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Consent conundrum cripples coroner CJD census

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."


  1. Report this comment

    Dr Steve Milkins said:

    I am a Pathologist and HTA designated individual for my trust. To retain tissue not part of the investigation into the cause of death without explicit consent from relatives would a. be beyond the authority of the Coroner to request and b. be illegal under the Human Tissue act 2004 .

  2. Report this comment

    Terry S. Singeltary Sr. said:

    >>> a. be beyond the authority of the Coroner to request and b. be illegal under the Human Tissue act 2004

    Friday, July 17, 2009

    Revision to pre-surgical assessment of risk for vCJD in neurosurgery and eye surgery units Volume 3 No 28; 17 July 2009

    Tuesday, August 12, 2008

    Biosafety in Microbiological and Biomedical Laboratories Fifth Edition 2007 (occupational exposure to prion diseases)

    Thursday, July 23, 2009

    UW Hospital warning 53 patients about possible exposure to rare brain disease

    Tuesday, April 21, 2009

    Doctor Antonio Ruiz Villaespesa, pathologist and CJD researcher deceased because of Creutzfeldt-Jakob Disease SPAIN

    Tuesday, August 11, 2009

    Characteristics of Established and Proposed Sporadic Creutzfeldt-Jakob Disease Variants

    Sunday, August 09, 2009 CJD…Straight talk with…James Ironside…and…Terry Singeltary… 2009

    Tuesday, August 18, 2009 BSE-The Untold Story – joe gibbs and singeltary 1999 – 2009

    thank you, kind regards,

    Terry S. Singeltary Sr. Bacliff, Texas USA

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