Rubanovich Caryn Kseniya, Taitingfong Riley, Triplett Cynthia, Libiger Ondrej, Schork Nicholas J, Wagner Jennifer K, Bloss Cinnamon S
San Diego State University/University of California San Diego Joint Doctoral Program in Clinical Psychology, San Diego, CA, USA.
Department of Communication, University of California San Diego, La Jolla, CA, USA.
J Community Genet. 2021 Jan;12(1):37-52. doi: 10.1007/s12687-020-00481-5. Epub 2020 Aug 13.
Consumer uptake of direct-to-consumer (DTC) DNA ancestry testing is accelerating, yet few empirical studies have examined test impacts on recipients despite the DTC ancestry industry being two decades old. Participants in a longitudinal cohort study of response to health-related DTC genomic testing also received personal DNA ancestry testing at no additional cost. Baseline survey data from the primary study were analyzed together with responses to an additional follow-up survey focused on the response to ancestry results. Ancestry results were generated for 3466 individuals. Of those, 1317 accessed their results, and 322 individuals completed an ancestry response survey, in other words, approximately one in ten who received ancestry testing responded to the survey. Self-reported race/ethnicity was predictive of those most likely to view their results. While 46% of survey responders (N = 147) reported their ancestry results as surprising or unexpected, less than 1% (N = 3) were distressed by them. Importantly, however, 21% (N = 67) reported that their results reshaped their personal identity. Most (81%; N = 260) planned to share results with family, and 12% (N = 39) intended to share results with a healthcare provider. Many (61%; N = 196) reported test benefits (e.g., health insights), while 12% (N = 38) reported negative aspects (e.g., lack of utility). Over half (N = 162) reported being more likely to have other genetic tests in the future. DNA ancestry testing affected individuals with respect to personal identity, intentions to share genetic information with family and healthcare providers, and the likelihood to engage with other genetic tests in the future. These findings have implications for medical care and research, specifically, provider readiness to engage with genetic ancestry information.
消费者对直接面向消费者（DTC）的DNA血统检测的接受度正在加速上升，然而，尽管DTC血统检测行业已经有二十年历史，但很少有实证研究考察过检测对接受者的影响。一项关于健康相关DTC基因组检测反应的纵向队列研究的参与者还免费接受了个人DNA血统检测。主要研究的基线调查数据与针对血统检测结果反应的额外后续调查的回复一起进行了分析。为3466人生成了血统检测结果。其中，1317人查看了他们的结果，322人完成了血统检测结果反应调查，换句话说，接受血统检测的人中约十分之一回复了调查。自我报告的种族/族裔可预测最有可能查看检测结果的人群。虽然46%的调查回复者（N = 147）报告他们的血统检测结果令人惊讶或出乎意料，但不到1%（N = 3）的人因此感到困扰。然而，重要的是，21%（N = 67）的人报告称他们的检测结果重塑了他们的个人身份。大多数人（81%；N = 260）计划与家人分享检测结果，12%（N = 39）打算与医疗服务提供者分享检测结果。许多人（61%；N = 196）报告了检测的益处（例如，对健康的深入了解），而12%（N = 38）报告了负面方面（例如，无用）。超过一半（N = 162）的人报告未来更有可能进行其他基因检测。DNA血统检测在个人身份、与家人和医疗服务提供者分享基因信息的意愿以及未来进行其他基因检测的可能性方面对个人产生了影响。这些发现对医疗护理和研究具有启示意义，特别是医疗服务提供者对基因血统信息的接受程度。
