LoTempio Jonathan E, Moreno Jonathan D
Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
David and Lyn Silfen University Professor Emeritus, University of Pennsylvania, Philadelphia, PA, USA.
Nat Genet. 2025 Feb;57(2):287-294. doi: 10.1038/s41588-024-02049-2. Epub 2025 Jan 22.
Since the Human Genome Project, the consensus position in genomics has been that data should be shared widely to achieve the greatest societal benefit. This position relies on imprecise definitions of the concept of 'broad data sharing'. Accordingly, the implementation of data sharing varies among landmark genomic studies. In this Perspective, we identify definitions of broad that have been used interchangeably, despite their distinct implications. We further offer a framework with clarified concepts for genomic data sharing and probe six examples in genomics that produced public data. Finally, we articulate three challenges. First, we explore the need to reinterpret the limits of general research use data. Second, we consider the governance of public data deposition from extant samples. Third, we ask whether, in light of changing concepts of broad, participants should be encouraged to share their status as participants publicly or not. Each of these challenges is followed with recommendations.
自人类基因组计划以来,基因组学领域的共识是,数据应广泛共享以实现最大的社会效益。这一立场依赖于“广泛数据共享”概念的不精确定义。因此,数据共享在具有里程碑意义的基因组研究中的实施情况各不相同。在这篇观点文章中,我们确定了“广泛”的一些定义,这些定义虽含义不同却常被互换使用。我们进一步提供了一个基因组数据共享概念清晰的框架,并探究了六个产生公共数据的基因组学实例。最后,我们阐述了三个挑战。第一,我们探讨重新解读一般研究使用数据界限的必要性。第二,我们考虑现存样本公共数据存缴的管理。第三,鉴于“广泛”概念的变化,我们思考是否应鼓励参与者公开其参与者身份。针对这些挑战,我们都给出了相应建议。