Article By Dr. Dónal O’Mathúna, PhD, Associate Professor in the School of Nursing & Human Sciences, Dublin City University, Ireland and in the College of Nursing at The Ohio State University, USA. He is the director of the Center for Disaster & Humanitarian Ethics (http://www.ge2p2.org/cdhe), and the Principal Investigator of the PREA research project investigating ethical issues encountered during humanitarian research (http://PREAportal.org).
The Post-Research Ethics Analysis (PREA) project is a funded research project with two main aims. One is to learn lessons about actual research ethics issues and innovations from health research conducted in humanitarian crises. The second is to develop a tool to facilitate and promote ethical reflection among various stakeholders in such research projects.
The project was the brain-child of Dr. Chesmal Siriwardhana, arising from his experiences in the field and his desire to ensure that research participants were respected in research. Over a number of years while at Anglia Ruskin University, and then as Associate Professor in the Department of Population Health at the London School of Hygiene & Tropical Medicine, Chesmal developed and refined the research proposal. The PREA project was successfully funded in 2016 for two years through the R2HC/ELRHA programme. Tragically, Chesmal died in 2017 in a road traffic accident just as the project was getting started. The new Principal Investigator is Dr. Dónal O’Mathúna, Associate Professor in the School of Nursing & Human Sciences at Dublin City University, Ireland and in the College of Nursing at The Ohio State University, USA.
The PREA project arose in recognition of the growth in humanitarian health research which is crucial to provide evidence to guide decision-makers in humanitarian contexts. Health research in such contexts, including during disaster relief, often involves traumatized, vulnerable populations and faces numerous ethical challenges. The PREA project was developed in response to anecdotal discussions and team members’ personal experiences that research in humanitarian crises faces difficulties with the current research ethics governance model. Attention has focused on issues of ethical approval procedures and informed consent, but anecdotal evidence suggests that other ethical challenges predominate. The PREA team is concerned that procedures focused mostly on ethics approval prior to research starting may unintentionally overlook the actual ethical challenges experienced during and after the implementation of research projects. As a result, we believe that research is needed into the actual experiences of researchers (and other stakeholders and participants) involved with humanitarian research. A manuscript arguing this case and providing justifications has been submitted for publication by members of the PREA team and will be linked here when available. In addition, tools that help facilitate ethical reflection and decision-making throughout the research process would be helpful, especially in projects involving vulnerable participants.
The PREA project will gather evidence on the actual experiences of research ethics issues by researchers, ethics committees and other stakeholders when conducting health research in humanitarian and disaster settings. This will be done by carrying out qualitative interviews in a number of humanitarian settings in countries in Asia and Africa. Local researchers will be trained to carry out the interviews and thus help facilitate the development of local research infrastructure. Currently, research ethics approval and other permissions are being obtained for the various sites. By interviewing those involved in the conduct and review of humanitarian research, insight will be gained into the actual ethical issues encountered during the research process. We are also very interested in learning about innovative ways that researchers have responded to ethical challenges so that we can learn from other teams and share best practice.
The interviews from the different sites will be analyzed qualitatively and themes identified that will be used in developing a tool to help future researchers reflect on the ethical issues in their research projects. An early version of this tool will be piloted in each of the sites where interviews will be conducted as part of a research ethics training programme to be delivered in each country. This will give local researchers an opportunity to comment on the qualitative analysis and the developing PREA tool. In this way, the PREA project aims to contribute to the promotion of ethical values and practices in the conduct of humanitarian health research. In keeping with Chesmal’s vision and passion, we hope this will help promote humanitarian health research of the highest ethical standard, and help ensure future participants and their communities are respected throughout their involvement in research.
Details about the PREA team and partner research organizations are available on our project website at http://www.preaportal.org. This portal will eventually allow researchers to post examples of ethical challenges they have faced, and ways they have developed to address them in a humanitarian context. To get in contact with us, you can email firstname.lastname@example.org, or follow us on Twitter @Ethics_Analysis or Facebook https://www.facebook.com/EthicsAnalysis/.