What happens to patient samples donated for research?
Medicines Discovery Catapult's Helen Hind writes about the millions of blood and tissue samples stored in the UK that are not currently being used to best effect.
Thousands of patients each year give their consent to donate samples (such as blood or tissue) to be used for research, yet the vast majority of these are never used. At the same time 80% of UK life sciences or university spin outs have difficulty in accessing high-quality clinical samples they desperately need for the development of new drugs, diagnostic products and personalised medicines – which will benefit UK patients and generate wealth for UK companies.
There are millions of patient samples in the UK, stored in over 450 large and small biobanks with extensive quality control for their handling and management. The issue is getting the samples to the researchers.
When patients donate their samples to research, through altruism or goodwill, they expect their samples will be used to maximum effect. However, most samples stored in UK biobanks are never used – a shocking fact to patients and donors. While many samples do not match today’s research needs, the majority of patient samples are a valuable resource in developing new products yet are invisible to most UK researchers. This limits their use and the sustainability of the biobanks themselves.
Samples held in biobanks across the UK are hard to find, researchers simply don’t know about them and there is no infrastructure in existence that supports the small companies and the smaller banks. Progress is being made – there has been significant investment in large biobanks (e.g. UK Biobank and Genomics England) – however, more still needs to be done.
Around 70% of SMEs report having to use organisations based outside the UK in order to find the research samples they need. The Medicines Discovery Catapult’s State of the Discovery Nation 2018 report, developed in association with the BioIndustry Association, showed the difficulties SMEs face in locating samples, the speed of access through biobanks, or navigating complex Ethics approvals or other governance issues relating to access and contracting arrangements.
Although a national directory of biobanks and sample collections does exist – the UK Clinical Research Collaboration Tissue Directory and Coordination Centre (UKCRC TDCC) – work by Medicines Discovery Catapult in conjunction with TDCC and the Health Research Authority (HRA) has shown that approximately one third of the 450 ethically approved Research Tissue Banks are listed in the Directory. Despite this being a condition of their approval by HRA since 2015.
To help UK SMEs, Medicines Discovery Catapult has partnered with the TDCC to ensure all HRA approved tissue banks are listed on the Directory, and to add vital information about the biobank’s accessibility and collection on its website. This includes data around the number of sample access requests received by academic or commercial organisations, and of these the number that are approved.
The Medicines Discovery Catapult is also working with Tissue Solutions, a UK supplier of ethically sourced samples, to support UK SMEs with sample access requests and work with UK biobanks to increase the availability of samples for commercial research – which in turn generates income for the biobanks to ensure their long-term sustainability.
It is crucial that biobanks respond to patients’ wishes by making themselves known and available to UK innovators to show patients that they are committed to make the most of their selfless donations, and to help drive drug discovery and personalized medicine in the UK.