Ballantyne Angela, Stewart Cameron
University of Otago, Wellington, New Zealand.
The University of Sydney Law School, Sydney, Australia.
Asian Bioeth Rev. 2019 Sep 30;11(3):315-326. doi: 10.1007/s41649-019-00100-7. eCollection 2019 Sep.
Public-private partnerships (PPPs) are established to specifically harness the potential of Big Data in healthcare and can include partners working across the data chain-producing health data, analysing data, using research results or creating value from data. This domain paper will illustrate the challenges that arise when partners from the public and private sector collaborate to share, analyse and use biomedical Big Data. We discuss three specific challenges for PPPs: working within the social licence, public antipathy to the commercialisation of public sector health data, and questions of ownership, both of the data and any resulting intellectual property or products. As a specific example we consider the case of the UK National Health Service (NHS) providing patient data to Google's DeepMind AI program to develop a diagnostic app for kidney disease. This article is an application of the framework presented in this issue of ABR (Xafis et al. 2019). Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. We use four specific values to help analysis these issues: public benefit, stewardship, transparency and engagement. We demonstrate how the Deliberative Framework can support ethical governance of PPPs involving biomedical big data.
公私合作伙伴关系(PPPs)的建立是为了专门利用医疗保健领域大数据的潜力,其合作伙伴可能涵盖整个数据链上的各方——生成健康数据、分析数据、运用研究成果或从数据中创造价值。本领域论文将阐述公共部门和私营部门的合作伙伴在协作共享、分析和使用生物医学大数据时所面临的挑战。我们讨论公私合作伙伴关系面临的三个具体挑战:在社会许可范围内开展工作、公众对公共部门健康数据商业化的反感,以及数据、任何由此产生的知识产权或产品的所有权问题。作为一个具体例子,我们考虑英国国家医疗服务体系(NHS)向谷歌旗下的深度思维人工智能程序提供患者数据以开发一款肾脏疾病诊断应用程序的案例。本文应用了本期《ABR》(Xafis等人,2019年)中提出的框架。有关该框架的使用方法的更多信息,请参考那篇文章,包括所涉及关键价值观的完整解释以及文末案例研究中所采用的平衡方法。我们使用四个具体价值观来帮助分析这些问题:公共利益、管理、透明度和参与度。我们展示了审议框架如何支持涉及生物医学大数据的公私合作伙伴关系的伦理治理。