Abstract Background Research around humanitarian crises, aid delivery, and the impact of these crises on health and well-being has expanded dramatically. Ethical issues around these topics have recently received more attention. We conducted a systematic literature review to synthesize the lessons learned regarding the ethics of research in humanitarian crises.
Methods We conducted a systematic review using the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) guidelines to identify articles regarding the ethics of research in humanitarian contexts between January 1, 1997 and September 1, 2019. We analyzed the articles to extract key themes and develop an agenda for future research.
Results We identified 52 articles that matched our inclusion criteria. We categorized the article data into five categories of analysis: 32 were expert statements, 18 were case studies, 11 contained original research, eight were literature reviews and three were book chapters. All included articles were published in English. Using a step-wise qualitative analysis, we identified 10 major themes that encompassed these concepts and points. These major themes were: ethics review process (21 articles, [40.38%]); community engagement (15 articles [28.85%]); the dual imperative, or necessity that research be both academically sound and policy driven, clinical trials in the humanitarian setting (13 articles for each, [25.0%)]; informed consent (10 articles [19.23%]); cultural considerations (6 articles, [11.54%]); risks to researchers (5 articles, [9.62%]); child participation (4 articles [7.69%]); and finally mental health, and data ownership (2 articles for each [3.85%]).
Conclusions Interest in the ethics of studying humanitarian crises has been dramatically increasing in recent years. While key concepts within all research settings such as beneficence, justice and respect for persons are crucially relevant, there are considerations unique to the humanitarian context. The particular vulnerabilities of conflict-affected populations, the contextual challenges of working in humanitarian settings, and the need for ensuring strong community engagement at all levels make this area of research particularly challenging. Humanitarian crises are prevalent throughout the globe, and studying them with the utmost ethical forethought is critical to maintaining sound research principles and ethical standards.
Background Mental illness is common amongst refugees and can differ depending on cultural background, experiences, and access to care. Given significant risk factors including high rates of exposure to sexual violence and different barriers to seeking adequate health care, refugee mothers are uniquely at risk.
Methods In 2012–2013, surveys were administered to a convenience sample of Somali and systematic random sample of Iraqi refugee mothers to identify differences in mental health between the populations. The Hopkins Symptom Checklist (HSCL-25) identified respondents with major depression and emotional distress. We used multivariable logistic regression to compare these populations and identify variables associated with mental illness.
Results 198 Somali and 219 Iraqi women were included. Most Iraqis (60.27%) had not seen a mental health provider while most Somalis (62.63%) had. On average, Iraqis scored 0.34 points higher (worse) on the HSCL-25 compared to Somalis (95% CI, 0.22–0.46; P < 0.001). Iraqis were more likely to have major depression (OR = 2.62, 95% CI 1.50–4.57, P = 0.001). On multivariable analysis accounting for the country of origin, those who saw a mental health provider were less likely to have major depression or emotional distress (OR 0.42, 95% CI 0.22–0.82, P = 0.011; OR 0.43, 95% CI 0.22–0.85, P = 0.015, respectively).
Discussion Iraqi refugee mothers were more likely to have depression compared to Somalis. Refugee mothers who saw a mental health provider were less likely to have depression or emotional distress. These results suggest the cultural background and access to health services among refugee mothers' impact on mental health.
Although resilience has been identified as an important mediator of negative mental health outcomes among refugee populations, there are few culturally specific measures of resilience among such communities and no such measure among Somalis. In this study we aimed to develop a culturally appropriate measure of resilience specific to Somali adults in San Diego, as an example of a vulnerable refugee community. A community-based, exploratory sequential mixed method investigation was conducted via focus group discussions ( n = 4), cognitive interviews ( n = 4), and iterative survey adaptation. Somali refugee adults in San Diego ( N = 183) were surveyed with this novel scale, a standardized measure of resilience, and assessments of depression, anxiety, and PTSD. Results were analyzed via correlation coefficients and multivariate linear regression modeling. Qualitative findings supported the inclusion of items addressing both barriers and facilitators of good mental health, which resulted in the development of the Somali Distress and Resilience Survey (SDRS). Linear regression analysis revealed that the SDRS demonstrated significant associations with symptoms of depression and PTSD, while the standardized measure of resilience did not demonstrate associations with any of the mental health outcomes assessed. The SDRS identified obstacles to resilience among Somali individuals, placing them at risk of developing negative mental health outcomes. Our novel measure also demonstrated more robust relationships with these outcomes than a standardized measure of resilience, suggesting greater utility of the adapted scale. However, the SDRS's development raises larger questions about the limitations of developing and comprehensively evaluating novel resilience measures in a community-based setting.
Germline mutations in CDKN2A are frequently identified among melanoma kindreds and are associated with increased atypical nevus counts. However, a clear relationship between pathogenic CDKN2A mutation carriage and other nevus phenotypes including counts of common acquired nevi has not yet been established. Using data from GenoMEL, we investigated the relationships between CDKN2A mutation carriage and 2-mm, 5-mm, and atypical nevus counts among blood-related members of melanoma families. Compared with individuals without a pathogenic mutation, those who carried one had an overall higher prevalence of atypical (odds ratio = 1.64; 95% confidence interval = 1.18-2.28) nevi but not 2-mm nevi (odds ratio = 1.06; 95% confidence interval = 0.92-1.21) or 5-mm nevi (odds ratio = 1.26; 95% confidence interval = 0.94-1.70). Stratification by case status showed more pronounced positive associations among non-case family members, who were nearly three times (odds ratio = 2.91; 95% confidence interval = 1.75-4.82) as likely to exhibit nevus counts at or above the median in all three nevus categories simultaneously when harboring a pathogenic mutation (vs. not harboring one). 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