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基因组研究背景下云计算服务中的公私合作伙伴关系

Public-Private Partnerships in Cloud-Computing Services in the Context of Genomic Research.

作者信息

Granados Moreno Palmira, Joly Yann, Knoppers Bartha Maria

机构信息

Centre of Genomics and Policy, McGill University , Montreal, QC , Canada.

出版信息

Front Med (Lausanne). 2017 Jan 20;4:3. doi: 10.3389/fmed.2017.00003. eCollection 2017.

Abstract

Public-private partnerships (PPPs) have been increasingly used to spur and facilitate innovation in a number of fields. In healthcare, the purpose of using a PPP is commonly to develop and/or provide vaccines and drugs against communicable diseases, mainly in developing or underdeveloped countries. With the advancement of technology and of the area of genomics, these partnerships also focus on large-scale genomic research projects that aim to advance the understanding of diseases that have a genetic component and to develop personalized treatments. This new focus has created new forms of PPPs that involve information technology companies, which provide computing infrastructure and services to store, analyze, and share the massive amounts of data genomic-related projects produce. In this article, we explore models of PPPs proposed to handle, protect, and share the genomic data collected and to further develop genomic-based medical products. We also identify the reasons that make these models suitable and the challenges they have yet to overcome. To achieve this, we describe the details and complexities of MSSNG, International Cancer Genome Consortium, and 100,000 Genomes Project, the three PPPs that focus on large-scale genomic research to better understand the genetic components of autism, cancer, rare diseases, and infectious diseases with the intention to find appropriate treatments. Organized as PPP and employing cloud-computing services, the three projects have advanced quickly and are likely to be important sources of research and development for future personalized medicine. However, there still are unresolved matters relating to conflicts of interest, commercialization, and data control. Learning from the challenges encountered by past PPPs allowed us to establish that developing guidelines to adequately manage personal health information stored in clouds and ensuring the protection of data integrity and privacy would be critical steps in the development of future PPPs.

摘要

公私合作伙伴关系(PPPs)已越来越多地用于刺激和促进多个领域的创新。在医疗保健领域,采用公私合作伙伴关系的目的通常是研发和/或提供针对传染病的疫苗和药物,主要是在发展中国家或欠发达国家。随着技术和基因组学领域的进步,这些合作伙伴关系还专注于大规模基因组研究项目,旨在增进对具有遗传成分的疾病的了解,并开发个性化治疗方法。这种新的关注点催生了公私合作伙伴关系的新形式,其中涉及信息技术公司,这些公司提供计算基础设施和服务,以存储、分析和共享基因组相关项目产生的大量数据。在本文中,我们探讨了为处理、保护和共享所收集的基因组数据以及进一步开发基于基因组的医疗产品而提出的公私合作伙伴关系模式。我们还确定了使这些模式适用的原因以及它们尚未克服的挑战。为实现这一目标,我们描述了MSSNG、国际癌症基因组联盟和“十万基因组计划”的细节和复杂性,这三个公私合作伙伴关系专注于大规模基因组研究,以更好地了解自闭症、癌症、罕见疾病和传染病的遗传成分,旨在找到合适的治疗方法。这三个项目以公私合作伙伴关系的形式组织并采用云计算服务,进展迅速,很可能成为未来个性化医疗研发的重要来源。然而,在利益冲突、商业化和数据控制方面仍存在未解决的问题。从过去公私合作伙伴关系所遇到的挑战中吸取教训,我们确定制定准则以充分管理存储在云端的个人健康信息并确保数据完整性和隐私保护将是未来公私合作伙伴关系发展的关键步骤。

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