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Interim Report: Removal and retention of human material
Part II: Evidence
A. The national scene
- Here we set out the national context and framework against which the conduct of post-mortems and the retention of human material took place.
- A post-mortem may be carried out under the authority of the coroner for one purpose only: to establish the cause of death (and, if necessary, to establish the identity of the deceased). There was, however, a long-standing habit among pathologists of taking and keeping human material, other than that required to establish the cause of death, for other purposes; for example, for research or education. Equally, once the post-mortem was concluded, it was common among pathologists to keep human material, removed for the purposes of establishing cause of death, and similarly, use it for other purposes. For example, Professor Berry[10] cited the following as a benefit of longer-term retention: 'Many of these conditions are rare and no two hearts with a given condition are quite the same. So, by keeping quite a large number, a very large number from the perspective of people who are not pathologists, it is possible to provide somebody who wishes to study a particular anomaly a range of examples that would take them many years to see in their own practice.'[11] For the most part, parents were wholly unaware of these practices. As Mrs Susan Francombe, mother of Rebecca, said: 'I know I felt if another baby could be helped by the retention and, if that was the reason, then we would have said yes; but the fact that they were kept without our knowledge...came as a very, very big shock.'[12]
- A post-mortem may also be carried out at a hospital at the behest of the relevant clinicians or the parents. It is customarily carried out to assist in understanding the cause of death and what can be learned for future care. This type of post-mortem is variously described as a 'consent' or 'permission' or 'hospital' post-mortem. As a matter of law, consent as such is not required. The hospital may authorise the post-mortem, provided reasonable enquiries have been made to determine whether any relative (in our case the parents) objects. As a matter of practice, it was customary to ask parents to sign a form consenting to such a post-mortem. The form also sought consent to the removal, retention and use of human material for purposes other than to establish the cause of death. To this extent, as has been said, parents were not consenting, strictly speaking, to a post-mortem. Though the forms used referred to 'tissue', they differed from hospital to hospital and did not, however, indicate what the term 'tissue' might mean (that it could include a whole organ, for example) nor what uses such tissue might be put to, except in the most general terms.[13] Furthermore, the forms were signed at a time of the greatest distress and, ordinarily, without advice or guidance.
- During the period of the Inquiry's terms of reference and, indeed, for some time after, it was not generally questioned that pathologists or clinicians could take, or at the very least, use human material at a Coroner's post-mortem for purposes other than to establish cause of death. Neither was it seen as necessary to involve parents, except in the general way just mentioned, in the case of hospital post-mortems.
- The benefits to be gained were set out by Professor Anderson in his evidence. He explained: 'We retain the hearts because we examine them for the purposes of our research. We demonstrate them. We make them available for others to study ...I believe it is essential that we keep on adding to these collections so that we have the capability of teaching tomorrow's surgeons and tomorrow's paediatric cardiologists better than we have been doing at the present time.'[14] Dr Eric Silove[15] wrote of the value of 'inspecting' post-mortem hearts in order to get a proper understanding of congenital heart abnormalities: '...it was always impossible to get a proper three dimensional appreciation unless one actually inspected [the heart]'. He continued: 'As a result of looking at numerous hearts with similar or different abnormalities, from numerous different angles, it does become possible to visualise the appearance of an echocardiographic slice through a given plane of the heart and to recognise the abnormality.'[16] These benefits are not specific to paediatric cardiac services. In the Chief Medical Officer's Interim Guidance on post-mortem examination, issued in March 2000, he notes the widely held understanding that appropriate examination of organs and tissue at post-mortem is essential in improving clinical care, maintaining clinical standards, increasing our understanding of disease and in supporting clinical research and training.
- The fact that taking and using human material were important for medical development, research and education was seen by the medical-scientific community as sufficient justification in itself. By and large, during the greater part of the period of the Inquiry's terms of reference and to a degree even later, the medical-scientific community did not appreciate that there might be issues of an ethical and legal nature which needed to be addressed. Equally, Coroners and the Department of Health were largely uninvolved with the issues. They offered little by way of guidance during the period of the terms of reference. Any advice was intermittent: the Royal College of Pathologists relied on Professor Knight's 1985 article Legal Considerations in the Retention of Post-Mortem Material[17] to serve as guidance, whereas the Home Office sent a circular to all Coroners in 1989 advising them that no 'tissue' should be 'taken' (two words not free from difficulties) for teaching or research when conducting a Coroner's post-mortem examination.[18]
- The fact that parents and the public were unaware that human material was routinely taken and used for a variety of purposes and that large collections existed around the country was unacknowledged or ignored. There was, in essence, a professional arrogance, justified when necessary by the recourse to traditional paternalism, that parents, on this view, are best kept from the details but would be thankful if they knew what was being done.
- Fundamentally, there was a social and ethical time bomb waiting to go off. It is no surprise that the explosion of anger, when it came, was huge. The cause lay in two conflicting attitudes. For the parents of a recently deceased child, human material, certainly substantial specimens such as organs and parts of organs and even smaller samples, are still thought of as an integral part of the child's body and, thus, are still the child. For the pathologist and clinician, the material is regarded as a specimen or an object. It is de-humanised.
- It is fair to say that from the latter part of the period of the Inquiry's terms of reference, an awareness was growing among pathologists of the need for greater clarity in, and regard for, the relevant legal and ethical principles. Professor Berry, the pathologist in Bristol since 1983, was one of the leading figures, particularly from 1995 to 1998 in his capacity as Chairman of the Royal College of Pathologists' Specialist Advisory Committee on Paediatric Pathology. Eventually, in 1998-99, the college began to review its guidance and in June 1999 Professor MacSween[19] circulated a consultation paper which culminated in the publication of new guidelines in March 2000.[20]
Footnotes
10 See Appendix [Return to text]
11 T55 p. 141 [Return to text]
12 T68 p. 24 [Return to text]
13 The Inquiry notes that some hospitals, such as Guy's, referred specifically to organs as early as the mid-1980s, and that others, such as Great Ormond Street Hospital for Children, introduced a reference to organs in the early 1990s. Yet these appear to have been exceptions [Return to text]
14 T45 p. 109. [Return to text]
15 A member of the Inquiry's expert group and consultant paediatric cardiologist at the Birmingham Children's Hospital [Return to text]
16 WIT 0546 0003 - comments from Dr Silove [Return to text]
17 Knight, Prof. B.H., 'Legal considerations in the retention of post-mortem material', Bulletin of the Royal College of Pathologists 1985;52:3-4; UBHT 0308 0044-47. See Appendix [Return to text]
18 WIT 0043 0153 [Return to text]
19 See Appendix [Return to text]
20 Royal College of Pathologists, Guidelines for the retention of tissues and organs at post-mortem examination, March 2000 [Return to text]