Report Of A Census Of Organs And Tissues Retained By Pathology Services In England PDF Download

A census of organs, body parts and tissues held by NHS pathology services was carried out to determine the size and nature of such stores. The census was conducted in the light of public concern expressed about events at Bristol Royal Infirmary and Alder Hey Hospital where there were reports of the widespread retention of children's organs for teaching or research purposes without the knowledge or consent of parents. The census also asked for information on consent policies and on the procedures for the disposal of organs or tissues no longer required. This report analyses the information from the census. It aims to: provide details of the approximate numbers of organs, body parts and tissues held by pathology collections in England; describe the types of organs and tissues that have been retained; indicate when the retention took place; assess the number of services with written policies on consent, retention and disposal of human organs and tissues; outline policies on asking for consent from families of the bereaved for the retention of human organs and tissues for diagnosis, research and teaching; identify policies and protocols for the disposal of human organs and tissues retained after post-mortem. The census methodology and definitions used are included. The report concludes that the scale of retention and body parts, although not large in proportion to the number of post-mortems which have taken place 1970-1999, still represents holdings from a substantial numbers of individuals with close relatives who may still be alive. The majority of these will have taken place after relatives signed forms presented to them shortly after the death occurred. Whilst some relatives will have fully understood what they were agreeing to, the unsatisfactory nature of the agreement forms, the lack of information and the lack of counselling support or advice at a distressing time, suggests that agreement to retention fell well short of fully informed consent in many cases. For many people, the fact that their loved one's organs are still held will be a surprise and a shock. The retention of body parts may be more unexpected and shocking. Retention of organs, body parts or tissues after post-mortem examination is governed by one or other of two pieces of legislation: the Coroners Act 1988 (and Coroners Rules 1984) or the Human Tissue Act 1961. The report concludes that the adequacy of these two pieces of legislation and the way in which they have been interpreted and operated is at the heart of this controversy over organ and tissue retention. The Human Tissue Act, the letter of which has been followed in the way in which permission for many post-mortems and subsequent retentions were obtained, uses a concept of "do not object" which now seems outmoded and paternalistic. Retention of organs or tissues following a coroner's post-mortem is not uncommon. The circumstances in which these take place does not seem to be covered by the legislation governing coroners' post-mortem examinations. The report expresses regret that the sensitivity shown in the arrangements for foetuses and stillborn babies has not extended to the disposal of tissues and organs, particularly from infants and children who have died. The Report recognises the value of archived tissues and organs for medical research and education but stresses the importance of ensuring that the obtaining and subsequent disposal of tissues and organs is in line with society's current expectations, that tissues and organs are treated with the respect they are due, and that the wishes of the relatives are paramount.