Disaster research has grown in scope and frequency. Research in the wake of disasters and during humanitarian crises – particularly in resource-poor settings – is likely to raise profound and unique ethical challenges for local communities, crisis responders, researchers, and research ethics committees. Given the ethical challenges, many have questioned how best to provide research ethics review and oversight. We contribute to the conversation concerning how best to ensure appropriate ethical oversight in disaster research and argue that ethical disaster research (...) requires of researchers and RECs a particular sort of ongoing, critical engagement which may not be warranted in less exceptional research. We present two cases that typify the concerns disaster researchers and RECs may confront, and elaborate upon what this ongoing engagement might look like – how it might be conceptualized and utilized – using the concept of real-time responsiveness. The central aim of RTR, understood here as both an ethical ideal and practice, is to lessen the potential for research conducted in the wake of disasters to create, perpetuate, or exacerbate vulnerabilities and contribute to injustices suffered by disaster-affected populations. Well cultivated and deployed, we believe that RTR may enhance the moral capacities of researchers and REC members, and RECs as institutions where moral agency is nurtured and sustained. (shrink)

This article is in response to Wurr and Cooney’s Case Discussion entitled ‘Ethical dilemmas in population-level treatment of lead poisoning in Zamfara State, Nigeria’. The Case Discussion draws attention to Médecins Sans Frontières’ (MSF’s) remarkable achievement of providing the world’s first population-level treatment for severe lead poisoning. Wurr and Cooney raise two key ethical issues: treatment in the face of ongoing exposure, and withdrawal from program. Having participated in the emergency response to the lead-poisoning outbreak, I reflect on the Case (...) Discussion and how the ethical issues fall within a troubling broader context. I offer a deeper analysis of the ethical issues by raising further substantive and philosophical considerations. I draw attention to social injustice and inequity at the root of the disaster, and link the disaster to neoliberal economic policies that impose public health austerity and then look to private non-governmental organizations for disaster response. A larger ethical concern is how the humanitarian response, in addressing immediate medical needs, can leave unjust political structures intact. Around the world, abject poverty, high gold prices and unviable traditional farming continue to drive families into dangerous artisanal mining. Meanwhile, the longer-term prospects for the severely lead-affected children of northern Nigeria remain grim. (shrink)

The conduct of research in settings affected by disasters such as hurricanes, floods and earthquakes is challenging, particularly when infrastructures and resources were already limited pre-disaster. However, since post-disaster research is essential to the improvement of the humanitarian response, it is important that adequate research ethics oversight be available. We aim to answer the following questions: 1) what do research ethics committee members who have reviewed research protocols to be conducted following disasters in low- and middle-income countries perceive as the (...) key ethical concerns associated with disaster research?, and 2) in what ways do REC members understand these concerns to be distinct from those arising in research conducted in non-crisis situations? This qualitative study was developed using interpretative description methodology; 15 interviews were conducted with REC members. Four key ethical issues were identified as presenting distinctive considerations for disaster research to be implemented in LMICs, and were described by participants as familiar research ethics issues that were amplified in these contexts. First, REC members viewed disaster research as having strong social value due to its potential for improving disaster response, but also as requiring a higher level of justification compared to other research settings. Second, they identified vulnerability as an overarching concern for disaster research ethics, and a feature that required careful and critical appraisal when assessing protocols. They noted that research participants’ vulnerabilities frequently change in the aftermath of a disaster and often in unpredictable ways. Third, they identified concerns related to promoting and maintaining safety, confidentiality and data security in insecure or austere environments. Lastly, though REC members endorsed the need and usefulness of community engagement, they noted that there are significant challenges in a disaster setting over and above those typically encountered in global health research to achieve meaningful community engagement. Disaster research presents distinctive ethical considerations that require attention to ensure that participants are protected. As RECs review disaster research protocols, they should address these concerns and consider how justification, vulnerability, security and confidentially, and community engagement are shaped by the realities of conducting research in a disaster. (shrink)

The humanitarian sector continually faces organizational and operational challenges to respond to the needs of populations affected by war, disaster, displacement, and health emergencies. With the goal of improving the effectiveness and efficiency of response efforts, humanitarian innovation initiatives seek to develop, test, and scale a variety of novel and adapted practices, products, and systems. The innovation process raises important ethical considerations, such as appropriately engaging crisis-affected populations in defining problems and identifying potential solutions, mitigating risks, ensuring accountability, sharing benefits (...) fairly, and managing expectations. This paper aims to contribute to knowledge and practice regarding humanitarian innovation ethics and presents two components related to a value-sensitive approach to humanitarian innovation. First is a mapping of how ethical concepts are mobilized in values statements that have been produced by a diverse set of organizations involved in humanitarian innovation. Analyzing these documents, we identified six primary values (do-no-harm, autonomy, justice, accountability, sustainability, and inclusivity) around which we grouped 12 secondary values and 10 associated concepts. Second are two proposed activities that teams engaged in humanitarian innovation can employ to foreground values as they develop and refine their project’s design, and to anticipate and plan for challenges in enacting these values across the phases of their project. A deliberate and tangible approach to engaging with values within humanitarian innovation design can help to ground humanitarian innovation in ethical commitments by increasing shared understanding amongst team members, promoting attentiveness to values across the stages of innovation, and fostering capacities to anticipate and respond to ethically challenging situations. (shrink)

Health researchers, research trainees, and ethics reviewers should be prepared for the special application of research ethics within complex humanitarian emergencies. This paper argues that as a precursor to published ethical guidelines for conducting research in complex emergencies, researchers and research ethics committees should observe the following primary ethical considerations: (1) the research is not at the expense of humanitarian action; (2) the research is justified in that it is needs-driven and relevant to the affected populations; and (3) the research (...) does not compromise the humanitarian principles of neutrality, impartiality and independence. These primary considerations are in harmony with the humanitarian goals of saving lives, alleviating suffering, and témoignage. Furthermore, there is an important role for research in supporting humanitarian action, and the extreme vulnerability of research participants in complex emergencies demands intense research ethics scrutiny. It is important to discern which ethical considerations are essential, and which are merely desirable, as excessive research ethics requirements may impede life-saving research. (shrink)