BRCA awareness and testing experience in the UK Jewish population: a qualitative study

Katrina Sarig; Samuel Oxley; Ashwin Kalra; Monika Sobocan; Caitlin T Fierheller; Michail Sideris; Tamar Gootzen; Michelle Ferris; Rosalind A Eeles; D Gareth Evans; Samantha L Quaife; Ranjit Manchanda

doi:10.1136/jmg-2023-109576

BRCA awareness and testing experience in the UK Jewish population: a qualitative study

J Med Genet. 2024 Apr 4:jmg-2023-109576. doi: 10.1136/jmg-2023-109576. Online ahead of print.

Authors

Katrina Sarig¹, Samuel Oxley^{1

2}, Ashwin Kalra^{1

2}, Monika Sobocan^{1

3}, Caitlin T Fierheller¹, Michail Sideris^{1

2}, Tamar Gootzen¹, Michelle Ferris⁴, Rosalind A Eeles^{5

6}, D Gareth Evans⁷, Samantha L Quaife¹, Ranjit Manchanda^{8

2}

Affiliations

¹ Queen Mary University of London, London, UK.
² Department of Gynaecological Oncology, Barts Health NHS Trust, London, UK.
³ University of Maribor, Maribor, Slovenia.
⁴ Lane End Medical Practice, London, UK.
⁵ Oncogenetics, Institute of Cancer Research, Sutton, UK.
⁶ Royal Marsden NHS Foundation Trust, London, UK.
⁷ Manchester Centre for Genomic Medicine, Manchester, UK.
⁸ Queen Mary University of London, London, UK r.manchanda@qmul.ac.uk.

PMID: 38575303
DOI: 10.1136/jmg-2023-109576

Abstract

Background: 1 in 40 UK Jewish individuals carry a pathogenic variant in BRCA1/BRCA2. Traditional testing criteria miss half of carriers, and so population genetic testing is being piloted for Jewish people in England. There has been no qualitative research into the factors influencing BRCA awareness and testing experience in this group. This study aimed to explore these and inform improvements for the implementation of population genetic testing.

Methods: Qualitative study of UK Jewish adults who have undergone BRCA testing. We conducted one-to-one semistructured interviews via telephone or video call using a predefined topic guide, until sufficient information power was reached. Interviews were audio-recorded, transcribed verbatim and interpreted using applied thematic analysis.

Results: 32 individuals were interviewed (28 carriers, 4 non-carriers). We interpreted five themes intersecting across six time points of the testing pathway: (1) individual differences regarding personal/family history of cancer, demographics and personal attitudes/approach; (2) healthcare professionals' support; (3) pathway access and integration; (4) nature of family/partner relationships; and (5) Jewish community factors. Testing was largely triggered by connecting information to a personal/family history of cancer. No participants reported decision regret, although there was huge variation in satisfaction. Suggestions were given around increasing UK Jewish community awareness, making information and support services personally relevant and proactive case management of carriers.

Conclusions: There is a need to improve UK Jewish community BRCA awareness and to highlight personal relevance of testing for individuals without a personal/family history of cancer. Traditional testing criteria caused multiple issues regarding test access and experience. Carriers want information and support services tailored to their individual circumstances.

Keywords: Genetic Testing; Genetics, Population; Health Care Quality, Access, and Evaluation; Women's Health.