文章基本信息

标题：Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada
本地全文：下载
作者：Jack Teng ; Colene Bentley ; Michael M Burgess 等
期刊名称：International Journal of Population Data Science
电子版ISSN：2399-4908
出版年度：2019
卷号：4
期号：1
页码：1-12
DOI：10.23889/ijpds.v4i1.1103
出版社：Swansea University
摘要：IntroductionResearch using linked data sets can lead to new insights and discoveries that positively impact society. However, the use of linked data raises concerns relating to illegitimate use, privacy, and security (e.g., identity theft, marginalization of some groups). It is increasingly recognized that the public needs to be consulted to develop data access systems that consider both the potential benefits and risks of research. Indeed, there are examples of data sharing projects being derailed because of backlash in the absence of adequate consultation. (e.g., care.data in the UK). Objectives and methodsThis paper describes the results of a public deliberation event held in April 2018 in Vancouver, British Columbia. The purpose of this event was to develop informed and civic-minded public advice regarding the use and the sharing of linked data for research with a focus on the processes and regulations employed to release data. The event brought together 23 members of the public over two weekends. ResultsParticipants developed and voted on 19 policy-relevant statements. Voting results and the rationale behind any disagreements are reported here. Taken together, these statements provide a broad view of public support and concerns regarding the use of linked data sets for research and offer guidance on measures that can be taken to improve the trustworthiness of policies and process around data sharing and use. ConclusionsGenerally, participants were supportive of research using linked data because of the value they provide to society. Participants expressed a desire to see the data access request process made more efficient to facilitate more research, as long as there are adequate protections in place around security and privacy of the data.
关键词：public engagement; public recommendations; data sharing practices; data sharing policies