Abstract
In the framework of the 2007 call to support the preparatory phase of the European biobank infrastructures, the European Commission funded a specific project aiming to prepare a pan-European Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) for biomedical and biological research in Europe and worldwide (Yuille et al. in Brief Bioinform 9:14–24, 2008). This infrastructure, which was to be built on new and existing national networks, resources and technologies, would be specifically complemented by innovative components and would be properly embedded into European ethical, legal and societal frameworks.
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- 1.
During the preparatory phase, the participants in the BBMRI were private and public institutions; during the implementation phase of the BBMRI-ERIC, the partners will be States.
- 2.
Austria, Estonia, Finland, France, Germany, Hungary, Iceland, Ireland, Italy, Malta, Norway, Spain, Sweden, The Netherlands, United Kingdom, Australia, Cyprus, Greece, Faroe Islands, Poland, Portugal, Romania, Saudi Arabia, Slovenia, and Turkey.
- 3.
These two points are examined in detail here as examples; in the final report, the analysis has been done on all six issues.
- 4.
The withdrawal procedure cannot apply to research biobanking in the same way that it applies to clinical research. For biobanking activities, the withdrawal procedure is connected to the level of identification between samples and data. If data are totally anonymised, the withdrawal is not possible, and this information has to be clearly indicated in the information sheet. It is also impossible to withdraw when complex procedures of coding are in place.
- 5.
- 6.
GA2LEN (Global Allergy and Asthma European Network) project, EU-FOOD-CT-2004-506378.
- 7.
- 8.
Eleven countries are currently, or are planned to be, described: Belgium, Denmark, France, Germany, Italy, Norway, Spain, Sweden, Switzerland, The Netherlands, United Kingdom.
- 9.
- 10.
- 11.
EC No 723/2009 of 25 June 2009, OJ L 206, 8.8.2009, p. 1.
- 12.
Research is one of the fields covered by the definition, which can also be applied to therapeutic-use or judicial biobanks.
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Rial-Sebbag, E., Cambon-Thomsen, A. (2015). Governing Biobanks Through a European Infrastructure. In: Mascalzoni, D. (eds) Ethics, Law and Governance of Biobanking. The International Library of Ethics, Law and Technology, vol 14. Springer, Dordrecht. https://doi.org/10.1007/978-94-017-9573-9_11
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