1 in 40 Ashkenazi Jews

carry a BRCA mutation that increases their risk of developing certain hereditary cancers. Knowing you are a carrier enables you to consider various options to manage your cancer risk.

Approximately 90% of Jewish BRCA mutation carriers are unaware of their BRCA status

Project Need

BRCA mutations increase the risk for breast (male and female), ovarian, prostate, pancreatic cancer, and melanoma. Carriers, both male and female, have a 50% chance of passing on their BRCA mutation to each of their children. Genetic testing identifies if a person is a carrier and enables them to consider different options to manage their cancer risk, and improve their health outcomes.

BRCA testing is available on the NHS for people assessed as being ‘high risk’. However, research* shows that the criteria used by the NHS to assess risk will exlude over 50% of BRCA carriers from their testing service. Though many private companies now offer BRCA testing, these options are often unaffordable and lack appropriate genetic counselling.

A peer-reviewed cost-benefit analysis** concluded that thousands of lives, as well as significant NHS funds, could be saved if BRCA testing was made available to all Jewish adults – not just those assessed as ‘high risk’. And yet, even the restricted NHS service is not being fully utilised by the Jewish community as many of those eligible today are not accessing this vital service.

Project Overview

A twelve-month project will be carried out to review the status of BRCA awareness and screening services in the UK. It will explore key factors influencing awareness and screening uptake and, referring to international experience and best practise, will make recommendations for how this issue can be addressed more strategically and effectively by the community.

The research will cover awareness and provision of genetic screening in the UK for hereditary cancers that disproportionately affect people of Ashkenazi, and non-Ashkenazi Jewish ancestry. The review will comment on various hereditary cancers that have an increased risk among Jewish people, however, it will focus primarily on BRCA-associated cancers.

Led by an experienced and independent researcher, under the guidance of expert advisors, the project will involve both qualitative and quantitative research. Findings will be published in a report that will be disseminated to raise awareness and promote positive action among key stakeholders and influencers.

Project Objectives

The JHC Review has three core 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 relative to international best


  • To identify priority needs together with practical recommendations to improve BRCA awareness in the UK Jewish community and to facilitate better access to responsible BRCA screening services for those who want it.


  • To publish and disseminate a report for key stakeholders to support the design and implementation of a strategy to improve hereditary cancer awareness and genetic screening access across the Jewish community – mobilising existing resources and working collaboratively to address gaps in service provision.

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.

* 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

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