Human Tissue Bill published 5/12/03. By the Public Health Genetics Unit The long awaited Human Tissue Bill was published on 4 December 2003, almost five years after the first internal inquiry into organ retention at Alder Hey Children's Hospital in Liverpool.

The eventual publication of reports in 2000 concerning Alder Hey (the Redfern Report) and Bristol Royal Infirmary (the Kennedy Report) suggested that many institutions had stores of tissue samples for which consent had never been obtained. This fuelled a stream of revelations from hospitals around the country confirming that thousands of hearts, brains and other body parts had been retained without permission.

The scale and scope of the retention was reinforced by a census of retained body parts carried out by the Chief Medical Officer in 2000.

Despite pledges of immediate action by the Chief Medical Officer, there has been a delay of nearly three years in publishing a revised Bill for a number of reasons. Extensive consultation by the Department of Health and by the Retained Organs Commission (the organisation set up to oversee the return of tissue samples to bereaved families) and various professional bodies has meant that the resulting legislation has had to be seen to be balancing the rights and expectations of individuals and the considerations of research, education, training, pathology and public health surveillance to the population as a whole.

The situation was compounded by the inefficiency of some hospitals in returning bodies and organs to parents, so that in some cases parents had to endure second or third funerals, years after the death of their child.

The simultaneous scandal revealed in the Shipman reports published this year and a report by Dr Jeremy Metters, the HM Inspector of Anatomy, which showed that retention was on an even larger scale than had previously been thought, meant that the resulting Bill is a much more comprehensive review of legislation than was at first envisaged.

The resulting Bill establishes a new body – the Human Tissue Authority – which will replace the Retained Organs Commission, due to close on 31 March 2004. The Authority will have oversight of the use of human tissue for a widely drafted series of purposes including anatomical examination, education and training relating to human health and research, research and transplantation. As such it will subsume HM Inspectorate of Anatomy and ULTRA. Any person carrying out any of the activities specified in the act must be licensed and there are strict guidelines and procedures governing the use of tissue to be used for donation or research purposes.

The legislation provides for consent from the donor or from a hierarchy of family members to be the basis of the keeping or use of tissues and cells. It also establishes an offence of analysis of DNA without consent as envisaged in the recent White Paper on Genetics.

Article courtesy of the Public Health Genetics Unit .