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. Psychol Med. PubMed Central Ultimately, tension exists between the need for data to inform evidence-based practices and the need to protect vulnerable refugee populations from research-related risks [4]. The majority (87%) of investigations obtained consent. An established framework that identifies innovative solutions to protect refugees while ensuring scientific validity would aid in improving future investigations. Glob Public Health. Additional concerns arise in areas that may lack the capacity to provide appropriate technical guidance and oversight, such as in conflict settings [3]. Ethics of research in refugee populations. Many refugees have never participated in investigations before and may not understand the concept of research or the investigation process [13]. Practical and ethical issues in conducting health research with refugees. The author(s) read and approved the final manuscript. 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. Most of the investigators were from the United States (90, 31%), Australia (43, 15%), or Germany (16, 6%) with most investigations conducted by academic institutions (212, 74%). Our analysis was subject to several limitations. Bhutta ZA. The risks of over-researching are particularly relevant in mental health investigations, which may pose a risk of re-traumatization. The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request. To provide a supporting structure for such a framework, we propose three key areas: engage, educate, and empower. Early community and stakeholder engagement is critical during the pre-investigation phase. Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. These principles become even more important given acute survival needs (e.g., food, shelter, clean water), risks of re-traumatization, and stigmatization of certain conditions or situations in the surrounding community (e.g., mental health issues, sexual assault) [3, 4, 6, 7]. The unique challenges refugees face (displacement, limited political protections, economic hardship) can make them especially vulnerable to harm, burden, or undue influence. For 24 (8%) of all of the articles included, the investigation team was comprised of only investigators from outside the country of investigation. Additionally, approximately 68% (197/288) mentioned the use of an interpreter at any point during the investigation. Additionally, to only conduct research in non-refugee populations, even those with similar demographic characteristics, could provide an inaccurate and inadequate representation [3, 12, 13]. Acarturk C, Konuk E, Cetinkaya M, Senay I, Sijbrandij M, Gulen B, et al. The handbook of ethical research with ethnocultural populations and communities. Overall, the investigations impact should be carefully considered to ensure the findings can effectively benefit the population; and especially in emergency response settings, new investigations should be initiated only when necessary data cannot be obtained in other ways [11]. Lee LM. Such iterations remind refugees about the research procedures and that their participation is voluntary, which can help reduce feelings of pressure to complete the investigation [5]. J Community Health Nurs. Counting the cost of Afrophobia: post-migration adaptation and mental health challenges of African refugees in South Africa. vary, ethics considerations may have been omitted from the published manuscripts. Kass NE. J Human Rights Practice. London: Sage; 2006. For example, the content and format of consent can meet participants information needs, or location of interviews can show respect for the community [9]. In: D HB, L WO, Dawson A, Saenz C, Reis A, Bolan G, editors. Few articles mentioned the use of iterative consent, a process by which individuals consent at each phase of the investigation. "You are not alone" strategies for addressing mental health and health promotion with a refugee women's sewing group. Thousand Oaks: Sage Publications; 2009. AIDS Behav. We piloted the tool using 30 articles to be included in the analysis. Anyone you share the following link with will be able to read this content: Sorry, a shareable link is not currently available for this article. madden claire lcsw psychiatry behavioral health worker geriatrics outpatient therapist integrated social adult 2006;25(1):7584. Minneapolis: University of Minnesota Press; 2000. 2010;2(2):22951. PubMed Vancouver: Simon Fraser University; 2013. Therefore, the manner in which these principles are applied, and the emphasis given to certain principles, should be specific to the refugees individual circumstances. Furthermore, the principles outlined in the framework could provide guidance and context to assist ethics committee reviewers in assessing the ethical integrity of proposals, particularly for reviewers unfamiliar with refugee health. Kavukcu N, Altintas KH. Ao T, Shetty S, Sivilli T, Blanton C, Ellis H, Geltman PL, et al. Nonetheless, ethical dilemmas can arise in secondary data analyses. However, in at least one case, resources were available to continue health programs or provide interventions to participants or the community beyond the investigation [37]. Google Scholar. Additionally, low literacy (including health literacy) levels in some refugees can result in communication barriers and low understanding or misinterpretation of the investigation process [6, 9]. Article Ethics. Initial search results in PubMed yielded 912 articles, of which 288 (32%) were included in the analysis following the second stage of selection (list of articles included can be found in Additional File 1). Future in-depth assessments should focus on these populations. Ultimately, strict privacy and confidentiality measures help to prevent further emotional or physical harm. For the remaining 75% of the articles, each record was scanned for any missing data points or inaccuracies (e.g., two answers contradicting each other). Given the transient nature of refugee populations, the timing of such reciprocity is key. PubMed PubMed Central Nyboe L, Bentholm A, Gyllensten AL. In: Townes D, editor. Retrieved from https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html. Disasters.

Ethics committee reviewers may also benefit from education to ensure they are aware of the complex vulnerabilities of refugee populations. These factors may contribute to health disparities among refugee populations and between refugees and non-refugees, which underscore the importance of conducting research specific to refugees and ensuring their representation in analyses (i.e., ensuring refugees are not excluded from analyses solely due to their vulnerability) [2]. The addition of requirements by funding agencies and journals to outline and document procedures used may also help to ensure adherence to ethical guidelines. 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. Overall best practices for community engagement include pre-investigation meetings with community leaders and members [6]. Perry KH. 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]. Investigators also need to be knowledgeable about the refugee experience to prevent undue influence [5]. Ben Farhat J, Blanchet K, Juul Bjertrup P, Veizis A, Perrin C, Coulborn RM, et al. 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]. Privacy Al-Nuaimi S, Aldandashi S, Easa AKS, Saqqur M. Psychiatric morbidity among physically injured Syrian refugees in Turkey. 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. The best practices we identified both in our literature review and in developing the methodology for our literature review may help lead to developing a framework. Overall, 50% (n=1543) mentioned undertaking privacy measures, which included conducting the investigation on a sensitive topic in a school instead of a health clinic (i.e., a more neutral location) to prevent non-participants from associating the participants with the sensitive health topic and maintain the anonymity of the participants [27] and providing the opportunity to decline voice recording [29,30,31]. The "reasonable person" standard for research informed consent. The refugee context is ever-changing and therefore, the ethics principles followed and frameworks used to guide such investigations should be frequently examined and updated. 2012;40(1):8598.

Jacobsen K, Landau LB. PubMed 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]. From complicity to advocacy: the necessity of refugee research. For instance, many government agencies and nongovernmental organizations collect program data intended for internal use that are later used by investigators. Confl Health. 2003;27(3):185206. For instance, this could occur if there is confusion between mandatory medical screenings (or associated required disease treatments for resettlement) and voluntary screenings (or voluntarry treatments) for investigative purposes. Reasons for exclusion (n=624) included: the article was a literature or systematic review, commentary, or meta-analysis (328/624, 53%); no interaction between investigators and participants (135/624, 22%); not health-related (63/624, 10%); refugees were not the subjects (55/624, 9%); and other (e.g., methodological, policy; 43/624, 7%) (Fig. Health in humanitarian emergencies: principles and practice for public health and healthcare practitioners. Bioethics. Transparency and open communication with the community also ensure the investigation addresses information gaps in addition to the priorities and interests of the investigator [11]. PubMed We reviewed reports of refugee health-related investigations published in English from January 2015 to September 2018 available in PubMed. The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Delemos JL. Google Scholar. 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). 2016;46(12):258393. Transparency after the analysis is also key and includes presenting the findings to both the participants and the wider refugee community [50]. It also minimizes risks not often identified by an ethics committee unfamiliar with the local culture [38, 43]. As in the pre-investigation phase, cultural practices should be considered when choosing methods for ensuring privacy and confidentiality [38]. We conducted a preliminary review of refugee health literature (research and non-research data collections) published from 2015 through 2018 available in PubMed.

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. Approximately 33% (n=96) of investigations were conducted during displacement (68% of these were in refugee camps), and most were cross-sectional by design (234, 81%). The dual imperative in refugee research: some methodological and ethical considerations in social science research on forced migration. Int J Environ Res Public Health. PLoS One. Gabriel PS. 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. nuclear physics birmingham research centre education collision ion document travel nsf refugee ids identification twic alternative access



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