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Call to track health of embryo test babies

29 April 2005
By BioNews
Appeared in BioNews 306

All centres carrying out PGD (preimplantation genetic diagnosis) 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 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 debate on this topic, 'Testing Choices: The ethical implications of embryo testing for late-onset disorders' will be held tonight at the Dana Centre in London. This event is organised by Progress Educational Trust, the UK charity that publishes BioNews, and further details can be obtained from

Baby gene test safety 'unchecked'
BBC News Online |  25 April 2005
Call to scrutinise embryo testing
The Guardian |  26 April 2005
Embryos may be tested for breast cancer genes
The Daily Telegraph |  26 April 2005
Embryo testing for breast cancer
The Daily Mail |  26 April 2005
19 June 2007 - by Dr Jess Buxton 
Carrying out genetic tests on embryos has no effect on the health of the resulting babies, according to new findings reported at the annual meeting of the European Society of Human Genetics. The researchers, based at Brussels' Free University, followed up over 500 babies born following...
4 April 2005 - by BioNews 
Experts in clinical genetics and assisted reproduction met last week to discuss issues that affect both areas of medicine, such as embryo testing, genetic causes of infertility, possible long term effects of assisted reproduction techniques, counselling concerns and European regulations. The workshop, held at the Institute for Prospective Technological Studies...
1 November 2004 - by BioNews 
The UK's Human Fertilisation and Embryology Authority (HFEA) has issued a licence allowing doctors to test embryos for a gene mutation that confers a high risk of bowel cancer. Four couples at risk of passing on familial adenomatous polyposis coli (FAP) to their children are now set to undergo the...
20 August 2004 - by BioNews 
Carrying out genetic tests on embryos appears to have no effect on the health of the resulting children, according to a new US study. Scientists at three institutes pooled their data on all PGD babies born during the past 12 years, a total of 754. The research, reported in the...
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