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The Removal, Retention and use of Human Organs and Tissue from Post-mortem Examination

  Home Chief Medical Officer Organ Retention

Advice from the Chief Medical Officer

Legal and Regulatory Issues
Past and Present Practice
Related Issues
Conclusions/Recommendations
Annex A: List of Organisations
invited to meet CMO/contribute to CMO’s investigation

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Introduction

  • the background to, and purpose of, the report
  • the sources of evidence, the views and the advice which have been drawn upon to formulate recommendations to the Government.

1 During the inquiry into the management of the care of children receiving complex heart surgery at Bristol Royal Infirmary, it emerged that the retention of hearts removed during post-mortem examination of the child’s body had been commonplace. In many cases it appears to have taken place without parental consent or indeed knowledge.

2 Specifically, it emerged that a more extreme situation existed at Alder Hey Children’s Hospital in Liverpool. The Alder Hey Inquiry has found that collections of children’s hearts and other organs had been accumulated over several decades, in some cases as long as 50 years. The Inquiry established that it had been common practice to retain organs without express parental knowledge and agreement. Separate research collections held by the University of Liverpool included children’s eyes, cerebella (part of the brain), body parts and fetuses.

3 The Alder Hey Inquiry also discovered that between 1988 and 1995 the then Professor of Fetal and Infant Pathology was responsible for the removal of all organs from all babies and children at post-mortem and their storage for intended research again apparently without parental knowledge or agreement. It appears that in the majority of cases, the organs were never put to any useful research purpose. In many cases, a proper post-mortem examination was never carried out and final reports on post-mortems were not produced.

4 Individuals and groups of relatives in other parts of the country have also made enquiries of local hospitals. The responses suggested the presence of substantial stores of retained human organs. This has been confirmed by the census, carried out during 2000, of organs and tissues retained by pathology services in England.

5 All these events have led to a great deal of public concern about past practice by pathology services in relation to the circumstances in which organs and tissues removed at post-mortem examination were kept over the long term for teaching or research. Those relatives directly involved, particularly in Bristol, Liverpool and Birmingham, have expressed deep distress, grief and anger over the discovery that their children’s organs had been taken and kept without their knowledge. Their distress has been made worse by the way in which communications with them were managed following the revelations about the retained organs.

“Our main concern was the way the hospital dealt with our problems, being pushed from phone line to phone line, causing more distress and trauma for parents, being given information which was incorrect, leading to second burials, some parents refusing to bury until everything was clarified. Drip fed information: unless you asked the right questions you did not get the answers you wanted.”

Lynne Langley
Stolen Hearts Group
Speaking at the CMO’s Summit on 11th January 2001

6 During the controversy of the last few years, professional bodies and research charities have repeatedly drawn attention to the value of post-mortem examination and long-term study of retained organs and tissue in the advancement of medical science. Pathologists have stressed that practice was motivated by trying to do good for patients and never intended to cause distress or harm to families.

7 Few people, even the relatives caught up in these events, deny the benefits to patients that can flow from properly conducted research and from teaching using human organs and tissues: discovering the causes and effects of disease, establishing that some genetic diseases will affect other family members, even finding the cure for some fatal or disabling illnesses.

8 But something went seriously wrong in some institutions in the way that the health service and the medical profession sought to secure these advances in medical science and standards of care. Despite the fact that there is legislation governing the conduct of post-mortems and the retention of tissues and organs, there appears to have been little understanding or application of the law. It is also clear that assumptions were made about how families, particularly parents, felt about their loved ones after death. Some of this practice, at best, can be described as paternalistic and belonging to an era when decisions were made for patients and not with them.

“When a child died that child is still the parents’ child – not a specimen, not a cause, not an unfortunate casualty of a failed procedure, but someone’s baby, someone’s child. In life the parent is responsible for every aspect of a child’s well-being. In death that responsibility should not be taken away.”

Stephen Parker
Bristol Heart Children’s Action Group
Speaking at the CMO’s Summit on 11th January 2001

9 In the last few years, changes have been introduced in many hospitals including more explicit consent forms for hospital post-mortem examination. These include explanations as to the difference between hospital post-mortems and coroners’ post-mortems, more information for relatives on the purpose of the examination, more detailed descriptions of which organs and tissues are to be retained, and the reasons for requesting that organs and tissues should be retained beyond the time that the rest of the body is buried or cremated. These trends have been reinforced by interim guidance which I issued to the National Health Service in the Spring of 2000 and by guidelines which the Royal College of Pathologists issued at the same time.

“We feel most strongly that measures should be put into place so that what has been done to our children should never be allowed to happen again. Guidelines are not enough. It has been proven that they have been ignored. Self-regulation by the medical profession has been shown to be inadequate. We must have changes in the law that will cover both hospital and coroners’ post mortems with clear concise rules and directives that are enforceable in law and that are designed to ensure that what happened to our children cannot be repeated in the future.”

John O’Hare
PITY II Group, Liverpool
Speaking at the CMO’s Summit on 11th January 2001

10 These measures are, however, not enough to address and put right the depth of the problem that has been uncovered. A new system must be introduced that is comprehensive and coherent, that addresses the important concerns raised by recent events, that draws in the views and experience of the families and their representatives and which takes on board the lessons of the two major inquiries – in Bristol and Alder Hey.

11 This is the task and the challenge addressed in this report to the Government.

12 In preparing my report I have drawn on:

  • the interim report of the Bristol Royal Infirmary Inquiry (available at www.bristol-inquiry.org.uk).
  • the report of the Royal Liverpool Children’s NHS Trust (Alder Hey) Inquiry (available at www.rlcinquiry.org.uk/index.htm).
  • the Summit Meeting on Organ Retention held in London on 11th January 2001 (proceedings and evidence available at www.cmosummit.org.uk).
  • a wide range of written material, including current guidance from professional and research bodies, the Coroners’ Society and submissions from members of the public.
  • a series of meetings with representative groups and individuals both from the public, the professions and the health service. The organisations concerned are listed at Annex A.
  • the census conducted in 2000 of organs and tissues retained by NHS pathology services in England at the end of 1999 (available at www.doh.gov.uk/organcensus).

13 I have not attempted to replicate the excellent analysis of the law found in the Interim Report of the Inquiry into the management of care of children receiving complex heart surgery at the Bristol Royal Infirmary, Removal and Retention of Human Material or that in the Report of the Royal Liverpool Children’s NHS Trust Inquiry.

14 The intention is to provide definitive advice which will enable a new beginning and start the process of restoring public confidence. While much of the public attention has been on the taking and retention of organs from post-mortems on children, the report and the recommendations address post-mortem practice in all age groups.

Aims of the report

  • to summarise the nature and scope of current and past practice in relation to the retention of organs and tissues;

  • to draw together the main problems and concerns which have arisen from the operation of the system to date;

  • to recommend comprehensive changes to current practice which will ensure:

    – a proper respect for the person who has died and the surviving relatives;

    – the compassionate treatment of bereaved families;

    – the provision of clear information and full explanations by clinicians on the purposes of organ and tissue removal and retention;

    – effective participation by families in taking key decisions so that any agreement to such procedures is freely given;

    – that, with the support of the public, the benefits of greater understanding of disease through research, audit and teaching, using retained tissue and organs after death, will help future generations of patients.

15 In considering the need for changes to address the serious problems and concerns about the practice of post-mortem examination, other related issues have become apparent. It is necessary to take stock comprehensively of the inter-relationship between the Human Tissue Act 1961, the Coroners’ system and the process of death and cremation certification, and to consider weaknesses across the spectrum of law and guidance that impact in this area. Questions have also arisen about the importation of human material for teaching purposes, the commercial use of tissue and the controls on taking, using and storing tissue and organs removed from the living both for therapeutic or research purposes.

16 It was beyond the scope of this report to deal with all those wider matters. However, particular areas have been highlighted which will require further detailed consideration to identify workable solutions.

 

Published by the Department of Health
© Crown Copyright 2001
This page last updated 20 August 2001