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Information Provided to Consumers about Direct-to-Consumer Nutrigenetic Testing
Public Health Genomics ( IF 1.7 ) Pub Date : 2019-01-01 , DOI: 10.1159/000503977
Suchetana De 1 , Anna-Maija Pietilä 2 , Terhi Iso-Touru 3 , Anu Hopia 4 , Raija Tahvonen 5 , Kirsi Vähäkangas 6
Affiliation  

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.

中文翻译:

向消费者提供的有关直接面向消费者的营养基因测试的信息

背景:与其他与健康相关的基因测试相比,营养基因测试通常被认为不那么严重,尽管它们有相似的伦理问题。营养基因测试主要通过直接面向消费者的基因测试 (DTC GT) 提供,并且越来越受欢迎。目的:分析营养遗传 DTC GT 网站的内容,了解所提供信息的充分性,以支持明智的购买测试决定。方法:本研究包括 DTC GT 公司销售营养基因测试的网站,这些网站无需任何医疗保健专业人士参与即可在线订购,提供英语版本,欧洲、美国、澳大利亚或加拿大的营销测试,并可从芬兰访问(n = 38)。网站的定量和定性内容分析是在密码本的帮助下进行的。结果:在 38 个网站中,有 8 个包含清晰可辨且易于查找的遗传信息部分。这些部分的质量和内容往往不足和/或具有误导性。14 个网站有专门部分讨论与 GT 相关的风险,13 个网站要求签署知情同意书。此外,只有 2 家公司提供任何类型的测试前咨询,13 家公司提供大部分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,许多重要方面都隐藏在法律文件中,即使是专业人士也难以理解。结论:
更新日期:2019-01-01
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