Department of Public Health, William Paterson University, Wayne, NJ, USA.
Department of Epidemiology, Mailman School of Public Health, Columbia University NY, New York, NY, USA.
J Genet Couns. 2021 Jun;30(3):785-792. doi: 10.1002/jgc4.1375. Epub 2020 Dec 31.
Direct-to-consumer (DTC) DNA (i.e., genetic) testing has become very popular, with close to 30 million Americans having used these services. The 100 most widely viewed DNA YouTube testing videos were analyzed to determine whether they are providing adequate information for consumers. The top 100 videos had more than 300 million cumulative views, showing the popularity and reach of the information source. While many videos addressed the specimen collection process, family roots and ancestry, and the prospect of uncovering unexpected information about family or health leading to possible distress, almost none of the videos addressed accuracy or confidentiality issues, which are major issues of DNA testing. It is recommended that further information on those issues be made readily available, and more vigilant oversight by regulatory agencies be implemented. Such oversight should include monitoring what information is and is not readily provided by each company, and the veracity of information being communicated to existing and prospective consumers. We also recommend that for medical issues, clinical genetic testing, along with genetic counseling by genetic counselors, be the method of choice.
直接面向消费者(DTC)的 DNA(即遗传)检测已经非常流行,近 3000 万美国人使用过这些服务。分析了 100 个最受欢迎的 DNA 视频测试 YouTube 视频,以确定它们是否为消费者提供了足够的信息。前 100 个视频的总浏览量超过 3 亿次,显示了信息来源的普及和影响力。虽然许多视频介绍了样本采集过程、家族根源和血统,以及发现关于家庭或健康的意外信息可能导致潜在困扰的前景,但几乎没有一个视频涉及准确性或保密性问题,这是 DNA 检测的主要问题。建议进一步提供有关这些问题的信息,并由监管机构实施更严格的监督。这种监督应包括监测每个公司提供的信息,以及向现有和潜在消费者传达的信息的真实性。我们还建议,对于医疗问题,应选择临床基因检测以及遗传咨询师的遗传咨询。