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DataSHIELD: An ethically robust solution to multiple-site individual-level data analysis

Lookup NU author(s): Emeritus Professor Paul BurtonORCiD, Professor Madeleine Murtagh

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Abstract

© 2014 S. Karger AG, Basel.Background: DataSHIELD (Data Aggregation Through Anonymous Summary-statistics from Harmonised Individual levEL Databases) has been proposed to facilitate the co-analysis of individual-level data from multiple studies without physically sharing the data. In a previous paper, we investigated whether DataSHIELD could protect participant confidentiality in accordance with UK law. In this follow-up paper, we investigate whether DataSHIELD addresses a broader range of ethics-related data-sharing concerns. Methods: Ethics-related data-sharing concerns of Institutional Review Boards, ethics experts, international research consortia and research participants were identified through a literature search and systematically examined at a multidisciplinary workshop to determine whether DataSHIELD proposes mechanisms which can address these concerns. Results: DataSHIELD addresses several ethics-related data-sharing concerns related to privacy, confidentiality, and the protection of the research participant's rights while sharing data and after the data have been shared. The data remain entirely under the direct management of the study that collected them. Data processing commands are strictly supervised, and the data are queried in a protected environment. Issues related to the return of individual research results when data are shared are eliminated; the responsibility for return remains at the study of origin. Conclusion: DataSHIELD can provide an innovative and robust solution for addressing commonly encountered ethics-related data-sharing concerns.

Publication metadata

Author(s): Budin-Ljosne I, Burton P, Isaeva J, Gaye A, Turner A, Murtagh MJ, Wallace S, Ferretti V, Harris JR

Publication type: Article

Publication status: Published

Journal: Public Health Genomics

Year: 2015

Volume: 18

Issue: 2

Pages: 87-96

Print publication date: 01/02/2015

Online publication date: 13/12/2014

Acceptance date: 08/10/2014

ISSN (print): 1662-4246

ISSN (electronic): 1662-8063

Publisher: S. Karger AG

URL: https://doi.org/10.1159/000368959

DOI: 10.1159/000368959

PubMed id: 25532061

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