Who benefits and how? Public expectations of public benefits from data-intensive health research
Who benefits and how? Public expectations of public benefits from data-intensive health research
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DOI：
10.1177/2053951718816724
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发表时间：
2018-12-06
影响因子：
8.5
通讯作者：
Cunningham-Burley, Sarah
中科院分区：
文献类型：
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作者：
Aitken, Mhairi;Porteous, Carol;Cunningham-Burley, Sarah
社会和学术研究工作的数字化引发了人们对人口数据在研究中的潜在用途的兴趣激增。除此之外，人们越来越关注维持研究实践社会许可的必要条件。以往的研究指出了通过研究证明“公共利益”对于维持公众支持的重要性，但很少考虑“公共利益”一词的含义或公众对“公共利益”的期望是什么。为了解决这一紧迫问题，2017 年 5 月和 6 月在苏格兰各地举办了一系列与公众共同商议的研讨会。这些研讨会旨在让苏格兰各阶层民众深入讨论公众（或多个公众）可能从数据密集型健康研究中受益的方式。这里报告的调查结果讨论了研讨会参与者对健康研究的理解和期望；他们认为应该从健康研究中受益的“公众”；他们认为“公众”应该以何种方式受益。研讨会参与者显然倾向于让所有人都能感受到尽可能广泛的公共利益，但他们也承认旨在主要造福社会弱势群体的研究的价值。讨论的一个关键焦点是研讨会参与者对实现潜在公共利益的信心程度。那么一个关键的考虑因素是机制和政治支持在多大程度上到位，以实现和最大化数据密集型健康研究的公共利益。
The digitization of society and academic research endeavours have led to an explosion of interest in the potential uses of population data in research. Alongside this, increasing attention is focussing on the conditions necessary for maintaining a social license for research practices. Previous research has pointed to the importance of demonstrating "public benefits" from research for maintaining public support, yet there has been very little consideration of what the term "public benefits" means or what public expectations of "public benefits" are. In order to address this pressing issue a series of deliberative workshops with members of the public were held across Scotland in May and June 2017. The workshops aimed to engage a cross-section of the Scottish population in in-depth discussions of the ways that the public - or publics - might benefit from data-intensive health research. The findings reported here discuss workshop participants' understandings and expectations of health research; who they considered to be "the public" that should benefit from health research and; in what ways they felt "the public" should benefit. Workshop participants' preference was clearly for the widest possible public benefit to be felt by all, but they also acknowledged the value in research aiming to primarily benefit vulnerable groups within society. A key focus of discussions was the extent to which workshop participants were confident that potential public benefits would be realised. A crucial consideration then is the extent to which mechanisms and political support are in place to realise and maximise the public benefits of data-intensive health research.