THE brains of thousands of depressed people were illegally removed after their deaths and kept for medical research over a period of nearly 30 years, a government inquiry will announce on Monday.
Doctors supplied researchers with the brains of mentally ill or handicapped people for experiments without the families’ consent between 1970 and 1999, and 24,000 are still stored in British hospitals and universities — half the total of all the organs retained for research.
Now ministers are considering changing the law this summer to stamp out abuses and punish doctors who ignore the rules. At the moment, a coroner is not permitted to allow a pathologist performing a post-mortem examination to keep organs unless there is explicit consent from relatives. But the Human Tissue Act has no sanction for doctors who flout that rule.
University academics in particular were prepared to use brains that had been removed illegally because, unlike researchers at medical schools, they did not have the ready access to organs supplied by hospital post-mortem examinations. It is believed, however, that the outcry surrounding the unauthorised retention of children’s organs at Alder Hey Hospital on Merseyside may have inhibited doctors, and the practice may have subsided in the past three years.
Alan Milburn, the Health Secretary, promised after the Alder Hey inquiry in 2001 that the Human Tissue Act would be changed, but it has yet to be amended. NHS guidelines on when post-mortem examinations should be carried out have, however, been revised.
Mr Milburn also asked Jeremy Metters, the Inspector of Anatomy, to investigate the removal and retention of brains for research after it became clear that the practice had become widespread.
The setting up of the inquiry two years ago followed years of campaigning by Elain Isaacs, a Manchester housewife whose husband Cyril committed suicide in 1987 after suffering depression. She discovered by chance that his brain had been removed after a post-mortem examination and given to a local academic who wanted it for research.
The case of Mr Isaacs showed that doctors were seeking brains displaying all kinds of mental illness and defects, and also required some healthy brains as “controls”.
In fact, Mr Isaacs’s brain failed to meet the academic researchers’ criteria and it lay preserved on a shelf until it was incinerated in 1994.
His family knew nothing about this, however, until the General Medical Council began an unrelated investigation into Mr Isaacs’s GP and Mrs Isaacs discovered correspondence about her husband’s brain from a Manchester University professor.
After three months of questioning, the pathologist confirmed that the brain had been retained at Prestwich mortuary after Mr Isaacs’s post-mortem examination there.
The University of Manchester has since apologised for the distress caused and stated that the way tissue is retained for research purposes has since “dramatically altered”.
Mrs Isaacs was particularly upset to find out about her husband because the family are strict Jews and believe the body should be buried intact so that the deceased can rest in peace. She therefore joined Mind and other mental health organisations in pressing for a full inquiry.
Professor Sir Liam Donaldson, the Chief Medical Officer, wrote to her saying that the issue needed to be investigated separately from hospitals retaining children’s organs, “as it raises a wide range of concerns about health service and coronial policy and practice”.
Since Dr Metters began investigating a small sample of cases seen as representative of a wider problem, many bereaved people have begun to wonder if their relatives’ brains were removed.
Those interviewed included a doctor from Cambridge whose husband committed suicide while depressed. She, too, subsequently found out that his brain had been used in academic research.
Her MP, the Conservative Andrew Lansley, said: “Many of those involved had relatives die in particularly traumatic circumstances, but they are very keen to make sure the law is changed.
“As a scientist and doctor herself, my constituent has felt a sense of professional betrayal that her late husband’s brain was retained despite her attempts to respect his wishes to be buried intact and her specific wish that organs should not be retained.
“We know that doctors thought they were protecting relatives, but what my constituent has said is that the pain of ignorance is worse than the pain of knowing.”
The mental health charity Mind said it feared that the practice was pervasive. “We hope that the Isaacs report will expose the full facts of what happened, and address to what extent this was normal practice,” a spokeswoman said. “Where laws have been broken we would like redress.”
The Alder Hey Inquiry was ordered 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 inquiry revealed that the organs of 3,500 children at the Liverpool hospital were removed without parental knowledge or consent, and parents were awarded £5 million in compensation.
It pinned much of the blame on Professor Dick van Velzen a pathologist who fled the country after it emerged he removed organs from every child on whom he performed post-mortem examinations between 1988 and 1995. Professor van Velzen was banned from practising in Britain and Hilary Rowland, chief executive of the hospital, was sacked.
