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 project identifies:

  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.

The final project report, which outlines our recommendations, is available below.

Funded by a grant until end of August 2012 from the Big Lottery Fund Research Programme, the project aimed to: (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 recommendations to improve access to genetics services for people from minority ethnic groups. The research has also involved a review of current evidence.

The project has focused on breast and ovarian, bowel, and prostate cancer. These are recognised as the commonest cancers where preventive measures exist if familial risk is identified. We used 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 NHS regional clinical genetics services helped with the research. This qualitative study has explored the views of health care professionals in addition to patients and their families who have accessed cancer genetics services. Crucially, we also invited 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.

As part of analysing what people had to say, we shared this information with people who had been interviewed and in a workshop with 41 stakeholders (including genetics and other clinical providers, service users, third sector, academics) to discuss, and help develop findings and recommendations.

This research received full ethics approval in April 2010 followed by Research and Development Committee (R & D) approval at both NHS sites.

 

The Final Report - 'Identifying family risk of cancer: Why is this more difficult for ethnic minority communities and what would help?'

You can view or download below the Final Report which also contains a Lay Summary written in plain English: 

Looking for more information about genetic conditions in minority ethnic communities? Talking Genetics, based in Birmingham Women's Hospital, has an array of resources to help you find the information you're looking for.

Has anyone in your family had cancer?

Recruitment of people to this study is completed now but if you'd like to view or download a poster or leaflet that we used to advertise for people in the community to take part, please click on the links below:

 

For more information email or