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Organ retention issue deals blow to children’s cancer research

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by Cancer Research UK | News

16 December 2002

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Cancer Research UK launches an awareness drive to highlight the need for stored tumour tissue and boost confidence in research practice, as part of Children’s Cancer Awareness Month.

In 1998 the UK Children’s Study Group (UKCCSG) and its major funder, Cancer Research UK, jointly set up a National Tumour Bank for children’s cancer.

After formal permission from parents, samples of tumour tissue – crucial for studying genes and molecules involved in the progression of cancer – were made available to researchers across the country.

But in late 1999, with widespread national coverage of organ retention, numbers of donations began to fall.

Studying tumour tissue is important to identify targets for future anti-cancer drugs or markers for improved diagnosis and tailored treatments. While the tumour bank includes records of medical information relating to the cancer, scientists do not have access to personal information that might allow them to identify a particular child.

But at the press briefing, Dr Kathy Pritchard-Jones, a leading member of the UKCCSG, will reveal that public suspicion and uncertainty saw the number of samples donated fall by nearly half in the six months following the first reporting of the organ retention issue. Donations to the bank continued to fall over the following two years and have only started to creep up again in the last six months.

Dr Pritchard-Jones, Senior Lecturer in Paediatric Oncology at The Institute of Cancer Research, and funded by Cancer Research UK, says: “A National Tumour Bank is essential if we’re going to have a joined up strategy for tackling children’s cancer.

“When we first set up the tumour bank, we had really high hopes that it would bring children’s cancer research in this country forward by strides, so it’s very frustrating that donations to the bank have fallen.

“We need an information drive to explain to the public the value to medical progress of keeping the ‘left over’ bits of tissue removed during operations as part of a patient’s treatment. These samples are small, usually less than the size of a sugar lump.

“Of course, the public rightly expects to have more information about what happens in hospital pathology departments, how we ensure that samples are only given to ethically approved research projects and how their personal information is safeguarded.

“All this takes time and needs extra staff to do the job properly. This is why many hospitals are still finding difficulties in registering tumour samples with the National Tumour Bank.”

Supporting Cancer Research UK’s awareness drive is Gillian Page, who was treated for rhabdomyosarcoma at Alder Hey Children’s Hospital 10 years ago, during the period that organs were being stored without permission. Gillian, 23, is now a medical student at Liverpool University and has no qualms over the use of stored tumours.

She says: “It’s essential that this kind of research is carried out and to be honest, the thought of part of my tumour being used for research doesn’t bother me at all.

“In fact, I wouldn’t even mind if a tumour sample had been taken and used without my knowledge. It was not a part of my body I felt much affection towards.”

Dr Richard Sullivan, Cancer Research UK’s Head of Clinical Programmes, says: “Nervousness on the part of the public is meaning many fewer tumour specimens are being made available for research than we’d hoped, making it harder and harder for scientists to carry out essential work.

“It is very frustrating that cancers that have been surgically removed for diagnosis and treatment cannot also be used for research because of unfounded fears.”