Introduction: Customer data from direct-to-consumer genetic testing (DTC GT) are often used for secondary purposes beyond providing the customer with test results. Objective: 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. Methods: Twenty DTC GT customers were interviewed about their experiences. The semi-structured interviews were transcribed, coded, and analyzed for common themes. Results: 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. Conclusion: 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.
Public Health Genomics

中文翻译：

---

直接面向消费者的基因检测中的二手数据使用：客户在多大程度上了解和关注？

简介：来自直接面向消费者的基因检测 (DTC GT) 的客户数据通常用于次要目的，而不是为客户提供检测结果。目标：本研究的目标是确定客户对数据二次使用的了解，了解他们对与这些使用相关的风险的看法，并确定客户对隐私的担忧程度。方法：采访了 20 名 DTC GT 客户，了解他们的经历。对半结构化访谈进行转录、编码和分析，以找出共同的主题。结果：大多数参与者都知道数据的一些次要用途。所有参与者都认为研究数据使用是可以接受的，但非研究目的的可接受性因参与者而异。大多数参与者都知道隐私政策的存在，但很少有人阅读隐私声明的大部分内容。在讨论以前未考虑过的数据使用时，一些参与者表达了对其数据隐私保护的担忧。结论：当接触到有关数据二次使用的新信息时，客户表达了担忧并希望通过透明度、更多选择退出选项、提高可读性以及更多关于直接面向消费者的公司的未来使用和潜在风险的信息来改善同意。应调查提高读者对二次使用、使用风险和客户数据保护的有效方法，并应调查 DTC 公司实施的调查结果，以保护公众对这些做法的信任。
公共卫生基因组学