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Lookup NU author(s): Professor Paul BurtonORCiD
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).
Background: Data from individual collections, such as biobanks and cohort studies, are now being shared in order to create combined datasets which can be queried to ask complex scientific questions. But this sharing must be done with due regard for data protection principles. DataSHIELD is a new technology that queries nonaggregated, individual-level data in situ but returns query data in an anonymous format. This raises questions of the ability of DataSHIELD to adequately protect participant confidentiality. Methods: An ethico-legal analysis was conducted that examined each step of the DataSHIELD process from the perspective of UK case law, regulations, and guidance. Results: DataSHIELD reaches agreed UK standards of protection for the sharing of biomedical data. All direct processing of personal data is conducted within the protected environment of the contributing study; participating studies have scientific, ethics, and data access approvals in place prior to the analysis; studies are clear that their consents conform with this use of data, and participants are informed that anonymisation for further disclosure will take place. Conclusion: DataSHIELD can provide a flexible means of interrogating data while protecting the participants' confidentiality in accordance with applicable legislation and guidance. © 2014 S. Karger AG, Basel.
Author(s): Wallace SE, Gaye A, Shoush O, Burton PR
Publication type: Article
Publication status: Published
Journal: Public Health Genomics
Online publication date: 01/06/2014
Acceptance date: 01/01/1900
Date deposited: 27/02/2018
ISSN (print): 1662-4246
ISSN (electronic): 1662-8063
Publisher: S. Karger AG
PubMed id: 24685519
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