You are holding back life-saving research, scientists tell ministers

( Times ) - Life-saving medical research will be held back by draconian new consent laws planned for embryonic stem-cell experiments, a group of leading scientists tell the Government in a letter to The Times today.

The Government's Human Fertilisation and Embryology Bill will delay vital research by requiring all tissue used to create cloned embryonic stem cells to have the explicit consent of its donor, the experts say.

The 29 biomedical researchers and administrators, including three Nobel prizewinners, warn ministers that the measure will deny stem-cell scientists the use of valuable tissue banks for studying diseases such as muscular dystrophy, Parkinson's and diabetes.

As this tissue was collected before it became possible to clone embryos, the patients who donated it have not given permission for their DNA to be used in embryonic stem-cell models of their diseases. Scientists in this field will thus be forbidden access to most of the tissue banks that act as vast libraries of the genes that contribute to serious disorders. They cannot seek consent retrospectively as most cells were donated anonymously.

The Government's justification for the measure is that some patients who agreed to donate cells in the past might not have realised that their tissue could later be used for cloning.

A second provision in the Bill, which is currently passing through Parliament, will further limit stem-cell research by blocking the use of any tissue from children, even if their parents give consent.

Amendments to overturn both measures have been tabled by Lord Patel of Dunkeld, the chairman of the UK Stem Cell Network Steering Committee, and will be debated in the House of Lords today. The Government is opposed to any change.

"We urge the Government to accept this important improvement to the Bill, which will help to maintain the UK's reputation as the place of choice for this exciting and world-leading medical research," the letter says.

Its signatories include the Nobel medicine laureates Sir Martin Evans, Sir Paul Nurse and Sir John Sulston, as well as leading stem-cell experts such as Sir Ian Wilmut, Dame Julia Polak, Professor Stephen Minger and Professor Robin Lovell-Badge.

The amendments are backed by the Medical Research Council, the Royal Society, the Wellcome Trust and the Academy of Medical Sciences.

Evan Harris, the Liberal Democrat MP who organised the letter, said: "When the science world unites behind an important and reasonable request, that should be taken very seriously by Parliament and ministers."

The new rules will affect the creation of cloned embryos by transferring a cell nucleus from a person with disease into a human or animal egg from which the DNA has been removed. This produces embryonic stem cells with the same genetic defects as the patient, which are powerful laboratory models for studying disease progression and for developing and testing new therapies.

The scientists do not dispute that explicit consent is needed from egg donors and from patients who donate their tissue in the future.

They argue, however, that new rules should not be applied retrospectively, so that they can use cells donated in the past by patients who gave general consent for unspecified medical research.

If stem-cell scientists cannot use existing cell libraries as raw material for cloning, they will in effect have to duplicate these banks. This will cost hundreds of thousands of pounds and significantly delay research.

Lord Patel said yesterday: "If these banks cannot be used, it will take a considerable amount of time and resources to build up another collection. Scientists in other countries will not have to work under the same constraints."

The new provisions have already held up a project led by Lyle Armstrong, of the University of Newcastle upon Tyne, who is a signatory to the letter.

Although he was awarded a licence to make cloned interspecies embryos last week, it was delayed as the Human Fertilisation and Embryology Authority rejected his plan to use banked cells that did not have explicit consent for this purpose.

The clause that bans cell donation by children also promises to block another experiment planned by Professor Minger, of King's College, London. An American colleague has offered him cells collected from children with spinal muscular atrophy (SMA), a rare genetic wasting condition, but he will not be allowed to use them if the Bill remains unaltered.

"We want to use these to produce stem cells to study SMA, and we cannot get this genetic material any other way," Professor Minger said. "Children with the worst form of this condition do not live to adulthood. It is impossible to wait until they are old enough to give their own consent."

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