Making use of surplus or donated tissue in fight against diseases

The concept is simple: patients and healthy people donate samples or surplus tissue (perhaps from tumours or biopsies) and these biomaterials are stored along with the relevant clinical data. Then researchers can apply to use the banked tissue and data to help develop more effective ways to diagnose and treat the relevant condition.

When it comes to biomedical research, biobanks make sense.

In practice, though, running a biobank effectively is anything but simple. From getting the appropriate and timely consent to ensuring patient privacy and maintaining the quality of the samples for research, it is a process that needs forethought, resources and organisation.

In Ireland, a number of initiatives are now looking to make biobanks more useful for researchers. They include BioBank Ireland Trust, which has been on the go for a decade.

In that time it has co-ordinated a network of cancer biobanks across four hospitals (St James's Hospital, Beaumont Hospital, Cork University Hospital and University College Hospital Galway), and more are poised to join, according to co-founder Prof Eoin Gaffney.

He is medical director of Biobank Ireland and professor of biobanking and biospecimen science at Trinity College Dublin and NUI Galway.

“When we started out we had no biobank, no personnel and no money,” says Gaffney of the trust. “Since then, we have received funding from industry and charity and huge buy-in from patients, who want to be able to help research into the disease that they have. Now we urgently need further funding from the government, industry and [other] sources to continue to build the network.”

Through its network, Biobank Ireland has already collected more than 15,000 samples from thousands of cancer patients, which researchers can apply to use.

Dr Blanaid Mee is cancer biobank manager at St James's Hospital, which co-ordinates the network. She believes that having such samples in the bank can help boost research and development in Ireland.

“A biobank network is a crucial component of any R&D infrastructure,” she says. “It allows researchers – both academic and industrial – to access large numbers of high-quality samples and this will increase the quality and impact of cancer R&D carried out in Ireland.

“Better quality research will benefit patients and increase the profile of Irish researchers, and we are actively talking to the pharmaceutical industry and smaller indigenous companies with a view to facilitating their research and supporting R&D activities.”

While biobanks come in many shapes and sizes – from the the “one man and his freezer” model to large networks – co-ordinated biobanking makes it more likely that researchers can access tissues from the cancer types and large numbers of patients they need for studies, according to Alison Parry-Jones, who spoke at a recent conference in St James’s to mark the 10th anniversary of BioBank Ireland.

She is manager at the Wales Cancer Bank in Cardiff University school of medicine and University Hospital of Wales, which also recently celebrated its 10th birthday. It has banked donations from more than 10,000 consenting patients across 14 hospitals.

“We are hearing more and more about the large numbers of samples that are required to give you experimental results that are statistically significant,” she says.

“To be able to gather that number of samples from one independent small biobank set up in one hospital will potentially take quite a long time, but joined-up networking between banks makes it easier to deal with the larger sample requests and, I think, makes it more attractive to the pharmaceutical industry that are looking to collaborate and partner.”

Parry-Jones would like to see biobanking become more integrated into routine hospital practice, but there are some threats on the horizon. The draft EU general data protection regulation could restrict the future uses of consented material in some cases, she says.

“In its current format, it would be a major problem for biobanks if it is going to require specific consent rather than generic consent – then you get into how you define specific consent,” she says. “There could be consequences for medical research, but the draft is not going unchallenged.”

Meanwhile, if biobanking is such a boost to research, why is it not happening at a more national level in Ireland? Dr Graham Love, chief executive of the Health Research Board, wants that to advance.

“I’m a strong supporter of biobanking in general and, while I recognise the huge efforts of various groups to co-ordinate biobanking, I’m frustrated by the overall lack of progress at a national level,” he says. “We need to get biobanking happening across clinical areas in Ireland and we need a matrix in place that allows that to happen.”

He welcomes the fact that a new ISO technical standard for biobanking is in the pipeline and says the HRB will gather information about the requirements for implementing it.

"We need to get Ireland involved," Love adds. "Then, as funders, we need to ensure that the biobanking initiatives we fund comply with what is required." Biobanking online: Making research easier and access to material more straightforward By early next year, researchers looking for biobanked cancer material in Ireland might only need to go online to quickly find what they are looking for.

Biobank Ireland Trust, which banks cancer samples from four hospitals in Ireland, plans to have an online portal up and running that catalogues some of the donated material it has available for research.

The Irish Biobank Cancer Database should make it easier for researchers to find the samples they need for their research, says Jason Carr, chief executive of Dublin-based company SuprTecbox, which is building the software.

The database is part of a biobank information management system that the company designed for BioBank Trust.

One of the key issues there is to keep donor data anonymous, yet keep track of samples and link them to clinical outcomes, Carr adds.

“That is a very sensitive topic,” he says, “but software can be designed to address patient data in quite a robust fashion.

“You have your patient and clinical data on one side and your sample data on the other, and you can put in place user-based access restrictions to the different functions.

“Then you have an identifier, which is like the master key between the patient and the sample, and maybe authorised individuals would have access to that.”

The company, which was incorporated in 2013, is also looking to work with other biobanks that want an end-to-end software system for managing samples.

“Building your own standalone, a bespoke, customised solution, is really only attainable for people with deep pockets, so no use for the vast majority of biobanks,” Carr says.

“So we have core modules with functions that biobanks will need regardless of what their areas of research might be, and they can adapt them accordingly.”