What hinders minority ethnic access to cancer genetics services and what may help?
What hinders minority ethnic access to cancer genetics services and what may help?
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DOI：
10.1038/ejhg.2013.257
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发表时间：
2014-07-01
影响因子：
5.2
通讯作者：
Kai, Joe
中科院分区：
文献类型：
--
作者：
Allford, Anna;Qureshi, Nadeem;Kai, Joe
在使用癌症遗传学服务方面的种族差异引起了人们对公平机会从家族癌症风险评估中获益、提高生存率和生活质量的关注。本文认为，现有的研究，探讨什么可能会阻碍或促进少数民族获得癌症遗传学服务。我们试图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、非洲或爱尔兰裔人提供服务发展信息。从六个电子研究数据库中识别出来自英国、北美和澳大拉西亚的相关研究。目前的证据是有限的，但表明低的认识和理解的家族性癌症风险的少数民族社区研究。社会文化的信仰，特别是对癌症的耻辱或遗传的癌症风险的差异，被确定。这些因素可能会影响到向提供者寻求咨询和转诊的差异。在癌症和遗传咨询的复杂背景下，无论是个人与提供者之间，还是在第三方口译员的调解下，还是在家庭内部，实现有效的跨文化沟通都带来了进一步的挑战。通过采用对文化敏感的提供者和咨询举措，以及通过使病人能够自我转诊，在促进少数民族获得服务方面取得了一些有希望的经验。然而，还需要进一步研究，以告知和评估这些干预措施，以及解决癌症遗传学服务所面临的一系列挑战的其他干预措施。这应该基于对社区、癌症护理和遗传服务层面上不同获取点和互动点发生的情况的更全面理解。
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.