASUM-DM? Retrieved from IBM: https://developer.ibm.com/predictiveanalytics/2015/10/16/have-you-seen-asum-dm/ .

Harkens, A. (2016). ‘Rear window ethics’ and discrimination: The darker side of big data. In European conference on e-government (p. 267). Academic Conferences International Limited.

Hsieh, H.-F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15 (9), 1277–1288.

Jagadish, H., Gehrke, J., Labrinidis, A., Papakonstantinou, Y., Patel, J. M., Ramakrishnan, R., & Shahabi, C. (2014). Big data and its technical challenges. Communications of the ACM, 57 (7), 86–94.

Johnson, D. (1985). Computer ethics . Upper Saddle River: Prentice-Hall.

Johnson, D., & Nissenbaum, H. (1995). Computers, ethics and social values . New York: Pearson.

Joseph, D., Ng, K., Koh, C., and Ang. S (2007). Turnover of information technology professionals: A narrative review, meta-analytic structural equation modeling, and model development. MIS Quarterly, 31 (3), 547–577.

Kitchenham, B., & Charters, S. (2007). Guidelines for performing systematic literature reviews in software engineering . UK: Keele.

Leonelli, S. (2016). Locating ethics in data science: Responsibility and accountability in global and distributed knowledge production systems. Philosophical Transactions of the Royal Society A, 374 (2083), 20160122.

Manders-Huits, N., & Zimmer, M. (2009). Values and pragmatic action: The challenges of introducing ethical intelligence in technical design communities. International Review of Information Ethics, 10 (2), 37–45.

Martin, K. E. (2015). Ethical issues in the big data industry. MIS Quarterly Executive, 14 , 2.

Mateosian, R. (2013). Ethics of big data. IEEE Micro, 33 (2), 60–61.

Metcalf, J., Keller, E., Boyd, D. (2016). Perspectives on big data, ethics and society. Council for Big Data, Ethics and Society. http://bdes.datasociety.net/council-output/perspectives-on-big-data-ethics-andsociety/ .

Mingers, J., & Walsham, G. (2010). Towards ethical information systems: The contribution of discourse ethics. MIS Quarterly, 34 (4), 833–854.

Mittelstadt, B. (2017). From individual to group privacy in big data analytics. Philosophy & Technology, 30 , 475–494.

Newell, S., & Marabelli, M. (2015). Strategic opportunities (and challenges) of algorithmic decisionmaking: A call for action on the long-term societal effects of ‘datification’. The Journal of Strategic Information Systems . https://doi.org/10.1016/j.jsis.2015.02.001 .

Nyes, K. (2016). White house to data scientists: We need you. Computer world. Retrieved from http://www.computerworld.com/article/3125660/big-data/white-house-to-data-scientists-we-need-you.html . Accessed 20 August 2017.

Pascalev, M. (2017). Privacy exchanges: Restoring consent in privacy self-management. Ethics and Information Technology, 19 (1), 39–48. https://doi.org/10.1007/s10676-016-9410-4 .

Rowe, F. (2014). What literature review is not: Diversity, boundaries and recommendations. European Journal of Information Systems, 23 (3), 241–255.

Saltz, J., Dewar, N., & Heckman, R. (2018). Key concepts for a data science ethics curriculum. In Proceedings of the 49th ACM technical symposium on computer science education (pp. 952–957). ACM.

Saltz, J., & Stanton, J. (2017). An introduction to data science . Thousand Oaks: SAGE Publications.

Sandvig, C., Hamilton, K., Karahalios, K., & Langbort, C. (2014). An algorithm audit. In Data and discrimination: Collected essays . New York: New America, Open Technology Institute.

Schwartz, P. M. (2011). Privacy, ethics and analytics. IEEE security and privacy 9(3). IEEE.

Shearer, C. (2000). The CRISP-DM model: The new blueprint for data mining. Journal of Data Warehousing, 5 (4), 13–22.

Someh, I. A., Breidbach, C. F., Davern, M. J., & Shanks, G. G. (2016). Ethical implications of big data analytics. In ECIS (pp. Research-in).

Stahl, B. C., Timmermans, J., & Mittelstadt, B. D. (2016). The ethics of computing: A survey of the computing-oriented literature. ACM Computing Surveys (CSUR), 48 (4), 55.

Stevenson, D. (2014). Locating discrimination in data-based systems. Data and discrimination: Collected essays (16–20). Washington, DC: New America/Open Technology Institute

Stoyanovich, J., Howe, B., Abiteboul, S., Miklau, G., Sahuguet, A., & Weikum, G. (2017). Fides: Towards a platform for responsible data science. In SSDBM’17-29th International Conference on Scientific and Statistical Database Management .

Sweeney, L. (2013). Discrimination in Online Ad Delivery. ACM Queue 11(3). Association of Computing Machinery.

Tene, O., & Polotensky, J. (2012). Privacy in the age of big data. Stanford Law Review.

Tiell, S., & Metcalf, J. (2016). The Universal Principles of Data Science Ethics. Accenture Labs. https://www.accenture.com/t20160629T012639__w__/us-en/_acnmedia/PDF-24/Accenture-Universal-Principles-Data-Ethics.pdf .

Tractenberg, R. E., Russell, A. J., Morgan, G. J., FitzGerald, K. T., Collmann, J., Vinsel, L., … Dolling, L. M. (2015). Using ethical reasoning to amplify the reach and resonance of professional codes of conduct in training big data scientists. Science and Engineering Ethics, 21 (6), 1485–1507.

Voronova, L., & Kazantsev, N. (2015). The ethics of big data: Analytical survey. In Business informatics (CBI), 2015 IEEE 17th conference on (Vol. 2, pp. 57–63). IEEE.

Wielki, J. (2015). The social and ethical challenges connected with the big data phenomenon. Polish Journal of Management Studies, 11 (2), 192–202.

Wiener, N. (1954). The human use of human beings . New York: Doubleday.

Zwitter, A. (2014). Big data ethics. Big Data & Society, 1 (2), 2053951714559253.

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