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.

Open Science and the Science-Society Relationship

“…The risks related to Open Science implementation can be defined as potentially harmful consequences of Open Science and in many cases involve possible risks for research participants, scientists, and funders. Some most common examples are lost authorship, misuse of personal data by scientific institutions or third parties, disruption of privacy, and data utilization for harmful or ethically/religiously unacceptable research (Ahram et al 2013;Capocasa et al 2016;Friesike et al 2015;Joly et al 2015). The risks of Open Science are obviously interconnected with ethical concerns.…”

“…The risks of Open Science are obviously interconnected with ethical concerns. Ethical issues, as well as perceived risks, are most often connected to research collecting highly sensitive data, such as biomedical and genomic research (Capocasa et al 2016;Joly et al 2015). Another segment of research on ethical issues examines how this topic is addressed in science communication in order to inform the public in a proper way (Hendriks et al 2016;Post 2016).…”

“…Prior research in this area emphasises two common concerns. First, although ethics committees usually need to approve research on ethically controversial topics, these committees and their rules depend strongly on legislation, and various approaches towards data sharing and confidentiality may complicate accessing comparable forms of Open Science across countries (Capocasa et al 2016). Second, ethically controversial research has a deteriorating effect on science in reducing willingness to participate in research and to trust in science generally (Ahram et al 2013;Hendriks et al 2016;Majumder et al 2016).…”

Research biobanks: A two-faced future

“…Accessibility to biobank resources is generally conditional on the fulfilment of specific, often very compelling, requirements and seems to be related to three main aspects. 8 The first aspect is the transparency between biobanks and applicants. Particularly, before allowing others to use their own materials, biobanks want to know the scientific aims of applicants.…”

Biobanking in Molecular Biomarker Research for the Early Detection of Cancer

“…As modern biobanks use increasingly advanced technology and automated sample processing, and are often not exclusively established to answer specific research questions, large-scale analysis of these samples can be performed for several purposes, making these biobanks more universally applicable. However, samples from different biobanks cannot always be used and interpreted interchangeably, due to different national governmental guidelines regarding patient and data protection [11], but also due to technical differences between biobanks [12], among other things. Various methods for collecting, processing and storing samples, as well as corresponding data, result in heterogeneity between biobanks [12], which can make it more difficult to compare research results from samples originating from existing biobanks.…”