Summit signals a change in the law on organ retentionBMJ 2001; 322 doi: https://doi.org/10.1136/bmj.322.7279.125 (Published 20 January 2001) Cite this as: BMJ 2001;322:125
A change in the law and an amnesty on the return of retained organs are the likely outcomes of an all day summit convened in London last week by England's chief medical officer, Professor Liam Donaldson.
“No one denies the benefits to patients that can flow from research and teaching on human tissue,” he told the summit. “But something went seriously wrong in the way that the health service dealt with these issues.
“Despite the grey areas in the law governing organ retention, some of these past practices are an affront to families who have lost loved ones. They belong to an era where decisions were made for patients, not with them.
We must ensure that clinical care for future patients is improved through good postmortem practice. But what is important is that the rights of individuals are respected and that consent is properly obtained. We need to put in place a robust modern system to do this.”
The summit heard evidence from families of children whose organs had been retained and from representatives from professional groups and non-government organisations. It will shape the recommendations that Professor Donaldson gives to ministers on future regulations for organ retention.
He will be advising on whether a change in the law is necessary, as well as what should be done about the estimated 50000 organs that have already been obtained without consent and are stored in hospitals and universities.
This advice will be published before the end of this month, he said. It will appear at the same time as the report of the inquiry into the retention of organs at Alder Hey Royal Liverpool Children's Hospital and the results of a census of pathology services in England aimed at establishing the extent of organ and tissue retention. A report of the summit proceedings will be posted on the internet.
While the public's voice was heard at the summit, time restrictions caused dissatisfaction among parents' groups and added to the highly charged atmosphere. Representatives of professional groups also privately admitted that they were unsure what the summit was supposed to achieve.
Michaela Willis, chairwoman of the National Committee Relating to Organ Retention, which has been calling for a public inquiry, criticised the summit for the lack of public involvement and the excessive time devoted to the views of professionals. “There isn't enough time given to speakers,” she complained. “How can five minutes be enough?”
Professor Donaldson defended the summit: “It is clear that there has to be change, and the direction of travel is clear,” he told the BMJ. “There isn't much to be gained from a public inquiry because there are already inquiries in Bristol and Alder Hey. Why waste two years over another one? Although the direction of travel is clear, I have learned a lot today.”
The practice of retaining organs without consent was exposed during the inquiry into paediatric cardiac surgery at Bristol Royal Infirmary. Other hospitals have since admitted to the same practice, causing immense distress among relatives and embarrassment for doctors, especially pathologists.
Alder Hey in Liverpool has collected 3500 organs since 1947, said Professor Donaldson, largely between 1988 and 1995. Dick van Velzen, the head of pathology at Alder Hey during that time has been reported to the General Medical Council (BMJ 2000;320:77).
Both the Royal College of Pathologists and the BMA have recently issued new guidelines for doctors wishing to obtain consent for the removal and retention of organs from dead patients (4 November, p 1098). The chief medical officer has also issued interim guidelines pending his final report.
Although patients' groups and relatives at the summit condemned the arrogance of the medical profession, Professor John Lilleyman, president of the Royal College of Pathologists, apologised on behalf of his college.
He maintained that “there was never any perverse or devious intent” behind the way pathologists around the country behaved, and he insisted that organs were retained for educational purposes.
Representatives from the GMC, the BMA, and the Royal College of Paediatrics and Child Health all shared his regret and emphasised the need for clear guidance that would protect the public as well as maintaining the supply of organs and tissue samples for research.
Lamenting a fall last year in the number of postmortem examinations to 3800, Dr John Bennett, representing the Royal College of Physicians, expressed a different view to that of most speakers when he suggested that greater transparency in the process might not always be beneficial. He said: “I regret and reject the allegation that there has been arrogance on the part of doctors.”
Professor Donaldson also took most people in the hall by surprise when he started the afternoon session with a minute's silence. Within 30 seconds a distraught relative had stormed out of the hall. “We shouldn't be having to do this,” she shouted. “You lot should be hanging your heads in shame.” (See p 128.)