Gootzen Tamar A, Kalra Ashwin, Sarig Katrina, Sobočan Monika, Oxley Samuel George, Dworschak Nina, Georgiannakis Ariadni, Glynou Sevasti, Taniskidi Angeliki, Ganesan Subhasheenee, Ferris Michelle, Legood Rosa, Eeles Ros, Evans D Gareth R, Fierheller Caitlin T, Manchanda Ranjit
Centre for Cancer Screening, Prevention & Early Diagnosis, Wolfson Institute of Population Health, Charterhouse Square, Queen Mary University of London, London EC1M 6BQ, UK.
Department of Gynaecological Oncology, Royal London Hospital, Barts Health NHS Trust, London E1 1BB, UK.
Cancers (Basel). 2024 Jun 25;16(13):2324. doi: 10.3390/cancers16132324.
genetic testing is available for UK Jewish individuals but the provision of information online for is unknown. We aimed to evaluate online provision of information by UK organisations (UKO), UK Jewish community organisations (JCO), and genetic testing providers (GTP). Google searches for organisations offering 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 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 ( = 6856) and 45 UKOs, 16 JCOs, and 18 GTPs provided information. Accessibility was high (84%,66/79). Scope was lacking with 35% (28/79) addressing >50% items. Most (82%, 65/79) described -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 information online. These findings have implications for UK Jewish programmes and those considering testing.
基因检测服务面向英国犹太人群体，但在线信息提供情况不明。我们旨在评估英国组织（UKO）、英国犹太社区组织（JCO）和基因检测供应商（GTP）在线提供的信息。使用相关关键词集在谷歌上搜索提供信息的组织。前100个网站链接被归类为UKO/JCO/GTP；通过社区专家补充了其他JCO。使用针对信息的定制问卷对网站进行审查。从可及性、范围、深度、准确性和质量五个领域评估信息提供情况。这些领域合并得出综合评分（最高分 = 5）。筛选结果（= 6856），45个UKO、16个JCO和18个GTP提供了信息。可及性较高（84%，66/79）。范围不足，35%（28/79）涉及超过50%的项目。大多数（82%，65/79）描述了相关癌症：78%（62/79）提到了乳腺癌和/或卵巢癌，但只有34%（27/79）提到了≥1种胰腺癌、前列腺癌、黑色素瘤。很少有网站提供一般人群（24%，19/79）和犹太人群体（20%，16/79）的携带者频率。只有15%（12/79）有质量信息且存在一些/极小的缺陷。总体信息提供水平为低到中等：UKO的中位数评分 = 2.1（四分位距 = 1），JCO = 1.6（四分位距 = 0.9），GTP = 2.3（四分位距 = 1）（最高分 = 5）。在线高质量信息匮乏。这些发现对英国犹太基因项目以及考虑基因检测的人具有启示意义。
