Don't Take It Personal: European Union Legal Aspects of Procuring and Protecting Environmental Exposure Data in Population Biobanks Through the Use of a Geo-Information-Systems Toolkit

Jasper Adriaan Bovenberg*, Kees De Hoogh, Bartha Maria Knoppers, Kristian Hveem, Anna L. Hansell

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

2 Citations (Scopus)

Abstract

Under European Union (EU) law, population-based cohort studies have the right to collect environmental data and to access geospatial data, at street level, on the web, from a host of public sources. As to geospatial information, they should be able to avail themselves of Member States' networks of services for geospatial data sets and services (discovery, viewing, downloading) via the Internet. On the other hand, linkage of health data of biobank participants to environmental data, using geospatial data, is limited, as it must satisfy the provisions of the EU Directive on the Protection of Personal Data, pursuant to which geospatial data regarding biobank participants are likely to qualify as personal data. Hence, we submit that the consents of biobank participants be reviewed to assess whether they cover the generation and linkage of geospatial data. We also submit that biobanks must have measures in place to prevent the re-identification of participants by use of their geospatial data. We present a model Geographic-Information-Systems (GIS) Toolkit, as an example of what measures could be taken to that effect.

Original languageEnglish
Pages (from-to)217-223
Number of pages7
JournalBiopreservation and Biobanking
Volume14
Issue number3
DOIs
Publication statusPublished - Jun 2016
Externally publishedYes

Bibliographical note

Funding Information:
The research leading to these results was supported by the Biobank Standardisation and Harmonisation for Research Excellence in the European Union (BioSHaRE-EU) program that received funding from the European Union Seventh Framework Program (FP7/2007-2013) under grant agreement No. 261433.

Publisher Copyright:
© Copyright 2016, Mary Ann Liebert, Inc.

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