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Interim Report: Removal and retention of human material
Letter to the Chief Medical Officer for England
To: Chief Medical Officer for England
May 2000
Dear Professor Donaldson,
- We promised to let you have an Interim Report by the late spring. We hope that it will assist you in your investigation into these matters.
- This Interim Report arises from the BRI Inquiry into paediatric cardiac surgical services. It focuses on parents and their children.
- The Report deals with the removal, retention, use and disposal of human material after post-mortems. We use the term 'human material': 'tissue' and 'organs' are the words usually used but they are unclear and confusing.
- The great majority of post-mortems are Coroners' post-mortems: their purpose is to determine the cause of death.
- Coroners' post-mortems are carried out by pathologists who, in the past, have considered that they were entitled to retain, long-term, human material such as organs (for example hearts) for teaching, research and storage in archives.
- Parents, particularly those of children who have died in hospital, have been shocked. They were almost entirely unaware of this practice by pathologists. In fact, over the past 20 years or so a high proportion of children's hearts have been retained in collections, almost always without the parents' knowledge.
- Human material has also been removed and kept after hospital post-mortems. Parents in the past have often agreed to these post-mortems but without any real understanding of what was involved.
- The law regulating the removal, retention, use and disposal of human material is obscure, uncertain and arcane.
- We identify two ways forward. The first, which we see as essential, is a new Code of Practice backed with appropriate enforcement mechanisms. This does not require passing new law: it simply supplements the existing law. The second option, which is desirable but not essential, involves changes in the law, together with the incorporation into law of the proposed Code of Practice.
- In making any changes we identify two fundamental guiding principles: first and foremost, respect for parents and their dead child; second the value of continued access to human material for the advancement of medical care and treatment.
- We commend this Interim Report to you.
Ian Kennedy (Chairman)
Rebecca Howard
Brian Jarman
Mavis Maclean