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The BBC's Niall Dickson
"This is a subject that touches raw emotions"
 real 56k

Parents Janet and Kelly Valentine
"We hope this never happens again"
 real 56k

Chief Medical Officer Liam Donaldson
"We are prepared to do everything it takes to put this situation right"
 real 28k

Professor James Underwood
"Tens of thousands of organs are probably stored"
 real 28k

Thursday, 11 January, 2001, 15:28 GMT
Organ stripping law could change
Alder Hey was hit by an organ retention scandal
Alder Hey was hit by an organ retention scandal
The law could change to make sure children's organs are never again kept by hospitals for research without the parent's permission.

Chief Medical Officer Professor Liam Donaldson said new legislation may be necessary to end a practice he called "an affront to families".


It is clear that the practices were very distressing to families who had lost a loved one

Professor Liam Donaldson, Chief Medical Officer
A summit into organ retention held in London on Thursday heard from an audience of around 500 patients, representatives and health professionals amid fears organ retention has been widespread in UK hospitals.

A census of the practice ordered by Professor Donaldson is due to report soon.

But a Department of Health spokesman estimated around 40,000 organs taken from adults and children were stored in hospitals around the UK.

Grey area

Addressing the summit, Professor Donaldson admitted that current legislation covering organ retention was a grey area.

He said: "It is clear that the practices were very distressing to families who had lost a loved one.


I think what happened at Alder Hey is awful, new things keep coming out all the time and it gets worse and worse.

Naomi Robinson, 10
"They belong to an era where decisions were made for families, not with them."

He added: "But what is important is that the rights of indivduals are respected and that consent is properly obtained. We need to put in place a robust modern system to do this."

Professor Donaldson read out a letter sent to him by 10-year-old Naomi Robinson.

Her baby brother died at Alder Hey hospital in Liverpool before she was born. Her parents only found out ten years later that almost all his organs had been retained.

It said: "I think what happened at Alder Hey is awful, new things keep coming out all the time and it gets worse and worse.

"It is horrid to see my mother getting upset and crying when she hears more bad news from the hospital."

The summit follows organ retention scandals at Alder Hey Childrens' Hospital, Merseyside, and Bristol Royal Infirmary.

Speaking at the summit, Professor Robert Anderson, of the British Cardiac Society, stressed how important it was that organs were made available for research.

He said work on organs in his field of congential heart disease had reduced death from one in five sufferers, to one in 20.

However, he told the summit: "I did not know that these hearts were taken without consent. The problem is one of lack of communication."

John O'Hare, from the PII support group for parents involved in the Alder Hey scandal said: "We must have a change in the law, declare precise rules and directives designed to show what happened to our children cannot happen again."

Professor James Underwood, vice-president of the Royal College of Pathologists told the BBC tens of thousands of organs were stored in medical school museums and used for training medical students and young doctors, and research.

James Underwood: Royal College of Pathologists
James Underwood: Royal College of Pathologists

He said: "I think the public will become aware that there has been a substantial amount of tissue and organ retention carried out in hospitals in the UK, not through arrogance, or insensitivity or malice, but simply to advance the study and understanding of disease and help bereaved families get a better understanding of the reasons for their loss."

Guidelines

The British Medical Association has published interim guidance on how doctors should approach bereaved relatives for permission to retain organs or tissue for research.

Dr Michael Wilks, chairman of the BMA's ethics committee said: "The public rightly expects that doctors will be completely open with them.

"The desire to protect relatives from distress is an understandable motive but, nowadays, that must be achieved by talking to people with sensitivity, not by avoiding the issue and certainly not by acting without consent."

It emerged in 1999 that Alder Hey Children's Hospital in Liverpool had stripped and retained organs from hundreds of babies who had died there between 1988 and 1995.

Parents of children operated on at the Bristol Royal Infirmary - subject of a second inquiry into children's heart surgery between 1984 and 1995 at the hospital - also discovered 170 hearts had been retained without their knowledge.

The summit also heard concerns that adverse publicity surrounding the Bristol and Alder Hey cases had made some coroners reluctant to order post mortems.

Dr John Bennett, of the Royal College of Physicians, said the rate of autopsies had fallen to 3,800 last year.

"There is no doubt that this business has made coroners very reluctant to allow organ retention."

Doctors are concerned that failure to carry out post mortems could affect research into diseases such as vCJD.

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See also:

11 Jan 01 | Health
Summit to discuss organ scandals
13 Nov 00 | Health
Hospital retained foetuses
05 Nov 99 | The Bristol heart babies
The Bristol Inquiry
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