Google Scholar. Jacobsen K, Landau LB. Correspondence to For instance, many government agencies and nongovernmental organizations collect program data intended for internal use that are later used by investigators. 2016;53(5):63053. 2017;54(5-6):71532. 2017. https://www.hhs.gov/ohrp/regulations-and-policy/regulations/finalized-revisions-common-rule/index.html. 2016;11(8):e0160222. Providing incentives, also referred to as reimbursements, was uncommon (66, 23%). Many refugees have never participated in investigations before and may not understand the concept of research or the investigation process [13]. AD, JW, and PS contributed to the refining of the data collection tool, data collection, and manuscript development/revision. Thirty-seven articles did not mention whether consent was obtained; of these, many were conducted as part of routine screening examinations at reception centers or during emergency or outbreak scenarios. This assessment sets the stage for a more in-depth and comprehensive look at ethics concepts and their applications. 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. NM, NC, DB, and LO contributed to the study design and development of the data abstraction tool, provided insights into final conclusions, contributed to manuscript development/revisions, and served as subject matter experts. 2017;14(2):125. CAS Eur J Pub Health. Perry KH. Search terms were kept broad to increase the likelihood of identifying relevant publications. Improving access to mental health services for racialized immigrants, refugees, and non-status people living with HIV/AIDS. Article on topics such as cultural competency and ethics. Results indicated 33% of investigations were conducted before resettlement, during the displacement period (68% of these were in refugee camps). Privacy Feedback from the community through key informant interviews or focus groups can also shape investigation protocols and procedures to add cultural competence. Approximately 13% mentioned post-investigation support to the participants or community (57% of these were post-resettlement investigations), and 13% of the 39 interventional investigations provided the intervention to the wider community after the investigation concluded. 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. Manage cookies/Do not sell my data we use in the preference centre. Additionally, this analysis was specific to refugees and the search criteria excluded other migrant study populations, such as asylees (when the article was solely focused on non-refugee migrants; some articles included both refugees and other migrants, and these papers were included in the current analysis). Community members helped to recruit participants in 50% (n=145) of the investigations. Beyond informed consent. 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. The analysis was also restricted to those with the words refugee or refugees in the title, which may have excluded some articles that did not mention the study population in the title but would have otherwise met the inclusion criteria. 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).

Each article was reviewed by one data abstractor. J Bodyw Mov Ther. Finally, 19% (n=55) of the articles stated that data were stored without identifiers, and many others indicated that data were stored securely using encrypted software, locked cabinet files, or secure servers. Transcult Psychiatry. Google Scholar.

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). unm edu sust program november archives studies start

Alemi Q, James S, Montgomery S. Contextualizing afghan refugee views of depression through narratives of trauma, resettlement stress, and coping.

Ethics, vulnerability, and speakers of other languages: how university IRBs (do not) speak to research involving refugee participants. Lee LM. population studies demography waikato research social digital tactics customers target right welcome For the purposes of our discussion, we divided the investigational process into three phasespre-investigation, investigation, and post-investigationto discuss ethical challenges and potential best practices the investigator can undertake. Disasters. Approximately 57% of authors discussed measures undertaken to ensure transparency of the investigation within the community, including holding pre-investigation informational meetings; and 40% undertook measures to establish participant and community trust, such as working through trusted organizations or community leaders. The authors declare that they have no competing interests. Investigators, in addition to maintaining the highest level of scientific integrity and rigor, have a duty to act ethically. Furthermore, refugees often have disparate risks of disease. Bull World Health Organ. Lastly, it is important to consider ensuring reasonable availability of an intervention that is demonstrated to be effective (i.e., ensuring the intervention is available free or at a reasonable cost to the community in which it was tested) [50]. 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. To ensure investigations are conducted with respect for and protection of the participating individuals and community from the onset, ethical considerations should be at the forefront throughout the pre-investigation phase, during which questions are refined and methodological details are decided (e.g., location of investigation, content and logistics of consent, appropriate ethical and community approvals, mechanisms for recruitment of participants). Issues Ment Health Nurs. Yet for those unfamiliar with investigations, these distinctions can be confusing and appear unfair, as when only a small portion of the population receives investigational hygiene products or nutritional supplements. Acarturk C, Konuk E, Cetinkaya M, Senay I, Sijbrandij M, Gulen B, et al. Sometimes participants move before investigation results are translated into permanent interventions; therefore, investigators should identify ways to provide immediate benefits to participants who may not see the investigations long-term impact [7, 49]. Articles included in review and additional characteristics. Chapter For instance, the US human subjects research regulations (federal policy for protection of human research subjects, which defines the processes for ethics review and approval) does not include refugees as a vulnerable population [11]. Complex migration patterns and poor access to healthcare often result in physical and mental health concerns throughout all stages of the refugee experience, including flight, asylum, and resettlement or return to their home country. ), and 20 (7%) investigations provided health education to the community. When monetary incentives were used, approximately one-fifth (20%) exceeded 30 USD, 61% were less than or equal to 30 USD, and 19% did not state the amount provided.

mozote Therefore, prior community engagement may be needed to establish trust and ameliorate these feelings [5, 39]. 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]. AIDS Behav. Eur Psychiatry. J Immigr Minor Health. The investigators responsibility extends beyond securing an ethics committee approval, especially given that refugees are not always included as a vulnerable population (populations identified in need of enhanced protections), to ensuring protection of the welfare and dignity of participants (and documentation of that protection) [11]. All investigations should have both practical and actionable outcomes that would not be possible without the investigation [6, 13]. Nonetheless, ethical dilemmas can arise in secondary data analyses. 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. Quantitative variables were analyzed using descriptive statistics. The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request. CAS Am J Public Health. Pittaway E, Bartolomei L, Hugman R. Stop stealing our stories: the ethics of research with vulnerable groups. Division of Global Migration and Quarantine, Centers for Disease Control and Prevention, 1600 Clifton Road, MS EO3, Atlanta, GA, 30333, USA, Emma E. Seagle,Amanda J. Dam,Priti P. Shah,Jessica L. Webster,Nicole J. Cohen&Nina N. Marano, CDC/CSTE Applied Epidemiology Fellowship Program, Atlanta, Georgia, USA, Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee, USA, Emma E. Seagle,Priti P. Shah&Jessica L. Webster, Eagle Global Scientific, LLC, Atlanta, Georgia, USA, Office of Scientific Integrity, Office of Science, Centers for Disease Control and Prevention, Atlanta, GA, USA, You can also search for this author in 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. Lesbian, gay, bisexual, transgender, queer. By using this website, you agree to our PubMed Central 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. We conducted a preliminary assessment of recent published literature to understand the application of ethics principles reported in investigations involving refugees in recent years and propose considerations and potential best practices to protect the welfare of refugees in research or investigation contexts. Article Managing displacement: refugees and the politics of humanitarianism. 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]. 2016;20(Suppl 3):41725. 2010;2(2):22951. About two-thirds (162, 65%) of the investigations who stated they obtained informed consent mentioned translating the consent. PubMed Jablonka A, Happle C, Grote U, Schleenvoigt BT, Hampel A, Dopfer C, et al. 2012;40(1):8598. 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. Therefore, we have drawn conclusions only in regard to the procedures and protocols investigators reported, and argue for the importance of increased reporting of ethics applications. Transcult Psychiatry. Tohme J, Egan JE, Stall R, Wagner G, Mokhbat J. HIV prevalence and demographic determinants of unprotected anal sex and HIV testing among male refugees who have sex with men in Beirut, Lebanon. Non-monetary or small monetary incentives (<5 USD) were typically provided inside refugee camps, whereas larger monetary incentives were provided post-resettlement. Characteristics of the included investigations are shown in Tables1 and 2 (and Additional File 1). Siriwardhana C, Adikari A, Jayaweera K, Sumathipala A. Google Scholar. It would also require a degree of specificity to refugee populations that accounts for their heightened vulnerability and the characteristics that contribute to this vulnerability that make refugees unlike other individuals (e.g., limited political protections of stateless individuals, living conditions inside refugee camps, prior torture or trauma, economic instability, population mobility). Ethics is far from an exact science, and emphasis on specific considerations and applications varies with population and setting. statement and However, two of these 15 included language suggesting an ethics review (one discussed the protocol was reviewed by the hospital administration, which could include an ethics board; one discussed that a review was conducted in a prior investigation with the same sample population, but it was unknown if the prior review accounted for procedures conducted in the included investigation) [17, 18]. Engage with stakeholders, community leaders, and community members before and throughout the investigation. 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). 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]. Accessed 19 April 2019. Seedat S, Pienaar WP, Williams D, Stein DJ. Participation may involve disclosing characteristics that could increase risks of stigma or place an individual in danger if revealed to other community members (e.g., rape, sexual identity, mental illness, sexually transmitted infections) [5, 7]. Infection. 2001;91(11):177682. Ultimately, many of the basic principles discussed above should also be applied in non-refugee public health investigations. Publications often did not document ethical considerations, and therefore, we encountered difficulties discerning which principles were followed. 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. For the 25% that underwent a second review, inter-reviewer agreement was high: average agreement rate per variable: 99.2%, standard deviation: 1.7%, range: 93.4 to 100%; three quarters of the variables had 100% agreement. Conflict and Health Glob Public Health. 2009;3:7. 2011;17(10):899912. 2010;10(2):657. The "reasonable person" standard for research informed consent. 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]. *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. However, one should also consider the format and type of consent to ensure complete understanding and respect. 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. As we reviewed those articles, we noted additional ethics-related scenarios raised or addressed, and we added a question to the data abstraction tool. Nickerson A, Schick M, Schnyder U, Bryant RA, Morina N. Comorbidity of posttraumatic stress disorder and depression in tortured, treatment-seeking refugees. 2006;1(3):26477. Such reviewers are often better positioned to weigh the risks and judge the value of the investigation and determine the cultural feasibility and appropriateness of the methods [13]. It is also important to acknowledge that differing approval processes between research and non-research investigations may have affected the application of ethical standards.

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. Most of the investigations we reviewed obtained written consent, but not all addressed language barriers, literacy levels, languages that do not have a true written form, and cultural normalcy (e.g., in some cultures, verbal consent holds a higher value) [13]. McHenry MS, Umoren R, Dixit A, Holliday R, Litzelman D. Exploring healthcare perspectives of Burmese Chin refugees. These reviewers may also play the role of ethics committees in locations that lack official ethics committees, such as conflict settings. Trimble JE, Fisher CB. Use of incentives needs to be placed in context to understand the amount of influence they may have. Google Scholar. document refugee travel nsf identification card ids issued alternative access dhs credential twic worker transportation Hagaman AK, Sivilli TI, Ao T, Blanton C, Ellis H, Lopes Cardozo B, et al. Quach A, Laemmle-Ruff IL, Polizzi T, Paxton GA. HHS. 2006;25(1):7584. Public health ethics theory: review and path to convergence. PubMed As our analysis only accounted for actions reported within the published literature, we acknowledge our results are likely an underestimation, particularly of post-investigation activities. Leaning J. Such non-routine security measures can unintentionally produce undue fear and the perception of coercion, particularly among refugees previously mistreated by authority figures. 2018. https://www.unhcr.org/globaltrends2018/. Our review of the literature reveals promising adherence to basic ethics principles for obtaining consent, a cornerstone to protecting participants autonomy in all public health and biomedical investigations [47]. Information collected included characteristics of each investigation (year published, journal type, investigators home country, country in which the investigation was undertaken, type of institution, type of funding, investigation design, and primary health topic), as well as specific data points related to ethics considerations and methodological procedures. 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). Odwazny LM, Berkman BE. PubMed Central https://doi.org/10.1186/s13031-020-00283-z, DOI: https://doi.org/10.1186/s13031-020-00283-z. Revised Common Rule. The dual imperative in refugee research: some methodological and ethical considerations in social science research on forced migration. For example, the content and format of consent can meet participants information needs, or location of interviews can show respect for the community [9]. mozote We examined the recently published literature to understand the application of ethics principles in investigations involving refugees. Salt RJ, Costantino ME, Dotson EL, Paper BM. Terms and Conditions, 2018;16(1):40. ); (b) primary topic was health-related; and (c) investigators directly interacted with the refugees included in the analysis (primary data sources). 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]. Empower participants by ensuring they understand that participation is voluntary. Part of

For instance, in our review, incentive type and value ranged greatly. 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]. 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%). Given that not all journals require publication of all ethics applications we assessed, and publication requirements (word count, structure, reporting of post-investigation activities, etc.) Chronic health conditions, physical activity and dietary behaviors of Bhutanese refugees: a Houston-based needs assessment. Ethics of research in refugee populations. document travel nsf refugee ids identification twic alternative access J Health Care Poor Underserved. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Of these 264, 248 (94%) mentioned an ethics review (1% none, 5% unknown). The unique challenges refugees face (displacement, limited political protections, economic hardship) can make them especially vulnerable to harm, burden, or undue influence. 2022 BioMed Central Ltd unless otherwise stated. Cultural considerations were generally limited to gender and religious norms, and 13% mentioned providing some form of post-investigation support. document travel nsf refugee ids identification twic alternative access The challenges of the health care providers in refugee settings: a systematic review. Investigators also need to be knowledgeable about the refugee experience to prevent undue influence [5]. Similarly, there is also the risk of confusing investigations, particularly those with a tangible intervention, with humanitarian aid. 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]. PubMed Central Complex challenges are present throughout the refugees journey and may vary depending on whether the refugee is displaced (either internally or in a country of asylum) or has been formally resettled in a country that has granted permanent settlement. 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]. AIDS Patient Care STDs. 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. This article has been updated to correct additional file 1. It also minimizes risks not often identified by an ethics committee unfamiliar with the local culture [38, 43]. 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. Zwi AB, Grove NJ, MacKenzie C, Pittaway E, Zion D, Silove D, et al. 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). 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]. Common topics included mental health (48%) and healthcare access (8%). 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. Nina N. Marano. 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]. To keep the number of publications for review manageable, the PubMed search was restricted to these keywords within the title. 2016;23(4):1517. Ethics. It is also important to note that although community engagement is initiated pre-investigation, significant benefit comes from its continuation throughout the investigation.

Tohme J, Egan JE, Friedman MR, Stall R. Psycho-social correlates of condom use and HIV testing among MSM refugees in Beirut, Lebanon. Ellis BH, Kia-Keating M, Yusuf SA, Lincoln A, Nur A. Thus additional review by members of the refugee community in which the investigation is occurring may prove most insightful. Am J Bioeth. Most authors (91% of all articles included, n=262) discussed community stakeholder involvement, with common stakeholders being health clinics or hospitals, community members, and local nongovernmental organizations. Our findings highlight the need for a current understanding of ethics and the application of ethics principles in refugee health investigations. 2015;45:90100. Some investigations used homogenous focus groups based on sex or other demographic characteristics to create a safe space to protect participant identities [32, 33]; one investigation allowed individuals to opt for an individual interview over a focus group [34]. Such scenarios should be explored in future reviews. Additionally, although written consent remains the norm, it can prove challenging in refugee investigations. This engagement helps to create trust, transparency, and collaboration. Google Scholar. 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. Public health investigations, including research, in refugee populations are necessary to inform evidence-based interventions and care. Practical and ethical issues in conducting health research with refugees. PubMed 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. However, given the high agreement rate on articles for which we did a second review, the number of data collection errors is likely low. 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.

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