Improving ethical assurance for non-university researchers in crisis settings: an early vision based on democratic norms

Abstract

This article aims to open a discussion on better ethical assurance for non-university research actors drawing on democratic norms. It derives from the author’s experience of a gap in ethical assurance for social science and humanities (SSH) research that takes place outside academia, for example within international organisations, public bodies, non-governmental organisations (NGOs) and by private entities. Many of these actors commission, conduct or sub-contract research activities involving human participants on a regular basis, an activity that often increases during times of crisis where researchers in both the public and private sphere scramble to generate the new knowledge necessary to respond and prevent further harms. The ethical assurance frameworks for such research, while growing, remain limited. Discussion of research conducted by actors outside of university settings and their ethical assurance frameworks are both subjects under-interrogated within the literature. This paper seeks to open that discussion by presenting this broad non-university research context through the frame of research in crisis settings, where the ethical requirements of ‘do no harm’ and the ‘dual imperative’ possess an even heavier significance in research ethics. Furthermore, the global and diverse nature of crisis settings often gives rise to conversations concerning the positioning of the research actor and the need to empower the research participant. This paper presents an early vision of the non-university research actor and ethical assurance process based on the democratic norms of equality and inclusivity.

Introduction

This article emanates from a gap in ethical assurance for social science and humanities (SSH) research that takes place outside academia, for example within international organisations, public bodies, non-governmental organisations (NGOs) and private entities. Many of these actors commission, conduct or sub-contract research activities involving human participants on a regular basis, an activity that often increases during times of crisis. As former UK/Ireland-based legal academics with direct experience of research outside of academia in both European and global settings, the authors aim to open a discussion on better ethical assurance for non-university research actors. The paper does this by drawing on a commitment to the democratic norms of equality and inclusivity, both in terms of legitimising the research actor (section 3) and crafting the ethical assurance process (section 6).

The research that this article is most concerned about is research with human participants that does not involve clinical trials or other interference with their physical integrity. ¹ Readers may conceive of the classic qualitative methods of surveys, interviews, focus groups and workshops with persons affected by or knowledgeable about human experience in crisis contexts. The focus of the paper is on the lesser interrogated context of research commissioned or conducted outside the university setting, where assurance frameworks, while growing, remain limited. While the research projects which establish the baseline for this article have been carried out by trained researchers, familiar with ethics requirements and processes, non-university research actors can also include untrained researchers and research participants which adopt a co-creation role in the research project.

The paper begins in section 2 with a brief exploration of the research in crisis context. Crises, disasters and emergencies are contexts in which researchers from all spheres, by necessity, often scramble to generate the new knowledge necessary to respond and prevent further harms. Section 3 of the paper proceeds to present the conduct of such research by research actors outside of the university context as a fundamentally positive trend within the wider democratisation of research narrative. This section describes how democratising the research actor can be viewed as having two core positives. It allows for an increased flexibility in research approach by integrating more community-based perspectives, and second, it helps rebalance the power dynamic between the research actor and the research participant. This section is underpinned by our support for the general need to ‘demystify’ research.

The paper advances by recognising the risks presented to research participants by research carried out in an unethical or irresponsible manner, including by non-traditional research actors. Section 4 of the article therefore explores the necessity for robust ethical standards for all research conducted, specifically, in crisis settings. This is particularly relevant during the participation of marginalised communities, who may have pre-existing vulnerabilities that have been exacerbated by the crisis, or those who have been exposed to vulnerability by the existency of the situation. This article advocates for stringent ethical approaches and oversight, with no deviation from the highest ethical standards during research conducted during crisis, for all researchers.

Section 5 of the paper shifts focus to the university Research Ethics Committee (REC) framework as the most established ethical oversight process, touching briefly on the inaccessibility of these mechanisms for non-university research actors and the efforts made to establish new mechanisms outside of the university environment, largely modelled on the university REC. The section concludes by looking at the body of criticisms facing university RECs before turning attention to how the assurance process might be improved for non-university research actors moving ahead (Section 6). Drawing on deliberative democracy norms, new processes in this context are best advised to depart from the hierarchical oversight approaches of traditional RECs to more inclusive and engaged methods allowing for an increased contextualisation of ethical assurance and hopefully, a more ethically robust experience for research participants.

The broad scope of crisis settings

The terms ‘crisis’, ‘disaster’ and ‘emergency’ are often used interchangeably, yet depending on the context in which they are used, their meaning can differ greatly. Although there is no one universally accepted definition (Coombs, 2012), ‘crisis’ appears to be the broadest term, with crisis management and crisis communications literature providing a level of orientation on the term’s scope. According to Boin et al. (2017) crisis can be defined as ‘a threat that is perceived to be existential in one way or another’, which can be taken to imply the existence of a hazard that is believed to put the human condition and its survival in jeopardy to some degree. This ‘umbrella’ of crisis encompasses a wide array of events, from pandemics to tsunamis, as well as economic recessions and terrorist attacks (McConnell, 2020). On the other hand, development organisations such as the UN Development Programme (UNDP) and the Organisation for Economic Cooperation and Development (OECD), commonly co-opt the language of crisis with that of ‘fragility’ to guide their support to low income countries. Rather than draw hard lines between a crisis context and a fragile context, the UNDP instead emphasises understanding ‘crisis and fragility’ contexts through a multidimensional risk framework that highlights the root causes and drivers of crisis to direct support through their humanitarian, development and peacebuilding efforts (UNDP, 2022).

The definitions of ‘disaster’ associated with the main international agreement on the topic, the Sendai Framework on Disaster Risk Reduction 2015–2030, resonates loosely with Boin et al.’s perception of threat approach to crisis, but with a more concrete focus on the actual, rather than the perceived, impact. The UN Office of Disaster Risk Reduction (UNDRR), which coordinates the Sendai Framework, defines disaster through its consequences on the social group, however large, as ‘a serious disruption of the functioning of a community or a society at any scale due to hazardous events interacting with conditions of exposure, vulnerability and capacity, leading to one or more of the following: human, material, economic and environmental losses and impacts’. This covers small-scale, large-scale and slow-onset disasters (UNDRR, 2023). Like crisis and disaster, ‘emergencies’ incorporate the existence of danger and threat. What distinguishes this concept is its time-linked nature from two perspectives. Standard definitions of an emergency suggest it has an unanticipated component, that is, results from an unexpected danger, at least in the short-term, and secondly, that it requires an immediate reaction or response (Cambridge, 2023). This immediacy is also captured through the core functions of the persons commonly considered ‘emergency workers’, for example, firefighters, ambulance workers, police, coastguards and lifeboat crews, as well as persons transporting blood, organs and related equipment. ²

Within the article we do not offer additional insight into the definition of crisis, conceiving the term only in its broadest sense and as overlapping with the more defined notions of disaster and emergency. We draw rather on the range of crises that have occurred in the last decade to exemplify the different crisis contexts addressed by research actors operating outside the university sphere. As such, a crisis may be global and widespread, affecting numerous countries worldwide, such as the COVID-19 pandemic. Other crises may be more localised, affecting a specific geographical area and population, such as the 2023 Turkey-Syria earthquake. Some localised crises, despite taking place within one or various countries, can have extensive social, economic and political impacts outside of their geographical limits (e.g. the current Russia-Ukraine war). Crises can also refer to a limited timeframe as well as be ongoing with no clear end in view, for example, socio-economic crises, such as poverty and the cost-of-living crisis, social polarisations and associated violence and rights impairments, as well as the climate crisis.

Importantly, not everyone is affected by a crisis in the same manner. Pre-existing vulnerabilities and inequalities may be exacerbated by the crisis. For example, in the case of the COVID-19 pandemic, certain marginalised populations, including low wage workers, minoritised ethnic communities, homeless people, older and disabled residents of long-term care facilities have been disproportionately impacted (Haley et al., 2020). Any one of these circumstances can be made worse by compound or ‘intersectional’ attributes leading to layers and multiples of inequality, for example, a member of a minoritised ethnic community who is also a low wage worker. As demonstrated so starkly during the COVID-19 pandemic, these pre-existing social vulnerabilities can also affect a person’s ability to follow crisis mitigation measures. Following public health guidelines such as self-isolation becomes an almost impossible task (a ‘Hobson’s choice’) if your income depends on frontline work or you live in densely populated housing or refugee camps with poor sanitation (Raju and Ayeb-Karlsson, 2020).

Research into crises has grown significantly in recent decades. Kuipers and Welsh’s (2017) mapping of research trends in the area over the previous 30 years, based on research outputs within the three leading academic journals, describe that growth as ‘exponential’ (p. 3). Their analysis looks at shifts and patterns as regards thematic topics in the crisis and disaster space and does not explore the profile of the researcher in crisis settings. Given the corresponding shift in the public realm brought about by the – now well established – era of digitalisation, coupled with a growing intentionality to ‘democratise’ research, the relatively limited discussion on researcher profiles in crisis settings (and beyond) is puzzling, and a gap to which this article seeks to speak.

Understanding non-university researchers as a form of research democratisation

SSH research with human participants in crisis settings is carried out by a variety of individuals and entities operating outside of the research university sector (and as we will later discuss, outside the traditional ethical oversight mechanisms). Individuals conducting such research are typically contracted by the procuring organisation based on their academic, especially PhD credentials, but often also their expertise in the subject specialism as demonstrated through practice. Non research university ³ organisations procuring or conducting this research range from regional and international organisations, such as the Council of Europe, EU and UN, to public bodies (i.e. national level bodies funded partly or wholly by public money, central and arms-length), to non-governmental organisations (NGOs) which are non-profit, and finally to private (for-profit) companies. Three practical examples of SSH research commissioned or conducted by non-university entities in crisis settings are set out below:

• i. An NGO focused on trafficking in human beings’ commissions research into the risks facing refugees fleeing the Ukrainian war in neighbouring European countries. The successful consultant visits the countries and refugee sites in person, speaking to local NGOs.

• ii. As part of a winning consortium, a private company receives money from a European R&D programme to conduct research to understand the impact of COVID-19 on vulnerable populations. The private company conducts several remote interviews with NGOs representing the identified populations.

• iii. An independent statutory inspectorate opens an investigation into a criminal justice agency. The inspectorate’s own investigation staff conduct focus groups with NGOs and interviews with victims of crime and criminal justice professionals.

The democratisation of research broadly refers to the development of an expansive research space that maximises diverse inputs by, for example, engaging a range of stakeholders in participatory methodologies, ensuring research results are openly accessible to all and – most relevant for our purposes – encouraging non-university affiliated researchers to conduct research. The idea rests on democratic theories which celebrate the equal value accorded to each voter’s choice, and further deliberative democratic theory, which emphasises the genuine engagement with opposing perspectives (see generally early theorists such as Habermas and Rawls, followed by more modern discussions of Christiano (2008), Sen (2009), Tierney (2009), Bonvin et al. (2017) and Young (2017). This idea of democracy is extended to research by adopting a highly inclusive approach to knowledge generation through the elevation (in principle) of all voices and perspectives. When linked with equality, democratic theory is fundamentally embraced as an extension of this human ‘good’; so too, it is argued for the democratisation of research.

The purpose of this section is to extract insights from the existing democratisation of research narratives to inform the positioning of non-university researchers conducting research in crisis settings (like the three examples set out above). Two narratives are identified as of note: one centres on the sometimes-controversial subject of what constitutes ‘participatory research’; and the second concerns the blurring of lines between the researcher and the research participant.

Starting with the first narrative, a core critique of mainstream research practices in democratisation of research discourse is that mainstream participatory research approaches are too ‘Western’ or ‘Euro-centric’, due to the restrictively conceived socio-cultural boundaries of the associated higher education institutions (Martinez-Vargas, 2022: 92). As a result, the mainstream participatory research frameworks are in fact limited in their democratic credentials, that is, failing to embrace different ‘positional objectives’: a key part of democratic theory outlined by Sen (2009: xii–xiii). Martinez-Vargas (2022) perceives an inherent contradiction within mainstream participatory research approaches, namely, that they ‘mimic the very colonial logics they condemn’ (p. 92). The core of the critique is that traditional participatory research approaches over-rely on rational approaches to thinking and are too individualistic in their process, that is, knowledge as an individual rather than collective pursuit (Martinez-Vargas, 2022: 64–69).

The second democratisation of research conversation of note is that which seeks to blend the researcher and the research participant as ‘co-researchers’, in an effort to ensure the research is more relevant to people’s lives and power in the research process is better distributed. ⁴ The more involved the research participant is in the early decision-making aspects of the research, the more democratised it is (Colum and Pierri, 2023). Arnstein’s (1969) ladder of participation model remains a core reference point for engaging the research participant as co-researcher; power is genuinely redistributed in the research process when the participant is either in partnership with the researcher, has delegated power from the researcher, or, most ideally, has control of the process.

By positioning research conducted by non-university researchers in crisis settings under the lens of the democratisation of research discourse, its value is illuminated. Non-university researchers offer an alternative to the academy. Leading research universities are undoubtedly situated in liberal democratic governance contexts (e.g. Times Higher Education, 2023). They are so influential that they now constitute a global ‘public sphere’, that is, sites of inquiry, investigation, deliberation and innovation, in the modern state (Pusser et al., 2011). The role of research universities in knowledge advancement is notably facilitated and, in part consolidated, by the megatrends of globalisation and digitalisation. Increasing the amount of research situated with actors outside the research university framework – also able to utilise and benefit from growing global digitalisation – decreases the influence of relatively homogenous approaches to research designed, safeguarded and to some extent monopolised by that community. Furthermore, narratives of co-design and efforts to rebalance power dynamics between the participant and researcher promote broader understanding of the ‘legitimate’ research actor, able to incorporate those operating outside of the university sphere.

Importantly, this positioning does not deny that the researchers identified in the three example scenarios would be broadly trained in research university institutions through research masters’ or doctoral degree programmes, nor that the authors of this paper are similarly situated in Western contexts reliant on English-translated texts. Similarly, the scenarios laid out above do not imply the presence of any co-design aspect of the research. This remains uncommon, even outside of the university research sphere. There can also be many weaknesses and risks from a casual acceptance and promotion of research conducted outside of the established oversight in academia. The point is merely this: that legitimising the increasing body of research by non-university research actors in crisis settings is in principle a ‘good’, justified by the values underpinning democratic theory, namely that an inclusive and engaged approach to the range of diverse views promotes equality and enriches research findings. That this diversification is not yet accounted for within research ethics more broadly is an issue to which this paper shortly turns.

The importance of research ethics in crisis settings

Ethical principles that guide research are based on the assurance of human freedom and dignity and are often expressed in values, ethical codes and guidelines. Drawing on European guidance with which the authors are most familiar, an expert panel at the European Commission (2021) recently documented the basic ethical principles that apply to all fields of research which involve the use of human participants. These include:

• • Respecting human dignity and integrity;

• • Ensuring honesty and transparency towards research subjects;

• • Respecting individual autonomy and obtaining free and informed consent – to include assent when necessary;

• • The protection of ‘vulnerable’ individuals;

• • Ensuring privacy and confidentiality;

• • Promoting justice and inclusiveness;

• • Minimising harm and maximising benefits;

• • Sharing the benefits with disadvantaged populations, especially if research is being conducted in developing countries;

• • Respecting and protecting the environment and future generations.

The panel asserted that research participants’ rights are deeply rooted in fundamental human rights and ethical principles that govern all research involving people.

Alternatively, the ESCR Framework for Research Ethics (UK Research and Innovation, 2023) simplifies this to six key principles, which include:

• • Research should aim to maximise benefit for individuals and society and minimise risk and harm.

• • The rights and dignity of individuals and groups should be respected.

• • Wherever possible, participation should be voluntary and appropriately informed.

• • Research should be conducted with integrity and transparency.

• • Lines of responsibility and accountability should be clearly defined.

• • Independence of research should be maintained and where conflicts of interest cannot be avoided, they should be made explicit.

Qualitative research requires a committed ethical approach from conception through to the dissemination of results. Due to the evolutionary and shape-shifting nature of social research, it requires that researchers continuously assess and interact with ethical principles during the lifecycle of the investigation they are conducting. Practicalities, such as privacy, ensuring confidentiality, voluntary and informed participation, anonymity and guaranteeing the ability of the participant to opt out without consequence at any point, must be considered from the conception of the research idea to dissemination of research findings (Barrow et al., 2022).

Research conducted during crisis situations is essential to ensure that understanding of the events is evidence-based and accurately reflects the particularities of the circumstances. While crises create situations of chaos and flux for the affected population, they paradoxically become an opportunity ripe for learning. One example is the earthquake that occurred in Anchorage, Alaska in 2018. As noted by Gaillard and Peek (2019), teams of engineers and scientists from across the United States immediately mobilised to conduct research on the resulting state of the infrastructure; the possibility of further earthquakes and to document the disaster response.

Of vital importance, is the assurance of robust ethical practices when conducting research during these events as it may involve working with populations who have vulnerabilities at various levels. Specific risks include engaging with traumatised communities, researchers putting themselves at risk and research activities interfering and affecting post-disaster operations or mitigation techniques. The following paragraphs explore ethical considerations and practices with conducting research during crisis and take the learning from recent crisis contexts to explore the issue further.

During crises researchers are often dependent on qualitative methods that involve engaging with survivors or those affected as research participants. This type of qualitative research can lead to significant ethical challenges. Engagement with the affected population through prolonged or brief personal interactions during a crisis can impact the participant deeply and therefore needs to be considered intently to ensure that the engagement is ethically justified. As explicated by O’Mathuna (2018), vulnerabilities specific to crisis situations can be compounded by a number of factors including trauma, bereavement, the risk of violence or experiences of conflict and injustice. When asked to participate in research, these vulnerabilities are complicated by additional risks.

Field work in a crisis and emergency setting is often complicated by two key concerns: the ethical principle of ‘do no harm’ in a setting beset with flux and uncertainty, where already traumatised populations run the risk of further traumatisation, and the concept of the dual imperative, which is the careful balance between ensuring academic rigour with the relevance and impact of research in policy to improve societal wellbeing (O’Mathuna, 2018). Both these issues have been recently highlighted in relation to conducting research with those forced to migrate and seek refuge in another country. The UNHRC explain that, due to their circumstances, refugees may need to engage in illegal or semi-illegal activities. Their vulnerability and marginalisation are exacerbated through legal and political channels, meaning they have few rights and are often exposed to arbitrary action (Jacobsen and Landau, 2003).

Ethically, they note that the goal of ‘do no harm’ in refugee research is extremely difficult and fraught with problems. Concerns are raised about the sharing of participant information that could ultimately be used against them later and the potential of stigmatisation and targeting. Methods such as focus groups have the potential to reduce confidentiality, as does the use of local researchers. Confinement in camps or urban areas, with structural restrictions, threats and experiences of violence and limited opportunities to find employment, create conditions that may last for prolonged periods of time. As Krause (2017) asserts, conducting research in these environments can place the participant in the position of increased danger. Participants could face potential retribution if authority figures object to the research; partial selection processes may cause frustration and fear; and following fieldwork, physical dangers may be compounded if participants can be identified once the data is published.

The ability to garner informed consent from refugees may be complicated by language barriers, communication difficulties and literacy levels. As noted by Taki and de Melo-Martin (2021), ‘refugees and asylum seekers’ capacities for autonomy and their ability to provide a free and informed consent can be negatively affected by trauma, displacement, oppression, and the constraining social and political circumstances in which they find themselves’.

In addition, the rapidity of the research response to a crisis context is often essential, yet the need for swift response brings its own ethical challenges. This was particularly relevant during the recent COVID-19 pandemic. As noted by Newman et al. (2021), there has been an increase in studies which aim to explore and understand people’s experiences of the health crisis, including investigations into knowledge, attitudes and beliefs. Qualitative research was employed during the pandemic to investigate changes in policies and practice while directly engaging with citizen and healthcare providers’ voices regarding their needs and concerns (Tremblay et al., 2021). Tremblay et al. (2021) highlight that pressure to produce time-sensitive responses to the pandemic brought about collaborative approaches to enable the fast-tracking of research. They note that such research endeavours were developed to generate information in a shortened timeframe, requiring faster design, recruitment of participants, data collection and analysis; an approach which is antithetical to traditional qualitative research approaches.

As with research with refugees, the ability to gather informed consent became a key ethical concern during the COVID-19 pandemic. Lockdowns and social distancing measures meant that many qualitative researchers engaged with online methods to conduct their studies. While there has been positive analysis of this method for the continuation of research during periods or crisis and emergency, Newman et al. (2021) point to the inability of participants to provide e-signatures, the creation of unnecessary digital trails that could be used to link participants with researchers and the exclusion of marginalised communities who may not have access to home computers or access to broadband/internet. There have also been concerns raised over privacy, confidentiality and data security, particularly in relation to the recording of on-line interviews over software. The increased utilisation of Zoom, Microsoft Teams and Skype to conduct qualitative interviews, evoked ethical concerns regarding data ownership (Self, 2021).

Essentially, the above provide examples of how the complexity of crisis increases vulnerabilities and the potential risks to research participants, and therefore requires researchers’ adherence to stringent ethical approaches and oversight. While research responses require a degree of urgency, this does not sanction the deviation from ethical standards. Ensuring that all research is conducted ethically is fundamental to generating the population’s trust in research and, ultimately, its results.

The overreliance on university RECs

The most established process for ethical review and approval of SSH research, such as the type described above in crisis settings, lies in the research university sphere through the corresponding Research Ethics Committee (REC). These committees – variously referred to as ‘Human RECs’ or SSH RECs, or under the more general terms of Institutional Ethics Review Committees, Ethics Review Boards or Institutional Review Boards – have been gradually institutionalised within universities over the past two decades, although this is notably not uniform across all university contexts. Where present however, SSH RECs largely follow the previously established ethical review models within the biomedical and health sphere, where regulations have existed in various parts of the globe since the 1970s. ⁵ The research covered by this article, that is, research initiated by international organisations, public bodies, NGOs and private entities in crisis settings, encounters two related challenges with the university REC process. The first concerns access to these established ethical assurance frameworks and the second concerns the modelling by new and ad-hoc assurance frameworks outside of the university sphere, still limited in their number, on the existing REC framework.

Dealing with the very practical problem of access first, it is important to be aware that many external funding providers conceptualise ethics assurance predominantly through the framework of this formalised REC review process. For example, ethics requirements imposed by the European Commission (EC) on projects funded under its R&D programmes (e.g. H2020 and Horizon Europe which cover disaster resilience and other crisis contexts) commonly call for ‘copies of opinions/approvals by ethics committees and/or competent authorities for the research with humans’. This is also the case for research funded by the US Department of Health and Human Services and the UK Economic and Social Research Council (ESRC) among many other large research funders (see also Dyer and Demeritt, 2009).

The requirement of ethical approval from a REC presents a real challenge to public bodies, NGOs, private entities and international organisations where they cannot establish affiliation with a university REC to access a formalised approval process. While university SSH RECs typically review applications concerning research from affiliated students and staff in the form of staff projects as well as masters’ dissertations or doctoral research, it is uncommon that a university SSH REC will agree to review projects where the researchers have no institutional affiliation. On occasions, this challenge has been overcome where one or more members of a research consortium holds a university affiliation, but that of itself is not guaranteed, proving especially difficult in circumstances where aspects of research in need of review are unrelated to the affiliated university member. ⁶ Furthermore, university RECs rarely have the resources, time or otherwise, to provide ethical review beyond their academic staff and students.

Although recent decades have witnessed a proliferation of national level research ethics committees, ⁷ including national SSH RECs such as Norway’s National Committee for Research Ethics in the Social Sciences and the Humanities (NESH), ⁸ these committees remain majorly in the health sector, such as clinical trials and in vitro diagnostics, with Norway’s NESH serving as the emergent exception rather than the rule. That being the case, certain health focused REC’s such as the National Research Ethics Board of Liberia can cover related social science research, notably behavioural research. ⁹

The challenge faced by non-university researchers obtaining REC approvals for SSH research has been noted in R&D programme guidance provided by the EC (2021: 22), yet the guidance does not present an alternative pathway beyond sourcing a REC approval from elsewhere, such as a similar body that may be formed by another non-university institution.

While larger private entities established in research or R&D, such as private research institutions and medium-large companies have been establishing their own RECs for the past decade or more, the democratisation of research and the increasingly rich flora of non-university research, has started to generate a new wave of ethical oversight mechanisms, but mostly modelling the university REC, in organisations that would not typically have considered their mandate as research. These examples are simultaneously welcomed – for the endeavour, sometimes procedurally innovative, and the layer of assurance and oversight that they in principle provide – and cautiously approached – for their similarities to the university REC process and its reported failings.

For example, the well-known humanitarian organisation Médecins Sans Frontières (MSF), which operates with a mandate to assist those impacted by conflict, disasters, epidemics and those excluded from healthcare systems, has acknowledged its expanding role in research, as both research participant and research generator. While acknowledging that research was not historically core to its mission, it has nevertheless been involved in numerous research projects with a significant impact on global health policy. ¹⁰ In 2002, MSF created an independent ethics review board (MSF-ERB) to evaluate all research proposals involving MSF. The Board is made up of a group of diverse individuals with expertise on NGO and humanitarian realities. Their role is to examine research protocols to ensure that ‘research is scientifically sound, pertinent, relevant and beneficial for the community and/or the intended participants; that the methods by which the research will be conducted are rigorous; and that the participants’ rights are respected and protected’.

Also acknowledging the ethical oversight gap for international NGOs, the Evidence & Collaboration for Inclusive Development (ECID) consortium ¹¹ comprising sector leading experts working globally for social justice, has created a more bespoke assurance offering via a hybrid ‘academic practitioners’ ethics panel. ECID noted that the premise for the creation of the panel was to ensure enhanced quality, accountability and rigour of research conducted by NGOs and highlighted that the lack of ethical assessment prevented practitioners and non-academic researchers from publishing their findings due to the requirement by academic journals for ethical oversight. Drawing on the ECID’s ethical framework, the panel acts as the ‘critical friend’ to provide support to the research partners along the process at three key stages: ‘in the public presentation of research proposals; in the public presentation of preliminary findings; and to provide written feedback on final research reports and articles’.

Public sector organisations have also identified situations were short-term/time-bound oversight mechanisms were required. In 2016 the Policing Authority in Ireland created an ad hoc ethics committee to establish a Code of Ethics for the Garda Siochana and to develop proposals to enable the Authority to fulfil its statutory responsibilities. ¹² Following completion of the Code, the Ethics Committee was disbanded in 2018, ¹³ with the periodic establishment of new and project-specific ethics committees to oversee commissioned research.

In addition, the World Health Organisation (WHO), International Committee of the Red Cross (ICRC) and some smaller NGOS have also devised tailored, internal processes and structures to provide ethical assurance.

These new and emergent efforts to ensure ethical assurance by NGOs and the public sector appear to demonstrate some positive responses to criticisms that have long faced university RECs, in particular around the expertise of REC members. The expertise and training of university REC members has been questioned in several studies, linked with a perception of arbitrary outcomes, judgement bias (Jennings, 2010; Schrag, 2011) and on occasions, the accusation of unnecessary censorship of research that is otherwise of scientific and democratic value (Dingwall, 2008). Institutional SSH RECs established within a public body or NGO, ad hoc or otherwise, may indeed be better placed to recruit a more tailored expertise due to the narrower mandate of the institution than that of a university. Equally, they may have more direct access to the challenges of applied research if the normal activity of their institution involves direct engagement with the public. This exposure may naturally foster a more intuitive understanding of research participant needs and the wider community benefits.

Among the most salient criticisms of SSH RECs is the fundamental complaint that grounding them in the processes of the more established medical RECs has resulted in an overly ‘prescriptive’ procedural formulation unsuited to SSH research (King, 2023). SSH research is argued to be less predictable in its processes, especially given the field environment, thereby requiring a more differentiated and flexible approach (generally King, 2023; von Benzon and van Blerk, 2017; Wilkinson and Wilkinson, 2023). These concerns resonate with some of the challenges unique to crisis contexts, such as the urgency of time and the difficulties of access, have been outlined in the section above. The most promising response to this challenge among the examples mentioned, is ECID’s three stage engagement approach that extends through to final reports and articles, because it offers more than one opportunity for researchers and the REC to engage. In this way it might support a more adaptable approach to the research, but that would depend on the level of the engagement by the REC members.

Other criticisms of established RECs relate to process and transparency such as allegations of REC members having poor interactions with researchers, producing unreasoned or unjustified outcomes, together with a lack of appeal mechanism (Keith-Spiegal and Koocher, 2005). Finally, there are several assertions that RECs are overly focused on protecting institutional reputations and while ensuring legal compliance and institutional reputation is not, of itself, a failing, concerns have been raised that this focus is out of balance and too often a distraction to what should be the main REC objective of protecting the research participant (see Guillemin et al., 2012: 42–43; King, 2023: 47).

In summary, while university REC approval might be regarded as the gold standard of ethics approval for research, obtaining approvals is often impracticable and unachievable for non-university researchers conducting time-sensitive and difficult research in crisis settings. Although the emerging national level SSH RECs such as Norway’s NESH and the increasing body of ad-hoc RECs or REC-like processes in non-university entities may eventually address the access issue, it remains to be seen whether they can improve on the long-rehearsed body of criticisms of SSH RECs (and RECs generally) found in the literature.

Pathways forward: an emphasis on equality and inclusivity through shared deliberation

In terms of moving forward in addressing the absence of ethical assurance for non-university research actors, the question might be asked whether the expected trend should be a continued growth in ad hoc or permanent institutional RECs among non-university institutions and entities commissioning or conducting SSH research in crisis settings. Positively, this could support improved expertise among REC members due to a more tailored skills evaluation during their recruitment or appointment. As demonstrated above, the ethical risks for research in crisis are heightened rather than altered. Thus, understanding of the research setting, its nuance and volatility, by the REC member, holds an even greater importance for mitigating these risks. And while in this environment of increased risk, all researchers require stringent ethical principles, guidance and assurance mechanisms to navigate the precariousness of the domain, the authors speculate whether more can be achieved by integrating learnings from these new and emerging RECs.

In alignment with democratic theory, we have witnessed a decrease in homogeneous approaches to research entrenched in the academy; we have embraced the inclusion of alternative voices and methods, with the potential to address deep-rooted power imbalances in the sphere. As the notion of the research actor expands to include co-design and human participant-led research, so too can the formulation of the new and emergent REC.

This has been equally evidenced through the expanded role of RECs engaging with research actors at multiple stages of the research process, adopting what might be described as a partnership rather than a hierarchical approach. Indeed, several discourses on RECs, not explicitly rooted in democracy theory, have advocated for a shift in approach towards ‘reflexivity’ (Jennings, 2010) and ‘respect’ (Peled-Raz, 2021) away from compliance approaches and the hierarchies currently endemic in research ethics.

In the context of this paper, the democratisation of research requires that both non-university research entities and their research actors commit to equal respect and consideration of non-traditional perspectives and approaches. In an environment dominated by individualistic cultural norms, that means promoting opportunities to accord attention to other norms, such as the values which ground communitarian cultures. ¹⁴ In practice, that means preferencing and integrating ethical assurance structures that elevate continuous deliberative engagement to consider the unique situatedness of each research context, and participant over exclusively procedure-based formulations operating hierarchical and disengaged approval approaches.

This of course requires additional time and effort from both research actors and REC members, two resources notoriously under pressure in research communities. Yet the imperative to act ethically, regardless of the ethics assurance infrastructure in place (see EC, 2021: 22), necessitates that research actors outside of university settings negotiate the time and resources needed to facilitate robust ethical assurance prior to undertaking the research. This must be done by acknowledging that university RECs do not necessarily provide the default or indeed best suited assurance mechanism. Non-university entities commissioning or conducting SSH research in crisis settings should equally understand this challenge as an opportunity to improve the SSH research response to the ‘do no harm’ and ‘dual imperative’ requirements by innovating a more democratic, deliberative and contextualised approach to their research context, ultimately ensuring greater confidence in the societal benefits of the research and the wellbeing of the human participants.