Department of Psychology, University of Guelph, Guelph, Ontario, Canada.
Metamedica, Faculty of Law and Criminology, Ghent University, Ghent, Belgium.
Nat Genet. 2021 Jan;53(1):2-8. doi: 10.1038/s41588-020-00742-6.
In this Commentary, we argue that in line with the dramatic increase in the collection, storage, and curation of human genomic data for biomedical research, genomic data repositories and consortia have adopted governance frameworks to address the dual objectives of enabling wide access while protecting against possible harms. However, there are ongoing debates in the scientific community about the merits and limitations of different governance frameworks in achieving these twin aims; and indeed, best practices and points for consideration are notably absent when it comes to devising a governance framework for genomic databases. Based on our collective experience of devising and assessing governance frameworks, our Commentary identifies five key functions of “good governance” (or what makes “better governance”) and three areas where trade-offs should be considered when specifying policies within those functions. We apply these functions as a benchmark to describe, as an example, the governance frameworks of six large-scale international genomic projects.
在这篇评论中，我们认为，随着用于生物医学研究的人类基因组数据的收集、存储和管理的急剧增加，基因组数据库和联盟已经采用了治理框架来解决广泛开放获取和防范潜在危害的双重目标。然而，科学界对于不同治理框架在实现这两个目标方面的优缺点存在持续的争论；实际上，在为基因组数据库设计治理框架时，最佳实践和需要考虑的要点明显缺失。基于我们在设计和评估治理框架方面的集体经验，我们的评论确定了“良好治理”的五个关键功能（或者是什么构成了“更好的治理”），以及在指定这些功能内的政策时需要考虑的三个权衡领域。我们将这些功能作为基准来描述，例如，六个大型国际基因组项目的治理框架。
