Article Text

Download PDFPDF
405 Analysis of BRCA1 and BRCA2 information provision online
  1. Tamar A Gootzen1,
  2. Ashwin Kalra1,2,
  3. Katrina Sarig1,
  4. Monika Sobocan1,3,
  5. Samuel Oxley1,2,
  6. Nina Dworschak1,
  7. Ariadni Georgiannakis1,
  8. Sevasti Glynou1,
  9. Angeliki Taniskidi1,
  10. Xia Wei1,4,
  11. Subhasheenee Ganesan1,2,
  12. Ros Eeles5,
  13. Gareth R Evans6,
  14. Michelle Ferris7,
  15. Caitlin T Fierheller1 and
  16. Ranjit Manchanda1,4,8,9
  1. 1Queen Mary University of London, London, UK
  2. 2Barts Health NHS Trust, London, UK
  3. 3University of Maribor, Maribor, Slovenia
  4. 4London School of Hygiene and Tropical Medicine, London, UK
  5. 5The Institute of Cancer Research, and Royal Marsden NHS Foundation Trust, London, UK
  6. 6University of Manchester, Manchester, UK
  7. 7Lane End Medical Practice, London, UK
  8. 8Barts and the Royal London Hospital, London, UK
  9. 9University College London, London, UK


Introduction/Background There is increasing availability, accessibility and awareness of BRCA1/BRCA2 genetic-testing. Recently population-based BRCA1/2 genetic-testing is available for UK Jewish individuals. Most UK individuals use the internet for health information, but the provision, extent and quality of information on BRCA1/BRCA2 online is currently unknown. This study aims to evaluate the online provision of BRCA1/BRCA2 information by UK organisations (UKO), UK Jewish-community organisations (JCO), and genetic-testing providers (GTP).

Methodology Google searches for UKOs/JCOs/GTPs offering BRCA1/BRCA2 information were performed using sets of relevant keywords. For each search, organisations from the first 100 hits were assessed and categorised into UKOs, JCOs, and GTPs. Additional JCOs were identified through community organisation lists. All organisations’ websites were reviewed for BRCA-information using customised questionnaires relevant to people seeking information, considering BRCA-testing and/or risk management. Information provision was assessed for five important domains: ‘accessibility’, ‘scope’, ‘depth’, ‘accuracy’ using a bespoke customised tool; and ‘quality’, using the validated DISCERN questionnaire. These five domains were combined to provide a score (maximum score=5).

Results 6856 search results were screened for websites expected to provide BRCA information, identifying 80 UKOs, 41 JCOs, and 18 GTPs. 56% UKOs, 39% JCOs, and 100% GTPs provided BRCA information. BRCA1/BRCA2 association with BC and/or OC was mentioned in 78% (62/79) of websites, but only 34%(27/79) mention at least one of the additional associated cancers: pancreatic, prostate, and/or melanoma. Inheritance pattern for BRCA1/BRCA2 variants was not explained by 75%(59/79) of websites. Overall information provision, assessed by combining scores of all categories, was low-to-moderate with median-scores of 2.1(IQR=1), 1.6(IQR=0.9), and 2.3(IQR=1) for UKOs, JCOs, and GTPs respectively. Only 11%(9/79) scored >3.5, indicating accessible, accurate, high-quality information.

Conclusion There is overall scarcity of high-quality BRCA-information online. These findings have implications for counselling and for individuals considering testing, and also for those who produce BRCA information online.

Disclosures 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 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 is supported by an NHS Innovation Accelerator (NIA) Fellowship for population testing. AK declares funding from Barts Charity outside this work. The other authors declare no conflict of interest.

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.