Project: Ethnicity and Access

Family Risk, Common Cancers and People from Minority Ethnic Groups

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Genetic Alliance UK has produced groundbreaking reports previously around access to genetics services for minority ethnic communities (Darr, 1999) and ethnic monitoring (Mehta, 2003) and now in partnership with the Division of Primary Care at the University of Nottingham this new project will identify:

1. Why there is a significant under-representation of cancer referrals to clinical genetics services amongst people from minority ethnic groups; and
2. What strategies and approaches might address this inequity.

Funded by a grant from the Big Lottery Fund Research Programme, the project will: (i) identify why people from minority ethnic groups with a significant family history of cancer are less likely to access clinical genetics services than the mainstream UK population; and (ii) inform the development of interventions in order to improve access to genetics services for people from minority ethnic groups.

The project will focus on bowel, breast and prostate cancer. These are recognised as the commonest cancers where preventative measures exist if familial risk is identified. We will use the experiences of three established minority ethnic communities in England (South Asian, Black Caribbean and White Irish) as exemplars to improve understanding of;

• Patient-related contexts and perceptions, and
• Service-related factors that facilitate or hinder access to genetic services

Two centres will collaborate with the research; the Medical Genetics Unit of St. George’s University of London, and a Regional Genetics Service in the Midlands. This qualitative study will seek to discuss the research questions with clinicians and other key service informants in addition to patients and their families who have accessed cancer genetics services. Crucially, we will also invite people from the community who have a history of one of these cancers in their family but have not been seen by genetic related healthcare professionals, to take part in the study.

This research received full ethics approval in April 2010 and we have commenced at two centres where we have gained their Research and Development Committee (R & D) approval.

Has anyone in your family had cancer?

If you have relatives who have had breast, bowel, or prostate cancer and you have not been seen by the clinical genetics service, you can find out more about being involved in the study by clicking on one of the leaflets below additionally if you are from a community group you can also download a poster to display:

• Leaflet for people from a Black Caribbean background (pdf) 
• Poster for the Black Caribbean community (pdf)
• Leaflet for people from a South Asian background (pdf)      
• Poster for the South Asian Community (pdf)
• Leaflet for people from a White Irish background (pdf)        
• Poster for the White Irish Community (pdf)

For more information email amy@geneticalliance.org.uk or anna@geneticalliance.org.uk