Allford Anna, Qureshi Nadeem, Barwell Julian, Lewis Celine, Kai Joe
Genetic Alliance UK, London, UK.
Division of Primary Care, University of Nottingham, Nottingham, UK.
Eur J Hum Genet. 2014 Jul;22(7):866-74. doi: 10.1038/ejhg.2013.257. Epub 2013 Nov 20.
Ethnic disparities in use of cancer genetics services raise concerns about equitable opportunity to benefit from familial cancer risk assessment, improved survival and quality of life. This paper considers available research to explore what may hinder or facilitate minority ethnic access to cancer genetics services. We sought to inform service development for people of South Asian, African or Irish origin at risk of familial breast, ovarian, colorectal and prostate cancers in the UK. Relevant studies from the UK, North America and Australasia were identified from six electronic research databases. Current evidence is limited but suggests low awareness and understanding of familial cancer risk among minority ethnic communities studied. Socio-cultural variations in beliefs, notably stigma about cancer or inherited risk of cancer, are identified. These factors may affect seeking of advice from providers and disparities in referral. Achieving effective cross-cultural communication in the complex contexts of both cancer and genetics counselling, whether between individuals and providers, when mediated by third party interpreters, or within families, pose further challenges. Some promising experience of facilitating minority ethnic access has been gained by introduction of culturally sensitive provider and counselling initiatives, and by enabling patient self-referral. However, further research to inform and assess these interventions, and others that address the range of challenges identified for cancer genetics services are needed. This should be based on a more comprehensive understanding of what happens at differing points of access and interaction at community, cancer care and genetic service levels.
癌症遗传学服务使用方面的种族差异引发了人们对于公平获取家族性癌症风险评估、提高生存率及改善生活质量机会的担忧。本文审视了现有研究，以探究哪些因素可能阻碍或促进少数族裔获取癌症遗传学服务。我们旨在为英国有家族性乳腺癌、卵巢癌、结直肠癌和前列腺癌风险的南亚裔、非裔或爱尔兰裔人群的服务发展提供参考。通过六个电子研究数据库检索了来自英国、北美和澳大拉西亚的相关研究。目前的证据有限，但表明在所研究的少数族裔社区中，对家族性癌症风险的认识和理解较低。已确定了信仰方面的社会文化差异，尤其是对癌症或癌症遗传风险的污名化。这些因素可能影响向医疗服务提供者寻求建议以及转诊方面的差异。在癌症和遗传学咨询的复杂背景下实现有效的跨文化沟通，无论是在个人与医疗服务提供者之间、通过第三方口译员进行调解时，还是在家庭内部，都带来了进一步的挑战。通过引入具有文化敏感性的医疗服务提供者和咨询举措，以及实现患者自我转诊，在促进少数族裔获取服务方面已取得了一些有前景的经验。然而，需要进一步开展研究，为这些干预措施及其他应对癌症遗传学服务所面临一系列挑战的措施提供信息并进行评估。这应该基于对社区、癌症护理和遗传服务层面不同获取点及互动中所发生情况的更全面理解。
