关于生物医学研究中动态同意的思考：迄今为止的故事。
Reflections on dynamic consent in biomedical research: the story so far.
机构信息
Centre for Health, Law and Emerging Technologies, Faculty of Law, University of Oxford, Oxford, UK.
Health, Law and Emerging Technologies, Melbourne Law School, University of Melbourne, Carlton, VIC, Australia.
出版信息
Eur J Hum Genet. 2021 Apr;29(4):649-656. doi: 10.1038/s41431-020-00771-z. Epub 2020 Nov 28.
Dynamic consent (DC) was originally developed in response to challenges to the informed consent process presented by participants agreeing to 'future research' in biobanking. In the past 12 years, it has been trialled in a number of different projects, and examined as a new approach for consent and to support patient engagement over time. There have been significant societal shifts during this time, namely in our reliance on digital tools and the use of social media, as well as a greater appreciation of the integral role of patients in biomedical research. This paper reflects on the development of DC to understand its importance in an age where digital health is becoming the norm and patients require greater oversight and control of how their data may be used in a range of settings. As well as looking back, it looks forwards to consider how DC could be further utilised to enhance the patient experience and address some of the inequalities caused by the digital divide in society.
动态同意（DC）最初是为了应对生物库中参与者同意“未来研究”时对知情同意过程提出的挑战而开发的。在过去的 12 年中，它已经在许多不同的项目中进行了试验，并被视为一种新的同意方式，以支持患者随着时间的推移参与。在此期间，社会发生了重大转变，例如我们对数字工具的依赖以及社交媒体的使用，以及对患者在生物医学研究中不可或缺作用的认识不断提高。本文回顾了 DC 的发展历程，以了解其在数字健康成为常态的时代的重要性，在这个时代，患者需要对其数据在各种环境中的使用方式进行更多的监督和控制。本文不仅回顾过去，还展望未来，探讨如何进一步利用 DC 来改善患者体验，并解决社会数字鸿沟造成的一些不平等问题。
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