The Human Tissue Bill will make consent “the fundamental principle underpinning the lawful removal, retention and use of human bodies, body parts, organs and tissue.”
Figure 1.
Candles at church service representing the children whose organs were retained by Alder Hey Children's Hospital
Credit: PHIL NOBLE/PA
The bill comes after the discovery—during the inquiry into high mortality among babies undergoing heart surgery at Bristol Royal Infirmary—that children's organs and tissue were routinely retained without the consent or knowledge of their families.
It later emerged that the practice was also common at the Royal Liverpool Children's Hospital in Alder Hey. At both hospitals organs were removed and stored without parents' knowledge and children's bodies were buried with major organs missing.
The bill would create an authority to regulate transplantation and would also introduce regulation of postmortem examinations and of the retention of tissue for education and research.
The Department of Health said the aim of the bill was to achieve a balance between the rights and expectations of patients and families and the importance of research, education, and training.
The chief medical officer, Liam Donaldson, and the chairman of the Bristol inquiry, Ian Kennedy, had called for reform of the law.
The reform was welcomed by doctors' organisations and by families from Liverpool and Bristol whose children's organs were retained without their knowledge.
BMA chairman James Johnson said: “We are in favour of proposals to regulate the use of human tissues after death. The public needs reassurance that strict guidelines and procedures govern the use of tissues that are used for donation or research purposes.”
Cancer Research UK was “delighted” that the bill was included in the next parliamentary programme. Its chief executive, Alex Markham, said: “A bill on human tissues will provide a consistent legal framework for all issues relating to the taking, storage, and use of human organs and tissues.”