Please use this identifier to cite or link to this item: http://hdl.handle.net/2381/28966
Title: Protecting personal data in epidemiological research : DataSHIELD and UK Law
Authors: Wallace, Susan E.
Gaye, A.
Shoush, O.
Burton, P. R.
First Published: 28-Mar-2014
Publisher: Karger
Citation: Public Health Genomics, 2014, 17 (3), pp. 149 - 157
Abstract: 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.
DOI Link: 10.1159/000360255
ISSN: 1662-4246
eISSN: 1662-8063
Links: http://www.karger.com/Article/FullText/360255
http://hdl.handle.net/2381/28966
Version: Publisher Version
Status: Peer-reviewed
Type: Journal Article
Rights: Th is is an Open Access article licensed under the terms of the Creative Commons Attribution-NonCommercial 3.0 Unported license (CC BY-NC) (www.karger.com/OA-license), applicable to the online version of the article only. Distribution permitted for non-commercial purposes only.
Appears in Collections:Published Articles, Dept. of Health Sciences

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