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HFEA wants data on IVF childrens' health

1 November 2004
By BioNews
Appeared in BioNews 282

The UK's Human Fertilisation and Embryology Authority (HFEA) is reported to have said that it wants to begin to monitor the long-term health of children born from IVF and related fertility treatments. In particular, it will focus on the possible effects of ICSI (intra-cytoplasmic sperm injection), a procedure in which a single sperm is injected directly into an egg, and PGD (pre-implantation genetic diagnosis), which involves the removal for testing of one cell of an early embryo.

According to last week's Independent on Sunday (IOS) newspaper, the HFEA's plans have been sparked by a report from the recent annual meeting of the American Society for Reproductive Medicine (ASRM). The report, which looked at the results of 169 published studies of the health and development of IVF children, showed that overall, they are no more likely to have major health problems than naturally conceived children. They also found no evidence to suggest that IVF increases the incidence of major birth defects, cancers or problems in psychological or emotional development. However, it was found that IVF might have a 'negative impact' on some children during birth, and earlier work linking IVF to a slightly increased risk of some rare genetic conditions was also confirmed. Other papers presented at the ASRM conference appeared to suggest a link between IVF and higher rates of behavioural problems and physical abnormalities.

The HFEA now wants the law to be changed, said the IOS, so that it can establish a national register of all fertility procedures carried out in UK clinics. The register could contain details of the techniques used, their outcomes and follow-up data on the physical and developmental health of the children born. If established, it would be the first such register in the world. Earlier this year, the US President's Council on Bioethics suggested a similar register to hold data on all US births from fertility treatment, currently estimated to be around one per cent of births per year.

An HFEA spokeswoman is reported as saying that 'a database would be the best way of monitoring these children from the time they are conceived right through their lives'. But, she added, 'at the moment the privacy restrictions are so tight that we cannot share our data with anyone'. 'We believe IVF is safe and we review all the available evidence before allowing procedures to take place, but until there is a really big study out there that can give us a definitive picture, we wont know', she continued. In its submissions to a review of the law currently being undertaken by the House of Commons Science and Technology Committee, the HFEA has called for a relaxation of the data restrictions so that it can set up a national IVF registry.

SOURCES & REFERENCES
New screening demand over health fears for IVF babies
The Independent on Sunday |  24 October 2004
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