|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.|
|Publication Type||Journal Article|
|Year of Publication||2016|
|Authors||Bovenberg JAdriaan, de Hoogh K, Knoppers BMaria, Hveem K, Hansell AL|
|Date Published||2016 Jun|
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.
|Alternate Journal||Biopreserv Biobank|