Tissue donation research warning

Research into childhood disease could be seriously compromised following a slump in the amount of tissue donated to medical science, an expert has warned.

Dr Kathy Pritchard-Jones said the scandal surrounding the retention of children's organs by Alder Hey and other hospitals has had a "devastating effect" on the donation of children's tumour samples.

We need to explain to the public the value to medical progress of keeping the 'left over' bits of tissue

Dr Kathy Pritchard-Jones

Dr Pritchard-Jones, a member of the UK Children's Cancer Study Group (UKCCSG), said only half as many samples are donated now as before the organ retention scandal broke, two years ago this month.

Cancer Research UK, the major funder of the UKCCSG, is launching a campaign to persuade the public of the need for stored tumour tissue and to restore confidence in the medical profession.

Tumour bank

In 1998 the UKCCSG 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 the wake of the Alder Hey scandal there is a danger that the supply of samples will be greatly reduced.

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.

Dr Pritchard-Jones said 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.

The thought of part of my tumour being used for research doesn't bother me at all

Gillian Page

Dr Pritchard-Jones said: "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.

More information

Dr Pritchard-Jones said it was right that the public should receive more information about the work of hospital pathology departments, particularly on how they ensure samples are only given to ethically approved research projects and how 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."

Medical student Gillian Page, 23, who was treated for cancer at Alder Hey ten years ago, is supporting the campaign.

She said: "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."