Banking on regaining public confidence

Abstract

The issue of what happens to human tissue after postmortem examination has been under scrutiny in the UK after a public inquiry, published in January 2001, found that the organs of 3500 children had been retained without their parents' consent at the Royal Liverpool Children's Hospital in Alder Hey. A census of retained organs for the years 1970 to 1999, ordered by the chief medical officer Liam Donaldson in the wake of the Alder Hey scandal, found that 44% of the retained organs stored in medical and academic facilities in England were brains. Now, a UK government report, which was published on May 12, 2003, has revealed that around 20 000 brains were retained after autopsies between 1970 and 1999, the majority without the next of kin's consent. Until recently, society has accepted that a postmortem examination helps establish the cause of death. The covert retention of organs without relatives' consent, however, has severely undermined public confidence in doctors' handling of bodies after death. The latest report highlights several cases in which family members have been traumatised by the discovery that their relative's brain has been used for research, put in storage, or was incinerated without their knowledge. How could this have happened? It appears that most pathologists were well aware that tissue taken during post-mortem examinations ordered by hospital doctors could only be retained with the consent of the relatives. However, it seems that there was a widespread misconception that the next of kin's consent to retain organs was not needed for post-mortem examinations ordered by coroners. Many of the pathologists thought they were acting in the public's best interest by retaining organs and did not realise that they were breaking the law. As the UK law currently stands, the coroner can order an autopsy to determine the cause of death, but must obtain the family's consent to retain the organs indefinitely. Restoration of public confidence is an urgent priority and the Isaacs report makes some good suggestions as to how this can be achieved. Most importantly, the same ethical considerations must be given to research done on tissue obtained during autopsy as would be given to living patients. In the past, pathologists may not have discussed the postmortem examination, and the issue of organ retention, with relatives in case it caused them distress. This attitude, however well meant, is no longer acceptable. Relatives have the right to decide what will happen to their loved ones' organs, but they should also be offered the opportunity not to be told the full details of the post-mortem examination if this would prove to be too painful for them. Maintaining the right balance is clearly very tricky, but the importance of obtaining tissue for research cannot be overestimated. Previously, it was often assumed that if relatives consented to the retention of organs or tissue to help diagnose the cause of death then this consent covered research or teaching as well. Despite the competitive nature of academic medicine, researchers must not be tempted to “speed up” their research by bending the rules and by not following the necessary consent procedures; it seems likely that the Human Tissue Act will be rewritten in the near future to allow the state to punish wrongdoers. Once the tissue has been donated, the onus is on the researchers to do the experiments as promised. There have been examples in the past where brains have been incinerated unused because the researchers decided not to do the study. The Retained Organs Commission was established in April, 2001, in response to the public inquiry into the Alder Hey scandal. The commission will shortly provide Department of Health ministers with formal advice on the future use and disposal arrangements for unclaimed and unidentifiable human bodies, body parts, organs, and tissue. Some fear that they will advise that all tissue obtained without consent should be destroyed, assuming that the relatives could not be tracked down. However, this approach is flawed for two reasons. First, it is debatable whether relatives, who have already gone through the grieving process once, would want to know that their loved one's organs were not buried or cremated with the rest of the body. Second, it would be a disaster if neuropathology collections were to be destroyed just because many samples from the collections were obtained without permission. What happened in the past was wrong and we must ensure that it never occurs again. But we also have a duty to ensure that archival material continues to be of benefit to future generations. Altruism can occur even after death, and we should assume, unless there is strong evidence to suggest otherwise, that this is what the deceased would have wanted.