Sample, data use and protection in biobanking in Europe: legal issues.
The sharing of samples and data stored in biobanks for research has implications for donor privacy, but also raises questions on the regulation of research within Europe. Many legal documents and principles within Europe, with a direct impact on biobanking, have not been developed specifically to su...
| Main Authors: | , , , , |
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| Format: | Journal article |
| Language: | English |
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2008
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| _version_ | 1797083209135030272 |
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| author | Zika, E Schulte In den Bäumen, T Kaye, J Brand, A Ibarreta, D |
| author_facet | Zika, E Schulte In den Bäumen, T Kaye, J Brand, A Ibarreta, D |
| author_sort | Zika, E |
| collection | OXFORD |
| description | The sharing of samples and data stored in biobanks for research has implications for donor privacy, but also raises questions on the regulation of research within Europe. Many legal documents and principles within Europe, with a direct impact on biobanking, have not been developed specifically to support this activity. Moreover, while some new regulations have been set up at national level, there are many variations in the definitions, scope and purpose of these legal instruments. This has resulted in unnecessary hurdles for genome-based research, particularly if samples are shared across national borders. The question is also raised on whether new, specific legislative and governance frameworks designed for biobanking are needed, or whether it is sufficient to modify current general law and to develop specific guidelines, or to accommodate issues raised by biobanking in the current regulation. A workshop with experts from academia and industry, lawyers, national data protection authorities, representatives from the European Commission and the European Data Protection Supervisor was held to review the existing legal bottlenecks and future needs of biobanking, with special regard to the collection, exchange and linkage of samples and data. This report presents highlights of the presentations and discussions from the workshop held in Sevilla, Spain, in March 2007 and the conclusions that followed. The workshop focused on the internal linkage of data and samples stored in a biobank, and the external linkage of biobanks with secondary information resources, such as cancer registries. |
| first_indexed | 2024-03-07T01:38:28Z |
| format | Journal article |
| id | oxford-uuid:9602015b-2ae6-4a8e-9fbf-a64fcf3c153b |
| institution | University of Oxford |
| language | English |
| last_indexed | 2024-03-07T01:38:28Z |
| publishDate | 2008 |
| record_format | dspace |
| spelling | oxford-uuid:9602015b-2ae6-4a8e-9fbf-a64fcf3c153b2022-03-26T23:50:08ZSample, data use and protection in biobanking in Europe: legal issues.Journal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:9602015b-2ae6-4a8e-9fbf-a64fcf3c153bEnglishSymplectic Elements at Oxford2008Zika, ESchulte In den Bäumen, TKaye, JBrand, AIbarreta, DThe sharing of samples and data stored in biobanks for research has implications for donor privacy, but also raises questions on the regulation of research within Europe. Many legal documents and principles within Europe, with a direct impact on biobanking, have not been developed specifically to support this activity. Moreover, while some new regulations have been set up at national level, there are many variations in the definitions, scope and purpose of these legal instruments. This has resulted in unnecessary hurdles for genome-based research, particularly if samples are shared across national borders. The question is also raised on whether new, specific legislative and governance frameworks designed for biobanking are needed, or whether it is sufficient to modify current general law and to develop specific guidelines, or to accommodate issues raised by biobanking in the current regulation. A workshop with experts from academia and industry, lawyers, national data protection authorities, representatives from the European Commission and the European Data Protection Supervisor was held to review the existing legal bottlenecks and future needs of biobanking, with special regard to the collection, exchange and linkage of samples and data. This report presents highlights of the presentations and discussions from the workshop held in Sevilla, Spain, in March 2007 and the conclusions that followed. The workshop focused on the internal linkage of data and samples stored in a biobank, and the external linkage of biobanks with secondary information resources, such as cancer registries. |
| spellingShingle | Zika, E Schulte In den Bäumen, T Kaye, J Brand, A Ibarreta, D Sample, data use and protection in biobanking in Europe: legal issues. |
| title | Sample, data use and protection in biobanking in Europe: legal issues. |
| title_full | Sample, data use and protection in biobanking in Europe: legal issues. |
| title_fullStr | Sample, data use and protection in biobanking in Europe: legal issues. |
| title_full_unstemmed | Sample, data use and protection in biobanking in Europe: legal issues. |
| title_short | Sample, data use and protection in biobanking in Europe: legal issues. |
| title_sort | sample data use and protection in biobanking in europe legal issues |
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