University of Utah Graduate Program in Genetic Counseling, Salt Lake City, Utah, USA,
Department of Pediatrics, University of Utah, Salt Lake City, Utah, USA.
Public Health Genomics. 2021;24(3-4):199-206. doi: 10.1159/000512660. Epub 2021 Feb 26.
Customer data from direct-to-consumer genetic testing (DTC GT) are often used for secondary purposes beyond providing the customer with test results.
The goals of this study were to determine customer knowledge of secondary uses of data, to understand their perception of risks associated with these uses, and to determine the extent of customer concerns about privacy.
Twenty DTC GT customers were interviewed about their experiences. The semi-structured interviews were transcribed, coded, and analyzed for common themes.
Most participants were aware of some secondary uses of data. All participants felt that data usage for research was acceptable, but acceptability for non-research purposes varied across participants. The majority of participants were aware of the existence of a privacy policy, but few read the majority of the privacy statement. When previously unconsidered uses of data were discussed, some participants expressed concern over privacy protections for their data.
When exposed to new information on secondary uses of data, customers express concerns and a desire to improve consent with transparency, more opt-out options, improved readability, and more information on future uses and potential risks from direct-to-consumer companies. Effective ways to improve readership about the secondary use, risk of use, and protection of customer data should be investigated and the findings implemented by DTC companies to protect public trust in these practices.
直接面向消费者的基因检测（DTC GT）的客户数据通常被用于提供测试结果之外的其他次要目的。
本研究的目的是确定客户对数据的次要用途的了解程度，了解他们对这些用途相关风险的看法，并确定客户对隐私问题的关注程度。
对 20 名 DTC GT 客户进行了访谈，了解他们的经验。对半结构化访谈进行了转录、编码和分析，以确定常见主题。
大多数参与者都意识到数据的一些次要用途。所有参与者都认为数据用于研究是可以接受的，但对于非研究目的的可接受性因人而异。大多数参与者都知道隐私政策的存在，但很少有人阅读大部分隐私声明。当讨论以前未考虑过的数据用途时，一些参与者对其数据的隐私保护表示担忧。
当客户接触到有关数据次要用途的新信息时，他们会表达关注，并希望通过提高透明度、增加更多的选择退出选项、提高可读性，以及更多地了解未来用途和潜在风险，从而改善同意书。直接面向消费者的公司应调查有效提高对数据的二次使用、使用风险和保护客户数据的阅读率的方法，并将调查结果应用于 DTC 公司，以保护公众对这些做法的信任。
