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Who should decide about embryo testing?

10 July 2007
By Dr Jess Buxton
Genetics Editor, BioNews
Appeared in BioNews 415
When the technology for testing IVF embryos for genetic mutations that cause disease was first developed over 15 years ago, its potential uses seemed pretty clear cut. PGD provided a way in which couples at high risk of having a child affected by a genetic disorder could embark on a healthy pregnancy. The main issues in the early days were the experimental difficulties associated with carrying out genetic tests on the single cells removed from the 3-5 day old embryo, and extending the repertoire of diseases that could be tested for.

Today, PGD remains an expensive, technically demanding procedure that is still not widely available. But it has triggered more debate and controversy than perhaps any other area of reproductive or genetic medicine, with newspaper headlines about 'designer babies' and 'slippery slopes' appearing every time a new development is announced. In the UK, its use is more strictly regulated than that of prenatal tests - clinics must apply to the Human Fertilisation and Embryology Authority (HFEA) for a license to perform every new PGD test they wish to carry out.

In recent years, the use of PGD to help couples conceive tissue-matched babies who can help save the lives of sick siblings provoked a challenge to the way this technology is regulated in the UK. As well as 'saviour siblings', other unforeseen uses of PGD - such as sex selection for non-medical reasons, testing for diseases that do not appear until adulthood and testing for 'predispositions' to disease that may never result in illness - have also lead to new ethical and legal dilemmas. As we report in this week's BioNews, different national approaches to the regulation of PGD have lead to a growth in couples travelling abroad for treatment, often because their own country does not permit the procedure.

But is it the role of government to impose boundaries on PGD, or is it a decision for parents and their clinicians to make? This is the subject of a forthcoming public debate organised by Progress Educational Trust, the UK charity that publishes BioNews. The event will be chaired by Professor Marcus Pembrey, and will feature short presentations from three speakers - Ann Furedi, of the British Pregnancy Advisory Service (BPAS); Alison Lashwood, of Guy's and St Thomas' Hospital, London; and John Wyatt, of University College London, followed by an open discussion of the issues raised. It will take place at 6.30pm at the Guardian Newsroom, London EC1R 3GA on Monday 16 July 2007. If you have not yet registered for this free event - part of a series of three debates funded by the Wellcome Trust exploring issues in genetics - then you can still do so, either by calling 020 7278 7870, or sending an email.

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