Medical research cannot progress without a linked system of tissue archives. Claire O'Connell reports
Medical science holds the promise of improving the lives of patients. But sometimes research comes unstuck over the basics, such as getting material to work with.
Human tissue often gets discarded after surgery or ends up clogging freezers, jars and lab drawers all over the country.
These dumped or squirreled tissue samples may hold clues to new treatments of disease, but researchers can find it hard to access the specimens they need to discover new therapies.
Pathologist Dr Eoin Gaffney is part of a group of doctors and researchers who want that to change. They plan to set up a framework of linked biobanks around Ireland to collect, store and distribute cancer biopsy tissue donated by consenting patients.
Gaffney, who is a consultant histopathologist at St James's Hospital, Dublin, says the aim is to make cancer samples and relevant medical details about the patient available to researchers to develop new treatments.
Despite the considerable ethical and logistical hoops involved, he believes a networked biobank will help translate basic scientific research into useful clinical therapies, while also giving patients the chance to be involved in the fight against disease.
"We've got the human genome project which has the potential for all sorts of molecular benefits," he says. "But we need fresh specimens and we need them to be linked with the clinical data to make more sense. The idea is to move research to interventions such as prevention, diagnosis, prognosis and treatment."
Gaffney explains that a typical biobank system requires storage equipment such as freezers, dedicated medically trained staff and a sophisticated infomatics system to track samples and maintain confidentiality. And, crucially, having a centralised system that links collected tissue at individual banks will open up more possibilities for researchers to access the material they need.
He says that eventually the biobanked material and results arising from it could be used for research collaborations with pharmaceutical companies. "Some people have an abhorrence to that, but if they want to improve the treatment of disease, that's what they've got to do. The pharmaceutical companies must be welcomed," he says.
Gaffney realised that Ireland would benefit from a linked system of tissue archives when he visited a research centre in Madrid three years ago. They were building a networked biobank system that contrasted sharply with the haphazard approach of solo biobanks back home.
"In Ireland until recently they were not being managed properly, with no quality control, and they have specimens bursting out of them, not all used," he says. "It became clear that we needed a coherent body for all these splinter groups."
He has set up Biobank Ireland Trust and is in discussions with researchers, funding bodies, information technologists and patient advocates to start the network at major hospitals throughout Ireland, North and South.
Similar biobank initiatives are gaining ground in the US and UK, and Gaffney says there is considerable international interest in what Ireland will do.
But it's not all straightforward. Collecting and archiving human tissue for research and pharmaceutical development throws up a raft of ethical and legal issues and Gaffney does not broach them lightly.
"The science should be encouraged for patient care, but patients are more important than science," he says.
"And obviously two very important things where patients are concerned are confidentiality and privacy."
Dr Siobhán O'Sullivan, scientific director of the Irish Council for Bioethics, echoes the need for patient protection in biobanks.
Last year the council produced a report dealing with research using human biological tissue and covered areas such as consent, confidentiality and commercialisation.
The report identified consent as a major issue, and O'Sullivan says that before they agree to donate, patients need to be properly informed about how the tissue will be handled, and what researchers may do with it.
However, informed consent can be tricky in a rapidly evolving field such as biomedical research where new tests are likely to become available, and she suggests that patients be given multiple options to determine how their tissue sample can be handled in future.
"That shows the proper respect for the person yet, very important for scientists, you are still allowing them to use material for other things because it's very valuable once you have it," she says. "We're trying to strike a balance between optimal use of the material and the correct respect for the person who has actually donated it."
O'Sullivan says patients need to understand the level of information that will be stored with their tissue, and particularly whether it can identify them.
"It needs to be carefully explained to people about how that information is going to be held, who will have access to it and that it is done in accordance with the Data Protection Act," says O'Sullivan.
She says potential donors should also be told upfront about procedures for handing out the tissue. "The biobank needs to have documentation and needs to know that a particular investigator has ethical approval to do a study before they hand over anything."
There is also the question of commercial gain. O'Sullivan says that most biobanks cover costs by charging handling fees, but some make a profit. "In our report we have stated very clearly that we would like to see biobanks operating on a non-commercial basis," she says. "We're not saying that we have anything against them being commercially run but if it is, then that's something that the person who is contributing to the bank needs to know about."
O'Sullivan says that properly run biobanks have the potential to make a real contribution. Based on public submissions received by the council, she believes that if people felt they were being protected they would be happy to give material to such programmes.
"We have a national blood bank, so why not have a stem cell bank or a cancer bank? Those are really great initiatives which can only serve to further clinical research and the delivery of better healthcare to patients."
Patient advocates also weigh in behind the principle of well run biobanks. "It is crucial that you have a biobanking network in order to further clinical cancer research in Ireland and the Irish Cancer Society is very supportive of it," says the society's chief executive, John McCormack.
He says the society is in discussion with other stakeholders about biobanking and believes that funding should ultimately come from the Government as part of a more patient-focused approach to healthcare. "We want them to step up to the plate and realise the importance of this," he says.
Gaffney agrees that the biobank initiative is a healthcare development and hopes it will be integrated seamlessly into the health service eventually as a standard of care.
He has spent three years researching the ethics and procedures of setting up a non-profit biobank network. He knows what he is up against and that the programme will take years to implement fully. "I'm under no illusions as to the difficulty of this," he says.
But he believes it is an idea whose time has come and so far the planned initiative has received overwhelming support. "I think researchers would like their work to be used for new treatments but at the moment they are unhinged, there's no connection," he says. "This is a connection."
• For more information on cancer, contact the Irish Cancer Society National Helpline, Monday-Friday 9am-5pm, Freefone 1800 200 700 or visit www.cancer.ie