Online Provision of BRCA1 and BRCA2 Health Information: A Search Engine Driven Systematic Web-Based Analysis.
Loading...
Embargo End Date
ICR Authors
Authors
Gootzen, TA
Kalra, A
Sarig, K
Sobočan, M
Oxley, SG
Dworschak, N
Georgiannakis, A
Glynou, S
Taniskidi, A
Ganesan, S
Ferris, M
Legood, R
Eeles, R
Evans, DGR
Fierheller, CT
Manchanda, R
Kalra, A
Sarig, K
Sobočan, M
Oxley, SG
Dworschak, N
Georgiannakis, A
Glynou, S
Taniskidi, A
Ganesan, S
Ferris, M
Legood, R
Eeles, R
Evans, DGR
Fierheller, CT
Manchanda, R
Document Type
Journal Article
Date
2024-06-25
Date Accepted
2024-06-24
Abstract
BRCA genetic testing is available for UK Jewish individuals but the provision of information online for BRCA is unknown. We aimed to evaluate online provision of BRCA information by UK organisations (UKO), UK Jewish community organisations (JCO), and genetic testing providers (GTP). Google searches for organisations offering BRCA information were performed using relevant sets of keywords. The first 100 website links were categorised into UKOs/JCOs/GTPs; additional JCOs were supplemented through community experts. Websites were reviewed using customised questionnaires for BRCA information. Information provision was assessed for five domains: accessibility, scope, depth, accuracy, and quality. These domains were combined to provide a composite score (maximum score = 5). Results were screened (n = 6856) and 45 UKOs, 16 JCOs, and 18 GTPs provided BRCA information. Accessibility was high (84%,66/79). Scope was lacking with 35% (28/79) addressing >50% items. Most (82%, 65/79) described BRCA-associated cancers: breast and/or ovarian cancer was mentioned by 78%(62/79), but only 34% (27/79) mentioned ≥1 pancreatic, prostate, melanoma. Few websites provided carrier frequencies in the general (24%,19/79) and Jewish populations (20%,16/79). Only 15% (12/79) had quality information with some/minimal shortcomings. Overall information provision was low-to-moderate: median scores UKO = 2.1 (IQR = 1), JCO = 1.6 (IQR = 0.9), and GTP = 2.3 (IQR = 1) (maximum-score = 5). There is a scarcity of high-quality BRCA information online. These findings have implications for UK Jewish BRCA programmes and those considering BRCA testing.
Citation
Cancers, 2024, 16 (13), pp. 2324 -
Source Title
Cancers
Publisher
MDPI
ISSN
2072-6694
eISSN
2072-6694
Collections
Research Team
Oncogenetics