title: 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.
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.
authors.affiliation: 1 Legal Pathways Institute for Health and Bio-Law , Aerdenhout, the Netherlands .
authors.forename: Jasper Adriaan
authors.initials: JA
authors.lastname: Bovenberg
authors.affiliation: 2 Swiss Tropical and Public Health Institute , Basel, Switzerland .|3 University of Basel, Basel, Switzerland .
authors.forename: Kees
authors.initials: K
authors.lastname: de Hoogh
authors.affiliation: 4 Centre of Genomics and Policy, McGill University , Faculty of Medicine, Department of Human Genetics, Montreal, Canada .
authors.forename: Bartha Maria
authors.initials: BM
authors.lastname: Knoppers
authors.affiliation: 5 Faculty of Medicine, Department of Public Health and General Practice, HUNT Research Centre, Norwegian University of Science and Technology , Trondheim, Norway .
authors.forename: Kristian
authors.initials: K
authors.lastname: Hveem
authors.affiliation: 6 Environmental Epidemiology, Faculty of Medicine, Small Area Health Statistics Unit (SAHSU), School of Public Health, Imperial College London , London, United Kingdom .
authors.forename: Anna L
authors.initials: AL
authors.lastname: Hansell
mesh_terms: D018070:Biological Specimen Banks / Q000331:legislation & jurisprudence* / Q000592:standards; D016494:Computer Security / Q000331:legislation & jurisprudence*; D057286:Electronic Health Records / Q000331:legislation & jurisprudence*; D004781:Environmental Exposure; D005062:European Union / Q000458:organization & administration; D040362:Geographic Information Systems; D006801:Humans