Ethics on the periphery: Unpacking Ghanaian NGOs’ avoidance of research oversight

Abstract

Many non-governmental organisations (NGOs) conduct data collection on households, children, women, migrants and other vulnerable populations. These activities often meet internationally accepted definitions of human subject research, yet they routinely proceed without ethical review. In this commentary, I critically examine the NGO sector’s disengagement from ethical review processes in Ghana. This commentary critically examines both the structural gaps in national coordination of NGO research ethics governance and NGOs’ disengagement from existing ethics oversight mechanisms in Ghana. The paper argues that misperceptions, funding pressures and structural inadequacies drive NGOs’ reluctance to engage in ethical review processes, and proposes both short-term compliance reforms and the establishment of a national ethics review committee as complementary pathways for reform.

Introduction

History has shown that in the process of involving human subjects in research and related activities, there is a likelihood of some harm to be caused. Landmark events such as the Tuskegee Syphilis Study of 1932, the Unit 731 study and the atrocities of some German scientists between 1939 and 1945 are constant reminders of the importance of research ethics (Resnik, 2018; Tobin, 2022). For instance, in the German studies conducted between 1939 and 1945, researchers exposed participants to freezing temperatures, low air pressures, ionising radiation and electricity, and infectious diseases, a clear violation of the rights of the participants (Resnik, 2018). However, these unethical research practices of the past led to the development of key ethical guidelines, including the Nuremberg Code, the Declaration of Helsinki, and the Belmont Declaration (Cosman, 2023; Shrestha and Dunn, 2020). It also emphasised the need for research ethics oversight, and thus, the need to obtain ethical approval.

The role of research ethics review committees or institutional review boards is to ensure ethical conduct throughout each stage of research. As such, they act as the structural mechanisms to prevent ethical misconduct and abuse of research participants (Li, 2025). In developed countries such as the United Kingdom (UK) and the United States, research ethics requirements have been normalised. For example, the Economic and Social Research Council of the UK mandates all research projects to have strict monitoring of ethics, and this includes obtaining ethical approval (Stanley and Wise, 2010). However, in developing regions like Africa and specifically, Ghana, such strict enforcement is still emerging, often operating through different localised frameworks (Owusu et al., 2022).

In the context of Ghana, the first two ethics review committees were established in the year 2000; yet there is currently no national ethics review committee (Owusu et al., 2022). This absence of a national ethics review committee likely reflects an historically academic-centred evolution of research governance in Ghana. Ethics review structures initially emerged within universities and health research institutions in response to international collaboration requirements. For example, academic institutions like the University of Ghana and University of Cape Coast operate institutional review boards. Similarly, some research institutes (e.g. the Participatory Development Associates) and health institutions (e.g. Ghana Health Service, Korle Bu Teaching Hospital, etc.) operate institutional review boards. The existence of these ethics review committees and boards provide the avenue for all persons and organisations involved in human subject research to benefit from research ethics oversight (University of Ghana, College of Health Sciences, 2025).

Available evidence shows that while formal research ethics structures in Ghana have been around for over two decades, ethical conduct is often navigated through context-specific communal norms and local gatekeeping protocols that prioritise social accountability over administrative oversight (Dugbazah, 2011). These communal accountability mechanisms complement formal ethics review by facilitating culturally appropriate engagement, local legitimacy, trust-building and social accountability within communities, and thus, ensure that research remains ethically sound in the local context. However, unlike formal ethics review processes, communal approval structures may not consistently evaluate issues such as participant autonomy, confidentiality, data security, power asymmetries, or risk minimisation. Consequently, tensions emerge when community-level acceptance is interpreted as sufficient ethical clearance in the absence of institutional review.

It is also important to note that despite the availability of ethics review committees and institutional review boards, the NGO sector remains on the margins of ethical governance. The expansion of NGO led programming over the past two decades has intensified the scale and frequency of data collection. Many organisations conduct baseline assessments, midline surveys, monitoring exercises and end line evaluations. Such routine monitoring activities may not always meet the internationally accepted definitions of human participant research. However, NGOs are increasingly collecting data that involves identifiable information, vulnerable populations, or dissemination beyond internal operational use. NGOs now produce detailed quantitative and qualitative information on households, children, women, migrants and other vulnerable populations (Masefield et al., 2020); yet many appear to proceed without formal ethical review, even though in some instances community entry processes are adhered to.

There is a blurred boundary between what constitutes programmatic reporting and human research. The Belmont Report distinguishes research from practice by defining research as activities designed to contribute to generalisable knowledge, while practice refers primarily to interventions intended to enhance the wellbeing of individuals or programmes without broader knowledge generation objectives (Earl, 2020). In the NGO context, many monitoring and evaluation activities may initially be framed as operational practice; however, when such activities involve systematic data collection, vulnerable populations, identifiable information, or dissemination beyond internal programme improvement, they increasingly resemble human research and require ethical oversight. This blurred boundary is further exacerbated by the lack of regulatory oversight in Ghana’s NGO research governance architecture. Understanding why this occurs is essential for strengthening national research governance, improving data quality and safeguarding the rights of vulnerable populations. In this commentary, I critically examine the NGO sector’s disengagement from ethical review processes in Ghana. Specifically, I diagnose the structural gaps in national-level coordination for NGO research ethics governance, and disengagement from the existing ethics ecosystem.

It is noteworthy that the analysis presented in this commentary is grounded primarily in the author’s professional experience and engagement with the NGO research sector in Ghana. Over several years of working closely with NGOs involved in human participant research, specifically in the area of child protection and modern slavery, the patterns and challenges described in this commentary have been consistently observed. This experiential perspective situates the commentary within the practical realities of research ethics governance in the NGO context.

Why do NGOs need research ethics oversight?

The fundamental question is: do NGOs need ethical review for their research? I argue that NGO research does require ethical review oversight. This argument is premised on the point that NGOs, in their quest to inform operational decisions through evidence-based research, frequently engage with highly vulnerable populations (Lucena and Temple, 2023). This raises fundamental questions about the rights, safety, autonomy and consent of the human participants who engage in NGO research. For instance, NGOs whose vision is to end child labour and child trafficking engage minors in their research. Similarly, NGOs working in refugee and conflict settings, as well as with sexual minority groups (e.g. LGBTQ+), do engage with a highly vulnerable population whose rights can be easily exploited. Therefore, as a matter of principle and in the spirit of maximising benefits and minimising threats/risks, there is a need for some oversight by an ethics review committee. Ethical oversight ensures that participation is truly voluntary, that consent processes are appropriate to context and literacy levels, and that participants are not exposed to unnecessary psychological, social or legal risks (Alhabsi, 2024). Without formal review, there is little external scrutiny of how consent is obtained, how data are stored, or how sensitive information is disclosed and used (Kahn et al., 2018).

There is evidence suggesting the NGOs often have underlying political ideologies or agendas (Makuwira, 2018; Zarnegar Deloffre and Quack, 2025). For example, an NGO that has a mission of advocating for legal reforms to reduce lung cancer incidence and mortality is more likely to support a political agenda that cracks down ruthlessly on tobacco access and use. In such instances, without an ethical review oversight, policy recommendations from research work may be interpreted as political agendas or propaganda. However, seeking ethical review becomes a marker of legitimacy. Policymakers and those who wield political power become convinced that the findings are borne out of a research design that has been critically assessed by an independent institution and had biases reduced, if not eliminated.

It must also be noted that research ethics oversight protects NGOs themselves. In the absence of ethical clearance, organisations are exposed to reputational damage, legal liability and loss of donor confidence if participants experience harm or raise concerns. Ethical review provides documented assurance that risks were anticipated and mitigated. This is particularly important in contexts where power asymmetries between NGOs and communities can lead to accusations of coercion or exploitation, even when harm was unintended.

Reasons for NGOs’ disengagement from ethical review process

Having established why research ethics oversight is necessary to players in the NGO space, we must now interrogate why they disengage from this process. I have categorised the reasons for NGOs’ disengagement from the ethical review process into three major issues: misperceptions, funding pressures, and structural issues. Within parts of the NGO sector in Ghana, there appears to be a persistent perception that NGO-led research does not require ethical approval. As a result, surveys, needs assessments, monitoring activities, and evaluations conducted by NGOs are often framed as routine programmatic work rather than research involving human participants. Perhaps this misperception is fuelled by the fact that most ethical review committees are found in institutes of higher education (Owusu et al., 2022). Over time, this institutional arrangement has normalised the exclusion of NGOs from formal ethics review processes and entrenched the view that ethical governance lies outside the operational responsibilities of NGOs.

The other reason for NGOs’ disengagement from ethical review processes is the funding pressure and what I describe as the ‘deliverables trap’. Many NGOs in Ghana are not self-funding but depend on donor funding (Awadari, 2020; Chanase, 2023). These donors often demand that NGOs generate evidence quickly in order to demonstrate results or justify renewal. Yet, these donors do not make allocations for the time and resources for the ethical review process. This persistent demand for rapid turnaround on research activities to guarantee funding in the next window discourages NGOs from prioritising research ethics oversight. This is a pattern that resonates outside the borders of Ghana to other jurisdictions where it has been reported that the phenomenon of ‘deliverables trap’ results in NGOs producing research results mainly for donor reporting (Sawadogo-Lewis et al., 2022). As such, ethical review may sometimes be perceived as a secondary administrative requirement rather than a requirement to protect the NGO and their research participants.

Beyond the misperceptions and funding pressures, there are extant structural inadequacies that reinforce NGOs’ disengagement from ethical review processes. As earlier stated, most ethics review boards are owned and located in institutes of higher education (Owusu et al., 2022). Moreover, these ethics review boards charge high fees for each reviewed research submission. So, if an NGO is to conduct three to five major research projects in a year, that financial requirement would discourage them because they cannot bill it to their donors. Where the NGO is able to go through the process, it is burdened with bureaucratic delays that may stretch over several weeks or months. Such delays are incompatible with donor timelines that require rapid initiation of field activities. Additionally, Ghana lacks a national policy to compel NGO compliance with ethical review processes (Owusu et al., 2022). As such, there is no clear guideline to deal with NGOs that do not go through ethical review processes.

Pathways for reform

In this commentary, I have articulated that misperceptions, funding pressures, and structural inadequacies are the driving forces behind NGOs’ reluctance to engage in ethical review processes. Therefore, the pathway for reform must directly address these challenges. In the short term, the existing ethics governance in Ghana can be strengthened to do more. The extant ethics review committees and institutional review boards must be encouraged to introduce proportionate review pathways for low-risk programmatic studies. Additionally, the NGO regulatory bodies must consider the incorporation of ethics compliance declarations in the annual reporting requirements for NGOs that actively engage in human participant research. NGOs conducting human participant research must also prioritise building a healthy rapport with their participants, and uphold local interpretations of accountable and ethical activities (Aktar et al., 2020).

While the short-term compliance actions would improve compliance at an incremental pace, it does not address the fundamental challenge of national coordination and standardisation deficit. Over the years, a national coordinating ethics body has been absent partly due to the historically decentralised evolution of research governance in Ghana, where ethics oversight mechanisms developed independently within universities, health institutions, and research organisations in response to institutional and international collaboration needs rather than through a centrally coordinated national framework (Owusu et al., 2022). As such, there is a need for Ghana to establish a national ethics review committee. This institution should be established by an Act of Parliament so as to give it the necessary legal backing and authority to provide research ethics oversight. The proposal to establish a national ethics review committee by Act of Parliament is not intended as a substitute for short-term compliance measures, but as a complementary reform strategy designed to respond directly to misperceptions, funding pressures and cost barriers.

With respect to misperceptions, a nationally mandated committee would have explicit authority to issue binding guidance that explicitly expresses when monitoring and evaluation activities meet the threshold for human participant research. Without this clarity, NGOs are likely to disengage from the ethics approval process even in the face of subsidies and reduced bureaucracies. Moreover, such guidance would reduce the definitional ambiguity that allows routine programmatic work to be categorised as exempt from review. This guidance must be integrated into the registration frameworks of NGOs. Regarding the structural cost barriers, a national ethics committee would be in a position to introduce differentiated fee structures based on organisational size, project risk level, and funding profile. It could also administer a subsidy mechanism, potentially supported through modest public funding or pooled donor contributions, to reduce financial disincentives for smaller local NGOs. This will encourage NGOs to subject themselves to ethical scrutiny.