A two-year-old boy who needs urgent treatment to cure a rare and potentially fatal blood disorder is at the centre of a fresh row over creating "designer babies" with human embryos.
The Human Fertility and Embryology Authority (HFEA) is poised to relax its rules on using genetic screening for medical treatments on Wednesday. The decision will have profound consequences for the life of Joshua Fletcher and children like him.
Joshua suffers from a rare genetic defect called Diamond-Blackfan anaemia, one requiring regular blood transfusions. His parents, Joe and Julie Fletcher, from County Antrim, Northern Ireland, have asked the HFEA to permit the genetic selection of a healthy sibling to help cure him by using that baby to donate healthy stem cells.
The present HFEA rule prevents parents selecting embryos solely because that child will have desirable characteristics, even if they will save another life - the central issue in Joshua's case.
Two years ago, the HFEA was heavily criticised for rejecting a similar bid by the family of Charlie Whitaker, who suffered from the same disorder. His parents instead flew to Chicago for fertility treatment, and had a genetically matched son.
The controversy over screening embryos to cure other children first erupted over the case of Zain Hashmi, a boy born with the potentially fatal and painful blood disorder beta thalassaemia. His case provoked a 14-month-legal battle after religious campaigners challenged the HFEA's decision to allow his parents to select a baby to help treat his condition.
In May 2003, the Court of Appeal backed the HFEA's claim that - in this case - the law allowed his parents Raj and Shahana Hashmi to screen the embryos to check that another child of theirs did not carry the same defect, thus allowing them to select a child who could help cure Zain. Since this ruling, despite having at least four cycles of IVF treatment, Mrs Hashmi has miscarried twice.
At present, embryos can only be screened before implantation using a technique called pre-implantation genetic diagnosis if there is a significant risk that the baby will itself be born with a critical or extremely serious genetic condition. Using that child to then treat another child is currently seen by the HFEA as a secondary benefit of the technique.
The proposal, which follows an HFEA rule review, has already provoked a fierce controversy over the religious and medical ethics of creating "made to order" babies simply to save another child's life. Critics claim embryo selection could easily lead to parents selecting babies because of their hair colour, gender or intelligence, and eventually to cloning.
Yesterday, a Christian think tank warned that an HFEA rule relaxation would be instantly challenged in the courts. Roger Smith, of the Centre for Bioethics and Public Policy, said: "The law says the welfare and best interests of the child being born has to be their primary consideration - not creating one life for the sake of another. That seems to us to be outside ethical boundaries."
The HFEA is also under intense pressure from fertility experts, parents and medical charities to soften its regulations after rejecting earlier bids by other families with Diamond-Blackfan anaemia. One family flew to the United States for treatment. Three further families with children with Diamond-Blackfan anaemia are preparing bids to the HFEA.
An HFEA spokeswoman said the authority could either reject the Fletchers' proposal or seek further information before making a decision.
She denied that relaxing the rules would allow babies to be "made to order" for cosmetic or social reasons.
THE SCIENCE OF SELECTION
The new embryo-screening technology could help cure serious conditions in children and prevent the birth of babies with genetic diseases, say scientists. The legality of such screening now extends only to babies with conditions such as cystic fibrosis, Huntington's disease, or Down's syndrome. Fertility experts want to create healthy babies specifically for the use of their cells in efforts to cure others. This involves in vitro fertilisation. A cell, taken from an embryo of between six and 10 cells, is screened for the particular disorder, then, if the match is correct, implanted in the womb. The sick child gets healthy stem cells from the umbilical cord of the newborn.Reuse content