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Biobanks and governance

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Title Biobanks and governance
Period 01 / 2009 - unknown
Status Completed
Research number OND1334007
Data Supplier Website CSG

Abstract

Involvement in biobanks governance: Putting all questions on the table Genomics is big science. Information on and tissue samples of large groups of patients and healthy individuals are necessary to conduct medical genomics studies. More and more, these data are stored in biobanks or databases. Data exchange between biobanks and between researchers that use those biobanks is now being enabled on a large scale. This will create cross-border networks of biobanks filled with biological material and personal information. Discussions on the future of biobanks usually concentrate on a limited number of well-known themes: privacy, informed consent, intellectual property and commercialization. But are these themes covering all issues involved or should other issues be included as well? Researchers in this project will trace these themes related to biobanks. They will attend scientific meetings; visit the European Parliament and interview people who have donated materials or information to biobanks. It is important to reveal how issues enter the agendas, but also how they disappear from them. The researchers will also study how they themselves can broaden the discussion. The overall objective of the project is to contribute to socially responsible governance of biobanks.

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Project leader Prof.dr.ir. G.H. de Vries

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