• Call for research to be carried out on terminally ill
• Hope is expressed that cures or at least valuable research information will be found
• Health Secretary will make announcement on stem cell therapy in New Year
"We've got to think about the damage to a developing treatment of unforeseen adverse effects in very sick patients, where an apparent adverse event might not be anything to do with your treatment." - Professor John Savill
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SCIENTISTS should be allowed to experiment with new stem cell therapies on terminally ill patients in the hope of saving their lives or at least speeding up the pace of research, one of Britain's leading scientists has said.
Professor Ian Wilmut, who was appointed this month as the first director of Edinburgh University's new Centre for Regenerative Medicine, said he knew of patients who would be "only too keen" to participate in high-risk, but potentially high-gain, trials.
Stem cells, which have the capacity to turn into other cells in the body, can be grown into brain cells in the lab. Transplanting them into patients could help reverse damage caused by illness or conditions such as Parkinson's, Alzheimer's and motor neurone disease.
However, while experimental treatments have been tried out on seriously ill cancer patients, the same risks are not allowed to be taken with stem cell treatments under ethical rules. Instead scientists have to carry out extensive animal testing before they are allowed to start working with human patients.
Professor Wilmut, the scientist behind the world's first mammal clone, Dolly the sheep, said he was normally cautious about the pace of change, but felt there was a pressing need for some constraints to be lifted.
"Since I started to become really interested in this, I've come across people who have neuro-degenerative disease who face a steady, slow decline and premature death, a very unpleasant situation. They would be only too keen to participate in trials," he said.
"Imagine you've got motor neurone disease and you've got no movement below your neck. You hear reports of benefits from stem cells in news reports, on the internet. That person would be very enthusiastic.
"If we wait until things are totally tested and analysed in animals, it will deny some people that treatment.
"They should be allowed to use treatments which have not been properly tested because in their case the benefits may outweigh the risk. The sad fact is if we wait until all the tests have been done, some patients will have passed away."
Professor Wilmut said there would need to be safeguards to ensure patients' rights were respected and that they were able to give their consent..
"Clearly there has to be informed consent. How do we ensure that the person really does understand the risk?" he said. "There's likely to be a commercial involvement in one way or another. That provides a motivation.
"And scientists have to be ambitious and motivated and may inadvertently mislead a patient in their enthusiasm."
While stem cells can turn into other cells in the body, scientists are still struggling to fully understand this process.
At the moment, when they try to turn stem cells into a specific neurone in the brain, the result is only 30 to 50 per cent "pure". Work is on-going to increase this or separate out the required neurons, but this cannot be done at present.
Professor John Savill, head of the university's College of Medicine and Veterinary Medicine, said inserting impure neurons into someone's brain risked causing a cancer. "It would be dangerous. There is a tumour called a hamartoma, which, if you like, is sort of a stem cell tumour,"
He said the UK had a mature process for debating ethical issues stretching back to the Abortion Act and that there was a case to be made for allowing experimental therapies in certain cases.
"The principle of high-risk, high-gain treatment being ethical is established in various cancers. There's a history of high-risk treatments being introduced in desperately sick, highly motivated patients, but it is an ethical debate we need to see taken forward and resolved. If you are suffering, you think it would be unethical not to do it."
However he warned that scientists themselves might hesitate from trying out a potentially beneficial treatment if they thought a patient was too ill.
"We've got to think about the damage to a developing treatment of unforeseen adverse effects in very sick patients, where an apparent adverse event might not be anything to do with your treatment," Professor Savill said.
"You might give your new treatment to five patients and they all die the next day. Then you get newspaper articles saying 'Wonder treatment kills five patients' and that's the end of your treatment."
Ainsley Newson, a researcher in medical ethics at Imperial College London, greeted Prof Wilmut's idea with cautious optimism. She said any potential trials must be thoroughly vetted by a research ethics committee that ensures "all other avenues have been exhausted" - that experiments with animals have been tried, that terminally ill patients are not being exploited and that participants are aware preliminary research may only benefit future generations.
"It is very important in terms of research ethics that we do not jump into using people," she said. "Because even though this group are potentially fantastic to work with, at the same time they're also people and we don't want to further harm patients who are already very vulnerable. However, if we can overcome these problems, this group might lead to a wonderful legacy."
Josephine Quintavalle, from campaign group Comment on Reproductive Ethics, would consider using adult stem cells acquired ethically from umbilical cord blood or amniotic fluid.
But she said it is "absolutely unethical" to use embryonic stem cells both for scientific and ethical reasons.
She was also concerned about claims around stem cell research following the recent scandal in South Korea that saw a leading proponent of embryonic stem cells, Dr Hwang Woo-suk, accused of faking results. "It seems to me we need to go very, very slowly at the moment and we need to be extremely sceptical about anyone's claims or promises in this field," she said.
Patricia Hewitt, the Health Secretary, is due to make an announcement on research into stem cell therapy in the New Year.
Football hero keen to try treatment
SINCE losing control of his arms and hands, Jimmy Johnstone has been watching Ian Wilmut and his team with rising hope.
The Celtic legend, known as "Jinky" for his nimble moves on the pitch, was struck down with motor neurone disease (MND) in 2002. MND is a fatal disease of the nervous system which kills five people a day in the UK. There is no known cause or cure. Only Prof Wilmut and his team provide hope for a cure for Johnstone - and if that means taking part in trials, the 61-year-old is more than prepared to take the risk.
"My quality of life is not as good as it used to be," he says. "And it takes up a lot of time for the people around me who have to look after me.
"You have to weigh everything up at the end of the day. Life is about risks and we have to get ahead.
"I would like to do it [take part in clinical trials]."
Johnstone said many victims of MND are willing to take part in trials if it could give them another Christmas with their families.
"It provides hope for myself and my family and many many others."