Department of Integrative Structural and Computational Biology, Scripps Research Institute, La Jolla, CA, USA.
School of Biomedical Informatics, University of Texas Health Science Center at Houston, Houston, TX, USA.
Nat Genet. 2020 Oct;52(10):1005-1010. doi: 10.1038/s41588-020-0698-y. Epub 2020 Sep 14.
Access to medical data is central for conducting research on genomics. However, to tap these metadata (observable traits and phenotypes, diagnoses and medication, and labels), researchers must grapple with the complex and sensitive nature of the information. In this Perspective, we argue that, at this exciting time for genomics and artificial intelligence, several critical aspects of data generation, infrastructure and management are pillars of a modern data ecosystem. Many risks to privacy and many obstacles to medical research can be eliminated or mitigated by new secure data analytics. Finally, we discuss the potential consequences of medical data exiting the institutions and being managed by individuals. These shifts in data ownership have the potential for profound disruption and opportunity across many fields.
获取医学数据对于开展基因组学研究至关重要。然而，要利用这些元数据（可观察的特征和表型、诊断和药物治疗以及标签），研究人员必须应对信息的复杂性和敏感性。在这篇观点文章中，我们认为，在基因组学和人工智能令人兴奋的时刻，数据生成、基础设施和管理的几个关键方面是现代数据生态系统的支柱。通过新的安全数据分析，可以消除或减轻对隐私的许多风险以及对医学研究的许多障碍。最后，我们讨论了医疗数据离开医疗机构由个人管理的潜在后果。数据所有权的这些转变有可能在许多领域带来深远的颠覆和机遇。
