Samples and data accessibility in research biobanks: an explorative survey

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.

Cohort Harmonization and Integrative Analysis From a Biomedical Engineering Perspective

“…For instance, a comprehensive essay centering on issues regarding consent obtaining in biobank studies recognized the need for a defensible, sustainable and conceptually coherent consent policy [61]. Adapting freely given, specific and informed consent along with anonymization mechanisms such that: (i) facilitating the process of dynamic re-consent through the use of Information Technology (IT) providing a transparency level between individuals and their data and, (ii) balancing the need for irreversible anonymization and data linkage and continuing data update, are key issues in the protection of individuals with regard to processing of personal data [60][61][62][63][64][65].…”

Regulatory Landscape of International Direct-to-Participant (DTP) Genomic Research: Time to Untie the Gordian Knot?

“…However, banked samples for rare diseases are often siloed by project and almost impossible for most researchers to access. 5 Furthermore, given the rarity of certain diseases, many specialist referral centers will not observe more than one case caused by mutations in a particular gene. Obtaining the multiple cases required to demonstrate genetic causality requires new approaches, such as having scientists engage in a global partnership with patients, rather than institutions, to collect sufficiently large volumes of either very scarce or representative samples.…”