Capocasa et al - Research biobanks Providing information and sharing resources Isita Conference presentation 19-05-2015

Abstract

<p>Biobanks hold human biological samples and/or data giving a crucial contribution to the progress of<br>biomedical research. However, the effective and efficient exploitation of these resources depends on their accessibility. In fact, making bioresources promptly accessible to all, collaboration among research groups and multidisciplinarity are encouraged. 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. Three aspects are mainly considered in the biobanks guidelines as information needed in order to gain access to their resources: (i) request for applicants to explain what they would like to do with the required resources; (ii) the role of origin of research funds in the establishment of fruitful collaborations between biobanks and research labs; (iii) request of coauthorship 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 for the observed high heterogeneity of the requirements for the access to the biobanks’ resources. The analysis of informative answers suggested that the different<br>modalities of resource accessibility seem to be highly influenced by social context and legislations of the<br>countries where biobanks operate.</p

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