'Arrogant doctors' attacked by organ inquiry

Parents' feelings ignored as 11,000 hearts stockpiled for experiments

Health Editor,Jeremy Laurance
Thursday 11 May 2000 00:00 BST
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Doctors who removed organs from dead children to advance medical and scientific understanding did so from the highest motives but were none the less guilty of "professional arrogance", an inquiry has concluded.

Doctors who removed organs from dead children to advance medical and scientific understanding did so from the highest motives but were none the less guilty of "professional arrogance", an inquiry has concluded.

In their quest for knowledge, the doctors showed indifference to the feelings of the parents whose children had died. They failed to explain what they were doing or to obtain proper consent, and showed ignorance of the law.

An interim report by the public inquiry into the Bristol baby heart surgery disaster, published yesterday, provides a devastating critique of taking organs for research and education, a common practice in hospitals for decades.

Describing the practice as a "social and ethical timebomb waiting to go off", the report's 70 recommendations include a call for a code of practice, policed independently, to ensure organs are never retainedwithout the consent of parents or relatives. Doctors who breached the code should be liable to disciplinary action and consideration should also be given to changing the law, the report says.

Ministers welcomed the report and said they were ready to make legislative changes. "If it is necessary we won't hesitate to do it," Lord Hunt of Kings Heath, a Health minister, said.

At least 42 hospitals around the country are believed to hold children's organs. One witness to the inquiry, Professor Robert Anderson of Great Ormond Street Hospital, London, said there was a collection of 11,000 hearts nationally.

When the scale of the activity became clear last year it caused huge shock to parents who had been kept in ignorance. Inquiries were announced at Bristol Royal Infirmary and at Alder Hey Hospital in Liverpool, and the Government's chief medical officer, Professor Liam Donaldson, set up a national inquiry, due to report in the autumn.

Yesterday, Professor Ian Kennedy, chairman of the Bristol inquiry, said the fault lay with the medical culture of the times. "The past was characterised by a type of professional arrogance which did not acknowledge the views of the parents. It was an arrogance born of indifference," he said.

"The medical profession acted with good intentions as they saw it. [But] there was no acknowledgement that their view of the world was not shared by others. There was no conspiracy. It was just that their view was convenient and for a long time there seemed no reason to change."

Professor Kennedy said a balance had to be found between the need to advance medical understanding and the emotional needs of bereaved parents. "They [the doctors] put their interests in the medical scientific developments before those of the grieving parents ... The practice of excluding parents was indefensible. We should not abandon the practice of the past. We must, however, change the practice. Parents must be at the centre."

Professor Kennedy also had harsh words for the Government, which had failed to clear up anomalies in the "complex and obscure" rules relating to post-mortem examination. "If ever there was a case for joined-up government this is it," he said.

Parents welcomed the findings as "a huge relief" but said public trust would only be restored by a change in the law.

The British Medical Association rejected the charge of arrogance. Dr Michael Wilks, chairman of the ethics committee, said the failure to inform relatives was more likely the result of a desire to avoid distressing details. "It was not right to duck those difficult conversations but I can understand why it happened," he said.

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