According to BBC News, coroners in England and Wales are reluctant to carry out tests for vCJD because it is outside their scope of their job and might undermine their neutrality, despite pleas from scientists and the government that this might be the only effective way to determine how many people might be infected.

Professor John Collinge, a member of the government appointed Spongiform Encepalopathy Advisory Committee (SEAC), told the BBC that he hoped the coroners would be able to do the tests because he couldn’t see “any other way for us to get this information at the moment”.

vCJD is short for variant Creutzfeldt-Jakob disease, a brain-wasting disease that humans get from eating beef from cattle infected with Bovine Spongiform Encephalopathy (BSE). There is also an unknown risk of cross infection from blood transfusions and surgery.

The prion proteins that cause the disease are found mainly in the brain and spinal cord, although lower levels may be found in the spleen, tonsils and other lymph tissue.

Both vCJD and BSE belong to a family of diseases known as transmissible spongiform encephalopathies (TSEs), that have been recognised for hundreds of years. However, the first case of vCJD occurred in 1995 and it was not recognized as a new form of CJD until 1996, the same year that an article in The Lancet first suggested evidence for a link to BSE.

Since then, 164 people have died of vCJD and over that time new regulations have been brought into the UK and other countries to eliminate BSE from the human food chain, so it is thought that any prevalence in the population at large stems from infections that occurred in the 1980s when people may still have been eating BSE infected beef and products derived from it.

But, while the numbers of deaths from vCJD may suggest the prevalence is low and thus the risk of person to person transmission is also low (eg via blood transfusions, surgical operations and dental procedures), we can’t rely on this evidence alone to tell us how many people could be carrying the disease without realizing it.

For example, how can we estimate the number of infected people who will either develop the disease some time in the future (preclinical infections) or who carry it and have the potential to transmit it to others, but will never develop the clinical disease (subclinical carrier infections)?

A study published in the Journal of Pathology in 2004 that surveyed appendix tissue samples suggested that there could be considerably more people infected with vCJD than predictions that rely on clinical cases alone would imply.

Another study published in BMJ in May this year that reported the first results from a large tissue survey in Britain also called for more data through continuing to archive and test tonsils, and other anonymous tissue samples, from people born before 1996.

An editorial review of that study also suggested that precautions to avoid transmission of vCJD between humans and surveillance of disease in the UK and in the rest of Europe should continue.

However, while appendices, tonsils and other organs removed surgically might be a source of tissue to test for dormant vCJD, they would not produce a representative sample for testing subclinical infections, said SEAC.

In a position statement dated August 2008 they said:

“As SEAC has previously concluded, the most effective approach to establish the prevalence of subclinical infections is the testing of spleen and, when possible, brain samples collected from Coroners’ autopsies.”

One of the concerns on the part of coroners appears to be that taking on such a task would open the floodgates to them being asked to do what essentially constitutes research, which is not a part of their role.

It is likely that it would also need a change in the law, since asking coroners to produce and possibly store samples for research is outside of their legal powers. They would also need a lot more money and resources to establish what is essentially a tissue archive.

There are also ethical considerations such as whether the coroner should be asking relatives for permission to use the deceased’s tissue samples for research, as opposed to establishing the cause of death.

Christine Lord, a journalist and campaigner whose son Andy Black died nearly two years ago of vCJD at the age of 24, told the BBC that coroners could save lives by agreeing to do the tests.

Sources: BBC News, Kent County Council, Department of Health.

Written by: Catharine Paddock, PhD