The cost of DNA sequencing has resulted in a surge of genetic data being utilised to improve scientific research, clinical procedures, and healthcare delivery in recent years. Since the human genome can uniquely identify an individual, this characteristic also raises security and privacy concerns. In order to balance the risks and benefits, governance mechanisms including regulatory and ethical controls have been established, which are prone to human errors and create hindrance for collaboration. Over the past decade, technological methods are also catching up that can support critical discoveries responsibly. In this paper, we explore regulations and ethical guidelines and propose our visions of secure/private genomic data storage/processing/sharing platforms. Then, we present some available techniques and a conceptual system model that can support our visions. Finally, we highlight the open issues that need further investigation.
翻译:DNA测序的成本导致近年来利用基因数据来改进科学研究、临床程序和保健服务的激增。由于人类基因组可以独特地识别一个人,这一特征也引起了安全和隐私方面的关切。为了平衡风险和惠益,已经建立了治理机制,包括监管和道德控制,这容易造成人为错误和妨碍合作。过去十年来,技术方法也在追赶能够负责任地支持关键发现的技术方法。在本文件中,我们探索了法规和道德准则,并提出了我们对安全/私人基因组数据储存/处理/共享平台的愿景。然后,我们提出了一些可用技术和概念系统模型,可以支持我们的愿景。最后,我们强调了需要进一步调查的未决问题。