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CHAPTER 32

Introduction

The previous chapter set out the principles by which research was authorised by Coroners in a number of locations under Rules 9 and 12 of the Coroners Rules. This chapter describes work at two centres that carried out research permitted under these rules.
Sources of information
This chapter is based on documents, correspondence and the recollections of Coroners and members of the research teams at the locations described.
The Clinical Research Centre, Northwick Park Hospital
The Clinical Research Centre (CRC) was established in 1974 as one of the Medical Research Council's major research institutions. It was located next to the newly built Northwick Park Hospital in Harrow. The CRC included a Division of Psychiatry which was headed by Dr (now Professor) Tim Crow. Other staff in the Division were Dr (now Professor) Eve Johnstone and Dr (now Professor) David Owens(1).
The programme at the CRC was one of the models on which Professor Deakin and Dr Cross based the methodology of the joint programme in Manchester, Chapters 9 and 10.
CRC records
It has not been possible to access the CRC records as these were not retained centrally when the centre closed in the early 1990s. Details of the research programme can be found in publications by those who worked in the Division of Psychiatry, and from contemporaneous correspondence with Dr Chambers, Coroner for the Inner North London District.
Information about the CRC's policy on Ethics Committee referral was provided by the Medical Research Council Headquarters(2), and further details were provided through the recollections of Professor Tim Crow and Professor Eve Johnstone.
Research on schizophrenia and suicides
The study of the brains of suicides referred to in the previous chapter began in November 1978. This study was undertaken with the help and agreement of Dr Chambers. A letter from the Division of Psychiatry shows that when the study was planned there were discussions about the number of suicide brains that might be collected. Another subject considered was the need for Ethics Committee clearance before collection of brains from hospital patients with schizophrenia began.
A letter from Dr Johnstone to Dr Chambers, dated 2 November 1978, states: 'Dr Crow and I are both very pleased that you anticipate being able to provide us with so many brains. Dr Crow does not think that we should approach the hospitals for ethical permission at this stage. As he says there will be no particular hurry, the brains will be in the freezer and the case notes will not change after the patients have died. It is probable that we are more likely to get agreement in terms of specific cases than in terms of general collaboration'.
The letter continues: 'It would seem to us that the best arrangement would be if you let us know the names of any suicides whose brains you obtain together with the names of the doctors and hospitals concerned with them and we will write to them at that point'.	Annex 95
Dr Chambers received a letter from Dr Crow, dated 14 November 1980 reporting progress: 'I am enclosing a list of the names and dates of death of 19 brains we have received so far. We are uncertain about three of the dates of death …'.	Annex 96
Dr Crow wrote on 7 April 1983 to Dr Chambers: 'Finally we have got round to studying the brains of the suicide cases that you sent us. Some of the results look quite interesting, although so far we have not detected any systematic differences between patients and controls'.	Annex 97
Brains of hospital patients collected by the CRC Division of Psychiatry
The brains of suicides were one part of this research programme. Brains from patients with schizophrenia were obtained from patients who died in Shenley hospital.
Documentation of the mental health of patients with schizophrenia
All the patients in long-stay wards at Shenley and other hospitals were carefully assessed several times during life by staff of the CRC Division of Psychiatry. The clinical features of their condition and the treatment they received were fully documented.
Consent procedure
The initial plan had been to approach the relatives for consent to brain removal before the patient died. This was tried and abandoned as impractical. Instead, an index of all patients who had been fully assessed by the CRC research team was set up. This identified the name and address of the patient's next of kin. When a patient who fulfilled the research criteria died, one of the CRC research team would immediately try to make contact with the patient's next of kin and would visit to explain the purpose of the research and ask the relatives for consent for the brain to be removed. While these interviews were undertaken at a difficult time for the relatives, they were largely successful, and most relatives agreed once the purpose of the study had been explained to them.
Where a patient had no known relatives, the NHS hospital manager was approached under the guidance issued in HC(77)28.
Publication of the CRC research
The results of the research were published in 1984.	Appendix 30
St George's Hospital, London
In the early 1980s Dr, now Professor, Horton, Professor Paykel, and others had carried out clinical research on patients with depression at St George's Hospital, Tooting, London. These investigations had full Ethical Committee approval.
Using a similar methodology under Rules 9 and 12, Dr Horton collected brain samples for research on suicide and depression in a programme which followed from his previous collaboration with Professor Paykel on clinical studies. Professor Paykel was, however, appointed Professor of Psychiatry in Cambridge before the research on brain samples began, Chapter 26. Professor Paykel and Dr Horton continued to collaborate on clinical studies after Professor Paykel had moved to Cambridge.
In 1984 Dr Horton and Ms Cheetham, a PhD research student, planned to extend the work on chemical receptors to post mortem investigation of the brains of suicides. He discussed his plans with Dr Crompton, a forensic pathologist who carried out post mortems for Coroners in South London.
Dr Crompton advised Dr Horton to explain the purpose of his proposals to Coroners in London. Dr Horton wrote to Dr Knapman, Coroner for the Inner West District of London, on 16 October 1984.	Annex 98
Starting in October 1984, brain samples were first obtained from victims of suicide whose bodies were taken to the mortuary at St George's Hospital.
To increase the number of samples available, Dr Horton wrote again to Dr Knapman in the early months of 1986 and to a number of Coroners in South, West and Central London to explain the purposes of the suicide study. The Coroners all agreed to the collection of brain samples, subject to conditions in the replies set out below and providing the pathologists were prepared to collect the brain samples.
Dr Horton first wrote to Dr Burton, Coroner for the Western District of Greater London, on 6 February 1986.	Annex 99
Dr Burton replied on 10 February: 'If you are examining the material as a special examination, then you would have access to the other information about the cases that you need…..'. Dr Burton emphasised that a report must be made to the Coroner in such cases.	Annex 100
Dr Horton wrote a further letter to Dr Knapman on 21 April 1986: '… to seek your permission for us to receive suitable brain samples from Dr West and to study these as a 'special investigation from the Coroner''.	Annex 101
Letters from Dr Horton to Dr Gordon Davies and Mr Paul Rose followed similar wording to the letter to Dr Burton.
Dr Gordon Davies, Coroner for Inner South District, replied on 2 May: 'I have no objections to your requests for brain samples from suspected suicides … I would also allow access to the case histories as long as the confidentiality was observed'.	Annex 102
Mr Paul Rose, Coroner for the Southern District, replied to a later letter from Dr Horton: 'I do consider that the research which you are carrying out into the biological basis of depressive illness is most valuable … It seems to me that Dr Knapman's approach permitting a 'special examination' for the Coroner commends itself'.	Annex 103
Brain samples from victims of suicide were obtained from the public mortuary at Thornton Heath from December 1989.
It should be emphasised that all the correspondence about the study consistently refers to provision of samples under Rule 12.
The Coroners permitted Dr Horton confidential access to records to abstract clinical information that was relevant to the study.
In order to compare the brains of suicides with the brains of 'normal' individuals, the Coroners in South London and Croydon districts also allowed samples from the brains of 'normal' people who had met with sudden death, matched by gender and age to cases of suicide to be collected.
The study of suicides and depression at St George's continued until the mid 1990s and over 100 brains were collected. The first report from the study was published in Brain Research in 1988. The paper described the methodology of the study. Later, the results of the study were published in the same journal in 1997.	Appendix 31 Appendix 32
On 10 December 1992 Dr Knapman sent a circular letter to pathologists undertaking post mortems for him. This letter was entitled 'REMOVAL OF TISSUE AT AUTOPSIES'. Dr Knapman emphasised 'I have previously indicated that my staff are not necessarily expected to enquire about donor cards, and consent from relatives must be obtained from pathologists undertaking research projects themselves'.	Annex 104
Ethics Committee involvement
All the studies involving patients at St George's Hospital had been referred to and approved by the relevant Ethics Committee.
For the study of the brains of suicides, Dr Horton in 1984 asked the then Chair of the Ethics Committee if the suicides study should be submitted for Ethics Committee clearance. He was advised that there was no need to do so, as patients were not involved.
Summary
The investigations carried out at the Clinical Research Centre and at St George's Hospital were undertaken specifically under Coroners Rules 9 and/or 12.
All the Coroners had authorised the removal of brains or brain samples from cases of suicide, after they had considered the research protocols and agreed that these investigations satisfied the Coroners Rules.
Some Coroners permitted the collection of brain samples from the bodies of the deceased who had no history of neuropsychiatric disease. These samples were matched for gender and age with the brain samples obtained from suicide cases.
In respect of post mortem reports, practice varied. Few reports recorded the fact that a sample or, in some cases, the whole brain had been removed.
Some Coroners insisted that a report be made to them on every 'special investigation' sample that was removed.
The CRC study
In the CRC investigation, consent of the relatives was obtained before the retention of the brains of patients who had schizophrenia.
Ethics Committees were consulted about this study, but only after some brains of patients had been retained.
The relatives of the suicide cases were not aware that the brains had been removed for a special examination.
Research at St George's Hospital
In 1984 the Chairman of the Ethics Committee was approached about whether the protocol of the suicide investigation should be referred to the Ethics Committee, and indicated that this was not necessary.
The relatives of the suicide cases and 'controls' were not aware that brain samples or, in some cases, the whole brain had been retained for a special examination.
References
1.  Derived from publications by members of the CRC Division of Psychiatry.
2.  Information provided by MRC headquarters staff.

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