Issue date: Wednesday 14 January 2004

Medical research under threat from new bill

Research into life-threatening diseases could be outlawed under proposed new legislation, Britain's biggest biomedical research charity, The Wellcome Trust, warns today.

The Human Tissue Bill, which has its second reading in the House of Commons today (Thursday 15 January), is intended to strengthen regulations following inquiries into procedures at Alder Hey Children's Hospital in Liverpool and the Bristol Royal Infirmary where tissue and organs from dead children were often retained without parental consent.

But Dr Mark Walport, Director of the Wellcome Trust said: "Although the proposed legislation has admirable aims, it could have serious consequences for many patients because it is unclear what research can and cannot be done.

"The case has been made for new legislation in some areas but the Bill's aim of preventing a repeat of the Alder Hey and Bristol tragedies could have unintended consequences by preventing some types of life-saving research.

"For example, if this Bill was effective now it might not be possible to carry out research that led to the discovery of genes responsible for the most common inherited form of breast cancer. Indeed it might even be a criminal offence.

"Likewise scientists might not have been able to study post mortem samples to identify new variant CJD.

"The Bill is a confusing mix of contradictions and ambiguities which could result in an unworkable, bureaucratic system that stifles legitimate research. There is no definition of consent and it is vague about the analysis of fresh DNA samples, criminal liability and licensing.

"The serious, unintended consequences of this Bill must be resolved to safeguard vital medical research which could ultimately affect millions of people."

The Trust is currently involved in discussions with the government and others in the science community in an effort to find a satisfactory solution with a view to shaping suitable legislation.

Ends

Media contact:
Barry Gardner
Wellcome Trust, Press Office
Tel: 020 7611 7329
Mobile: 07711 193041
E-mail: b.gardner@wellcome.ac.uk

Notes to Editors:

The Wellcome Trust is an independent research-funding charity established in 1936 under the will of tropical medicine pioneer Sir Henry Wellcome. The Trust's mission is to promote research with the aim of improving human and animal health and spends more than £400 million p.a.