Center for Biomedical Ethics and Law, Department of Public Health and Primary Care, University of Leuven, Leuven, Belgium.
Montreal Neurological Institute, McGill University, Montreal, Canada.
Genet Med. 2019 May;21(5):1031-1037. doi: 10.1038/s41436-018-0316-x. Epub 2018 Oct 8.
Access to detailed variant data is key to inform and verify the interpretation of genomic data. Clinical laboratories can play a significant role in sharing patients' data through public variant databases. To facilitate data sharing, various public databases, such as ClinVar and DECIPHER have been established, which accept data submission from laboratories, clinicians, researchers, and patients. Despite clear benefits to sharing, questions may arise about the adequate form of consent to be obtained from patients when sharing data from their clinical tests through public databases. In this paper, we provide an overview and critical analysis of the relevant consent policies of the major public databases, and of the consent forms of clinical laboratories that share variant data via ClinVar.
获取详细的变异数据对于解释和验证基因组数据至关重要。临床实验室可以通过公共变异数据库在分享患者数据方面发挥重要作用。为了促进数据共享，已经建立了各种公共数据库，如 ClinVar 和 DECIPHER，这些数据库接受来自实验室、临床医生、研究人员和患者的数据提交。尽管共享数据有明显的好处，但在通过公共数据库共享患者临床检测数据时，如何获得患者充分的同意可能会引起争议。在本文中，我们对主要公共数据库的相关同意政策以及通过 ClinVar 分享变异数据的临床实验室的同意表格进行了概述和批判性分析。
