August 15, 2004.
By KATE FOSTER,
CHARLIE is 14 and going through a typical adolescent struggle with his mood swings and his exams. But on top of this he must cope with a major problem that has set him apart from his friends since he was six.
Charlie has diabetes and needs up to eight injections a day to regulate his blood sugar. He must eat regular meals and regular snacks. He canít leave the house without his injecting equipment or without knowing where his next meal will come from.
He goes to boarding school because Sylvia Tobutt, Charlieís mother, says it is the only way the family could cope with her job and his illness. At school he gets round-the-clock medical care.
His mother, who runs an accountancy firm, admits the diagnosis was terrible and says it is her dream that a cure for his diabetes is found in his lifetime.
Last week that treatment came a significant step closer when scientists at the Newcastle Centre for Life were given permission to create the first human clones in Britain.
The Human Fertilisation and Embryology Authority, the body which regulates stem cell research in Britain, granted the Newcastle team a licence to create human embryonic stem cells using cell nuclear transfer, the same technique that was used to create Dolly the Sheep.
The go-ahead for therapeutic cloning has given millions of patients new hope and placed Britain at the forefront of pioneering international research on a range of diseases which have so far proved incurable. Before the HFEAís decision last week, no western country had given the go-ahead for any sort of cloning.
Stem cells created under this licence will be used for research purposes only. The first thing the researchers will try to do is create human embryos using eggs left over from IVF couples. This research is preliminary, it is not aimed at specific illnesses. However, it is the foundation for further development in the treatment of serious disease.
Cloned embryos can be created by removing the core of a human egg - the part containing the motherís genetic blueprint - and replacing it with the genetic blueprint of the person to be treated. The egg is then stimulated with electricity and chemicals mimicking the process of fertilisation usually done by sperm. The egg starts to grow as if it has been fertilised. Because no sperm has been used and no second parent is involved the resulting embryo is an exact genetic copy of the donor - a clone. The scientists plan to create up to 200 clones a year, starting this autumn.
The next thing the team plan to do is harvest insulin-producing cells from the embryos that can be transplanted into diabetic patients. Because they are derived from the patientís DNA they should not be rejected by the immune system.
This has yet to be approved and will require another HFEA licence - under the new rules the embryos must be destroyed before they are 14 days old and never allowed to develop beyond a cluster of cells the size of a pinhead. But Sylvia Tobutt is excited: a best-case scenario would be a transplant of cells from a cloned embryo that would effectively cure the diabetes.
She said: "This would allow Charlie to lead a completely normal life. His treatment is a hell of a responsibility for a teenager. Sometimes he forgets to do his injections. We have known about this type of research for a long time. The aim of growing cells that can be transplanted has always seemed like the dream, particularly from your own tissue. I do believe we will get there one day."
Her hopes are echoed by numerous patient groups, including Diabetes UK, the charity that funds research into the disease. Diabetes UK has agreed to support stem cell research both publicly and financially through its research grant programme.
Should the diabetes element of the project be approved by the HFEA, and an application for funding was received by Diabetes UK, the charity has said it would consider it. Diabetes UK acknowledges that there are important ethical issues involved in the use of stem cells but believes that the potential of this area of research provides a real possibility of leading to a cure for diabetes.
Other patient groups agree, including the Parkinsonís Society and the Genetic Interest Group, which campaigns for people with disorders such as cystic fibrosis, Huntingtonís, and muscular dystrophy. These embryonic stem cells can in principle develop into any human tissue, which could be used to replace damaged tissue in the brain for Alzheimerís or Parkinsonís. Both are products of defective brain cells and could potentially be cured by successful use of stem cells. Some believe that the cells could even produce entirely new organs.
Liver cells could be grown to cure liver disease, or nerve cells made to allow patients with spinal injury to walk again.
Sylvia Tobuttís hopes are also shared by a number of high-profile campaigners suffering from devastating illnesses. Jimmy Johnstone, the Celtic legend now stricken with motor neurone disease, believes the research could throw him a lifeline.
Jimmy - known as Jinky - was voted the Greatest Celt of all time by supporters two years ago. He has now lost the use of his arms and hands and can no longer sign autographs for fans.
Other famous names who have spoken out in support of stem cell research are Michael J Fox, who has Parkinsonís disease, and Christopher Reeve, who is paralysed.
The scientists at the University of Newcastle say clinical trials of human cures for diseases such as Alzheimerís, Parkinsonís and diabetes may only be five to 10 years away.
John Gillott, spokesman for the Genetic Interest Group, said: "This work will contribute both to the understanding of disorders and possible therapeutic approaches. Potentially, many people could benefit from this. Treatments could vary from person to person.
"It could provide us with the possibility of stem cell transplants which could re-programme the patientís cells. A cell transplant could be like a bone marrow transplant or a simple injection depending on what it was for. It might be invasive, but as a treatment the concern for many people would not be how invasive it was but how effective. People with serious conditions are willing to take risks.
"There are other research possibilities as well, because if scientists take cells from someone with a genetic condition and clone them they can see how the cells develop, which is a way of studying the condition."
The Newcastle scientists said Britain could establish a world lead in embryonic stem cell research, given sufficient financial backing. "Newcastle is now the national front-runner but pressure is mounting in the United States for its scientists to be allowed to do this work," said Miodrag Stojkovic, the projectís chief scientist last week.
The development was also welcomed by many members of the scientific community who believe the potential to save lives by conducting therapeutic cloning far outweighs the ethical arguments against it. The team claim that in five or 10 years they may be able to take a skin cell from a patient and offer them a cure. Professor Ian Wilmut of the Roslin Institute in Edinburgh where Dolly was cloned, said: "I believe that cells derived from cloned embryos will be very important in research, as well as in the treatment of disease.
"There are many unpleasant human diseases that reflect the loss of cells that are not replaced.
"These include Parkinsonís, diabetes, spinal cord injury and some forms of blindness. There is no fully effective treatment for many of these diseases, and so the exciting new approach of transferring of new cells into patients is very important."
But others are not so convinced. The possibilities of therapeutic cloning and stem-cell research are said to be nearly limitless. But there are also few limits to the questions, and controversies, that such research throws up. Pro life groups are already planning legal action to overturn the HFEA ruling.
These groups oppose creating and harvesting embryos for research for the same reason they oppose abortion: that this is tantamount to murder.
Professor Jack Scarisbrick, the national chairman of the charity Life, said: "This is manipulation, exploitation and trivialisation of human life of a frightening kind.
"The real reason for seeking this permission is probably as much about playing God and breaching taboos as curing diseases. The birth of a cloned baby will be next."
In the UK, research on human embryos is only permitted for certain purposes. But there are fears therapeutic cloning is a slippery slope towards the birth of the first cloned baby, so-called Ďreproductive cloningí. The methods are similar for both procedures. The licence approval has aroused widespread national and international concern. While the creation of cloned embryos for stem cell research is legal in the UK, the European Parliament has called for it to be banned and the European Commissionís ethical advisers consider it premature.
Earlier this year researchers in South Korea announced they had produced the first human cloned embryo. Only a few other countries, such as Singapore, Japan and Israel have legalised therapeutic cloning.
In most of Western Europe, Australia and the US it is either banned or actively discouraged. American fertility expert Panos Zavos already claims to have tried to create a human clone, although his first effort failed. The Catholic Church is vehemently opposed, influencing policy in heavily Catholic countries like Italy and Spain. In July, the French parliament banned the use of human cloning for any purpose, making it punishable by up to 30 years in prison, but said that stem cell research on existing embryos was permissible.
Dr Donald Bruce is director of the Society, Religion and Technology Project of the Church of Scotland, and has been in the forefront of the debate on animal and human cloning since 1996.
The Church of Scotland has, since 1997, called for a global ban on reproductive human cloning, but steps towards such a ban at the United Nations are currently stalled.
Bruce believes the HFEA should have refused the licence application from Newcastle. Although his reasons are largely ethical, including fears about the misuse of the technology by maverick scientists and the lack of international regulation, he is concerned about a major practical problem as well, which could prove a fatal flaw.
He said: "The researchers claim that it could eventually lead to the production of genetically matched replacement cells - so called therapeutic cloning. Such claims are now increasingly criticised in the scientific community for being impractical. It is of concern to see claims about therapeutic cloning continuing to be made when it seems unlikely ever to become a clinically reality.
"To provide a therapy for the hundreds of thousands of potential patients who suffer from degenerative diseases would require enormous numbers of human eggs. This seems unrealistic and probably too expensive. There is a danger that this might only benefit the very rich instead of being a general benefit to humankind."
Sylvia and Charlie Tobutt, however, remain optimistic. "When Charlie was diagnosed I asked the female consultant if he would still have diabetes when he grew up," Mrs Tobutt said. "She said heíll need lifelong injections several times a day. You can imagine how I felt and how difficult it was getting used to that idea.
"He has an inflexible regime and must stick to a timetable of food and injections. He faces coma, blindness, gangrene or loss of a limb if he does not take his treatment regularly. If his blood sugar is too high or too low it can be bad for him. He is very level headed and copes brilliantly. He is very optimistic and capable. The doctors said at the time he was diagnosed things would be much better in a few years. Well that was nearly eight years ago. I do believe this latest research announcement will get us there."
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