PDF(Pubmed)
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.
摘要：
BRCA基因检测可用于英国犹太人，但BRCA的在线信息提供未知。我们旨在评估英国组织(UKO)在线提供的BRCA信息，英国犹太社区组织（JCO）基因检测提供商（GTP）。Google搜索提供BRCA信息的组织是使用相关的关键字集进行的。前100个网站链接分为UKO/JCO/GTP；其他JCO通过社区专家进行了补充。使用定制的BRCA信息问卷对网站进行了审查。对五个领域的信息提供进行了评估：可访问性，范围,深度,准确度,和质量。将这些结构域组合以提供综合评分(最大评分=5)。结果进行了筛选(n=6856)和45个UKO，16名JCO，18个GTP提供了BRCA信息。可访问性高（84%，66/79)。范围不足，35%(28/79)处理>50%的项目。大多数（82%，65/79）描述的BRCA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≥1胰腺，前列腺,黑色素瘤。很少有网站提供载波频率(24%，19/79）和犹太人口（20％，16/79).只有15%(12/79)的质量信息有一些/最小的缺点。总体信息提供从低到中等：中位数得分UKO=2.1（IQR=1），JCO=1.6（IQR=0.9），GTP=2.3(IQR=1)(最大分数=5)。网上缺乏高质量的BRCA信息。这些发现对英国犹太BRCA计划和考虑BRCA测试的人都有影响。
