In 1992, following the death of a child at Alder Hey, a children’s hospital in Liverpool, England, investigators looked into child mortality at the facility. This led to revelations about the treatment of dead children’s bodies at Alder Hey and other National Health Service hospitals. In early 2001, investigators submitted their report on the matter, showing that hospitals were taking and keeping the organs and other body parts of thousands of dead children, and fetuses, without parental consent.
Alder Hey children’s hospital, near Liverpool, is one of the most respected children’s hospitals in England and one of the largest children’s hospitals in Western Europe. With two other leading children’s hospitals, Great Ormond Street Hospital for Children in London and the Birmingham Children’s Hospital, Alder Hey was caught up in a scandal that developed through the 1990’s and was finally exposed to the public on January 30, 2001, with the publication of The Report of the Royal Liverpool Children’s Inquiry, best known as the Redfern Report. The hospitals had been keeping the organs and body parts of deceased children, and fetuses, without the full consent of the parents of the deceased.
The scandal came to light indirectly. In 1996, Helen Rickard, the mother of Samantha Rickard, an infant who had died while undergoing open heart surgery at Bristol Royal Infirmary (BRI) in 1991, asked for the medical records of her daughter. She had heard of the unusually high number of deaths of children at BRI while undergoing heart surgery. These figures became known through new audit procedures instituted by the British National Health Service (NHS). Upon receiving the records, Rickard discovered a letter from the pathologist who had carried out Samantha’s postmortem, stating that he had retained her heart. Shocked, she asked for its return.
Concern about BRI’s poor performance and the news of the retention of the infant’s heart led to the formation of a parents’ action group. In February, 1999, group members called a press conference to inform the public about the retained heart. With other medical concerns about BRI, the press conference led the British government to form a public inquiry into the matter. In September, one of the witnesses at the inquiry testified under oath that Alder Hey routinely kept a large number of stored hearts of children who had undergone postmortems, and that it had been doing so since about 1948.
This fairly sensational news led to a public uproar, and the Labour government, under Health Minister Alan Milburn, promptly set up another inquiry to be chaired by Michael Redfern, a leading medical barrister (attorney) and the queen’s counsel in the north of England. He was to be assisted by Jean Keeling, a consultant pediatric pathologist at the Royal Hospital for Sick Children in Edinburgh, Scotland, and a noted medical author, and Elizabeth Powell, chief officer of the Liverpool Community Health Council. They were given broad terms of reference and were instructed to one, inquire into the extent of the organ retention of children who had undergone postmortem examination and to what extent this had been done legally, and two, inquire into the roles of supervisory agents and any “such other issue relating to the above matters.” In particular, the panel was to look into illegalities relating to the
The panel was asked to report back by March, 2000, but the evidence was so extensive that the due date was extended to the end of the year. The panel’s Redfern Report totaled six hundred pages. The health minister was shown a copy on January 26, 2001, and it was released to the public on January 30. Government officials expected such a furor after the report’s release that police surrounded Alder Hey hospital. Relatives of the deceased children gathered at the Adelphi Hotel in central Liverpool.
The report was incredibly damning, and its chief focus was a former professor of pathology at Alder Hey who had worked under a contract from the University of Liverpool. The pathologist was Dutchman Dick van Velzen, who had worked at the hospital from 1988 to 1995. The inquiry found that from his initial interview he had lied about his credentials and his activities. The report cited twenty areas of malpractice during his seven years at Alder Hey. The hospital had retained some body parts before he arrived, but the practice mushroomed after his arrival, and, in some cases, it involved retention even without parental consent (or contrary to parental refusal).
The report criticized others as well, especially the management teams of Alder Hey and the University of Liverpool. Independent assessors had told management teams at the hospitals about inadequate staffing of the pathology departments, but they were ignored. However, it was primarily the sheer lack of supervision that accounted for the growth of the malpractice cases, plus the failure of professional colleagues to raise the alarm. A particular coroner, Roy Barter, was singled out for his poor record-keeping. The report also attacked the management’s paternalism: Parents found they had very little say as to what happened to their dead children. It was assumed the medical team knew best, and that there existed a general policy of “assumed consent.” Even when the scandal was breaking, management responded slowly to parents’ concerns, and management was late in informing families and in returning body parts to those who requested them.
The inquiry also looked at the wider practice within the National Health Service and found evidence of some 104,000 children’s body parts, organs, and fetuses being stored at more than two hundred facilities. The problem was thus much more extensive than the actions of one pathologist at one hospital. Furthermore, nearly one-half million tissue samples were also being held by hospitals. At Alder Hey, storage space had run out, and a nearby hospital was being used to store the overflow. Alder Hey and the Birmingham Children’s Hospital also gave thymus glands to a pharmaceutical company in return for research funds.
Concurrent with the inquiry was the investigation of Liam Donaldson, the government’s chief medical officer, who was instructed to report on organ retention at the national level, to look at the consent procedures in place, and to make recommendations for their improvement. Donaldson’s findings were published as Human Bodies, Human Choices: The Law on Human Organs and Tissue in England and Wales—A Consultation Report, on July 1, 2002. The report found that the system of “assumed consent” should be replaced by a much more fully explicit statement of consent. He also found that more than fifty thousand organs, body parts, and fetuses were held by pathology services throughout Great Britain, a figure that reinforced the numbers in the Redfern Report.
After the inquiry, four members of the hospital staff, including the chief executive, were immediately suspended. The inquiry turned over its evidence to both the General Medical Council (GMC) for England and Wales and police. The GMC eventually banned van Velzen from practicing in Great Britain, but local police and the Crown Prosecution Service could not put together a strong enough case to warrant a criminal action against the pathologist, leading to further public outrage.
Health secretary Milburn accepted the report in full when it was debated in an emergency session of the British parliament. He promised a special commission to oversee the return of all organs and tissues to the families involved, if so requested. He would begin a review of the coroner’s system and also of the accountability and management systems where universities and National Health Trusts worked together. Finally, he promised full support for all families at the time of their bereavement.
Early in 2003, the Alder Hey families received just over five thousand pounds (about ten thousand U.S. dollars) each in an out-of-court settlement totaling five million pounds (about twenty million U.S. dollars). By 2004, about two thousand families had filed suit against the National Health Service in the British High Court. That same year, all unidentified bodies were buried, over a short time, at Allerton Cemetery in Liverpool.
The greatest impact of the scandal was the revamping of the whole system of obtaining consent for the retention of body parts. Initially, health and medical officials feared that parental refusal would drastically reduce the needed supply of parts for medical research, but this has proven not to be the case. The procedures for aborted and miscarried fetuses also have been regularized to some extent, though many critics say that insufficient regard for human dignity still exists. Institutional mentalities tend always to be paternalistic, even indifferent, in such cases.
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Cowley, Christopher. Medical Ethics, Ordinary Concepts, and Ordinary Lives. New York: Palgrave Macmillan, 2008. Argues that the best starting point for discussions of medical ethics is “the actual words and deeds of ordinary people in ordinary disagreements.” Includes a chapter on the Alder Hey scandal and inquiry and another on the postmortem. -
The Times (London), January 30-31, 2001. A full investigative report of the inquiry’s findings and subsequent Parliamentary debate on the matter. -
Weir, Robert F., Robert Olick, and Jeffrey Murray. The Stored Tissue Issue: Biomedical Research, Ethics, and Law in the Era of Genomic Medicine. New York: Oxford University Press, 2004. Examines the Alder Hey inquiry in the context of concurrent developments in genetic science, law, and medical ethics. Argues that the inquiry had a major role in these developments.
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