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共享用于研究的关联数据集:加拿大不列颠哥伦比亚省一次公众参与审议活动的结果

Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada.

作者信息

Teng Jack, Bentley Colene, Burgess Michael M, O'Doherty Kieran C, McGrail Kimberlyn M

机构信息

Population Data BC, University of British Columbia, 201-2206 East Mall, Vancouver, BC, V6T 1Z3 Canada.

Canadian Centre for Applied Research in Cancer Control, BC Cancer, 675 West 10th Ave., Vancouver, BC, V5Z1L3, Canada.

出版信息

Int J Popul Data Sci. 2019 May 7;4(1):1103. doi: 10.23889/ijpds.v4i1.1103.


DOI:10.23889/ijpds.v4i1.1103
PMID:34095532
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8142623/
Abstract

INTRODUCTION: Research 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 METHODS: This 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. RESULTS: Participants 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. CONCLUSIONS: Generally, 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.

摘要

引言:使用关联数据集进行的研究能够带来新的见解和发现,对社会产生积极影响。然而,关联数据的使用引发了对非法使用、隐私和安全(如身份盗窃、某些群体被边缘化)等问题的担忧。人们越来越认识到,需要征求公众意见,以开发既能考虑研究潜在益处又能顾及风险的数据访问系统。事实上,有一些数据共享项目因在缺乏充分协商的情况下遭到强烈反对而受阻(如英国的care.data项目)。 目标与方法:本文描述了2018年4月在不列颠哥伦比亚省温哥华市举行的一次公众审议活动的结果。该活动的目的是就关联数据用于研究的使用和共享制定明智且具有公民意识的公众建议,重点关注数据发布所采用的流程和规定。该活动在两个周末召集了23名公众成员。 结果:参与者制定了19条与政策相关的声明并进行了投票。此处报告了投票结果以及任何分歧背后的理由。总体而言,这些声明广泛反映了公众对使用关联数据集进行研究的支持和关切,并为可采取的措施提供了指导,以提高围绕数据共享和使用的政策及流程的可信度。 结论:总体而言,由于关联数据为社会带来的价值,参与者支持使用关联数据进行研究。参与者表示,只要在数据安全和隐私方面有足够的保护措施,希望看到数据访问请求流程更加高效,以促进更多研究。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/86df/8142623/322c22ac5c1d/ijpds-04-1103-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/86df/8142623/322c22ac5c1d/ijpds-04-1103-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/86df/8142623/322c22ac5c1d/ijpds-04-1103-g001.jpg

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本文引用的文献

[1]
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Int J Popul Data Sci. 2019-2-12

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Investigating the Extent to Which Patients Should Control Access to Patient Records for Research: A Deliberative Process Using Citizens' Juries.

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