Appendix 4: Retained tissue following post mortem examination

During the Panel's scrutiny of documents relating to evidence from the pathologists who carried out the post mortem examinations, it became clear that in ten cases tissue had been removed for further examination. This is an essential part of any post mortem in which the findings are not immediately clear and microscopic examination is necessary for confirmation or clarification. 

In accordance with standard practice at the time, relatives were not informed that tissue removal could form part of the post mortem examination, nor were they offered the choice of what should be done with removed tissue material after examination. Under the Human Tissue Act 2004 this is no longer permissible, and as a consequence to remove and dispose of tissue without informing relatives is unlawful.

Guidance for those responsible for such repositories stressed that, following widespread publicity about the practice, it was for relatives to approach hospitals to enquire whether any material had been retained. This guidance was followed correctly in the case of each of these ten Hillsborough post mortems. 

Several bereaved families enquired under this process, and all were given correct information. In two cases this was to the effect that small amounts of tissue had been retained. One family was told initially that no organs had been retained, because the enquiry was understood as relating to whole organs and not to small blocks of tissue. Subsequently, this family was given correct information that some blocks had been retained. The Panel has read the correspondence and it is clear that the initial response resulted from a misunderstanding by the pathologist concerned.

It should be noted that this sequence of events occurred in many hospitals throughout the UK when the 'organ retention' scandal first broke. Invariably, relatives' enquiries were understood to apply only to whole organs. Initial responses to bereaved relatives' enquiries then had to be corrected when it became clear that many relatives were also concerned about the retention of blocks of tissue.

After careful consideration, the Panel took the view that in the particular circumstances of Hillsborough, and bearing in mind the manifest previous failures to communicate fully and sympathetically with families, it should contact each family concerned to enquire if they would like any further information that the Panel had concerning the post mortem examination. Further information was not provided unless it was requested.

The Panel also considered that there were pressing reasons to offer families this information as soon as it had been confirmed, and not to wait until completion of the Panel disclosure process. Whatever the standards in force in 1989, the Panel considered that by current standards it was essential to contact families immediately. While sharing this information with families potentially presented them with a decision on what to do with remaining tissue material, not providing the opportunity for disclosure would amount to a failure in a duty of care.

The Panel's contact with the families concerned was on an individual and confidential basis. Regrettably, information was leaked to the media before the process was completed and the Panel was obliged to issue a statement to clarify the situation. Nine families were contacted and provided with full information on their relative's post mortem examination. Information on tissue retention was provided to those who made a request for further information. The retained material has been treated in accordance with their wishes.

A tenth set of tissue samples was more complicated. It was not identified, being labelled only as 'Hillsborough X'. It is not clear from the documentation why this occurred, because all the deceased had been positively identified at the time of the post mortem examinations. The retention of an unidentified sample was a failure of process. Because of the location of this material it is clear that it originated from one of ten post mortem examinations carried out by one pathologist, now deceased.

After careful consideration the Panel decided to approach the ten families concerned, to offer further information if requested and, if so, to offer them the possibility of a test to see if their DNA matched that in the retained material. Legal guidance was sought on the provisions of the Human Tissue Act 2004, and the Panel was advised that sampling of the retained material would be lawful as long as at least half of the families involved agreed, because on the balance of probabilities the material was more likely to relate to one of those families than not. 

More than half of the families requested testing for themselves, and several of those who did not wish to be tested indicated that they had no objection to the material being used to seek a match with those who were tested. All samples were tested in parallel, and none matched the DNA in the retained material. This material will be retained for a period after the completion of the Panel's work and, in the absence of any further information, will be respectfully destroyed.

The Panel will make no further comment concerning this issue, which remains a confidential matter for the bereaved families directly involved.