by Lori Wilkinson, PhD, Department of Sociology and Criminology, University of Manitoba, Winnipeg, Canada
This blog is based on a presentation I gave at the 3rd Annual Meth@Mig Workshop in Mannheim in April 2024.
Research Ethics Boards wield significant power at Canadian universities, and so they should. Canada has a long history of mistreatment of research participants, particularly Indigenous peoples. One notorious example that was just “unearthed” involves my own university. Between 1942 and 1947, the federal government, with the assistance of several universities, participated in controlled starvation experiments with Indigenous children living in residential schools and in remote northern reservations (Mosby and Galloway 2017). The purpose of these experiments was to identify the vitamin supplements that could prevent brain and growth malformations among malnourished children (Canadian Press, 2013). Instead of feeding them, the government decided to conduct experiments on the starving children. This is one of many examples of historical and unethical behaviour amongst researchers working in Canada.
Today, Research Ethics Board (REB) approval is required before any researcher can conduct studies on any population. While their checks and balances are necessary to uphold the ethical and research integrity of our researchers and universities, there are some significant drawbacks with this approach, particularly when the research involves refugees. Ethics Boards at Canadian universities typically consist of a chair and several professors who are appointed to review ethics applications. Sometimes graduate students are appointed to the REB to provide them with professionalization experience. At some universities, members of the community participate as ex officio members. The procedure is that the lead researcher prepares a lengthy ethics proposal which is submitted and reviewed by the REB committee. If the committee deems the research as “minimal risk” in terms of harm to the participant, and as long as the research protocols meet the standards of protecting the participants, then the research is approved. In cases where there is “considerable risk” of harm towards the participants in the study, the entire REB must meet to approve or reject the study.
Typically, when research involving refugees as participants is proposed, the REB deems the project as “considerable risk” no matter what topic is investigated. While I am not advocating the cancelation of REBs, especially given the long history of maltreatment of research participants in Canada, there is a significant problem with their expertise in terms of what they know and what they “think” they know. Many REB board members presume that refugees are indelibly and irreversibly damaged by their refugee experience and therefore cannot give informed consent to participate in research. This is a very outdated and patronizing assumption that is built upon counterfactual stereotypes about refugees.
Indeed, most refugees have experienced significant trauma but because of the length of time it takes for refugees to arrive to Canada (on average about seven years), most refugees have already reconciled with their experiences and are no longer at the acute phase of trauma recovery once they resettle (Wilkinson and Ponka, 2018). In fact, research suggests that the majority of mental health problems among refugees occurs as a result of the uncertainties and challenges of the resettlement process (Anderson et al., 2015) and not the trauma experiences that made them refugees in the first place. Research conducted by Beiser (2005) and Bourque and his associates (2011) also finds that the rate of mental health illness is only marginally higher among refugees than the domestic population.
In my 25 years of working with former refugees as a researcher, I have had the privilege of conducting qualitative and quantitative interviews with over 10,000 refugees. I have never had to end an interview because a bad memory has resurfaced, or the participant has been unable or refuses to continue, or that the aspects of the research process have caused them distress. None of my participants have used the list of psychological and resettlement supports I have offered them at the completion of the interview. Instead, many of my participants indicate that they want their “story to be told to everyone” and that some participants want their actual name to be used in the research (as a rule, we always give participants a pseudonym). I cannot be certain that this unblemished track record will continue in my future research, so I remain extra vigilant and I carefully design my studies to ensure that the participants understand they are participating in a study and can leave the study at any time, provide translations, interpreters and interviewers who can speak the language of the participant. My interviewers are equipped with a list of mental health supports that can be contacted during the interview (this has never happened) and we leave a list of contacts should the participant desire assistance after we leave (no one has ever contacted the list of supports).
What remains frustrating is that every time I propose a new project for REB approval, I am constantly asked to “prove” my participants have no pre-existing trauma that would prevent them from providing consent to participate. This requirement comes from the stereotypes perpetuated by media and governments about the refugee as a damaged “victim” who is incapable of providing consent because of the trauma they once experienced. To try to prevent the inevitable delays in obtaining approval, I ensure that every REB proposal contains information about the research on trauma and refugees. Every new chair receives a copy of this research to help educate them. But my research is inevitably slowed every time due to the belief that refugees cannot provide consent. Assuming they lack capacity to consent as a default position is patronizing towards refugees and is incorrect.
What is distressing, however, is that there are real ethical challenges I face when conducting research on refugees, but the REB has no idea what those ethical concerns are. My most recent research on Afghan refugees arriving to Canada after the fall of Kabul in August of 2021 (Wilkinson, et. al, 2024) provides a good example. The post-Taliban takeover of Afghanistan has made conditions unlivable and dangerous for those left behind. In my experience working with refugees, I would occasionally receive requests to provide participants with assistance in getting their family members out of the country. With the Afghan refugee project, these requests ballooned. As I provide my email and contact information to all participants as part of the study, I am “easy to locate” in the digital world. As a result, I have received desperate emails and telephone calls from families who are hoping that I have some influence with the government and can get their families out of Afghanistan and resettled into Canada. These queries are often accompanied by extremely sensitive and personal details (such as identity documents, passports, location information of family members) that if passed to the wrong person, could greatly endanger these individuals. Luckily, I have contacts inside and outside the government and with the participants’ permission, I pass along this information to the appropriate authorities and digitally erase the information they have provided to me. I never know if my contacts are able to assist them.
Other refugee participants ask me for assistance in locating missing family and friends. Some families are unsure if their loved one is alive or dead. Others simply believe they are alive and ask me for assistance in locating them. Because the REBs in Canada are untrained in the aspects of refugee experience, they do not know enough to be concerned about the ethics of these requests. These requests, however, are becoming increasingly common as families wait for longer periods of time to reach safety, as the numbers of refugees needing resettlement increase, and as the conflicts they flee use increasingly inhumane measures such as kidnapping, torture, forced enlistment and sexual enslavement as part of their arsenal of destruction. It is these issues that are most ethically perplexing, but that the REBs have little to no understanding because they lack expertise in the study of refugees. Instead of holding on to a patronizing attitude that refugees cannot make informed consent decisions, they should be thinking more about the ethics of what researchers can and should do when they are inevitably requested to help them locate family and friends and provide safe passage to those in need of resettlement. Those are the real ethical issues we need to be concerned with.
References
Anderson, K.K., J. Cheng, E. Susser, K.J. McKenzie and P. Kurdyak (2015), ‘Incidence of psychotic disorders among first-generation immigrants and refugees in Ontario’, Canadian Medical Association Journal, 187 (9), E279–E286, doi:10.1503/cmaj.141420.
Beiser, M. (2005), ‘The health of immigrants and refugees in Canada’, Canadian Review of Public Health, 96 (2), 30–44, doi: 10.1007/BF03403701.
Bourque, F., E. Van Der Ven and A. Malla (2011), ‘A meta analysis of the risk for psychotic disorders among first- and second-generation immigrants’, Psychological Medicine, 41 (5), 897–910, accessed 3 November 2016 at https://www.researchgate.net/profile/Elsje_Van_Der_Ven/publication/45388223_A_meta-analysis_of_the_risk_for_psychotic_disorders_among_first-_and_second-generation_immigrants_Psychol_Med/links/0c96053be6759a67d6000000.pdf
Canadian Press (2013) “Hungry Aboriginal (sic) people used in bureaucrats’ experiments” CBC News online July 16 2013. Accessed at https://www.cbc.ca/news/canada/manitoba/hungry-aboriginal-people-used-in-bureaucrats-experiments-1.1317051
Mosby, I and T Galloway (2017) “Hunger was never absent”: How residential school diets shaped current patterns of diabetes among Indigenous peoples in Canada. Canadian Medical Association Journal 189(32): E1043-E1045. Accessed at https://www.cmaj.ca/content/189/32/e1043
Wilkinson, Lori and David Ponka (2018) “The mental health of immigrants and refugees in Canada” pp. 88-110 in Migration, Health and Survival: International Perspectives. Frank Trovato, ed. Northampton, Mass: Edward Edgar Publishers.
Wilkinson, Lori, Sally Ogoe, Rosty Othman, Piper Larsen, Nikol Veisman, and Kezia Wong (2024) The experiences of arrival and resettlement of Afghan refugees during the pandemic-interim report. Ottawa: Immigration Refugees and Citizenship Canada. Submitted to the House of Commons Special Committee on Afghanistan, 44th Parliament.
About the author:
Lori Wilkinson is a Distinguished University Professor in sociology at the University of Manitoba in Winnipeg Canada and holds a Canada Research Chair in Migration Futures.