Samples and data accessibility in research biobanks: an explorative survey

Abstract

1Biobanks hold human biological samples and/or data giving a crucial contribution to the progress 2 of biomedical research. However, the effective and efficient exploitation of these resources 3 depends on their accessibility. In fact, making bio-resources promptly accessible to all, can 4 favour collaboration among research groups as well as multidisciplinarity. Although this has 5 become a rather common belief, several laboratories still apply secrecy and withholding of 6 samples and data. In this study we conducted a questionnaire based survey in order to investigate 7 sample and data accessibility in research biobanks operating all over the world. 46 out of the 238 8 contacted biobanks have decided to participate. Most of them provide permission to access their 9 samples (95.7%) and data (85.4%), but free and unconditioned accessibility seems not to be a 10 common practice. The analysis of the biobanks guidelines regarding the accessibility of their 11 resources reveal the importance of three aspects: (i) request for applicants to explain what they 12 would like to do with the required resources; (ii) the role of funding, public or private, in the 13 establishment of fruitful collaborations between biobanks and research labs; (iii) request of co-14 authorship in order to give access to their data. These results suggest that economic and academic 15 aspects are involved in determining the extent of sharing of samples and data stored in biobanks. 16As a second step of this study, we investigated the reasons behind the high diversity of the 17 requirements for accessing to biobanks' resources. The analysis of informative answers suggested 18 that the different modalities of resource accessibility seem to be largely influenced by both social 19 context and legislation of the countries where biobanks operate. 20 21Keywords: open science, data sharing, human subjects, research ethics, biorepository. 22 23PeerJ PrePrints | https://dx.doi.org/10.7287/peerj.preprints.1212v1 | CC-BY 4.0 Open Access |

Biobank Personnel — The Key to its Success

“…Specialised biobanks, which focus on collecting samples and data on a given disease, can have a significant impact on the progress of research in that areafor example, studies on rare or oncologic diseases go hand-in-hand with the development of personalised medicine, targeted therapies and omics analyses. 4,[10][11][12][13] Sourcing and collecting the required amount of research material is a time-consuming process that can significantly delay an individual researcher's studies if they have to undertake this onerous task independently. Hence, cooperation with biobanks on this aspect of a study can greatly support and accelerate the initiation of the research process.…”

“…Specialised biobanks, which focus on collecting samples and data on a given disease, can have a significant impact on the progress of research in that area — for example, studies on rare or oncologic diseases go hand-in-hand with the development of personalised medicine, targeted therapies and omics analyses. 4,10–13…”

Features of the Activity of Biological Banks: World Practice

“…[12][13][14]. Разработка критериев включения или исключения во время забора образцов привела к созданию эпидемиологических биобанков (заболеваний, включая редко встречающие заболевания) с целью определение рисков для здоровья человека [8][9][10][15][16][17][18][19][20][21][22].…”