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Call to track health of embryo test babies

Dr. Kirsty Horsey

Progress Educational Trust

29 April 2005

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[BioNews, London]

All centres carrying out preimplantation genetic diagnosis (PGD) should be following up the resulting babies to track any long term effects on their health, a UK doctor has said. Peter Braude of Kings College London, one of eight UK centres offering the treatment, called for more long-term studies at a press conference held this week. Speaking at the same meeting, a team based at University College London (UCL) revealed details of a study into possible demand for embryo tests for inherited breast cancer.

PGD has been used since 1990 to test embryos produced using in vitro fertilisation (IVF) techniques for serious genetic and chromosomal conditions. The use of this technology to avoid later onset genetic conditions has sparked debate recently, following the Human Fertilisation and Embryology Authority (HFEA)'s decision to grant a licence to a team at University College Hospital, who want to use PGD to help couples avoid passing on hereditary bowel cancer to their children. Now, a research team at UCL say they are planning to send out questionnaires to women with a family history of breast and ovarian cancer, asking them for their views on PGD. Team member Siobhan Sengupta said that 'it's all about patient choice', adding 'some would consider that selecting an embryo that does not carry the mutation is more acceptable than terminating a pregnancy'.

The team say they have written to the HFEA, asking for its views on PGD tests for breast cancer, but they have not yet received a response. An HFEA spokesman said that in approving PGD for bowel cancer, the fact that the gene involved made the disease 100 per cent certain, and that it could strike as early as age ten were considered. 'We have got to treat applications on a case-by-case basis, and one agreed licence does not necessarily confirm another', he added. Josephine Quinatavalle, of pro-life pressure group Comment on Reproductive Ethics (Core), said that PGD was not an answer to disease. 'It's saying very clearly that somebody with breast cancer, with Huntington's disease or with bowel cancer is better off dead', she said.

Over 1000 PGD babies have now been born worldwide, with around 100 treatment cycles carried out every year in the UK. Peter Braude said that after PGD treatment, 'every single baby whose parents are willing to have their babies followed up ought to be followed up'. His call echoed concerns expressed by many PGD practitioners at a recent meeting on the interface between genetics and assisted reproduction, held in Seville, Spain. Last year, a study of 754 PGD babies showed that they are no more likely to be affected by birth defects than babies conceived naturally. However, Braude called for long-term follow-up, saying that 'we follow up all of our babies at two months, six months, one year, two years and five years and that's very important'.

A forthcoming debate on this topic, 'Testing Choices: The ethical implications of embryo testing for late-onset disorders' will be held at the Dana Centre in London on 4 May 2005. This event is organised by Progress Educational Trust, the UK charity that publishes BioNews, and further details can be obtained from www.progress.org.uk

© 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: 29 April 2005   Date Updated: 29 April 2005
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