Toggle Main Menu Toggle Search

Open Access padlockePrints

Protecting Personal Data in Epidemiological Research: DataSHIELD and UK Law

Lookup NU author(s): Professor Paul Burton

Downloads


Licence

This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).


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. © 2014 S. Karger AG, Basel.


Publication metadata

Author(s): Wallace SE, Gaye A, Shoush O, Burton PR

Publication type: Article

Publication status: Published

Journal: Public Health Genomics

Year: 2014

Volume: 17

Issue: 3

Pages: 149-157

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

URL: https://doi.org/10.1159/000360255

DOI: 10.1159/000360255

PubMed id: 24685519


Altmetrics

Altmetrics provided by Altmetric


Actions

Find at Newcastle University icon    Link to this publication


Share