ETHICAL DILEMMAS: Are assessments in a humanitarian setting ethical?
WHY DO YOU NEED MORE information from us? When will concrete benefits result from our time?" an Iraqi woman sighed in frustration. She was living in Amman, Jordan as a refugee and had been asked several times in the last few months about the mental health problems of Iraqi refugee families by organizations who had come knocking on her door.
This is just one example of the burnout among individuals who are visited by multiple research and evaluation teams; teams that do not coordinate with each other and may leave without bringing tangible benefits to the affected population.'I cannot provide for my family. I will agree to anything to get some food on the table," an Iraqi man exclaimed in desperation while giving informed consent to answer a few research questions about the local Iraqi situation. His comments provide another example of the complex cultural and sociopolitical context that can compromise basic principles of conducting ethical research, such as providing "true informed consent."
In situations like this, potential participants may expect potential benefits and feel pressure from their families or communities to consent. People may also feel that putting their names on a document might put them at risk. There are also other potential ethical challenges. The experience of a home-based study that sought to assess individual levels of mental and psychosocial symptoms in a refugee community is illustrative. In such a study, chances are good that researchers encounter people suffering from severe to moderate mental health disorders. In this particular case, as part of a basic safety assessment to determine whether the beneficiary was at risk to self or others, the interviewer asked, "In the last two weeks, how often did you think of ending your life?" The response from the 15-year-old girl taking part in the study was a teary confession of having attempted to end her own life a number of times. It is unethical to ask such a question without having a systematic approach of referral for participants who may present with severe, or common, untreated disorders, or who are a danger to themselves or others. These examples illustrate potential ethical challenges when conducting mental health research in humanitarian settings. Indeed, such research can have a variety of unintended negative consequences. For example, interviewing vulnerable groups (e.g. survivors of rape) can put them at risk for further stigmatization and discrimination by their communities and expose them to security risks. Conducting mental health assessments and subsequently labeling specific individuals and groups as "traumatized" or suffering from specific mental disorders can foster feelings of victimization and disempowerment. Moreover, measures to assess mental health problems have often been developed in Western settings and may yield misleading information. Those instruments define problems and symptoms that may be inappropriately narrow, may not fit with culture-specific expressions of distress, and may preclude participation of the affected population in describing their own challenges and needs. Traditional institutional review boards of academic institutions (the bodies charged with assessing proposed research methods) often are not prepared to weigh the complex ethical issues involved in humanitarian contexts.
Does this mean we should abandon the idea of conducting mental health research among populations affected by conflict and crises?
A recent report from the 2009 Harvard Humanitarian Action Summit argues to the contrary. While research in such settings raises ethical challenges, it can be argued that not collecting such data can be considered unethical as well. The evidence base on mental health and psychosocial interventions in diverse cultural settings is still scarce and there is a strong need for developing best practices. For example, some psychological interventions, such as single-session debriefing after potentially traumatic events, have been found to be harmful. Therefore, collecting qualitative and quantitative data on the effects of mental health and psychosocial interventions is arguably essential for developing best practices and guidelines, and to ensure accountability in this field.
But can such data collection be considered research? And should such assessments be subject to the same ethical requirements that academic researchers have to follow? "This is not research. This is a needs assessment," a field officer said defensively in response to his supervisor's concern that some ethical considerations were not taken into account during a key informant interview. This example leads to questions such as: "Where is the border between reporting, assessment and research?" and "Do we avoid ethical dilemmas by calling research something else?" Research is designed to produce new knowledge-be it to structure or identify new problems, develop solutions to a problem or to test the feasibility of a solution using empirical evidence. In this respect, we believe that the ethical requirements for conducting mental health and psychosocial research apply to any form of information gathering that involves the participation of affected populations.
Given the importance of research and evaluation on one hand and the potential pitfalls and complexities of humanitarian environments on the other, it is important to develop guidance for organizations working in this field. The Working Group on Mental Health and Psychosocial Support in Crisis and Conflict, which was convened as part of the Harvard Humanitarian Action Summit, has described ethical challenges faced by mental health researchers and offered guidance and recommendations that build on the Inter-Agency Standing Committee Guidelines on Mental Health and Psychosocial Support in Humanitarian Settings. The group, which includes International Medical Corps and other international NGOs as well as academicians from various geographic regions, has formulated recommendations spanning the themes of purpose and benefits of research, issues of validity, neutrality, risk, subject selection and participation, confidentiality, consent and dissemination of results. The group believes there should be "no survey without service" and "no service without survey"- underscoring the commitment to benefitting the affected population and the need for research and evaluation of interventions.
There has been some exemplary emerging research in this field that takes into account such considerations and engages affected communities in partnerships to discuss their priorities and to foster local agency. The working group from the Harvard summit views its report as a living document and continues to seek input from individuals and groups from various geographical regions, especially those from low-income countries. The goal is to facilitate high quality research, evaluation, and assessments that take into account ethical considerations, involve the affected populations and contribute to tangible benefits and best practices.