Kanga-Parabia Anaita, Archibald Alison D, Biggs Laura J, Lewis Sharon, Tutty Erin, Dawson-McClaren Belinda
Murdoch Children's Research Institute, Melbourne, VIC, Australia.
University of Melbourne, Melbourne, VIC, Australia.
Eur J Hum Genet. 2025 Jan 4. doi: 10.1038/s41431-024-01748-y.
People from refugee and migrant backgrounds often face poor experiences and outcomes in healthcare, and genetic healthcare is no exception. Understanding whether and how these health inequities manifest is an important step towards equitable perinatal genetic screening for genetic or chromosomal conditions (offered preconception, prenatally, or during the newborn period). A scoping review was conducted to review international evidence of perceptions and experiences of perinatal genetic screening for people from migrant and refugee backgrounds. Search strategies were applied to Medline, Embase, and CINAHL databases to identify articles meeting eligibility criteria. Evidence was synthesised using descriptive and content analysis, with theoretical frameworks of proportionate universality and relational autonomy used to interpret findings. Of 11,046 unique articles identified, twenty-six met inclusion criteria and underwent full-text review. Most studies were set in Western countries, and participants were primarily born in Asia, South America, or Africa. Studies indicated varying awareness, knowledge, attitudes, and uptake of screening. Several studies highlighted a lack of adequate in-language resources, the use of concepts that were unrecognised in particular communities, and poor interactions with healthcare providers. Strategies to address the above issues included person-centred counselling, increased consultation time, access to interpreters, and training for relevant providers. Other recommendations included addressing structural, financial, and geographical barriers to improve access to screening and associated care. Whilst additional research is required, we propose evidence and theory-informed strategies to improve perinatal genetic screening services for people from migrant and refugee backgrounds.
来自难民和移民背景的人在医疗保健方面往往面临糟糕的体验和结果，基因医疗保健也不例外。了解这些健康不平等现象是否以及如何表现出来，是朝着对基因或染色体疾病进行公平的围产期基因筛查（在孕前、产前或新生儿期提供）迈出的重要一步。进行了一项范围综述，以回顾关于移民和难民背景人群围产期基因筛查的认知和体验的国际证据。将检索策略应用于Medline、Embase和CINAHL数据库，以识别符合纳入标准的文章。使用描述性和内容分析法对证据进行综合，并运用相称普遍性和关系自主性的理论框架来解释研究结果。在识别出的11046篇独特文章中，26篇符合纳入标准并进行了全文审查。大多数研究是在西方国家进行的，参与者主要出生在亚洲、南美洲或非洲。研究表明，人们对筛查的认知、知识、态度和接受程度各不相同。几项研究强调缺乏足够的同语种资源、使用特定社区无法理解的概念以及与医疗服务提供者的互动不佳。解决上述问题的策略包括以患者为中心的咨询、增加咨询时间、提供口译服务以及对相关医疗服务提供者进行培训。其他建议包括消除结构、财务和地理障碍，以改善筛查及相关护理的可及性。虽然还需要更多研究，但我们提出基于证据和理论的策略，以改善针对移民和难民背景人群的围产期基因筛查服务。
