Retention and use of human tissue

Retention and use of cadaveric tissue has a troubled history in the UK and in Australia.¹ In the UK, in the aftermath of the Bristol and Alder Hey inquiries of the 1990s,² some 2000 claimants participated in a mass legal action against the National Health Service (NHS) in January 2004. They argued for better compensation for the trauma they suffered upon discovering that tissue from their deceased children had been removed and stored without their authorisation. These families reportedly refused an initial compensation offer of £1000, on the grounds that parents involved in the higher profile Alder Hey case had been offered £5000.³ Thus, the High Court was given the unenviable task of determining what constituted equitable recompense in highly emotive cases.

Although removal of tissue from deceased children without parental consent is recognised to be unacceptable, it has often been assumed that use of “discarded” or “leftover” tissue from living people—particularly when anonymised—raised no ethical issues if used for education or research instead of being incinerated. Tissue such as tumours removed from adults and children as part of their diagnosis or therapy has traditionally been used for research, education, audit, and quality assurance without specific donor consent. Its use for audit and quality assurance continues to be seen as uncontroversial but the current expectation is that living donors (or parents of young children) must be specifically asked to indicate at the time of agreeing to removal of tissue whether their material can be used for research or education after its diagnostic value for them is exhausted. This was the view expressed by the British Medical Association (BMA) in 2002 in its response to the government consultation document, Human Bodies, Human Choices⁴ and the Department of Health subsequently published similar advice in 2003.⁵ Some argued, …