Family attitudes to research using samples taken at coroner's postmortem examinations: review of records

Introduction

The response of families asked for cadaveric blood and tissue may have been affected by adverse publicity about hospitals retaining tissues and organs removed at post mortem without consent. The tissue bank at Peterborough was asked to contribute control samples to an English Department of Health funded study to validate tests for viral markers in postmortem material. The study required samples of cadaveric blood (10–20 ml), lymph node (one intrathoracic), and liver (2 cm³).1 Peterborough was selected because it does not have a high prevalence of bloodborne viral infections and because the tissue bank had the infrastructure to retrieve postmortem tissue for research.2 Participation in this study enabled us to evaluate the attitudes of families who were asked to allow the pathologist to take samples for research during a postmortem examination being done at the request of the coroner.

Participants, methods, and results

The coroner's officers identified deaths reported to the coroner that required postmortem examination and fulfilled the requirements of the viral markers study.1 The officers contacted families by telephone. After dealing with routine coroner's procedure, the officers asked the family members whether they were prepared to be contacted by a research nurse from Peterborough District Hospital. The officers explained that this would require a telephone interview of up to half an hour and that the research was being done to investigate tests for bloodborne viruses in relation to tissue transplantation. Reasons for refusal were recorded and sent to the research nurses.

The research nurses were given the name and contact number of family members willing to participate. The nurses then conducted the telephone interview according to the study protocol and notified the mortuary staff and pathologist if the family consented for retrieval of blood and tissue at the time of postmortem examination. The interview included lifestyle questions to allow researchers to determine risk factors for hepatitis and HIV if the viral marker tests gave positive results. Reasons for refusal were recorded.

Of 106 families asked to take a telephone call from a research nurse, 75 (71%) agreed to do so. The table gives the reasons for refusal to participate. One family member admitted a negative influence from media coverage about organ and tissue retention and wanted the deceased to remain “whole.” The interview was not completed in five cases (family not available in three cases, nurse unavailable in one, and interview terminated because of distress in one case). All those who completed the interview agreed to samples being taken.

Comment

Two thirds of families gave telephone consent to blood, lymph node, and liver samples being taken at postmortem examination and used as control samples in a study designed to validate tests for viral markers. The negative effect of media attention on postmortem retention of organ and tissues was small. The results compare with a 98.8% consent rate for use of surplus tissue in research among surgical patients from the same hospital trust.3 These findings reinforce the notion that attitudes about using tissue from dead people are different from those about tissue from the living.

The attitudes of recently bereaved families in our study are similar to those described in qualitative research published by the Retained Organs Commission.4 The commission's research found that most of the public support use of postmortem material for medical purposes and identified consent as an issue. A review from the NHS Centre for Reviews and Dissemination concludes that few data are suitable for inclusion in a systematic review of the psychological aspects of organ and tissue donation and suggests that primary research is a more suitable option.5