Samples and data accessibility in research biobanks: an explorative survey
- Published
- Accepted
- Subject Areas
- Ethical Issues, Science Policy
- Keywords
- open science, data sharing, research ethics, human subjects, biorepository
- Copyright
- © 2015 Capocasa et al.
- Licence
- This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, reproduction and adaptation in any medium and for any purpose provided that it is properly attributed. For attribution, the original author(s), title, publication source (PeerJ PrePrints) and either DOI or URL of the article must be cited.
- Cite this article
- 2015. Samples and data accessibility in research biobanks: an explorative survey. PeerJ PrePrints 3:e1212v1 https://doi.org/10.7287/peerj.preprints.1212v1
Abstract
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.
Author Comment
This is a submission to PeerJ PrePrints.