Department of Genetics, Evolution & Environment, University College London, London, UK.
Department of Experimental Medical Science, BMC B13, Lund University, Lund, Sweden.
Hum Mutat. 2019 Oct;40(10):1634-1640. doi: 10.1002/humu.23881. Epub 2019 Aug 17.
Databases with variant and phenotype information are essential for advancing research and improving the health and welfare of individuals. These resources require data to be collected, curated, and shared among relevant specialties to maximize impact. The increasing generation of data which must be shared both nationally and globally for maximal effect presents important ethical and privacy concerns. Database curators need to ensure that their work conform to acceptable ethical standards. A Working Group of the Human Variome Project had the task of updating and streamlining ethical guidelines for locus-specific/gene variant database curators. In this article, we present practical and achievable steps which should assist database curators in carrying out their responsibilities within acceptable ethical norms.
数据库中包含有关变异和表型的信息，对于推进研究和提高个人的健康和福利至关重要。这些资源需要收集、整理和在相关专业之间共享数据，以最大限度地发挥其影响。为了达到最佳效果，必须在国家和全球范围内共享不断生成的数据，这引发了重要的伦理和隐私问题。数据库管理者需要确保其工作符合可接受的伦理标准。人类变异基因组计划的一个工作组承担了更新和简化特定基因座/基因变异数据库管理者伦理准则的任务。在本文中，我们提出了实际可行的步骤，这些步骤应有助于数据库管理者在可接受的伦理规范内履行其职责。
