在线提供BRCA1和BRCA2健康信息:以搜索引擎驱动的系统网络分析
Tamar A Gootzen1, Ashwin Kalra1,2, Katrina Sarig1
1Centre for Cancer Screening, Prevention & Early Diagnosis, Wolfson Institute of Population Health, Charterhouse Square, Queen Mary University of London, London EC1M 6BQ, UK.
关于英国犹太人的BRCA基因突变的在线信息很少,往往缺乏质量. 这项研究评估了英国的组织,社区团体和测试提供商,发现信息提供总体上低至中等.
科学领域:
- 遗传学和公共卫生
- 在线健康信息传播和传播
- 癌症遗传学 癌症遗传学
背景情况:
- 对于英国犹太人来说,BRCA遗传测试是可用的,这是一个具有较高BRCA突变患病率的人群.
- 对这一人口群体在线BRCA信息的质量和可用性尚不清楚.
研究的目的:
- 评估英国组织 (UKOs),英国犹太社区组织 (JCOs) 和遗传测试提供商 (GTPs) 在线提供BRCA信息.
- 评估这些在线信息的可访问性,范围,深度,准确性和质量.
主要方法:
- 使用相关关键词进行谷歌搜索,以识别提供BRCA信息的组织.
- 分类了79个网站 (45个UKO,16个JCO,18个GTP) 并使用定制的问卷进行了审查.
- 评估了五个领域的信息提供,以计算综合分数 (最大5分).
主要成果:
- 可访问性很高 (84%),但范围有限,只有35%的项目处理了超过50%的评估项目.
- 虽然大多数网站 (82%) 提到与BRCA相关的癌症,如乳腺/卵巢癌,但很少有 (34%) 包含胰腺,前列腺或黑色素瘤风险.
- 一般 (24%) 和犹太 (20%) 人口的载波频率很少提供,只有15%的网站提供了高质量的信息.
结论:
- 在英国,全面的,高质量的在线BRCA信息非常稀缺.
- 调查结果强调需要改进在线资源,以支持英国犹太人的BRCA项目和考虑进行基因测试的个人.
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