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Deisgner Baby Issues In The NewsFrom: art fougner, md (evsono@pipeline.com)Sun Jul 18 09:24:52 2004
Fertility agency facing moral dilemma over designer babies Families’ arguments for IVF to help sick children forces authority into a rethink By Liam McDougall, Health Correspondent PARENTS could be given radical new powers to select embryos so that the baby created can save the life of a sick sibling. The Human Fertilisation and Embryology Authority (HFEA) is to debate whether the rules governing the conception of “des igner babies” should be rel axed to help existing children who have life-threatening illnesses. This week the fertility watchdog will consider a doctor’s request to select an embryo for a couple in Northern Ireland that is a blood match with their son, who has a rare blood disorder. Under the current rules, embryos can be screened only for serious genetic disorders. However, Dr Mohammed Taranissi, the director of the London-based Assisted Reproduction Gynaecology Centre, is pursuing a change in the rules to save the life of two-year-old Joshua Fletcher, from Moira in County Down. The toddler has the potentially fatal blood disorder Diamond Blackfan anaemia (DBA), which can be treated using stem cells to stimulate his body to produce healthy red blood cells. Neither his father Joe, mother Julie nor five-year-old brother Adam is close enough matched to give him the stem cells he needs. But in-vitro fertilisation (IVF) technology could be used to create a baby who could provide these cells. The plan is to create up to 12 embryos through IVF treatment. Before implantation the embryos would be screened to find out which has the right genes. Speaking earlier this year, Joshua’s father said: “We only want to give our son the best chance for a cure for a condition which could take his life.” Joshua reportedly needs a bone marrow transplant and is receiving a blood transfusion every three weeks. The HFEA has previously ruled that if the level of risk to the newly created child cannot be quantified, then it is not acceptable to push ahead with its creation. Last night, anti-abortion and religious groups voiced their opposition to the move, describing plans to create so-called designer babies “unethical and unnecessary”. Taranissi said: “We are already screening embryos for serious genetic problems. I don’t see the difference. What we are trying to do is find an embryo that is a match for a seriously ill child.” He added that screening and embryo selection should be allowed only when treating medical conditions, not for aesthetic reasons. The Fletcher case is identical to the scenario experienced by Jayson and Michelle Whit aker, who in 2002 were refused permission to screen an IVF embryo in the UK because there was no benefit to the future child. The Whitakers, who were also under the care of Tar anissi, went to the US, where the rules are more relaxed, and a baby, Jamie, was born last year. The case contrasts with that of Raj and Shahana Hashmi, who were allowed to screen to help make a match for their four-year-old son Zain, who had the rare blood disorder thalassaemia. The HFEA all owed it because the disorder is genetic, so screening could prevent the new baby having the condition as well. But Taranissi insisted there was no difference between the two, because in cases such as the Hashmis’ nothing is specifically done to the embryos to prevent them having a disorder. They are merely screened to check they are normal, he said. “Where is the benefit to an embryo if all you are doing is checking that it is normal?” he said. “I think it is going to be very hard to turn down the application. There is enough evidence that this is no different from the Hashmi case.” He added: “You have a child at home that is very seriously ill, and you see the pain and agony and know there is a simple treatment out there that will relieve this condition. “If it is OK for this child or that child, how can you deny it to other people?” The Fletchers say that if the decision goes against them they may go to the US where the process of creating donor siblings is permitted. HFEA chairwoman Suzi Leather said the authority was looking at its policy in preparation for the government’s review of conception and human embryo and fertilisation laws. “The HFEA operates in a fast-moving area of science, so it is important that it continues to keep all its policies under constant review,” she said. On Wednesday it will look at issues surrounding sperm, egg and embryo donation, pre-implantation tissue typing and assessing a child’s welfare. Legal, scientific and ethical issues will also be examined. Josephine Quintavalle, foun der of the group Comment on Reproductive Ethics (Core), described the process of making designer babies as “unethical and unnecessary”. “We must fight very strongly to protect the rights of the child that is going to be created,” she said. She is campaigning for an international bank of cells taken from umbilical cords and placentas to provide stem cells, which can develop into any kind of mature cell required, instead of having them taken from “designer babies”. Quintavalle added: “The HFEA should not make these decisions. They should be made by the public and parliament.” A spokesman for the anti-abortion group Life added: “All screening is morally unacceptable. It is discriminating against life that is regarded as less than perfect. “Children should be accepted absolutely for what they are in themselves, not for what use they can be put to.” Case that may push back boundaries of human genetics THE case of Joshua Fletcher is the latest in a line of examples that are threatening to push back the boundaries of the so-called “designer babies” debate. Until now, the UK fertility watchdog, the Human Fertilisation and Embryology Authority (HFEA), has allowed embryos to be screened only for serious genetic disorders. In past cases, parents have been permitted to screen if it is also of benefit to the embryo, but not where the only purpose is to help anothe, with no benefit to the child that is to be born. A landmark Court of Appeal ruling last year allowed Raj and Shahana Hashmi to select a baby to help cure their son Zain, whose blood condition beta-thalassaemia could be cured by a bone marrow transplant. Judges said the ruling would not herald a genetic free-for-all, and that in future each case should be judged on its own merits. But medical advances, coupled with discrepancies between UK procedures and those allowed overseas, are changing public opinion. Earlier this year it was reported that doctors had created Australia’s first “designer baby” to treat his brother for a life-threatening genetic illness. Only a handful of other cases of a child being born to save another have been reported . The technique was pioneered in the US, where baby Adam Nash was conceived in 2000 to help cure sister Molly of a blood disorder. Critics argue the moves amount to giving doctors and parents a licence to “create children for spare parts”. 18 July 2004 http://www.sundayherald.com/43470 What do you think? art
-- art fougner, md ich bin ein New Yorker
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