title: What hinders minority ethnic access to cancer genetics services and what may help?
abstract: 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.
authors.affiliation: Genetic Alliance UK, London, UK.
authors.forename: Anna
authors.initials: A
authors.lastname: Allford
authors.affiliation: Division of Primary Care, University of Nottingham, Nottingham, UK.
authors.forename: Nadeem
authors.initials: N
authors.lastname: Qureshi
authors.affiliation: Department of Genetics, University of Leicester, Leicester, UK.
authors.forename: Julian
authors.initials: J
authors.lastname: Barwell
authors.affiliation: Genetic Alliance UK, London, UK.
authors.forename: Celine
authors.initials: C
authors.lastname: Lewis
authors.affiliation: Division of Primary Care, University of Nottingham, Nottingham, UK.
authors.forename: Joe
authors.initials: J
authors.lastname: Kai
mesh_terms: D022126:Access to Information; D000293:Adolescent; D000328:Adult; D000368:Aged; D016208:Databases, Factual; D005260:Female; D033142:Genetic Services; D006801:Humans; D008297:Male; D008875:Middle Aged; D008913:Minority Groups; D009369:Neoplasms / Q000208:ethnology* / Q000235:genetics*; D010353:Patient Education as Topic