BRCAgenetic testing is available for UK Jewish individuals but the provision of information online forBRCAis unknown. We aimed to evaluate online provision ofBRCAinformation by UK organisations (UKO), UK Jewish community organisations (JCO), and genetic testing providers (GTP). Google searches for organisations offeringBRCAinformation 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 forBRCAinformation. 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 providedBRCAinformation. Accessibility was high (84%,66/79). Scope was lacking with 35% (28/79) addressing >50% items. Most (82%, 65/79) describedBRCA-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-qualityBRCAinformation online. These findings have implications for UK JewishBRCAprogrammes and those consideringBRCAtesting.
英国犹太裔人群虽可获得BRCA基因检测服务，但其在线信息提供情况尚不明确。本研究旨在评估英国机构、英国犹太社区组织及基因检测服务商提供的BRCA在线信息质量。通过谷歌搜索引擎使用相关关键词组合检索提供BRCA信息的机构，对前100个网站链接按机构类型分类，并经由社区专家补充犹太社区组织信息。采用定制问卷对网站BRCA信息进行审查，从可及性、覆盖范围、信息深度、准确性和质量五个维度评估信息提供情况，并综合生成复合评分（最高分=5分）。经筛选（n=6856），最终45家英国机构、16家犹太社区组织和18家基因检测服务商提供BRCA相关信息。信息可及性较高（84%，66/79），但覆盖范围不足：仅35%（28/79）的网站涵盖超50%评估条目。大多数网站（82%，65/79）描述了BRCA相关癌症，其中78%（62/79）提及乳腺癌和/或卵巢癌，但仅34%（27/79）提及胰腺癌、前列腺癌或黑色素瘤中至少一种。少数网站提供普通人群（24%，19/79）和犹太人群（20%，16/79）的携带者频率信息。仅15%（12/79）的网站信息质量较高（存在少量/轻微缺陷）。总体信息提供水平为低至中等：英国机构中位数得分2.1（四分位距=1），犹太社区组织1.6（四分位距=0.9），基因检测服务商2.3（四分位距=1）（满分5分）。研究表明当前在线高质量BRCA信息严重匮乏，这一发现对英国犹太裔BRCA筛查项目及考虑接受基因检测的群体具有重要参考价值。
肿瘤(癌症)患者之家