Potentially vital information on the prevalence of Creutzfeldt-Jakob Disease in the UK is still not being collected, as coroners believe they are unable to test for it.

In a story now getting wide pickup, the BBC this morning reported that coroners are refusing to routinely test for CJD during post mortems, arguing that their job is only to discover the cause of death and not to collect such data.

The government wants routine tests but Michael Powers, a coroners’ law expert, told the Today programme, “This is a function which is outside the coroner’s statutory authority, because they are not – those tests – directed to ascertaining the [cause of] death in an individual case. If you step outside the coroner’s authority different considerations apply, most particularly of course consent.”

To date there have been 168 ‘definite and probable’ cases of vCJD in the UK, according to the Spongiform Encephalopathy Advisory Committee (pdf).

John Collinge, of University College London, told Today, “There is a concern that what we’ve seen so far may be the first wave … and that there may be more people silently infected in the community than the number of clinical cases would suggest.”

Powers said he would welcome a change to the law to enable testing and the Department of Health is running a pilot project to obtain samples from post-mortem examinations later this year (Daily Mail).

The issue is not entirely a new one however. In February last year the Guardian reported on the same issue, and was told by coroners’ society secretary André Rebello that “Coroners want to avoid any misapprehension that they might be ordering a post-mortem examination for access to research material rather than our statutory function … Even if this was not inappropriate, coroners have neither the resources nor the time to be involved."