For Patients: Donating Human Tissue Samples For Research

Patients may donate samples of tissue during their medical care. Researchers can use these samples on two conditions. First, the patient has informed consent. Second, the tissue is surplus to diagnostic needs.

Patients Expectations May Not Match Reality

Patients donate tissue samples in the belief they will help medical research. Unfortunately, most donated samples remain forever in storage facilities. As a result, scientists may only get access to 10 – 15% of donated biospecimens. This under-use of biospecimens is a practical and ethical challenge (Bledsoe & Grizzle, 2019).
 
One crucial component of this problem is that it is not easy to find a suitable biobank. This is despite the existence of many biobank directories. A recent UK report found problems with such directories. For example, sometimes biobanks are not listed in these directories. Other times, the description of their contents is inadequate. (Hall et al. The Bulletin of the Royal College of Pathologists, Number 186, April 2019)
 
Patients also expect biobanks who collect their samples to ensure appropriate use. If the biobank passes tissue samples to a broker, this will be more difficult to confirm. If the broker does not allow tracking, then it will be impossible.
 
Patients deserve recognition for their donations. Such recognition can only increase the chances of future contributions. So Biosample Hub encourages members to include the following citation in their publications:
 
“This research was possible only because patients have donated their tissue”.

Biosample Hub Benefits The Biospecimen Donor

Biosample Hub helps meet patient expectations in two main ways:
 
(1) Biosample Hub improves biobank discoverability by researchers in biotech and pharma companies. These researchers use the samples to research new therapies, diagnostics and vaccines. As a result, there is less wastage of donated biosamples. Also, patients can have more confidence that their donations will make a difference.
 
(2) Biosample Hub improves sample traceability. It allows biobanks to track their samples to the eventual end-user. As a result, donors can be more confident about the appropriate use of their samples.
 
The sections below explain the benefits of discoverability and traceability in more detail.
How Biosample Hub benefits the donor of clinical biospecimens for research

Improved Biobank Discoverability

The Biosample Hub directory helps make academic biobanks more discoverable. In particular, it makes them easier to find for biotech and pharma companies. Unlike other directories, 100% of the biobanks listed want to work with industry. We can be sure of this because joining Biosample Hub is voluntary. Also because the only reason for a biobank to join is to work with industry. So the Biosample Hub directory offers industry researchers a unique advantage. They waste no time contacting biobanks that will not work with industry.
 
Academic biobanks that supply biospecimens to biotech and pharma companies have several benefits. First, they avoid unethical stockpiling of samples. Also, they support research that may lead to improved therapeutics, diagnostics or vaccines.
Making biobank providers of human tissue samples more discoverable

Improved Sample Traceability

A central feature of the Biosample Hub platform is direct communication between biobanks and companies. Biobanks using the platform speak directly to sample end-users. This improves sample tracking. As a result, the biobank can make sure about the appropriate use of their samples. So this allows the biobank to fulfil its responsibility as a trusted custodian.

Making human tissue samples more discoverable