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From The Sunday Times March 16, 2008 An embryonic disaster? The government's new fertility bill is under fire on religious, moral and even scientific grounds Isabel Oakeshott and Sarah-Kate Templeton When Liz Shipley was diagnosed with motor neurone disease (MND) it came as little surprise. The 36-year-old from Newcastle had lost her mother to the same condition when she was just three years old. Several other members of her family, including her sister and uncle, had died or were suffering from the muscle-wasting disease. Ten years on and unable to walk, write or dress herself, she fears that her two teenage children will also inherit the disease. Shipley does not expect a cure in her lifetime but she backs controversial scientific research using embryos that are part-human, part-animal, which could lead to a treatment for her children if they are struck down. "When you have an illness for which there is no cure, you have to investigate every avenue," said Shipley. "I do not want my children to be told in 20 years' time that they have MND and there is still no cure. I believe the answers will lie in stem cells of some kind. Hopefully this research will be able to tell us why this is happening to our family." For Shipley and campaigners such as the Motor Neurone Disease Association, new legislation heading for the House of Commons this spring is simply a matter of putting in place the best infrastructure for scientists to help people like her. For others it will be the most controversial bill of this parliament with the science it allows running far ahead of what many would regard as reasonable. Last night Rowan Williams, the Archbishop of Canterbury, said that the country lacked a "clear moral perspective" on such issues. The Human Fertilisation and Embryology Bill is designed to regulate just how far scientists can go when experimenting on embryos or embryo parts. It will also lay down new boundaries for fertility clinics, setting out the circumstances in which controversial techniques for screening embryos for defects, or gender, are allowed. As if this were not contentious enough, the new law will lift a ban on so-called "saviour siblings" - babies created to donate bone marrow or tissue to a sick brother or sister. The battle lines are set for a ferocious religious, moral and political debate, with senior government figures threatening to derail the new laws over ethical concerns. Even Sir Liam Donaldson, the chief medical officer, seems to have reservations. He has spoken of the human-animal hybrids on which Shipley is placing her hopes as a "step too far", warning that even scientists feel a "degree of repugnance" at the idea. It is too late for ministers to back down: the legislation was in the Queen's speech and is strongly supported by Gordon Brown. Are they leading us into a scientific and ethical minefield? Will MPs produce a bad law - or will it all unravel? EVEN the bill's harshest critics agree that the law needs updating. Since 1990, when the last legislation governing embryos was introduced, there have been huge changes in the creation and use of embryos in fertility treatment and science. The legal vacuum has frequently left the Human Fertilisation and Embryology Authority, charged with making rulings on ethical issues - such as whether embryos should be screened in order to select only healthy children - at a loss. Its rulings led to calls that such decisions should be made by parliament, not by an unelected quango. The problems for the government with this bill started in its drafting. Ministers supported a report from the cross-party science and technology committee so that they could present the resulting bill as a non-partisan measure, but its 10 MPs were hopelessly divided. "It was a nightmare," recalled Ian Gibson, the committee's chairman. "We could have gone on arguing for days and days. People were walking out; there were all sorts of threats; it was very, very uncomfortable." In a highly unusual step, the conclusions of five of the group were published alongside a terse statement from the other five. "We believe the report is unbalanced, light on ethics, goes too far in the direction of deregulation and is too dismissive of public opinion and much of the evidence," the dissenters declared. Yet that report forms the basis of the current legislation. With the more "liberal" committee members dominating the drafting process, it creates a freedom of action for fertility scientists that is unparalleled in the developed world. Some say it goes much further than enshrining current practice in law. "We don't know at this stage where the breakthroughs will come from, but it wouldn't be sensible to close off research in these areas," was how a health department official described the bill's principles. Among the most controversial proposals is to allow the creation of hybrid embryos. The government says these could solve the shortage of human eggs needed for research into curing diseases such as Parkinson's and MND. One form of hybrid embryo, made up of an animal egg and a human nucleus, could be used to produce stem cells. These are valued by scientists because they are more flexible than other types of cell and consequently more useful for research. The hybrids, which could be up to 50% animal and 50% human, would be allowed to live for only 14 days. "This is not about creating monsters," say officials. "It's purely laboratory research." The potential creation of such embryos has angered religious groups, which object to the manipulation of a life form that is at least part-human. "We haven't as a society got a sufficiently clear notion of what constitutes a human organism," said Williams. "My own view is that an embryo is a human organism, but that requires some argument, which isn't something that can be settled by science alone." Some scientists have also voiced their reservations. Last year Donaldson told a parliamentary committee set up to scrutinise the legislation: "On the question of full-blown hybrids being created between animal gametes and human gametes, there was a degree of repugnance, even among scientists . . . "It was felt - and I think is still felt - that this would be something where there was no clear scientific benefit and, secondly, a feeling that this would be a step too far as far as the public is concerned." Some scientists ask whether the legislation not only moves us too far and too fast but also in the wrong direction. They question whether such hybrids are even necessary because stem cells derived from a patient's own body are already being used to treat disease. Colin McGuckin, professor of regenerative medicine at Newcastle University, has shown that stem cells taken from the umbilical cord of a newborn baby can be transformed into skin and liver tissue. "There are many types of stem cells available to develop new drug therapies and I think the overemphasis in our country on embryonic stem cells is disappointing," he said. In November last year Professor Shinya Yamanaka, of Kyoto University, Japan, announced that he had successfully reprogrammed skin cells into embryonic-like cells, possibly making the use of material from embryos unnecessary. Hybrids are just one of many controversial areas. The bill also enshrines in law the creation through in vitro fertilisation (IVF) of babies that are a suitable tissue match to help to treat an existing child, the so-called "saviour siblings". Here the act again goes further than existing practice in suggesting that children could be created to donate part of an organ, as well as bone marrow, to their siblings. This, too, has triggered angry opposition. "For children apparently to be created for the sole and explicit purpose of being available to provide any type of tissue at all for an existing sibling is appalling," said Lord Alton, the independent peer. "This is truly dehumanising society." The act also allows fertility clinics to discard, or "screen out", embryos suffering from serious diseases. This has angered extremist disability campaigners who want to turn the legislation on its head by allowing fertility clinics to screen in embryos carrying genetic abnormalities. Last year The Sunday Times revealed that deaf organisations think parents should be allowed to pick a deaf embryo over one that has all its senses intact, believing that there is a cultural identity in being deaf that families should be allowed to share. Now the British Deaf Association is lobbying for an amendment giving deaf couples the right to use the techniques to ensure they have a deaf baby. Couples with dwarfism have also sought the right to create children with the same condition as themselves. Stoking an already raging fire are two opposition MPs who are preparing to lay down amendments guaranteed to make it even more contentious. Evan Harris, a former doctor, wants scientists to be able to create artificial sperm - potentially solving the national shortage of sperm donors and allowing cancer survivors who are infertile to have children. Opponents describe it as "playing God with human DNA", while Harris insists that it is "rational and progressive". Most politically toxic of all are plans by Nadine Dorries, a Tory MP, to lay down an amendment that would reduce the time limit on abortions from 24 to 20 weeks. As an amendment to the bill it could get only an hour of debate, but it is one about which the public feels strongly. A YouGov poll for The Sunday Times today shows that 48% of people say they would support Dorries's measure - a figure that rises to 59% among women - while 35% would keep the limit at 24 weeks; 8% would ban abortion altogether. FOR those charged with pushing the bill through the Commons, the situation could hardly be worse. If the government was united on the issue there would not be such a problem, but it is not. The prime minister regards the legislation as crucial. If Britain does not make it easier for scientists to carry out pioneering research, he fears they will go elsewhere, jeopardising the country's international reputation as a centre of excellence in such work. His interest is not just political but also personal. His son James suffers from cystic fibrosis, one of the conditions for which stem cell research offers real hope. Several members of Brown's cabinet are staunch Catholics. Ruth Kelly, the transport secretary, Des Browne, the defence secretary, and Paul Murphy, the Welsh secretary, are vehemently opposed to the use of embryos for research. Kelly is the biggest worry. She has made it clear to government whips that she will not vote against her conscience. In a measure of how high the stakes could become, those close to the transport secretary do not rule out the possibility that she will resign if she is forced into a corner over her beliefs. Many MPs are demanding a free vote on the bill. This is dismissed as out of the question by government whips, who feel they have already been extraordinarily "sensitive and generous" by announcing that all Labour MPs, including cabinet ministers, will be able to abstain on conscience issues, even though this is a government bill. In this febrile atmosphere it does not help that Dawn Primarolo, the minister with the nightmare task of pushing through the legislation, cannot relate to those with strong religious convictions. "I'm an atheist," she declared bluntly, although she added: "It's not for me to question anyone else's faith or beliefs." For her, embryos are not potential humans from the moment of conception. "I don't think it's a life right from the start. That's my personal view," she said. Privately some government figures complain that her department has been too slow to "sell" the bill to a wary public. Nothing has been heard from Alan Johnson, the health secretary, on the issue. "They've got to get out there and show MPs and voters why this is a good thing," said a senior government source. As the objections from campaigners, scientists and MPs alike show, that will be a difficult job. Contentious issues in the new bill Animal-human hybrids Scientists will be allowed to create embryos which are half-human and half-animal by mixing animal and human sperm and eggs. The embryos will be allowed to live for only 14 days and will be used for experiments which scientists hope may lead to treatments for disease. Saviour siblings It will become legal for fertility doctors to screen embryos to choose one which is a tissue match for an existing sibling who has a disease and could benefit from a donation of stem cells, bone marrow or even part of an organ. Designer babies It will become legal for doctors to screen out embryos which have disabilities and implant only those free of disease. The law prohibits selecting a disabled embryo if healthy ones are available. But deaf groups want the law amended to allow them to select children who cannot hear. Fathers not needed The act would remove the requirement for fertility doctors to consider a child's "need for a father" when offering treatment to single women or lesbian couples. Campaigners say this sends a message to society that fathers are not important. Abortion MPs are planning to introduce an amendment to reduce the upper limit for abortions for social reasons from 24 to 20 weeks. Artificial sperm and eggs Another amendment will attempt to permit the use of artificial sperm and eggs in fertility treatment, should such treatment be possible in the future. Rayilyn Brown Board Member AZNPF Arizona Chapter National Parkinson's Foundation [log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn