title: Samples and data accessibility in research biobanks: an explorative survey.
abstract: Biobanks, which contain human biological samples and/or data, provide a crucial contribution to the progress of biomedical research. However, the effective and efficient use of biobank resources depends on their accessibility. In fact, making bio-resources promptly accessible to everybody may increase the benefits for society. Furthermore, optimizing their use and ensuring their quality will promote scientific creativity and, in general, contribute to the progress of bio-medical research. Although this has become a rather common belief, several laboratories are still secretive and continue to withhold 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. The survey involved a total of 46 biobanks. Most of them gave permission to access their samples (95.7%) and data (85.4%), but free and unconditioned accessibility seemed not to be common practice. The analysis of the guidelines regarding the accessibility to resources of the biobanks that responded to the survey highlights three issues: (i) the request for applicants to explain what they would like to do with the resources requested; (ii) the role of funding, public or private, in the establishment of fruitful collaborations between biobanks and research labs; (iii) the 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 sample and data sharing stored in biobanks. As a second step of this study, we investigated the reasons behind the high diversity of requirements to access biobank 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 the biobanks operate.
authors.affiliation: Istituto Italiano di Antropologia, Rome, Italy.
authors.forename: Marco
authors.initials: M
authors.lastname: Capocasa
authors.affiliation: Istituto Italiano di Antropologia, Rome, Italy.|Department of Environmental Biology, Sapienza University of Rome, Rome, Italy.
authors.forename: Paolo
authors.initials: P
authors.lastname: Anagnostou
authors.affiliation: Charité Comprehensive Cancer Center, Berlin, Germany.
authors.forename: Flavio
authors.initials: F
authors.lastname: D'Abramo
authors.affiliation: Istituto Italiano di Antropologia, Rome, Italy.
authors.forename: Giulia
authors.initials: G
authors.lastname: Matteucci
authors.affiliation: Istituto Italiano di Antropologia, Rome, Italy.|Department of Environmental Biology, Sapienza University of Rome, Rome, Italy.
authors.forename: Valentina
authors.initials: V
authors.lastname: Dominici
authors.affiliation: Istituto Italiano di Antropologia, Rome, Italy.|Department of Environmental Biology, Sapienza University of Rome, Rome, Italy.
authors.forename: Giovanni
authors.initials: G
authors.lastname: Destro Bisol
authors.affiliation: Istituto Italiano di Antropologia, Rome, Italy.|Department of Environmental Biology, Sapienza University of Rome, Rome, Italy.
authors.forename: Fabrizio
authors.initials: F
authors.lastname: Rufo
keywords: Biorepository; Data sharing; Human subjects; Open science; Research ethics