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.

Longitudinal outcomes with cancer multigene panel testing in previously testedBRCA1/2negative patients

“…Equally important, we found higher uptake when patients had a discussion with a research staff member or their physician, suggesting that re‐contacting people in writing may not be the most effective strategy for offering updated MGPT. Additionally, we found that non‐White patients were more likely to not respond to the invitation for MGPT, raising the possibility for disparities in uptake of testing, consistent with previously published studies . Additionally, a study that surveyed patients retrospectively after MGPT did find higher distress and lower satisfaction among non‐White patients, providing strong rationale for additional studies to determine if outcomes differ for minority populations …”

“…3 We did find that intent to perform mammog- found that non-White patients were more likely to not respond to the invitation for MGPT, raising the possibility for disparities in uptake of testing, consistent with previously published studies. 41,42 Additionally, a study that surveyed patients retrospectively after MGPT did find higher distress and lower satisfaction among non-White patients, providing strong rationale for additional studies to determine if outcomes differ for minority populations. 39 We acknowledge several limitations of this study.…”

Using Genetic Technologies To Reduce, Rather Than Widen, Health Disparities

“…9 In minority communities, low awareness of familial cancer risk and social and cultural beliefs, such as those that lead to stigma about hereditary cancer, also appear to contribute to disparities in the use of genetic services. 10 …”

Supporting families with Cancer: A patient centred survivorship model of care

“…Data obtained from cancer referrals to Leicester's genetics service suggested that the number of Mendelian mutation carriers being seen in the clinic were less than would be expected given the catchment population size of 1 million; moreover, concerns were raised that referrals from Black and Minority Ethnic (BME) groups were also lower than would be expected given the large South-Asian community resident in the Leicester area [3] and that opportunities for earlier interventions in families were being missed through late referrals.…”