Brussels, 15 Mar 2005
Following two high profile inquiries, in 2001, into the improper retention of organs without the consent of the bereaved families, public confidence in the post-mortem system in the UK was undermined, with damaging consequences.
Indeed, the proportion of post-mortems carried out following deaths in hospitals in the UK has declined from 50 per cent in 1960 to less than five per cent today.
Concerned that potentially vital research is being hampered, the UK's Medical Research Council (MRC) is funding a two-year pilot project to collect human brains and tissue following post-mortems.
The new 'brain and tissue bank for the investigation of sudden death', established at the University of Edinburgh's department of pathology, will collect samples from post-mortem examinations ordered by the procurator fiscal in Edinburgh, but only when families have given explicit consent. It is hoped that if people are more aware of their role in medical research, they will be more willing to grant consent for tissue samples from post-mortems to be retained.
'The publicity around post-mortem examinations has created an opportunity, because the forensic pathology post-mortem service has come into the public domain - people have a better understanding,' Jeanne Bell, Professor of Neuropathology at Edinburgh University and Head of the new centre told The Scotsman.
'I think everyone has learned the lesson about being more open and transparent. I think we didn't keep up with the public need to know and wish to consent. We thought we were intruding, and I think that was generally acknowledged to have been a grave mistake. As far as the procurator fiscal cases were concerned, it was a grey area and we were not able to approach families and ask them how they would feel about our doing further studies. There was no malice aforethought. I think that, if anything, we made the mistake of trying to protect people from knowledge,' she added.
The MRC hopes the new tissue bank will boost research and improve the diagnosis and treatment of many poorly understood disorders, such as sudden infant death, sudden cardiac death, suicide and depression, drug abuse, epilepsy and the possible effects of air pollution.
The work of Professor Bell and her team will build on more than a century of detailed examination of the human brain after death. As Professor Bell explained, many large neuropathology departments have brain banks that have made it possible for scientists to achieve major breakthroughs. For example, research into the link between Parkinson's disease and a deficit of dopamine in the nerve cells of the brain stem led to a successful treatment, Levadopa. Brain banks have also been invaluable for research into dementia including Alzheimer's, CJD, and assessing brain damage in boxers.
The resources of the brain and tissue bank will be made available to the scientific community at large in a bid to contribute to UK research in human diseases.