Informational content, literacy demands, and usability of websites offering health-related genetic tests directly to consumers
Informational content, literacy demands, and usability of websites offering health-related genetic tests directly to consumers
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DOI：
10.1097/gim.0b013e3181dbd8b2
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发表时间：
2010-05-01
影响因子：
8.8
通讯作者：
Kaphingst, Kimberly A.
中科院分区：
文献类型：
--
作者：
Lachance, Christina R.;Erby, Lori A. H.;Kaphingst, Kimberly A.
目的：随着直接面向消费者的基因检测变得越来越普遍，包括健康知识有限的消费者在内的各种消费者群体可能会考虑进行检测。鉴于对直接面向消费者的基因检测提出的担忧，本研究试图批判性地研究与健康相关的直接面向消费者的网站的信息内容，识字需求和可用性是否符合现有的建议。方法：对29个直接面向消费者的健康相关网站进行内容分析。两名编码员独立评估每个网站的信息内容（例如，好处，限制），识字需求（例如，阅读水平）和可用性（e.例如，在一个实施例中，导航方便）。结果如下：大多数网站都提供了健康状况和他们测试的一些标志物，测试的好处，测试过程的描述以及他们的隐私政策。很少有人引用科学文献，解释测试局限性，或提供咨询健康专业人士的机会。在大多数网站上很难找到关键的信息内容。很少有网站提供疾病风险估计样本或使用通用语言并始终如一地解释技术术语。平均阅读水平为15级。结论：健康相关的直接面向消费者的网站的信息内容的质量，识字需求和可用性差异很大。许多用户会努力寻找和理解重要信息。为了让消费者更好地理解这些网站上的内容，并评估测试对他们健康的意义，网站应该通过提取和优先考虑关键信息内容，同时关注阅读水平和可用性元素，降低对用户的要求。在缺乏强制性法规的情况下，政府机构或专业组织可能需要提高消费者和供应商对这些问题的认识。Genet Med 2010：2（5）：304-312.
Purpose: As direct-to-consumer genetic testing becomes more available, a diverse group of consumers, including those with limited health literacy, may consider testing. In light of concerns raised about direct-to-consumer genetic testing, this study sought to critically examine whether the informational content, literacy demands, and usability of health-related direct-to-consumer websites met existing recommendations. Methods: A content analysis was performed on 29 health-related direct-to-consumer websites. Two coders independently evaluated each website for informational content (e.g., benefits, limitations), literacy demands (e.g., reading level), and usability (e. g., ease of navigation). Results: Most sites presented health conditions and some markers for which they tested, benefits of testing, a description of the testing process, and their privacy policy. Fewer cited scientific literature, explained test limitations, or provided an opportunity to consult a health professional. Key informational content was difficult to locate on most sites. Few sites gave sample disease risk estimates or used common language and explained technical terms consistently. Average reading level was grade 15. Conclusion: The quality of informational content, literacy demands, and usability across health-related direct-to-consumer websites varied widely. Many users would struggle to find and understand the important information. For consumers to better understand the content on these sites and evaluate the meaning of the tests for their health, sites should lower the demands placed on users by distilling and prioritizing the key informational content while simultaneously attending to the reading level and usability elements. In the absence of regulation compelling such changes, government agencies or professional organizations may need to increase consumer and provider awareness of these issues. Genet Med 2010: 2(5):304-312.