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UK woman goes abroad for PGD 'not available in UK

Dr. Kirsty Horsey

Progress Educational Trust

31 May 2006

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[BioNews, London]

A doctor in the UK has had a baby boy free from an inherited disease following treatment in Belgium. Dr Mary Baum and her husband Philip travelled to Belgium for the treatment because it could not be performed in the UK.

Dr Baum and her husband already had two sons, one of which has the inherited condition tuberous sclerosis (TS), a genetic disease that affects about one in every 7000 babies and causes tuber-like growths to develop on the brain and in other organs. The growths can affect development and cause autism, epilepsy, developmental and behavioural difficulties and other problems. The couple's chance of having a second affected child was 50 per cent.

Despite the fact that fertility was not at issue, the couple needed to use IVF procedures to ensure that their third child was free from TS. IVF was used in conjunction with preimplantation genetic diagnosis (PGD), which involves taking a single cell from a 2-4 day old embryo, performing a genetic or chromosome test on that cell, and then returning one or two unaffected embryos to the womb. Dr Baum had made the decision to use PGD and was 'surprised' when she was told by the Hammersmith Hospital in London that they could not help.

While PGD itself is allowed in the UK, and the Human Fertilisation and Embryology Authority (HFEA), which licences the treatment has recently extended the conditions it can be used to screen for, TS is not currently one of these conditions. Each time a doctor wants to use PGD for a different condition in the UK, a new licence must be obtained - the Hammersmith Hospital told Dr Baum that it could take up to a year to obtain the necessary permission from the HFEA. Professor Lord Robert Winston, emeritus professor at the Hammersmith Hospital, said that getting the licence added to the burden of lack of resources and safety issues, because the test for TS was not straightforward to identify. 'The mutation is on two different chromosomes and we were not set up to do that at the time. And it is usually a dominant mutation, so if we had got it wrong it would have been disastrous', he said, adding that the red tape did not help. 'The HFEA are reluctant to give permission', he said, adding that he believed the policy of the HFEA to be discriminatory: 'Once you have agreed on the principle of PGD, I don't understand how you can distinguish between two diseases which might be fatal, or that constitute legitimate requirements to do an abortion'.

After some research, Dr Baum found two places in the world where the treatment could take place - the Vrije University Hospital in Brussels, Belgium, and Chicago, in the US. Their son Samuel was the first baby ever to be screened for the disease. Isobel McFarlane, spokesperson for the Tuberous Sclerosis Association commented that 'the sad thing is the UK has led the world in research on TS, yet this procedure, which could have been so helpful, wasn't available for Dr Baum at that stage - and it might not be available for other women in her situation'. 'I don't understand why Belgium has the manpower to do this and the UK doesn't', said Dr Baum.

© Copyright Progress Educational Trust

Reproduced with permission from BioNews, an email and online sources of news, information and comment on assisted reproduction and genetics.

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Date Added: 31 May 2006   Date Updated: 31 May 2006
Customer Reviews (1)
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Prof Alan H Handyside   02 June 2006

For information, PGD for tuberous sclerosis is available in the UK. We are currently in the process of helping two couples and can include limited screening for age related aneuploidies at the same time.

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