HeLEX, Department of Public Health, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LF, UK.
Nat Rev Genet. 2012 Apr 3;13(5):371-6. doi: 10.1038/nrg3218.
Advances in computing technology and bioinformatics mean that medical research is increasingly characterized by large international consortia of researchers that are reliant on large data sets and biobanks. These trends raise a number of challenges for obtaining consent, protecting participant privacy concerns and maintaining public trust. Participant-centred initiatives (PCIs) use social media technologies to address these immediate concerns, but they also provide the basis for long-term interactive partnerships. Here, we give an overview of this rapidly moving field by providing an analysis of the different PCI approaches, as well as the benefits and challenges of implementing PCIs.
计算技术和生物信息学的进步意味着，医学研究越来越具有大型国际研究人员联盟的特点，这些联盟依赖于大型数据集和生物库。这些趋势给获得同意、保护参与者隐私问题和维护公众信任带来了一些挑战。以参与者为中心的举措（PCIs）利用社交媒体技术来解决这些紧迫的问题，但它们也为长期的互动伙伴关系提供了基础。在这里，我们通过分析不同的 PCI 方法，以及实施 PCI 的好处和挑战，概述了这个快速发展的领域。
