Charlebois Kathleen, Palmour Nicole, Knoppers Bartha Maria
Centre of Genomics and Policy, Faculty of Medicine/Department of Human Genetics, McGill University, Montréal, Québec, Canada.
PLoS One. 2016 Oct 18;11(10):e0164347. doi: 10.1371/journal.pone.0164347. eCollection 2016.
This study aims to understand the influence of the ethical and legal issues on cloud computing adoption in the field of genomics research. To do so, we adapted Diffusion of Innovation (DoI) theory to enable understanding of how key stakeholders manage the various ethical and legal issues they encounter when adopting cloud computing. Twenty semi-structured interviews were conducted with genomics researchers, patient advocates and cloud service providers. Thematic analysis generated five major themes: 1) Getting comfortable with cloud computing; 2) Weighing the advantages and the risks of cloud computing; 3) Reconciling cloud computing with data privacy; 4) Maintaining trust and 5) Anticipating the cloud by creating the conditions for cloud adoption. Our analysis highlights the tendency among genomics researchers to gradually adopt cloud technology. Efforts made by cloud service providers to promote cloud computing adoption are confronted by researchers' perpetual cost and security concerns, along with a lack of familiarity with the technology. Further underlying those fears are researchers' legal responsibility with respect to the data that is stored on the cloud. Alternative consent mechanisms aimed at increasing patients' control over the use of their data also provide a means to circumvent various institutional and jurisdictional hurdles that restrict access by creating siloed databases. However, the risk of creating new, cloud-based silos may run counter to the goal in genomics research to increase data sharing on a global scale.
本研究旨在了解伦理和法律问题对基因组学研究领域采用云计算的影响。为此,我们采用了创新扩散(DoI)理论,以理解关键利益相关者在采用云计算时如何管理他们遇到的各种伦理和法律问题。我们对基因组学研究人员、患者权益倡导者和云服务提供商进行了20次半结构化访谈。主题分析产生了五个主要主题:1)适应云计算;2)权衡云计算的优势和风险;3)协调云计算与数据隐私;4)维持信任;5)通过创造采用云计算的条件来预见云计算。我们的分析突出了基因组学研究人员逐渐采用云技术的趋势。云服务提供商为促进云计算采用所做的努力,面临着研究人员对成本和安全的持续担忧,以及对该技术缺乏熟悉度的问题。在这些担忧背后,更深层次的是研究人员对存储在云端的数据所承担的法律责任。旨在增强患者对其数据使用控制权的替代同意机制,也提供了一种手段,来规避因创建孤立数据库而限制访问的各种机构和管辖权障碍。然而,创建新的基于云的孤立数据库的风险,可能与基因组学研究中在全球范围内增加数据共享的目标背道而驰。