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Original research
BRCA awareness and testing experience in the UK Jewish population: a qualitative study
  1. Katrina Sarig1,
  2. Samuel Oxley1,2,
  3. Ashwin Kalra1,2,
  4. Monika Sobocan1,3,
  5. Caitlin T Fierheller1,
  6. Michail Sideris1,2,
  7. Tamar Gootzen1,
  8. Michelle Ferris4,
  9. Rosalind A Eeles5,6,
  10. D Gareth Evans7,
  11. Samantha L Quaife1,
  12. Ranjit Manchanda1,2
  1. 1Queen Mary University of London, London, UK
  2. 2Department of Gynaecological Oncology, Barts Health NHS Trust, London, UK
  3. 3University of Maribor, Maribor, Slovenia
  4. 4Lane End Medical Practice, London, UK
  5. 5Oncogenetics, Institute of Cancer Research, Sutton, UK
  6. 6Royal Marsden NHS Foundation Trust, London, UK
  7. 7Manchester Centre for Genomic Medicine, Manchester, UK
  1. Correspondence to Professor Ranjit Manchanda, Queen Mary University of London, London, UK; r.manchanda{at}qmul.ac.uk

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.

  • Genetic Testing
  • Genetics, Population
  • Women's Health
  • Health Care Quality, Access, and Evaluation

Data availability statement

Data are available upon reasonable request.

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Footnotes

  • KS and SO are joint first authors.

  • Twitter @ProfManchanda

  • Contributors Conception and funding—KS and RM. Planning and development—KS, MSo, AK, SLQ and RM. Interviews—KS and SO. Implementation and support—KS, SO, MSi, TG, AK, CTF, DGE, RAE, MF, SLQ and RM. Analysis—KS, SO, SLQ and RM. Writing and comments—all authors. RM acts as guarantor.

  • Funding This study is supported by the Eve Appeal (EVE/0027), Rosetrees Trust (EMSG1L7R) and Barts Charity (EMSG1M9R). RAE acknowledges support from the NIHR to the Biomedical Research Centre at the Royal Marsden NHS Foundation Trust and the Institute of Cancer Research (NIHR203314).

  • Disclaimer Funders had no role in the conduct, analysis or writing of this work.

  • Competing interests SO and RM declare funding from the Rosetrees Trust outside this work. RM declares research funding from the British Gynaecological Cancer Society, Barts & the London Charity, Eve Appeal, GSK and Yorkshire Cancer Research outside this work; an honorarium for grant review from Israel National Institute for Health Policy Research and honorarium for advisory board membership from AstraZeneca/MSD/EGL/GSK. RM was supported by an NHS Innovation Accelerator (NIA) Fellowship for population testing. RM has received grant funding for the evaluation of the NHS Jewish BRCA Programme and the Small Business Research Initiative BRCA-DIRECT breast cancer testing programme. RM has been the chair for the Trial Steering Committee for the BRCA-DIRECT trial. RM has received grant funding and is chief investigator for the PROTECT-C trial into population testing in the UK general population. RAE declares honoraria from GU-ASCO, Janssen, University of Chicago and Dana Farber Cancer Institute USA as a speaker; and educational honorarium from Bayer and Ipsen. RAE is a member of an external expert committee to AstraZeneca UK, a member of Active Surveillance Movember Committee, a member of the SAB of Our Future Health, and undertakes private practice in cancer genetic testing as a sole trader at the Royal Marsden NHS Foundation Trust and 90 Sloane Street SW1X 9PQ and 280 Kings Road SW3 4NX, London, UK. The other authors declare no conflict of interest.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.