Access and Value: How Readily Do Biobanks Share?

A biobank derives value from the biosamples and data contained within the biorepository. In order to maximize value, biobank managers must make these resources available to researchers and foster collaborative studies. Capocasa et al. (2016) investigated how biobanks facilitate this and what restrictions or national legal frameworks operate to regulate the process of sharing samples around the world.¹

Although propagation of knowledge by sharing and collaboration among biobanks and researchers is an accepted goal, there is still the suggestion that some institutions operate secretively, withholding access. Capocasa and coauthors sought to determine how widespread the withholding of data is by surveying biobanks worldwide. Using a questionnaire delivered via Google Forms, the team requested information from 238 biobanks around the world about their process for receiving applications from external researchers and granting access to biosamples and data. From the limited responses they received, the coauthors found that free and unconditional access to biosamples and data is rare.

To develop a list of biobanks for survey, the team used searches on Google, Google Scholar and PubMed to identify biobanks dealing in human biological samples. They used the following keywords or search phrases: “biobank,” “human biobank” and “research biobank.” From this search, they identified 238 biobanks around the world (Europe: 95; Africa: 2; America: 104; Asia: 25; Oceania: 12). Choosing 12 of these for preliminary questionnaire development (only 5 responded), Capocasa et al. conducted email and/or unstructured phone interviews to develop the 21-question survey.

The survey was made up of three sections:

General information on biobank function, type of biosample collection, funding and so on.
Information on biosamples, including collection protocols, legislation affecting biobank management, oversight for ethics issues and sample accessibility management.
Information on data handling, including collection details, regulatory legislation and access by researchers.

Nine of the questions were closed, allowing for statistical analysis of responses, whereas the remaining 12 open-ended questions triggered descriptive classification. The researchers ranked the answers to the open-ended questions according to the clarity and completeness of the information supplied under the following three headings: clear answer, partial answer, and elusive or no answer. They ranked information given in a language other than Italian or English as partial.

The team got a poor response rate from the biobanks surveyed; only 46 out of the pool of 238 (19.3%) replied to the questionnaire (Europe: 26; America: 16; Asia: 2; Oceania: 2). Of these, 58.7% received public funding, with the remainder relying on private funding (for-profit and not-for-profit, 23.9%) or a mixture of public and private (17.4%). Most operated as disease-specific (41.3%), with 17.4% denoting specific tissue types or describing a geographical basis for biosample collection (8.7%). The majority (89.1%) stored both samples and data. However, 52.2% did not accept samples from an outside institution.

In terms of biosample accessibility, 47.8% of the responding biobanks provided informative answers, citing informed consent and national or internal review board governance in conjunction with oversight for legal and ethical issues. The majority (95.7%; 44/46) required researchers to meet specific conditions for access, but only 12 of these biobanks provided clear answers on what these requirements were. The remainder either gave no answer (n = 7) or referred to third-party regulations, including national frameworks.

Three biobanks did not allow access to data, whereas three allowed open access. The remainder required researcher compliance with certain conditions, with 57.1% explaining these through semi-informative partial answers that often referred to third-party approvals.

Where biobanks gave clear answers to explain conditions required for sample and data access, Capocasa et al. found that these frequently included requests for the researcher to explain the purpose and methods of the research, describe funding available and allow coauthorship on publications.

In summary, Capocasa et al. found that although most biobanks gave access to biosamples and data, it was not given freely. Furthermore, biobanks often did not give clear answers or easily accessible information to researchers applying for sample access, suggesting a reluctance to share. The authors noted, however, that full open access was not always desirable, and that barriers should be maintained especially around donor safety and privacy. They advise that further study with a better response rate could give a more inclusive overview of sample and data access in global biobanking.

Reference

1. Capocasa, M., et al. (2016) “Samples and data accessibility in research biobanks: An explorative survey,” PeerJ, 4:e1613. doi: 10.7717/peerj.1613.