Disaster research ethics is a growing area of interest within the research ethics field. Given the lack of a universal definition of disasters, it should not be a surprise that disaster research ethics is defined in various ways. Early approaches focused on ethical issues in conducting research in the acute phase of disasters (O’Mathúna 2010). Given the similarities of some of the ethical issues, it came to include humanitarian crises and emergencies. A recent review combined mental health research in natural disasters, armed conflicts and the associated refugee and internally displaced persons (IDP) settings (Chiumento et al. 2017). Each of these settings raises distinct ethical issues, as well as practical challenges for those ethically reviewing disaster research. The 2016 revision of the Council for International Organizations of Medical Sciences (CIOMS) research ethics guidelines included a section on disaster research (https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf). This blog will highlight a few of the practical challenges and note some efforts to respond to these.

One issue is how some disasters happen suddenly, while research ethics review takes time. The 2016 CIOMS guidelines call for innovative approaches to research ethics review, including ways to pre-assess protocols so that they can be reviewed rapidly once a relevant disaster occurs. As committees develop ways to adapt to disaster research, other review practices can be examined to identify innovative approaches to the challenges.

A key ethical issue to address with disaster research is whether a particular project should be conducted at this time with these particular participants. In the most immediate phase of an acute disaster, resources and energy should be focused on search and rescue. Researchers could hinder this, or divert scarce resources. At the same time, data should be collected as soon as possible to contribute to the evidence based for first responders. Ethics review committees should ensure justifications are provided for why a project needs to be done during the acute phase. Questions also need to be asked about whether disaster survivors have more important needs than to participate in research. For example, some have questioned whether children who survive war should be asked to participate in research when there are few resources available to help them with the mental health challenges of surviving war (Euwema et al. 2008).

With the move towards a more evidence-based approach to humanitarian work, international and non-governmental organisations (NGOs) are increasingly engaging in research and other evaluation programmes. Some of these organisations may have little experience with research or research ethics, and hence need additional support in developing and conducting projects. Much debate has occurred over what ‘counts’ as research and is therefore required to undergo formal research ethics approval. Rather than asking if a project is research or not, it is more important to identify the ethical issues in the project and ensure they are being addressed as carefully and thoroughly as possible (Chiumento et al. 2017). Needs assessments, projects that monitor or evaluate programmes, public health surveillance, and many other activities raise ethical issues whether or not they are formal academic research studies. At the same time, every project does not need to submit the same sort of detailed research ethics application as a randomised control trial of an experimental drug. Some sort of ethical evaluation should be conducted, and here again there is an opportunity to be innovative. Different formal and informal review mechanisms could be developed to support groups conducting different types of projects. The key concern should be that the ethical issues are being examined and addressed.

Also key here is that people in the communities from which participants will be sought are involved from the design of the project (O’Mathúna 2018). Too many ‘parachute projects’ have been conducted (some with ethical approval) whereby the project is designed completely by outsiders. Once everything has been decided, the team approaches the community only to identify a lack of interest in participating or that certain ethical challenges have been overlooked. Research in other cultures, especially in the midst of armed conflicts, is especially prone to such challenges. Review committees may need to encourage exploratory discussions between researchers and participant communities, or seek evidence of how such discussions have gone.

Unexpected ethical issues often arise in disaster research given the instability and complexity of its settings (O’Mathúna & Siriwardhana 2017). An approach where ethics review bodies give approval to projects and then have little or no engagement other than an annual report is especially inadequate in disasters. Researchers may be forced to make changes in fluid settings, or may encounter unexpected issues. Submitting amendments may not be practical or fast enough, when what is needed is advice and direction from those with research ethics expertise. Thus, initiatives are being developed to provide “on call” ethics advice.

This points to how disaster research often requires additional support and protection for researchers than other types of research. Researchers may enter danger zones (natural or violent) and may see or learn of horrors and atrocities. Researchers can be subjected to physical dangers or traumatised psychologically.. In addition to the normal stresses of conducting research, these additional factors can lead to mistakes and even ethical corner-cutting. Therefore, review committees need to carefully investigate how the physical and mental well-being of researchers will be protected and supported.

These are some examples of how research ethics needs to go beyond approval processes to mechanisms that promote ethical decision-making and personal integrity during research. One such project in which I am involved is seeking insight from humanitarian researchers into the ethical issues experienced in the field (http://PREAportal.org). We are also conducting a systematic review of such issues and collecting case studies from researchers. The goal is to produce a practical tool to facilitate learning lessons from disaster researchers and promote ethical decision-making within teams.

The world is increasingly experiencing disasters and conflicts and huge amounts of resources are put into responses. Some of these resources are put towards evaluating disaster responses, and developing evidence to support disaster responders. We can expect disaster research to increase and to be increasingly seen by research ethics committees. It is therefore important that ethics committees prepare themselves to respond to the ethical challenges that disaster research raises.

References

Chiumento, A., Rahman, A., Frith, L., Snider, L., & Tol, W. A. (2017). Ethical standards for mental health and psychosocial support research in emergencies: Review of literature and current debates. Globalization and Health 13(8). doi 10.1186/s12992-017-0231-y

Euwema, M., de Graaff, D., de Jager, A., & Kalksma-Van Lith, B. (2008). Research with children in war-affected areas. In: Research with Children, Perspectives and Practices, 2nd edition. Eds. Christensen, P. & James, A. Abingdon, UK: Routledge; 189-204.

O’Mathúna, D.  (2010). Conducting research in the aftermath of disasters: Ethical considerations. Journal of Evidence-Based Medicine 3(2):65-75.

O’Mathúna, D. (2018). The dual imperative in disaster research ethics. In: SAGE Handbook of Qualitative Research Ethics. Eds. Iphofen, R. & Tolich M. London: SAGE; 441-454.

O’Mathúna, D., & Siriwardhana, C. (2017). Research ethics and evidence for humanitarian health. Lancet 390(10109):2228-9.

Declaration of interests

Dónal O’Mathúna has been involved in research ethics for over twenty years. He was chair of the Research Ethics Committee at Dublin City University (DCU) for six years. In addition to his joint position at DCU and The Ohio State University, he is Visiting Professor of Ethics in the European Master in Disaster Medicine, Università del Piemonte Orientale, Italy. His research interests focus on ethical issues in disasters, in particular disaster research ethics. He was Chair of the EU-funded COST Action (2012-2016) on Disaster Bioethics (http://DisasterBioethics.eu) and is the Principal Investigator on the R2HC-funded research project, Post-Research Ethics Analysis (http://PREAportal.org).

Contributor
Dónal O’Mathúna, PhD
Associate Professor, School of Nursing & Human Sciences, Dublin City University, Ireland
Associate Professor, College of Nursing, The Ohio State University, Columbus, Ohio, USA
Dónal’s DCU profile | [email protected]
Twitter: @domathuna
http://BioethicsIreland.ie

This post may be cited as:
O’Mathúna D. (2018, 26 February 2018) ‘Disaster Research and its Ethical Review’. Research Ethics Monthly. Retrieved from https://ahrecs.com/human-research-ethics/disaster-research-ethical-review