Slide 1 in 40 Ashkenazi Jews carry a BRCA mutation that increases their risk of developing certain hereditary cancers including breast, ovarian, prostate, and pancreatic cancer. Slide Knowledge of carrier status enables a carrier to consider the various options available to manage their increased cancer risk. Slide Approx. 90% of BRCA mutation carriers in the Jewish community have not accessed genetic testing and so are unaware of their BRCA status.*

PROJECT NEED

Jewish people are five times more likely to be BRCA carriers compared to the general population. BRCA carriers have a mutation in their BRCA 1 or BRCA 2 genes that increases their risk of certain types of cancer – including breast, ovarian, prostate, and pancreatic cancer. Both female and male BRCA carriers have a 50% chance of passing on their mutation, and raised cancer risk, to their children.

Genetic testing identifies if a person is a BRCA carrier, enabling them to consider various options to manage their cancer risk and improve their health outcomes. Although 1 in 40 Ashkenazi Jews are BRCA carriers, BRCA awareness and testing uptake in the UK Jewish community is very low.

BRCA testing on the NHS is available to individuals assessed as ‘high risk’ using their family-history based approach. However, using this approach, over 50% of Jewish BRCA carriers will not meet the risk threshold required to access testing and so be missed. Many private services also offer BRCA testing but these are often unaffordable and lack appropriate genetic counselling.

A cost-benefit analysis of BRCA testing in the Jewish population concluded that thousands of lives, as well as significant NHS funds, could be saved if NHS testing were made available to all Jewish adults – not just those considered ‘high risk’. And yet today, the Jewish community is not fully utilising the current restricted NHS service as many of those already eligible are not accessing this vital service.

Given its huge life-saving potential, there is a critical need to understand and address the barriers to BRCA awareness and testing for the ‘at increased risk’ UK Jewish population.

PROJECT OVERVIEW

This project, endorsed by the Jewish Leadership Council, is being carried out to review the status of BRCA awareness and testing services in the UK.

The review will focus on hereditary cancers associated with BRCA1 and BRCA2 gene mutations. It will concentrate on the provision of BRCA information and testing in the UK and also look at BRCA-related activities in Jewish communities internationally.

Delivery of the research will be carried out by researchers based at Queen Mary University of London in partnership with the JHCR project director, and under the guidance of expert advisors.

Findings will be published in a community report and scientific papers – raising awareness and promoting positive action to improve hereditary cancer management and prevention in the UK Jewish community.

PROJECT OBJECTIVES

To review the status of BRCA awareness, community support, testing provision, experience and satisfaction with BRCA testing in the UK Jewish community.

Research outcomes will help identify priority needs and recommendations to improve BRCA awareness in, and access to responsible BRCA testing for, the UK Jewish community.

* R. Manchanda et al (2018). Current detection rates and time-to-detection of all identifiable BRCA carriers in the Greater London population, J Med Genet

∆ R. Manchanda et al (2019). Randomised trial of population based BRCA testing in Ashkenazi Jews: long-term outcomes, BJOG An International J of Obstetrics and Gynaecology

R. Manchanda et al (2015) Cost-effectiveness of Population Screening for BRCA Mutations in Ashkenazi Jewish Women Compared with Family History–Based Testing, JNCI J Natl Cancer Inst