分析直接面向消费者的基因检测门户网站及其对健康风险和检测限制的宣传。

IF 1.9 4区 医学 Q3 GENETICS & HEREDITY
Nicole M Lee, Matthew S VanDyke, Alan Abitbol, Kaylynne Wallace, Christina Meneses
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引用次数: 0

摘要

在评估与特定疾病相关的健康风险方面,直接面向消费者(DTC)的基因检测已变得异常流行。然而,如何传达这种风险以及是否充分传达测试的局限性会影响客户如何解读结果。通过对三个不同的 DTC 基因检测在线门户网站进行定性内容分析,我们研究了公司如何传达相对和绝对的健康风险、在多大程度上传达了局限性以及如何呈现这些信息。研究结果表明,相对风险比绝对风险更受关注,而且相对风险被用来组织和优先处理检测结果。此外,风险信息通常使用统计术语和概念来传达,而这些术语和概念可能并不适合所有用户。所传达的测试局限性包括无法诊断疾病、生活方式因素的重要性以及测试并不考虑所有基因变异。尽管公司包含了这些信息,但这些信息并不醒目。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
An analysis of direct-to-consumer genetic testing portals and their communication of health risk and test limitations.

Direct-to-consumer (DTC) genetic testing has become incredibly popular for assessing health risk related to specific diseases. However, how this risk is conveyed and whether the limitations of the tests are fully communicated can impact how customers interpret results. Through a qualitative content analysis of three different DTC genetic testing online portals, we examine how companies communicate relative and absolute health risks, the extent to which limitations are communicated, and how this information is presented. Findings suggest that relative risk was more prominently communicated than absolute risk and that it was used to organize and prioritize results. Further, risk information was often communicated using statistical terms and concepts that may not be accessible to all users. Test limitations that were communicated included the inability to diagnose a disease, the importance of lifestyle factors, and that the tests do not account for all genetic variants. Although companies included this information, it was not visually prominent.

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来源期刊
Journal of Genetic Counseling
Journal of Genetic Counseling GENETICS & HEREDITY-
CiteScore
3.80
自引率
26.30%
发文量
113
审稿时长
6 months
期刊介绍: The Journal of Genetic Counseling (JOGC), published for the National Society of Genetic Counselors, is a timely, international forum addressing all aspects of the discipline and practice of genetic counseling. The journal focuses on the critical questions and problems that arise at the interface between rapidly advancing technological developments and the concerns of individuals and communities at genetic risk. The publication provides genetic counselors, other clinicians and health educators, laboratory geneticists, bioethicists, legal scholars, social scientists, and other researchers with a premier resource on genetic counseling topics in national, international, and cross-national contexts.
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