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 ten times more likely to be BRCA carriers compared to the general population. BRCA carriers have a mutation on their BRCA 1 or BRCA 2 genes that increases their risk of certain types of cancer – including breast, ovarian, prostate, and pancreatic cancer. 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 offered 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*. BRCA testing is also offered by many private services 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

A research 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 touch on various hereditary cancers that have an increased risk in Ashkenazi and non-Ashkenazi Jews but will focus on cancers associated with the BRCA1 and BRCA2 genes. it will research key factors influencing BRCA awareness and testing uptake in the UK and explore BRCA-related activities and best practise across international Jewish communities.

Led by an experienced and independent researcher, the review will be carried out under the guidance of expert advisors and in partnership with an NHS Innovation Accelerator Fellow. Findings will be published in a community report – raising awareness and including recommendations for positive action to improve hereditary cancer management and prevention in the UK Jewish community.

PROJECT OBJECTIVES

  • To provide an up-to-date review of BRCA-related cancer risks, awareness of these risks, and genetic screening services available to the UK Jewish community.
  • To identify priority needs together with practical recommendations to improve BRCA awareness in, and access to responsible BRCA testing for, the UK Jewish community.
  • To publish a community report to support the design and implementation of a strategy for collaborative and resource efficient action to address gaps in hereditary cancer awareness and testing provision across the UK Jewish community.

* 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