Department of Bioethics, Dalhousie University, 5849 University Avenue, CRC Building, Room C-312, PO Box 15000, Halifax, Nova Scotia, B3H 4R2, Canada.
Cardiff University, Cardiff, UK.
Hum Genomics. 2019 May 29;13(1):24. doi: 10.1186/s40246-019-0208-4.
The HUGO Committee on Ethics, Law and Society (CELS) undertook a Working Group exploration of the key ethical issues arising from genome sequencing in 2013. The Imagined Futures paper the group subsequently published proposed points to consider when applying genomic bioinformatics to data repositories used in genomic medicine and research ( http://www.hugo-international.org/Resources/Documents/CELS_Article-ImaginedFutures_2014.pdf ). Given the ever-increasing power to sequence the human genome rapidly and inexpensively-as well as trends toward "Big Data" and "Open Science"-we take this opportunity to update and refine the key findings of that paper.
2013 年,人类基因组织伦理、法律和社会委员会(CELS)的一个工作组对基因组测序所引发的关键伦理问题进行了探索。该工作组随后发表的《想象的未来》一文提出了在将基因组生物信息学应用于基因组医学和研究中使用的数据存储库时需要考虑的要点(http://www.hugo-international.org/Resources/Documents/CELS_Article-ImaginedFutures_2014.pdf)。鉴于快速、廉价地对人类基因组进行测序的能力不断增强,以及“大数据”和“开放科学”的趋势,我们借此机会更新和完善该论文的主要发现。