The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. The two abstractors discussed any differences and reached a consensus. Confl Health. Schnyder U, Muller J, Morina N, Schick M, Bryant RA, Nickerson A. Google Scholar. Cultural considerations were generally limited to gender and religious norms, and 13% mentioned providing some form of post-investigation support. Although our current analysis provides important information regarding the present context and circumstances of refugees, the implementation of ethics principles in refugee health research should be revisited along with the changing landscape. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. Few articles discussed ethical considerations for this phase of investigations, but such considerations are not always reported in published articles and can occur after publication. Health in humanitarian emergencies: principles and practice for public health and healthcare practitioners. Some investigators ethnic and cultural backgrounds differed from those of the participants, setting the stage for potential clashes between cultural, gender, or religious norms [42]. Tohme J, Egan JE, Friedman MR, Stall R. Psycho-social correlates of condom use and HIV testing among MSM refugees in Beirut, Lebanon. Investigations conducted among refugees require additional diligence to ensure respect for and welfare of the participants. 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. An established framework that identifies innovative solutions to protect refugees while ensuring scientific validity would aid in improving future investigations. There exists a need for an updated and comprehensive refugee-specific ethics framework to guide future investigations. California Privacy Statement, Respecting the rights, values, and beliefs of individuals and communities, as well as ensuring privacy (particularly in refugee camps), safety, and autonomy are also critical when engaging refugees. 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]. If an author did not mention the information of interest, data abstractors filled in the variable as not mentioned, rather than no to avoid potential misrepresentation of the investigation or misclassification of the data (this was particularly pertinent to the post-investigation variables). Additionally, refugee resettlement, for many countries, is a regulatory process involving relocation from an asylum country to another country that has granted permanent settlement, and typically includes mandatory health screenings [1]. Gaps in smiles and services: a cross-sectional study of dental caries in refugee-background children. J Immigr Minor Health. Research ethics and refugee health: a review of reported considerations and applications in published refugee health literature, 2015-2018. Incentives were provided less frequently (23%). Public health investigations, including research, in refugee populations are necessary to inform evidence-based interventions and care. Translation of consent into the language the participant prefers may minimize misinterpretations. The challenges of the health care providers in refugee settings: a systematic review. Thousand Oaks: Sage Publications; 2009. A summary of these proposed best practices described can be found in Table5. Although relatively limited in scope, our analysis provided an opportunity to describe the application of research ethics principles in refugee settings cited within recently published articles. Nyboe L, Bentholm A, Gyllensten AL. Bodily symptoms in patients with post traumatic stress disorder: a comparative study of traumatized refugees, Danish war veterans, and healthy controls. 2018. https://www.unhcr.org/globaltrends2018/. Although at the surface level these individuals appear to be the most appropriate cultural brokers, they can also (a) bias the results in that, fearing stigma, the participant declines to share information, or, potentially worse, (b) spread sensitive and private information disclosed by the participant into the community [5, 38, 39]. Almost half (141, 49%) included at least one special subpopulation (e.g., LGBTQ, pregnant women, people with disabilities, children under 5years old, adults over 65years old). Ethics of research in refugee populations. Thela L, Tomita A, Maharaj V, Mhlongo M, Burns JK. Our findings highlight the need for a current understanding of ethics and the application of ethics principles in refugee health investigations. ); (b) primary topic was health-related; and (c) investigators directly interacted with the refugees included in the analysis (primary data sources). Incentives were either non-monetary (11%), such as clothing or food, or monetary (89%). 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. 2013;14:13. In conclusion, our analysis identified a number of complex ethical challenges in conducting refugee health-related investigations and found evidence of room for improvement in adherence to ethics principles and their documentation in resulting publications. Article Two (0.7%) stated no review was conducted: one was an audit, and therefore, according to the authors, did not meet the criteria for an ethics review; one was a students thesis, and according to the authors, ethics approvals were neither required nor sought for student theses at their institution [15, 16]. Chronic health conditions, physical activity and dietary behaviors of Bhutanese refugees: a Houston-based needs assessment. Provided by the Springer Nature SharedIt content-sharing initiative. Transcult Psychiatry. Google Scholar. Such engagement can help to bridge cultural differences and establish trust within the community, as well as provide an outlet for the community to voice their concerns and thoughts [9, 38]. Our objective was to describe the breadth of application of ethics principles and identify possible gaps in their implementation, potentially stemming from the lack of a guiding research ethics framework in the field of refugee health. Similarly, there is also the risk of confusing investigations, particularly those with a tangible intervention, with humanitarian aid. BMC Med. Additionally, in the event that human biologic specimens are collected, ownership of these specimens should be discussed with respect for cultural and religious beliefs about the human body during the consent process. The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Springer Nature. Scientifically valid investigations with ethically collected data provide the foundation for policy and interventions, and therefore, investigators should make the fullest effort to ensure respect and safety for refugee participants and their communities. J Human Rights Practice. Global Trends Forced Displacement in 2018. 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. Common topics included mental health (48%) and healthcare access (8%). 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. After data abstraction was complete, 25% of each abstractors articles were randomly selected for a second review by one of the other reviewers to check for data irregularities or mistakes. We did find two key points: (1) review of the investigation protocols by refugees themselves was reported infrequently (only 8%), and (2) post-investigation support or engagement for both the participants and their community was reported minimally (although the authors recognize the potential for omission of these in manuscripts submitted for publication, if not main focus of the investigation). However, even ethics committee members inside the country of investigation may be unfamiliar with refugee needs, circumstances, and vulnerabilities and therefore not fully able to represent the interests of refugees displaced from another country. 2004;82(10):7717. Measles, mumps, rubella, and varicella seroprevalence in refugees in Germany in 2015. Most importantly, we have described the unique characteristics of refugee populations that suggest a need for greater emphasis on particular ethics principles and warrant the development of a refugee-specific ethics framework to aid investigators in the field. 2006;11(3):32938. Moreover, there is still likely room for improvements to the investigation and review processes regarding ethics within the field of refugee health research. A comparison of DSM-5 and DSM-IV diagnostic criteria for posttraumatic stress disorder in traumatized refugees. Revised Common Rule. PubMed Central vary, ethics considerations may have been omitted from the published manuscripts. J Trauma Stress. Retrieved from https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html. Four authors, abstracted data between July 1, 2018, and September 30, 2018. Given that similar ethical procedures are followed for both research and non-research data collections, and many publications did not distinguish between the two, both types of investigations were included. Search terms were kept broad to increase the likelihood of identifying relevant publications. Review articles, systematic reviews, meta-analyses, notes from the field, letters to the editor, methodological papers, and policy papers were also excluded. 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]. 2017. https://www.hhs.gov/ohrp/regulations-and-policy/regulations/finalized-revisions-common-rule/index.html. Folate supplementation to prevent birth abnormalities: evaluating a community-based participatory action plan for refugees and migrant workers on the Thailand-Myanmar border. Additionally, if implemented inappropriately, incentives can contribute to inequality between participants and non-participants. Cambridge: Cambridge University Press; 2018. p. 6878. Trimble JE, Fisher CB. Of the 197 investigations with interpreters, 46 (23%) used native speakers from the community of interest. Perry KH. The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request. Transparency after the analysis is also key and includes presenting the findings to both the participants and the wider refugee community [50]. Public health ethics theory: review and path to convergence. To mitigate these risks, one could seek community input to assess the acceptability of using interpreters (which could vary by health topic and setting) from the community, and if deemed unacceptable, hire bilingual individuals from outside the community when possible. We reviewed reports of refugee health-related investigations published in English from January 2015 to September 2018 available in PubMed. Salt RJ, Costantino ME, Dotson EL, Paper BM. Ethics. Best practices post-investigation may include empowering community health workers through trainings during or after the investigation; employing local refugees to help with the investigation, thereby providing them with job skills that will be useful post-investigation (this would often happen in the pre-investigation stage with the benefits extending into post-investigation); providing the means to sustain health education classes for the community; and providing resources to continue an effective intervention (or if applicable, providing the intervention to the wider community) [6, 40, 50].