Company disclosure and consumer perceptions of the privacy implications of direct-to-consumer genetic testing
Company disclosure and consumer perceptions of the privacy implications of direct-to-consumer genetic testing
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DOI：
10.1080/14636778.2016.1162092
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发表时间：
2016-01-01
影响因子：
1.8
通讯作者：
O'Doherty, Kieran
中科院分区：
文献类型：
--
作者：
Christofides, Emily;O'Doherty, Kieran
本研究探讨了直接面向消费者的基因检测（DTCGT）公司传达隐私信息的方式以及消费者如何理解DTCGT的隐私影响。我们首先对DTCGT网站进行了分析，以确定它们提供了哪些关于处理消费者信息和样本的信息。86家公司提供DTCGT服务，可从加拿大在线购买。然后，我们调查了415名消费者（180名已购买，235名考虑但没有购买DTCGT）。虽然大多数网站都有一些隐私信息，但很少有网站提供足够的信息，让消费者做出明智的购买决定。近一半的参与者报告阅读了公司的隐私政策，许多人认为他们获得了足够的隐私影响信息，但他们的期望通常与公司的做法不一致。最常见的期望是，该公司将只与他们分享结果，并在测试后销毁他们的样本。我们讨论这些问题的背景下，DTCGT的隐私期望。
This study examines the way direct-to-consumer genetic testing (DTCGT) companies communicate privacy information and how consumers understand privacy implications of DTCGT. We first conducted an analysis of DTCGT websites to determine what information they provide regarding the treatment of consumer information and samples. 86 companies offered DTCGT services that could be purchased online from Canada. We then surveyed 415 consumers (180 had purchased, 235 considered but did not purchase DTCGT). While most websites had some privacy information, few provided sufficient information for consumers to make informed purchase decisions. Nearly half of participants reported reading the company's privacy policy and many felt they received enough information about privacy implications, but their expectations were generally not consistent with company practices. The most common expectation was that the company would share results only with them and destroy their sample after testing. We discuss these issues regarding privacy expectations in the context of DTCGT.