Obtaining consent was common (249, 87%). Cultural perspectives were considered in 42% (n=121) of the investigations and included gender and religious norms such as matching the gender of the interviewer and/or interpreter to that of the participant, as well as ensuring homogenous focus groups (e.g., all female). Transparency during this phase can address concerns regarding the impact on the community and answer questions for those unfamiliar with the investigational process [6]. Therefore, we limited our search to only refugees to narrow the scope and conduct a more focused review (however, the inclusion of these populations in addition to refugees did not lead to exclusion of an article). Am J Bioeth. Ethics. Cite this article. However, to exclude refugees from research or public health investigations because of their vulnerability violates the codes of justice and fairness [10], because evidence obtained from such investigations could inform targeted interventions, validate models of health service delivery, and ultimately protect the well-being of these individuals [3, 4, 7, 11]. Five USD inside a refugee camp in Uganda, for instance, can have a drastically higher value than the same incentive provided after resettlement in the United States. Google Scholar. After reviewing available literature on ethics in refugee investigations, the authors developed a data abstraction tool, with assistance from a refugee health expert and two public health ethics experts, to capture methodological aspects pertaining to ethics questions and dilemmas. Furthermore, in conflict settings where investigators need security guards, community engagement is particularly important to address potential power imbalances. The author(s) read and approved the final manuscript. High-quality data from such assessments are needed to develop evidence-based interventions and services and to guide national and international health policies. Dingoyan D, Schulz H, Mosko M. The willingness to participate in health research studies of individuals with Turkish migration backgrounds: barriers and resources. Upon establishing this initial list in PubMed, we conducted the second stage of article selection by thoroughly reviewing the title and abstract (and in some instances where the abstract lacked the required information, the full article) according to the following inclusion criteria: (a) subjects of the article were refugees (not aid workers, clinicians, etc. J Community Health Nurs. Siriwardhana C, Adikari A, Jayaweera K, Sumathipala A. Thousand Oaks: Sage Publications; 2009. Improving access to mental health services for racialized immigrants, refugees, and non-status people living with HIV/AIDS. Ultimately, strict privacy and confidentiality measures help to prevent further emotional or physical harm. Additionally, during community engagement and project development, investigators should (a) clearly differentiate investigational activities from provision of social services or humanitarian aid, or processes required for resettlement and (b) ensure that participation does not affect provision of services (e.g., by scheduling interviews outside ration distribution hours, or ensuring the investigation does not take medical personnel away from routine duties) [6, 11, 13]. Measles, mumps, rubella, and varicella seroprevalence in refugees in Germany in 2015. 2015;45:90100. Emery CR, Lee JY, Kang C. Life after the pan and the fire: depression, order, attachment, and the legacy of abuse among north Korean refugee youth and adolescent children of north Korean refugees. document refugee travel nsf identification card ids issued alternative access dhs credential twic worker transportation *The findings and conclusions in this report are those of the author(s) and do not necessarily represent the official position of the Centers for Disease Control and Prevention. Tilbury F. Ethical dilemmas: principles and practice in research with African refugees. Of these 24, 23 (96%) mentioned an ethics review (4% unknown), and of these 23: the authors of 11 (48%) articles conducted both an internal (within the country of investigation) and external (within the investigators home countries) ethics review, the authors of 4 (17%) articles conducted an internal review only, and the authors of 7 (30%) articles conducted an external review only. 1979. Empower the community post-investigation by presenting results at forums (where community members can comment), ensuring sustainability of an intervention that the community can assume ownership of, or providing classes or trainings. 2001;357(9266):14323. Alemi Q, James S, Montgomery S. Contextualizing afghan refugee views of depression through narratives of trauma, resettlement stress, and coping. As we reviewed those articles, we noted additional ethics-related scenarios raised or addressed, and we added a question to the data abstraction tool. Bull World Health Organ. Ethical challenges in mental health research among internally displaced people: ethical theory and research implementation. Hagaman AK, Sivilli TI, Ao T, Blanton C, Ellis H, Lopes Cardozo B, et al. For example, in a previous assessment of refugee knowledge around scientific investigations, less than half (44%) of refugee respondents correctly answered false when asked whether once somebody starts participating they are not allowed to quit [46]. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. At least 20 articles stated that they engaged highly trained and qualified clinicians to administer the interventions and provided referrals as needed to culturally competent service providers [21,22,23,24,25,26,27,28]. Many refugees have never participated in investigations before and may not understand the concept of research or the investigation process [13]. 2016;18(4):81927. Some refugees are subject to continued oppression, restrictions on their liberty of movement, and gross power imbalances within refugee camps [6]. Google Scholar. Cham (CH)2016. p. 285-318. About two-thirds (162, 65%) of the investigations who stated they obtained informed consent mentioned translating the consent. Springer Nature. We examined the recently published literature to understand the application of ethics principles in investigations involving refugees. Refugee investigations are needed. This report was supported in part by an appointment (ES) to the Applied Epidemiology Fellowship Program administered by the Council of State and Territorial Epidemiologists (CSTE) and funded by the Centers for Disease Control and Prevention (CDC) Cooperative Agreement Number 1U38OT000143-05. Accessed 19 April 2019. The authors declare that they have no competing interests. 2009;3:7. Google Scholar. Conducting ethical research and evaluation in underserved communities. PubMed 2016;20(Suppl 3):40816. stress vulnerability mental health CAS However, one should also consider the format and type of consent to ensure complete understanding and respect. Prehosp Disaster Med. 2016;53(5):63053. Misra SM, Nepal VP, Banerjee D, Giardino AP. Stevens A, Gilder ME, Moo P, Hashmi A, Toe SET, Doh BB, et al. 2018. https://www.unhcr.org/globaltrends2018/. 2016;44(6):7817. Articles included in review and additional characteristics. Tomczyk B, Lor A. The inherent dangers and extreme circumstances affecting people experiencing conflict and forced migration can make it difficult to simultaneously collect quality data and protect the rights of individuals with adherence to the highest ethical standards [7]. Few articles mentioned the presence of a refugee on the committee or review of the protocol by refugees. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. AD, JW, and PS contributed to the refining of the data collection tool, data collection, and manuscript development/revision. For instance, resettled refugees may feel less burdened by investigations because many of their acute needs have been addressed, while those not yet resettled may be more vulnerable. Such a framework requires flexibility in order to remain applicable to the diversity in age, socioeconomic status, education level, and cultural practices among refugee populations, meaning that the weight given to a particular principle can and often should vary by context [49]. Quantitative variables were analyzed using descriptive statistics. Finally, investigators should carefully consider the need for and utility of their investigation before initiation to prevent overburdening refugees with similar or repetitive investigations, often referred to as over-researching [3, 6, 7, 38]. For instance, this engagement can take the form of a formal community needs assessment or informal community-wide meetings to identify the type(s) of services needed or the benefits and risks of a specific project or intervention. The addition of requirements by funding agencies and journals to outline and document procedures used may also help to ensure adherence to ethical guidelines. Options for non-written consent may include verbal consent, audio or video-recorded consent, or witnessed consent (a witness signs) [48]. However, investigators must anticipate that the power hierarchy within the refugee population might unduly influence potential participants or predetermine which individuals or groups have access to the research, and take steps to minimize such influences [7, 41]. Acute survival needs, fear of stigma or persecution, and history of trauma may present challenges to ensuring meaningful informed consent and establishing trust. Although many of the basic ethics principles examined in our analysis translate to other migrant populations, there are also differences in the regulatory processes of resettlement that makes these groups different and warrant a deeper assessment of ethics principles for different migrant groups beyond the scope of this analysis. This, as well as other best practices outlined above, follow the community-based participatory research approach (an approach that collaboratively includes all parties involved throughout the research process, acknowledging that each party brings unique strengths and perspectives) [51]. Public Health. ES is supported via an appointment to the Applied Epidemiology Fellowship Program administered by the Council of State and Territorial Epidemiologists (CSTE) and funded by the Centers for Disease Control and Prevention (CDC) Cooperative Agreement Number 1U38OT000143-05.