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Regulating fertility treatment: more public debate is needed

13 December 2004
By Dr Jess Buxton
genetics editor, BioNews
Appeared in BioNews 288
Robert Winston, Britain's best known fertility doctor, stirred up a hornet's nest last week when he called for the abolition of the Human Fertilisation and Embryology Authority (HFEA). His tirade against the UK's regulatory body, launched in an interview for the 'Today' programme on BBC Radio Four, included the accusations that it is incompetent, overly bureaucratic and poorly managed. In response to the story, most clinicians, scientists and even critics of the fertility business have rejected the notion that the HFEA should be completely scrapped. However, several used the opportunity to air their own grievances over the regulation of IVF and associated practices in the UK.

Some of Winston's comments echo frustrations expressed by others working in the field of assisted reproduction. For example, he criticised the regulation of PGD (preimplantation genetic diagnosis), in which IVF embryos are tested to select those unaffected by a genetic disease. He points out that the current, case-by-case approval of PGD treatment is at odds with the laws governing abortion for fetal abnormalities. He also lambasted the HFEA for its rulings on 'saviour siblings'- tissue-matched IVF babies conceived to treat existing sick children - calling its decision-making process an example of 'shocking mismanagement'. Many other scientists and commentators have criticised the HFEA's decisions in this area, although most applauded its recent reverse of policy, allowing couples to go ahead with this procedure even when the embryos are being tested solely for tissue type.

But Winston also claimed that that the existence of a regulatory body may not increase public confidence in assisted reproduction and, instead, could trigger anxiety. Part of his argument was that other areas of medicine were far less regulated. This is a rather sweeping, counterintuitive and possibly unfounded argument. It seems more likely that regulation in some form is vital for reassuring patients and the public alike, to ensure trust in the fertility services on offer and also to foster a supportive environment for embryo research. Winston's outburst has now triggered a range of opinion on the form such regulation should take, with some people questioning whether regulatory and policy decisions should both be made by the HFEA.

However, although Winston may have helped to ignite debate over the regulation of fertility treatment and embryo research, his timing is a little strange. He has 'called for' the 1990 Human Fertilisation and Embryology (HFE) Act to be overhauled, despite the fact that this process is already well underway. The House of Commons Science and Technology Committee is in the final stages of gathering evidence for its review of the Act, and is due to report its findings next spring. This will be followed by a Department of Health (DH) review, and a full public consultation on the issues it raises. More changes may come about with the merging of the HFEA with the proposed new Human Tissue Authority (HTA) in 2008, which will then become the Regulatory Authority for Fertility and Tissue (RAFT).

As well as general questions about the future role of the HFEA, these welcome reviews will address specific topics, such as the provision made in the Act for the welfare of children born following assisted conception, and how PGD should be regulated. Such issues require more widespread, informed discussion. To this end, Progress Educational Trust - the UK charity that publishes BioNews - is organising a series of public debates timed to coincide with next year's DH review of the Act. All are welcome to attend these evening events, details of which will be sent to all BioNews subscribers nearer the time.

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