Ethics OF and ethics IN humanitarian research

Author: Matthew Hunt

I am pleased to join in the conversation initiated by Donal O’Mathuna, and already taken up by Hugo Slim and Julian Sheather, on the ethics of evidence in humanitarian action. In my comments here, I focus on the second point Donal raised in his original post: the importance of addressing ethical considerations in why and how evidence is generated – especially for humanitarian research. Careful attention is needed toward both the ethics OF research in humanitarian settings, that is the justification for launching a particular study and whether it is designed in an ethically robust manner, and ethics IN research, including attention to ethical considerations arising in the course of carrying out a study. Many aspects could be highlighted. I flag five here.

The justificatory bar is raised

An important starting place for humanitarian research ethics is to inquire about expected ends: What knowledge is likely to be gained by a study and who will benefit from that knowledge? The decision to undertake research in a crisis warrants scrutiny. People are experiencing strain and turmoil, and may be under threat or face challenges to meet their basic needs, while social systems are frayed and infrastructure burdened or destroyed. Given these realities, the justificatory bar for research is high: If a study could be conducted in a non-crisis situation and still answer its research question, it should be. If it could be delayed until the acuity of the crisis diminishes, it ought to be. Beyond this, careful consideration is needed whether a study is responsive to local needs, and likely to generate knowledge relevant to the priorities of local communities or others that will experience disaster, war or epidemic in the future.

Getting the science right is an ethical responsibility

Sometimes ethics is separated out from the methodological rigor of research. However, bad science is never ethical since it (at least) exposes people to inconvenience and wastes resources better spent elsewhere, or (worse yet) exposes people to needless harm or leads to policy or practice changes based on faulty evidence. These considerations are particularly salient in humanitarian research where vulnerabilities are amplified and resources are scarce. Questions regarding the feasibility of standard methodological approaches may also be raised in some contexts, leading to the need for adaptive designs. The 2014-15 Ebola outbreak in West Africa highlighted that methodological approaches need to be carefully attuned to the context of humanitarian research. Ethical review processes need to be sensitive to this reality, and reviewers require adequate understanding of the ethical implications of methodological decisions.

Demonstrating respect for individuals and communities affected by crisis

Julian Sheather rightly notes that researchers must treat participants with respect, and not just as grist for the research mill. There are a host of ways that researchers take up and discharge this responsibility. For example, researchers may use creative means, such as a white noise machine to ensure that interviews about sensitive topics cannot be overheard even in a crowded refugee camp. Respect is not limited to data collection. It can also be demonstrated by providing information to participants about the results of a completed study, and by managing their data and biological samples with diligence and care.

Engaging with communities

When we interviewed disaster researchers and members of Research Ethics Committees (RECs) who had reviewed disaster research protocols, we were struck by the following tension: interviewees identified community engagement as especially important, even essential, in disaster settings, yet they also consistently described it as very difficult to achieve. Considerations included how to develop trust, identify community representatives, partner with local organizations, and establish parameters for effective collaboration. How “to find ways in which community participation can be ensured and enhanced while being realistic about time and resource constraints” has been described as a key ethical challenge for humanitarian research. Compiling experiences of effective community engagement in humanitarian research would be an important service for shared learning in this area.

Accessing support and using judgement

Careful review by a knowledgeable REC helps ensure that planned research is ethically robust. Unanticipated ethical challenges often arise, however, during implementation of humanitarian research due to the unpredictability and shifting nature of crises. Researchers will need to use judgment in responding to situations of ethical uncertainty. Developing more dynamic models of support and feedback will be useful, as well as training initiatives tailored for humanitarian researchers.

Humanitarian research is an important source of evidence and can yield valuable knowledge to improve crisis response, a clear ethical good. While pursuing this goal, careful attention to both the ethics OF and ethics IN these research activities is a key responsibility for researchers, partnering organizations, RECs and funders.

Matthew Hunt, PT, PhD, is an Associate Professor at the School of Physical and Occupational Therapy of McGill University, and co-lead of the Humanitarian Health Ethics Research Group.