Creutzfeldt-Jakob disease: Coroners wrong to say no to post-mortem tissue collection, UK academics argue

The Coroners' Society of England and Wales (CSEW) did not recognise its "moral obligation to protect public health" from potential new risks associated with variant Creutzfeldt-Jakob disease (vCJD) when it decided not to allow the collection of tissue from autopsies. That is the conclusion of a paper co-written by a researcher at the London School of Hygiene & Tropical Medicine, which has been published online and is set to appear in a forthcoming edition of the journal Public Health.

The authors say they believe the reasons given by the CSEW were insufficient to justify not taking part in the study and call for a wider review of the role of coroners in future public health measures. They also criticise the move by the Government to abolish the proposed position of Chief Coroner as part of the Public Bodies Bill which is set to have its final reading in the House of Lords on Monday May 9.

Until 2003, all cases of vCJD -- a fatal brain-wasting disease -- in humans were caused by exposure to bovine spongiform encephalopathy (BSE) in the diet.

More recently a small number of infections are thought to have resulted from blood transfusions from donors who did not know they were infected with vCJD.

It is also believed that iatrogenic transmission may occur as a result of contaminated surgical instruments -- a concern which prompted hospitals in Essex and Wales to contact patients earlier this year.

In response to the evidence that vCJD has the potential to emerge as a second-wave infection resulting from human-to-human transmission, the Health Protection Agency (HPA) attempted to create a post-mortem tissue archive.

Its aim was to determine the prevalence of abnormal prion protein, which is a marker for vCJD infection, in the UK in order to determine the efficacy of current precautionary measures and to determine if further measures might be necessary.

But following a protracted correspondence with the Chief Medical Officer, the CSEW declined to participate, citing issues including its legality, cost and feasibility, concluding that taking part would "adversely affect the independence of the coronial service and would further erode public confidence."

According to the authors of the paper, "declining to participate in this study was misguided and illustrates a considerable failure by the CSEW to recognise coroners' moral obligation to protect public health."

They add: "The protection of public health is an appropriate and vital obligation of government officials as such protection helps to ensure the conditions necessary for individuals and groups to live healthy and safe lives."

Lead author Catherine McGowan, based in the Faculty of Public Health and Policy at LSHTM, said: "A Chief Coroner -- one with a clear understanding of the role of the coroner's service in protecting the public good -- should be able to facilitate this type of public health survey in the future."

"Despite the valiant attempts of the House of Lords to save the proposed position of Chief Coroner from abolition under the Public Bodies Bill, the position is now likely to be axed by the House of Commons. This seems a grave mistake."