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Capocasa M, Anagnostou P, D'Abramo F, Matteucci G, Dominici V, Destro Bisol G, Rufo F.2015. Samples and data accessibility in research biobanks: an explorative survey. PeerJ PrePrints3:e1212v1https://doi.org/10.7287/peerj.preprints.1212v1
Biobanks hold human biological samples and/or data giving a crucial contribution to the progress of biomedical research. However, the effective and efficient exploitation of these resources depends on their accessibility. In fact, making bio-resources promptly accessible to all, can favour collaboration among research groups as well as multidisciplinarity. Although this has become a rather common belief, several laboratories still apply secrecy and withholding of samples and data. In this study we conducted a questionnaire based survey in order to investigate sample and data accessibility in research biobanks operating all over the world. 46 out of the 238 contacted biobanks have decided to participate. Most of them provide permission to access their samples (95.7%) and data (85.4%), but free and unconditioned accessibility seems not to be a common practice. The analysis of the biobanks guidelines regarding the accessibility of their resources reveal the importance of three aspects: (i) request for applicants to explain what they would like to do with the required resources; (ii) the role of funding, public or private, in the establishment of fruitful collaborations between biobanks and research labs; (iii) request of co-authorship in order to give access to their data. These results suggest that economic and academic aspects are involved in determining the extent of sharing of samples and data stored in biobanks. As a second step of this study, we investigated the reasons behind the high diversity of the requirements for accessing to biobanks’ resources. The analysis of informative answers suggested that the different modalities of resource accessibility seem to be largely influenced by both social context and legislation of the countries where biobanks operate.
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