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Final report of Organ Retention Group

24/11/2003

The final report of the Independent Review Group on Retention of Organs at Post Mortem is published today.

The group, chaired by Professor Sheila McLean, was established in September 2000 to review matters arising from the retention of organs at post-mortem without valid parental consent.

In this third report the Group has focused on three particular issues:

  1. developing standard information leaflets and authorisation forms;
  2. addressing issues about Procurator Fiscal post-mortem examinations; and
  3. drawing up criteria for local Research Ethics Committees (RECs) when considering research involving human tissue retained at post-mortem

Announcing the recommendations Professor McLean said:

"From the beginning of our Inquiry our concern has been to ensure that the wishes of the deceased or - where relevant - the wishes of parents should be decisive in terms of post mortem examinations.

"In this final report, we have produced authorisation forms which will reflect this primary intention. We have already explained our preference for the use the language of authorisation rather than consent, and are pleased that this has been accepted by the Minister. Obtaining authorisation is a central aspect of the lawfulness of the post mortem examination process.

"This final report represents the culmination of more than three years work. I would like to thank the family support groups and individuals who gave evidence to us and those who have worked with us throughout this period of time.

"It is our dearest hope that the reports we have produced over the three years of our existence will have persuaded them of the seriousness with which their concerns have been taken and that they may now feel that their struggle has been satisfactorily concluded."

Professor McLean set out some of the main conclusions of the final report.

They included:

Authorisation Forms

As drafted forms contain a single authorisation covering research, medical education, training and audit purposes. Any consultation on the report should specifically ask for views on whether families should be able to consider as a separate issue the question of authorising the research use of tissue blocks and slides or organs retained at post-mortem examinations.

All hospital staff who will be involved in seeking authorisation must be properly trained, and the authorisation forms should act as a focal point for the training.

There needs to be greater public awareness of the hospital post-mortem examination process. The Executive should explore the possibility of developing an equivalent of the Teaching Resource Pack which has been produced on organ donation and transplantation.

Procurator Fiscal Post-Mortem Examinations

The Crown Office and Procurator Fiscal Service (COPFS) should some time within the next 12-18 months arrange for an audit of the effectiveness of the arrangements it has now put in place for communications with families. The view of families as users of the service, must be canvassed.

There should be a designated person in each Fiscal's office with the responsibility for dealing with families, along the model of the death unit co-ordinator in Edinburgh.

The Review Group is more convinced than ever of the need for the appointment of Bereavement Officers, whose duties should be clearly defined to include speaking to relatives in cases of death in hospital resulting from medical mishap.

Past experience suggests that there needs to be closer liaison between doctors and Fiscals.

Once the tissue blocks and slides derived from a Fiscal post-mortem examination are no longer needed for the Fiscal's purposes, families should be given the same opportunity to authorise their use in the same way, and for the same purposes, as can be authorised following a hospital post-mortem examination.

Ethical Review of Research Projects Involving Human Tissue Retained at Post-Mortem Examination

Provided the family has not objected, certain research on organs and tissue retained under past practice (prior to December 2000) can already be carried out, following earlier recommendations from the Review Group.

The research must be likely to result in significant outcomes and must also be non-destructive. Research Ethics Committees (REC) in such cases should have available to them a statement from the relevant Trust as to the "consent" policy which was in place at the time of the removal of the organs or tissue, and should carefully scrutinise these to ensure that consent for what is proposed was indeed obtained.

Once the new authorisation forms are in place the REC should require all research applications to contain a copy of the form.

Page updated: Wednesday, July 21, 2004