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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
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.'
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.'
- 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.
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.'
Dr Eric Silove
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.'
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
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.
- 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
circulated a consultation paper which culminated in the publication
of new guidelines in March 2000.
12 T68 p 24 [Return
16 WIT 0546 0003 - coments
from Dr Silove [Return to text]