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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.

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/bd0acbdcab18/genes-15-00517-g001.jpg

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