Information Provided to Consumers about Direct-to-Consumer Nutrigenetic Testing
Information Provided to Consumers about Direct-to-Consumer Nutrigenetic Testing
复制标题
DOI：
10.1159/000503977
复制
发表时间：
2020-02-01
影响因子：
1.7
通讯作者：
Vahakangas, Kirsi
中科院分区：
文献类型：
--
作者：
De, Suchetana;Pietila, Anna-Maija;Vahakangas, Kirsi
背景资料：与其他与健康相关的基因检测相比，营养基因检测通常被认为不那么严重，尽管它们有着类似的伦理问题。营养基因检测主要通过直接面向消费者的基因检测（DTC GT）提供，并且越来越受欢迎。目的：分析营养遗传学DTC GT网站的内容，以了解其提供的信息是否足以支持购买检测的明智决策。研究方法：DTC GT公司的网站销售营养遗传学测试，可以在线订购，不涉及任何医疗保健专业人员，在欧洲，美国，澳大利亚或加拿大提供英语，营销测试，并从芬兰访问，包括在研究中（n = 38）。在一个代码簿的帮助下，对网站内容进行了定量和定性分析。结果：在38个网站中，有8个网站包含清晰可识别且易于查找的遗传学信息部分。这些章节的质量和内容往往不够充分和/或具有误导性。14个网站有专门的部分讨论与GT相关的风险，并在13个签署知情同意书要求GT。此外，只有2家公司提供任何形式的测试前咨询和13个提供主要是单独收费的测试后咨询。网站结构复杂，很难找到所有关键信息，许多重要方面隐藏在法律的文件中，即使是专业人员也难以理解。结论：网站的结构以及其中内容的数量和质量不支持充分知情的决定。
Background: Nutrigenetic tests are often considered to be less serious compared to other health-related genetic tests, although they share similar ethical concerns. Nutrigenetic tests are mainly available through direct-to-consumer genetic testing (DTC GT) and increasing in popularity. Objective: To analyze the contents of nutrigenetic DTC GT websites with respect to the adequacy of the information provided to support a well-informed decision of purchasing the tests. Methods: The websites of DTC GT companies selling nutrigenetic tests that could be ordered online without involving any healthcare professional, available in English, marketing tests in Europe, the USA, Australia, or Canada, and accessible from Finland were included in the study (n = 38). Quantitative and qualitative content analyses of the websites were carried out with the help of a codebook. Results: Of the 38 websites, 8 included a clearly identifiable and easy-to-find information section about genetics. The quality and contents of these sections were often insufficient and/or misleading. Fourteen websites had specific sections discussing the risks related to GT, and on 13 signed informed consent was requested for GT. Furthermore, only 2 of the companies offered any kind of pretest consultation and 13 offered mostly separately charged posttest consultation. The complex structure of the websites made it difficult to find all key information, with many important aspects buried in legal documents, which were challenging to comprehend even for a professional. Conclusion: The structure of the websites and the amount and quality of the content therein do not support a well-informed decision.