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向荷兰消费者提供的与健康相关的直接面向消费者的基因检测信息:对卖家网站的深入内容分析

Information Provision Regarding Health-Related Direct-to-Consumer Genetic Testing for Dutch Consumers: An in-Depth Content Analysis of Sellers' Websites.

作者信息

Bruins Danny, Onstwedder Suzanne M, Cornel Martina C, Ausems Margreet G E M, van Mil Marc H W, Rigter Tessel

机构信息

Section Community Genetics, Department of Human Genetics, Amsterdam Public Health Research Institute, Personalized Medicine, Amsterdam UMC, Vrije Universiteit Amsterdam, 1105 AZ Amsterdam, The Netherlands.

Center for Health Protection, National Institute for Public Health and the Environment, 3721 MA Bilthoven, The Netherlands.

出版信息

Genes (Basel). 2024 Apr 20;15(4):517. doi: 10.3390/genes15040517.

DOI:10.3390/genes15040517
PMID:38674451
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11049909/
Abstract

: Previous studies have suggested that information offered by sellers of health-related direct-to-consumer genetic tests (DTC-GTs) is often incomplete, unbalanced, or too difficult to understand. The extent to which this is the case for sellers accessible to Dutch consumers has not previously been studied. : The present study aimed to assess the completeness, balance, readability, and findability of informational content on a selection of websites from several health-related DTC-GT sellers accessible to Dutch consumers. An in-depth content analysis was performed based on a recently published checklist outlining key items for policy guidance regarding DTC-GT services. : The information provided by sellers did not equally cover all aspects relevant to health-related DTC-GT service provision. The provided information was slightly unbalanced, with benefits of health-related DTC-GT usage being overemphasized compared to its risks and limitations. The readability of the provided information was low, on average requiring college education for proper understanding. A findability analysis showed that information concerning all themes is overall relatively evenly distributed across analyzed sellers' websites. : Information provision by assessed health-related DTC-GT sellers is suboptimal regarding completeness, balance, and readability. To better empower potential consumers to make an informed decision regarding health-related DTC-GT usage, we advocate industry-wide enhancement of information provision.

摘要

以往的研究表明,与健康相关的直接面向消费者的基因检测(DTC-GTs)卖家提供的信息往往不完整、不均衡或难以理解。荷兰消费者能够接触到的卖家的情况究竟如何,此前尚未有过研究。

本研究旨在评估荷兰消费者能够接触到的几家与健康相关的DTC-GT卖家的部分网站上信息内容的完整性、平衡性、可读性和可查找性。基于最近发布的一份清单进行了深入的内容分析,该清单概述了有关DTC-GT服务政策指导的关键项目。

卖家提供的信息并未平等涵盖与健康相关的DTC-GT服务提供的所有相关方面。所提供的信息略显失衡,与健康相关的DTC-GT使用的益处相比,其风险和局限性被过度强调。所提供信息的可读性较低,平均需要大学学历才能正确理解。一项可查找性分析表明,有关所有主题的信息在分析的卖家网站上总体分布相对均匀。

经评估的与健康相关的DTC-GT卖家在信息提供的完整性、平衡性和可读性方面存在不足。为了更好地使潜在消费者能够就是否使用与健康相关的DTC-GT做出明智决定,我们主张在全行业加强信息提供。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/218d/11049909/a0676df1039e/genes-15-00517-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/218d/11049909/bd0acbdcab18/genes-15-00517-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/218d/11049909/62d5304217ce/genes-15-00517-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/218d/11049909/a0676df1039e/genes-15-00517-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/218d/11049909/bd0acbdcab18/genes-15-00517-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/218d/11049909/62d5304217ce/genes-15-00517-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/218d/11049909/a0676df1039e/genes-15-00517-g003.jpg

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本文引用的文献

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Considerations for developing regulations for direct-to-consumer genetic testing: a scoping review using the 3-I framework.制定直接面向消费者的基因检测法规的考量:使用3-I框架的范围综述
J Community Genet. 2022 Apr;13(2):155-170. doi: 10.1007/s12687-022-00582-3. Epub 2022 Feb 16.
2
A review of the legislation of direct-to-consumer genetic testing in EU member states.欧盟成员国直接面向消费者的基因检测立法综述。
Eur J Med Genet. 2020 Apr;63(4):103841. doi: 10.1016/j.ejmg.2020.103841. Epub 2020 Jan 7.
3
Third-Party Genetic Interpretation Tools: A Mixed-Methods Study of Consumer Motivation and Behavior.
第三方基因解读工具:消费者动机和行为的混合方法研究。
Am J Hum Genet. 2019 Jul 3;105(1):122-131. doi: 10.1016/j.ajhg.2019.05.014. Epub 2019 Jun 13.
4
Current ethical and legal issues in health-related direct-to-consumer genetic testing.与健康相关的直接面向消费者的基因检测中的当前伦理和法律问题。
Per Med. 2017 Sep;14(5):433-445. doi: 10.2217/pme-2017-0029. Epub 2017 Sep 15.
5
Australians' views on personal genomic testing: focus group findings from the Genioz study.澳大利亚人对个人基因组检测的看法:Genioz 研究的焦点小组结果。
Eur J Hum Genet. 2018 Aug;26(8):1101-1112. doi: 10.1038/s41431-018-0151-1. Epub 2018 Apr 30.
6
False-positive results released by direct-to-consumer genetic tests highlight the importance of clinical confirmation testing for appropriate patient care.直接面向消费者的基因检测产生的假阳性结果强调了为适当的患者护理进行临床确认检测的重要性。
Genet Med. 2018 Dec;20(12):1515-1521. doi: 10.1038/gim.2018.38. Epub 2018 Mar 22.
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Consumer use and response to online third-party raw DNA interpretation services.消费者对在线第三方原始DNA解读服务的使用及反应。
Mol Genet Genomic Med. 2018 Jan;6(1):35-43. doi: 10.1002/mgg3.340. Epub 2017 Nov 2.
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Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape.欧洲直接面向消费者的基因检测立法:碎片化的监管格局。
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Transparency of genetic testing services for 'health, wellness and lifestyle': analysis of online prepurchase information for UK consumers.“健康、养生与生活方式”基因检测服务的透明度:对英国消费者在线购买前信息的分析
Eur J Hum Genet. 2017 Aug;25(8):908-917. doi: 10.1038/ejhg.2017.75. Epub 2017 May 3.
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All your data (effectively) belong to us: data practices among direct-to-consumer genetic testing firms.你所有的数据(实际上)都归我们所有:直接面向消费者的基因检测公司的数据操作情况
Genet Med. 2017 May;19(5):513-520. doi: 10.1038/gim.2016.136. Epub 2016 Sep 22.