关于遗传学的信息在网上可供患者及其家属使用
Natalie J Strohmayer1, Itzel A Camarillo2, Hyunmi Choi3
1Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, NY 10032, United States.
Epilepsy & behavior : E&B
|March 5, 2025
概括
网上关于遗传学的信息是可用的,但往往缺乏深度,很难找到. 患者和家人必须积极寻找有关遗传性病原因和测试的细节.
科学领域:
- 神经遗传学 神经遗传学
- 医疗信息学 医疗信息学
- 患者教育 患者教育
背景情况:
- 有一个重要的遗传成分,但公众的理解和在线资源可能有限.
- 在线信息的可访问性和质量对于患者和家庭对遗传性的教育至关重要.
研究的目的:
- 评估和比较有关遗传学的在线信息的可用性和性质.
- 评估网站和社交媒体平台上的资源,以帮助患者及其家人.
主要方法:
- 在谷歌搜索遗传学术语,分析了前10个非赞助网站.
- 按目标受众,的特异性和遗传学重点分类的网站.
- 分析了YouTube,X,Facebook和TikTok上的帖子,以确定遗传性的主题和讨论频率.
主要成果:
- 大多数被评估的网站都提到遗传学,但详细的信息和遗传测试讨论很少出现.
- 社交媒体上关于"遗传"的讨论比单独关于""的讨论更为普遍.
- YouTube和X显示基因讨论比Facebook或TikTok更频繁;基因测试的重要性是最常见的主题.
结论:
- 在线关于遗传学的信息并不容易发现,需要用户积极搜索.
- 关于的遗传学,包括复杂的遗传模式的在线讨论的深度是有限的.
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