Society and Ethics Research Group, Wellcome Genome Campus, Hinxton, UK.
Institute of Public Health, University of Cambridge, Cambridge, UK.
Alzheimers Res Ther. 2020 Jan 31;12(1):17. doi: 10.1186/s13195-020-0584-y.
Research into Alzheimer's disease and other dementias increasingly involves large-scale data-sharing initiatives. The development of novel digital tools and assessments is likely to increase the need for these. This presents ethics and governance challenges to ensure the use of these data is able to maximise the benefit to patients and the public.
We consider the challenges associated with informed consent and governance in the context of dementia research. We set out the potential of novel data governance approaches for the future of data sharing for dementia. The data trust model proposed in discussions of data governance may have potentially valuable application for dementia research. Such inclusive approaches to trustworthy data governance should be considered as data-sharing initiatives are established and develop.
阿尔茨海默病和其他痴呆症的研究越来越多地涉及大规模的数据共享计划。新型数字工具和评估的开发可能会增加对这些工具的需求。这给确保这些数据的使用能够使患者和公众最大程度受益带来了伦理和治理方面的挑战。
我们考虑了在痴呆症研究背景下与知情同意和治理相关的挑战。我们阐述了新型数据治理方法在痴呆症数据共享未来的潜力。在数据治理的讨论中提出的数据信托模型可能对痴呆症研究具有潜在的应用价值。在建立和发展数据共享计划时，应考虑这种将数据治理建立在信任基础上的包容性方法。
