The portrayal of the organ-retention scandal at Alder Hey hospital was reminiscent of a Frankenstein movie - the evil scientist (played by the resident pathologist) hoarding dead children's organs in a hospital basement without their parent's consent. Accusations were flying: the pathologist blamed hospital management for not informing parents what a post-mortem examination might involve, the parents said they gave consent for post-mortems, but not for the retention of organs and eventually the hospital was forced to apologise and fire the pathologist.

Even though the inquiry is over, the ghost of the scandal has not been laid to rest. While the parents of the children whose organs were retained may seem like the obvious victims, in the long run vital medical research, training and diagnosis could be jeopardised. Fears of a drop in organ donations for transplant have not been realised, but, according Dr Anne Thorpe of the British Medical Association's pathology committee, the number of post-mortems performed, has plummeted. Parents are not consenting to post-mortems as easily, and doctors are unwillingly even to ask. Pathologists are being vilified, and many doctors are choosing a different field of specialisation, because of the negative publicity. As Irene Scheimberg, consultant paediatric pathologist at the Royal London Hospital told the Health Service Journal: ”We have been turned into ogres who like to cut up dead babies.” The Royal College of Paediatrics and Child Health reported that one in five consultant positions in paediatric pathology were empty, and just under half of all training posts were vacant.

The issue of organ retention is understandably sensitive. With the exception of Alder Hey, pathologists have been following best practice for years, two pathologists, Phillip Cox of Birmingham's Women's Hospital and Rosemary Scott of University College London wrote in the journal Archives of Disease in Childhood. "Gory details" of dissection were not deliberately concealed, but not described in detail either, to avoid distress.

The acting chair of the Alder Hey support group, Ed Bradley, said the attitude of the Alder Hey pathologist, Professor Dick Van Velzen, towards parents were both patronising and arrogant. And perhaps this paternalistic attitude towards patients is the real problem. It has always been assumed that parents would be reluctant to consent to organ retention, but this could be because the need for both post-mortems and organ retention has not made clear and the benefits may not be as obvious as those of organ donation.

Post-mortems are used to determine cause of death, as well as for teaching purposes. The Archives article states that half of baby post-mortems performed around the time of birth gave important information, and one in 10 resulted in a different diagnosis of cause of death. This could have major implications for the parents, since the post-mortem could highlight possible congenital disorders, which may have relevance for future pregnancies.

At the moment there is such a shortage of paediatric pathologists that parents are waiting weeks for a post mortem. Since they are unable to bury their child, this is causing further emotional distress to parents already traumatised. Pathologists are also involved in the diagnosis of disease in tissues. Due to the current shortfall in staff, diagnosis of childhood cancers has been delayed.

There are also implications for new treatments in development, such as gene therapies for certain cancers, as Professor Nicholas Wright, acting principal of Imperial College Medical School and president of the Pathological Society of Great Britain and Ireland points out. "Without an autopsy, you will not be able to know what is going on." And if the pros and cons of a treatment can't be assessed, it may never become available.

The importance of organ retention is completely underrated. Donated body parts are used for scientific research into diseases and the treatment of diseases, as well as for teaching purposes. New drugs need to be tested on human tissue, since one can only generalise so far from animal studies. Most potential new drugs fail in the last stages of clinical trials, due to poor efficacy, toxicity or unwanted side effects. Professor Wright states: "When we are teaching about disease nothing is better than looking at the actual organ with the disease in it."

The thought of large numbers of organs in storage probably horrifies most people, especially since many of the samples are simply kept without being used in the short term. However, the benefits of organ banks are intended to be long term. Imperial College keeps 3,000 specimens of brain and spinal cord funded by the Multiple Sclerosis Society. Researchers use this bank to try and understand the disease, the causes of which are still unknown. Researchers need to have access to large samples of tissues as new methods of diagnosis or new treatments become available. As Dr Michael Wilks, chairman of the British Medical Association's ethic committee states: "We would know very little about the new form of CJD if we hadn't had a huge tissue bank to look back on."

Currently the NHS and the government have set out draft guidelines on the removal, retention and use of human organs and tissue. In 2001, the government accepted the Chief Medical Officer's recommendations, which included a revision of the law in this area. New standardised consent forms, accompanied by leaflets, have been drafted for use throughout the NHS. The forms are more detailed, but will include better bereavement counselling to offset their possibly upsetting nature. Hopefully these new guidelines, stressing closer co-operation with patients and families, will ensure that the consent given is truly informed.