| Autor: |
Kongsholm NCH; 1 Section of Philosophy, Department of Media, Cognition, and Communication, University of Copenhagen , Copenhagen, Denmark ., Christensen ST; 2 Section of Cell Biology and Physiology, Department of Biology, University of Copenhagen , Copenhagen, Denmark ., Hermann JR; 3 Center for Advanced Studies in Biomedical Innovation Law (CeBIL), University of Copenhagen , Copenhagen, Denmark ., Larsen LA; 4 Department of Cellular and Molecular Medicine, University of Copenhagen , Copenhagen, Denmark ., Minssen T; 3 Center for Advanced Studies in Biomedical Innovation Law (CeBIL), University of Copenhagen , Copenhagen, Denmark ., Pedersen LB; 2 Section of Cell Biology and Physiology, Department of Biology, University of Copenhagen , Copenhagen, Denmark ., Rajam N; 5 Center for Information and Innovation Law (CIIR), University of Copenhagen , Copenhagen, Denmark ., Tommerup N; 4 Department of Cellular and Molecular Medicine, University of Copenhagen , Copenhagen, Denmark ., Tupasela A; 6 Faculty of Health and Medical Sciences, University of Copenhagen , Copenhagen, Denmark ., Schovsbo J; 5 Center for Information and Innovation Law (CIIR), University of Copenhagen , Copenhagen, Denmark . |
| Abstrakt: |
Most university biobanks begin like other university research projects, that is, with an idea conceived by an individual researcher in pursuit of his/her own research interests, publications, funding, and career. Some biobanks, however, come to have scientific value that goes beyond the projects that were initially responsible for the collection of the samples and data they contain. Such value may derive from among other things the uniqueness of the samples in terms of their sheer volume, the quality of the samples, the ability to link the samples with information retrieved in disease registries, or the fact that the samples represent very rare diseases. This article focuses on biobanks of this kind, and the special obligations that publicly funded universities have to ensure the sustainability of biobanks with continued scientific value. We argue that universities should adopt policies to deal with the various, diverse issues which may arise during the lifecycle of a biobank. The policies should be flexible, accommodate the freedoms of individual researchers, and reflect the multifaceted nature of biobanks. Yet they should be specific enough to provide guidance and robust enough to safeguard legal norms and ethical values. The article sets out concrete recommendations which universities should consider and act upon. |
