Elson S. Floyd College of Medicine, Washington State University, Vancouver, WA, USA; HudsonAlpha Institute for Biotechnology, Huntsville, AL, USA.
Trends Genet. 2020 Jun;36(6):390-394. doi: 10.1016/j.tig.2020.03.004. Epub 2020 Apr 14.
Although public repository requirements are aimed at researchers and designed to ensure that the utility of the limited data we have is optimized, these policies also have ramifications for research participants. In this opinion article, I discuss how the nature of such repositories can subject participants whose data are 'banked' to unwitting participation in scientific projects they might find objectionable. In addition, concerns about the privacy of banked genomic data are exacerbated by recent projects that demonstrate the ability to re-identify genomic data, raising the specter of discriminatory or oppressive use of this information. These concerns are most likely to discourage participation in research that requires data sharing among those who have experienced these phenomena and are less likely to discount their likelihood.
尽管公共存储库的要求针对的是研究人员,旨在确保我们拥有的有限数据的效用得到优化,但这些政策也对研究参与者产生影响。在这篇观点文章中,我讨论了这些存储库的性质如何使那些其数据被“存储”的参与者在不知不觉中参与到他们可能反对的科学项目中。此外,最近的一些项目表明可以重新识别基因组数据,这加剧了人们对存储的基因组数据隐私的担忧,引发了对这种信息的歧视性或压迫性使用的担忧。这些担忧很可能会阻碍那些需要经历过这些现象的人之间进行数据共享的研究的参与,而且不太可能降低这种可能性。