Ethical Considerations for Research with Victims of Political Violence and Human Rights Violations
January 27, 2015
A casual review of the recent international news will yield a plethora of stories on the escalating humanitarian crises around the world. Ongoing political conflicts have resulted in unprecedented numbers of forcibly displaced individuals, with 5.5 million individuals displaced from their homes in the first six months of 2014 alone (United Nations High Commissioner for Refugees [UNHCR], 2015). Millions of others continue to live in conflict-affected areas where they risk exposure to violence, persecution and other human rights violations.
Psychological research with these populations has the potential to enhance our understanding of the diversity of human response to extreme stress and trauma and perhaps more important, to inform effective psychosocial interventions. Such research, however, involves unique ethical considerations to ensure the protection of participants as well as the accuracy and relevance of the data (Mackenzie, McDowell & Pittaway, 2007; Pittaway, Bartolomei, Hugman, 2010).
Ethical issues in research with individuals who have experienced political violence and human rights violations are multifaceted, particularly when the study is conducted in a humanitarian setting or an area with ongoing political tensions (Beyrer & Kass, 2002). Standards for conducting research outlined by our professional associations including adequate balance of risks and benefits, informed consent, confidentiality, and validity certainly apply, though each requires special consideration (Allden et al., 2009; Ellis et al. 2007). Below I provide a brief overview of a few of these concerns and provide suggestions for further reading on the topics.
Understanding the sociopolitical context where data will be collected is crucial for accurately evaluating potential risks for participants (Beyrer & Kass, 2002). There are, unfortunately, a number of examples in the literature of researchers and clinicians unintentionally causing harm when working in humanitarian settings because of a lack of knowledge about important contextual factors (see Beyrer & Kass, 2002; Mackenzie et al., 2007; Pittaway et al., 2010; Wessels, 2009 for examples). Beyond emotional distress, in some situations participation in and of itself could compromise the safety of participants. In crowded settings or settings where community members are closely monitored it may be impossible to guarantee that an individual’s participation is confidential. Furthermore, breaches in confidentiality on sensitive issues such as sexual assault history, political affiliation, religious belief, and sexual orientation could put participants and their family members in serious danger (Beyrer & Kass, 2002; Mackenzie et al., 2007; Pittaway et al., 2010). In light of these risks, it is imperative that research be well designed and address relevant problems to increase the probability of tangible benefits for the population (Allden et al., 2009; Leaning, 2001).
It is important to recognize how the power differential between researchers and participants may lead to coercion in the data collection process, particularly when Westerners are working in low-resource areas (Leaning, 2001). Informed consent, widely considered the cornerstone of ethical research, has an added layer of complexity when potential participants live oppressive contexts or settings where they fear repercussions for declining participation (Bhutta, 2004; Ellis et al., 2007; Pittaway et al., 2010).
Individuals in low-resource countries may not possess the reading skill needed to understand written consent documents, and difficulties translating Western terminology into the local language can lead to misunderstandings regarding the nature of participation (Wessells, 2009). Misunderstandings in the consent process can lead to a number of problems including perceptions that participation is compulsory or inaccurate expectations about the benefits of participation (Allden et al., 2009; Pittaway et al., 2010). Factors influencing informed consent can also compromise the validity of the data. Participants may not be willing to disclose certain information or may provide socially acceptable but inaccurate responses if they fear repercussions (Beyrer & Kass, 2002).
Inaccurate translation of materials and miscommunications during interviews could lead to erroneous conclusions. As with all cross-cultural research, protocols that are not culturally sensitive are not likely to yield meaningful information (Allden et al., 2009). Validity issues are of particular importance when data are used to make decisions regarding resource allocation, program development, or psychological interventions (Beyrer & Kass, 2002).
This is by no means an exhaustive list of concerns. Authors have raised a number of other issues including the degree to which a researcher can or should remain neutral when learning about ongoing human rights abuses (Pittaway et al., 2010), and the challenges in recruiting a truly representative sample (Beyrer & Kass, 2002; Ellis et al., 2007). There are no simple solutions to these issues, but awareness of potential pitfalls is a start. Some authors have advocated for a participatory research design to reduce the power differential between researchers and participants (see Pittaway et al., 2010). Suggestions for handling the complexity of obtaining meaningful informed consent are also available in the literature (see Bhutta, 2004; Hugman, Bartolomei, & Pittaway, 2011; MacKensie et al., 2007). Risks to validity can be mitigated to some degree by careful planning and knowledge of local concerns and cultural norms (Allden et al., 2009).
An important first step is learning about the sociopolitical context where the study will be conducted in order to accurately evaluate risks. Beyrer and Kass (2002) recommended seeking information from multiple sources including news outlets and local contacts. Additional recommendations for addressing these and other research concerns are provided by Allden and colleagues (2009).
Tol et al. (2011) outlined priorities for research in humanitarian settings for the next ten years based on expert consensus. These authors provided guidelines for conducting meaningful research, one of which is to focus efforts on topics that will have direct benefit. The importance of research benefiting the population and not just the scientific community is an important ethical concern when participants are vulnerable and potentially at risk (Allden et al., 2009; Ellis et al., 2007). Pittaway et al. (2010) summarized this nicely stating, “the ethical challenge is for researchers to add value to the lives of the people they are researching, recognizing them as subjects in the process and not simply as sources of data (p. 231).”
About the Author
Jessica E. Lambert, PhD, is an assistant professor in the Psychology & Child Development department at California State University, Stanislaus. Her research program is primarily focused on the long term impacts of war-related and interpersonal violence. Current projects include an investigation of risk and resiliency among traumatized Iraqi refugee families, and evaluation of factors associated with of adaptation among Tamil war widows in Sri Lanka. She teaches courses in research methods, trauma and crisis intervention, and community mental health. Clinically, she has treated survivors of torture, adult survivors of childhood abuse, as well as male and female veterans.
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Beyrer, C., & Kass, N. E. (2002). Human rights, politics, and reviews of research ethics. The Lancet, 360(9328), 246-251.doi: http://dx.doi.org/10.1016/S0140-6736(02)09465-5
Bhutta, Z. A. (2004). Beyond informed consent. Bulletin of the World Health Organization, 82, 771-777. doi: /10.1590/S0042-96862004001000013
Hugman, R., Bartolomei, L., & Pittaway, E. (2011). Human agency and the meaning of informed consent: Reflections on research with refugees. Journal of Refugee Studies, 24(4), 665-671.doi: 10.1093/jrs/fer024
Leaning, J. (2001). Ethics of research in refugee populations. The Lancet, 357(9266), 1432-1433. doi: http://dx.doi.org/10.1016/S0140-6736(00)04572-4
Mackenzie, C., McDowell, C., & Pittaway, E. (2007). Beyond ‘do no harm’: The challenge of constructing ethical relationships in refugee research. Journal of Refugee Studies, 20(2), 299-319.doi:10.1093/jrs/fem008
Pittaway, E., Bartolomei, L., & Hugman, R. (2010). ‘Stop stealing our stories’: The ethics of research with vulnerable groups. Journal of Human Rights Practice, 2(2), 229-251. doi:10.1093/jhuman/huq004
Tol, W. A., Patel, V., Tomlinson, M., Baingana, F., Galappatti, A., Panter-Brick, C., ... & Van Ommeren, M. (2011). Research priorities for mental health and psychosocial support in humanitarian settings. PLoS medicine, 8(9), e1001096. doi:10.1371/journal.pmed.1001096.t001
United Nations High Commissioner for Refugees (2014). UNHCR Mid-Year Trends 2014. Retrieved from: http://unhcr.org/54aa91d89.html#_ga=1.241761163.801812261.1420684574
Wessells, M. G. (2009). Do no harm: Toward contextually appropriate psychosocial support in international emergencies. American Psychologist, 64(8), 842. doi: http://dx.doi.org/10.1037/0003-066X.64.8.842