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Alder Hey report on use of children's organs

This article is more than 23 years old

Why was an inquiry into the use of children's organs launched?
Former health secretary Frank Dobson launched the inquiry in October 1999 following revelations that three children's hospitals had been harvesting hearts, lungs, brains and other organs from dead babies without their parents' informed consent. Parents were distraught to find that thousands of body parts had been removed and kept in hospital storage.

What has the inquiry examined?
The inquiry, led by chief medical officer Liam Donaldson, has looked at what information parents are given and what they understand by "consent" and recommended future practice across the NHS. The census coincided with the publication of the report on Liverpool's Alder Hey Children's Hospital, where 2,080 organs were removed from 800 children.

How many organs have been harvested?
The Donaldson report found that 105,000 organs are retained at hospitals and medical schools across England.

When did the scandal break?
The scandal first broke in 1999 when it emerged that the hearts and other organs of 170 children who died at Bristol Royal Infirmary had been kept without their consent. The scandal at Alder Hey emerged soon after. It became clear that organ harvesting at the hospital went back decades.

Have any other practices been criticised?
Last week it emerged that the Birmingham and Liverpool hospitals had also given thymus glands, removed during heart surgery from live children, to a pharmaceutical company for research in return for financial donations. Alder Hey also stored 1,500 foetuses that were miscarried, stillborn or aborted without consent.

Why are organs removed?
Postmortems are performed when there is doubt about the cause of death, which is especially important in young children. Organs and other tissues are removed and examined during autopsies.

How did this happen?
Doctors and scientists thought that telling parents exactly what happens during and after a postmortem was too distressing. Parents did not realise that by signing a consent form for a post mortem stating "tissues may be retained" for research that this allowed the hospital to remove or dispose of all their child's organs. Some parents of children who died at Alder Hey still do not know what body parts the hospital still has.

Has any guidance been issued already?
Prof Donaldson has issued interim guidance to hospitals, requiring them to tell parents exactly what autopsies involve and get their explicit permission if there is any need to remove organs.

What does Prof Donaldson's report recommend?
It says major changes in the law are needed to ensure parents, patients and relatives are giving "informed consent" to the removal of organs during postmortem examinations.

Who has been called to account?
The Alder Hey inquiry, chaired by Michael Redfern QC, points the finger at the "rogue" Dutch pathologist Dick van Velzen, who kept an 11-year-old's head in a jar. During his time at the hospital he systematically ordered the "unethical and illegal stripping of every organ from every child who had had a post mortem". Four NHS staff, including the current chief executive, have also been suspended. The Redfern report has been referred to Merseyside police and passed to the Director of Public Prosecutions. The General Medical Council has also begun an investigation of Prof van Velzen, and is holding an emergency meeting on Friday to consider limiting his registration.

What action will the government now take?
Health secretary Alan Milburn has announced changes in the law governing consent. The 1961 Human Tissue Act, which currently regulates organ retention, will be amended to make it illegal for staff to ignore informed consent. A new consent form will be introduced throughout the NHS, and a code of practice will be issued on the use of organs by pharmaceutical companies. A special commission will oversee the return of body parts to relatives who wish to have them.

How has the medical profession reacted?
The British Medical Association and the Royal College of Pathologists accept the "doctor knows best" attitude is no longer acceptable and relatives should be fully briefed informed in order to give informed consent. The BMA has been working with the Department of Health on new guidance. But they are concerned that the medical profession should not be demonised.

How have parents reacted?
Parents have welcomed the referral of the Redfern report to the Director of Public Prosecutions. But they called for an independent inquiry into what happened at Alder Hey before and after Prof van Velzen worked there. They also want pharmaceutical companies that received body parts from the hospital to be investigated.

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