Song Lingqiao, Liu Hanshi, Brinkman Fiona S L, Gill Erin, Griffiths Emma J, Hsiao William W L, Savić-Kallesøe Sarah, Moreira Sandrine, Van Domselaar Gary, Zawati Ma'n H, Joly Yann
Department of Human Genetics, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada.
Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada.
Front Genet. 2022 Mar 24;12:716541. doi: 10.3389/fgene.2021.716541. eCollection 2021.
COVID-19 was declared to be a pandemic in March 2020 by the World Health Organization. Timely sharing of viral genomic sequencing data accompanied by a minimal set of contextual data is essential for informing regional, national, and international public health responses. Such contextual data is also necessary for developing, and improving clinical therapies and vaccines, and enhancing the scientific community's understanding of the SARS-CoV-2 virus. The Canadian COVID-19 Genomics Network (CanCOGeN) was launched in April 2020 to coordinate and upscale existing genomics-based COVID-19 research and surveillance efforts. CanCOGeN is performing large-scale sequencing of both the genomes of SARS-CoV-2 virus samples (VirusSeq) and affected Canadians (HostSeq). This paper addresses the privacy concerns associated with sharing the viral sequence data with a pre-defined set of contextual data describing the sample source and case attribute of the sequence data in the Canadian context. Currently, the viral genome sequences are shared by provincial public health laboratories and their healthcare and academic partners, with the Canadian National Microbiology Laboratory and with publicly accessible databases. However, data sharing delays and the provision of incomplete contextual data often occur because publicly releasing such data triggers privacy and data governance concerns. The CanCOGeN Ethics and Governance Expert Working Group thus has investigated several privacy issues cited by CanCOGeN data providers/stewards. This paper addresses these privacy concerns and offers insights primarily in the Canadian context, although similar privacy considerations also exist in other jurisdictions. We maintain that sharing viral sequencing data and its limited associated contextual data in the public domain generally does not pose insurmountable privacy challenges. However, privacy risks associated with reidentification should be actively monitored due to advancements in reidentification methods and the evolving pandemic landscape. We also argue that during a global health emergency such as COVID-19, privacy should not be used as a blanket measure to prevent such genomic data sharing due to the significant benefits it provides towards public health responses and ongoing research activities.
2020年3月，世界卫生组织宣布新型冠状病毒肺炎（COVID-19）为大流行病。及时共享病毒基因组测序数据并附带最少的背景数据，对于为区域、国家和国际公共卫生应对措施提供信息至关重要。此类背景数据对于开发和改进临床治疗方法及疫苗，以及增进科学界对严重急性呼吸综合征冠状病毒2（SARS-CoV-2）病毒的了解也必不可少。加拿大COVID-19基因组学网络（CanCOGeN）于2020年4月启动，以协调和扩大现有的基于基因组学的COVID-19研究及监测工作。CanCOGeN正在对SARS-CoV-2病毒样本的基因组（病毒测序）和受影响的加拿大人（宿主测序）进行大规模测序。本文探讨了在加拿大背景下，与共享病毒序列数据及一组预定义的描述序列数据样本来源和病例属性的背景数据相关的隐私问题。目前，病毒基因组序列由省级公共卫生实验室及其医疗保健和学术合作伙伴、加拿大国家微生物实验室以及可公开访问的数据库共享。然而，数据共享延迟和背景数据提供不完整的情况经常发生，因为公开发布此类数据会引发隐私和数据治理方面的担忧。因此，CanCOGeN伦理与治理专家工作组调查了CanCOGeN数据提供者/管理者提出的若干隐私问题。本文探讨了这些隐私问题，并主要在加拿大背景下提供见解，尽管其他司法管辖区也存在类似的隐私考量。我们认为，在公共领域共享病毒测序数据及其有限的相关背景数据通常不会带来无法克服的隐私挑战。然而，由于身份重新识别方法的进步和不断演变的疫情形势，与身份重新识别相关的隐私风险应受到积极监测。我们还认为，在诸如COVID-19这样的全球卫生紧急情况期间，隐私不应被用作阻止此类基因组数据共享的全面措施，因为它能为公共卫生应对措施和正在进行的研究活动带来重大益处。
