For Patients

Patient Expectations

Patients expect that the biospecimens they donate will be used for medical research. Unfortunately, most donated samples remain indefinitely in storage facilities. According to some estimates, only 10 – 15% of samples donated for research are ever used. This lack of biospecimen utilisation is now recognised as a major practical and ethical challenge for biobanking globally (Bledsoe & Grizzle, 2019). One important component of this problem is that biobanks and the samples they contain are not easily discoverable. This is despite the existence of numerous biobank directories. As described in a recent UK report, sometimes biobanks are not listed in these directories, and sometimes their contents are not described adequately (NCRI CM-Path, Improving the discoverability of cancer biobanks, The Bulletin of the Royal College of Pathologists, Number 186, April 2019;  The Issue with Tissue: Recommendations for improving the use of human tissue samples, 2019).

Patients also expect that custodians of their samples (eg. biobanks) will ensure that they are used appropriately. However, if a biobank passes on samples to an intermediary organisation that does not permit sample traceability or tracking, then this will be more difficult to ensure. It is also difficult to see how research results that are significant for patient care, can be returned to the patient in these circumstances. 

Whether patients expect it or not, they do deserve recognition for their donation, and such recognition can only increase the chances of future donations. So Biosample Hub encourages members to include the following citation in any resulting research publications: “This research was possible only because patients have donated their tissue” (Use My Data citation, following on from The Issue with Tissue report of 2019).

Patient Benefits

Biosample Hub helps to ensure that patient expectations are met in two main ways:

(1) Improved biobank discoverability by researchers in biotech and pharma companies who are doing research to develop new drugs, diagnostics and vaccines. This results in less wastage of donated samples. So donors can have greater confidence that their samples will be used productively.

(2) Improved sample traceability, which enables  biobanks to track the samples they provide to the eventual end-user. As a result, donors can have greater confidence that their samples will be used appropriately.

The benefits of improved biobank discoverability and of improved sample traceability are explained in more detail in the sections seen below.

Biobank discoverability

Improved Biobank Discoverability

The Biosample Hub directory helps make academic biobanks more discoverable, specifically for researchers in biotech and pharma companies. It makes a special contribution in this respect, because 100% of biobanks listed in the directory can be expected to work with industry collaborators. This is because listing of biobanks in the Biosample Hub directory is (1) entirely voluntary and (2) for the clearly stated purpose of linking academic biobanks with industry researchers. So by use of the Biosample Hub directory, industry researchers do not waste time contacting biobanks that will not work with industry. When academic biobanks supply samples to biotech and pharma companies, this has the following benefits: firstly unethical stockpiling is reduced, and secondly, valuable research is supported, potentially leading to new and improved drugs, diagnostics and vaccines.

Improved Sample Traceability

Direct and unrestricted communication between sample providers and requesters is a central feature of the Biosample Hub platform. Using the platform, biobankers can speak directly to sample end-users, which improves sample tracking.  As a result, the biobanker can have more confidence that the samples they provide are used appropriately. So this allows the  biobanker to fulfil his or her responsibility as a trusted custodian of the samples.