UNITED KINGDOM: A right to know - biological origins of IVF children to be stated on birth certificates

[LONDON, 1 August 2007] - Children born from donated sperm or eggs will have the information marked on their birth certificates under sweeping changes to fertility laws proposed by an influential group of ministers and peers in the United Kingdom.

The move, designed to bolster childrens' right to know their origins, is among a raft of far-reaching recommendations the government will consider ahead of its planned reforms of legislation which has been overtaken by science.

The proposals amount to a parliamentary demand for the government to tear up its draft fertility bill, published in May, in favour of a more permissive approach that would see substantial changes in ethically contentious areas, such as the creation of "saviour siblings", the use of surplus embryos in research and the need for children conceived through IVF treatment to have a legal father figure.

The joint Commons and Lords panel was set up to scrutinise the draft human tissue bill. Over the past two months the committee has taken evidence from 46 witnesses and received more than 100 written submissions.

The report from the 18-member panel, published yesterday, said there must be significant changes when the bill is included in the Queen's Speech in November.

Under existing law, parents are not required to inform children if they are born from donated eggs and sperm. The committee concluded that while a law obliging parents to do so was unenforceable, children should be able to find out the information for themselves from their birth certificates.

Responsibility of State

"If parents want to deceive their children that's their decision, but it is our view that the state should not be complicit in that," said Phil Willis, chair of the committee.

Informing children about their biological origins would ensure they had proper access to donor registers that would allow them to find the identity of their genetic parent, he added.

Among other proposals, the panel urged government to extend the legal limit for storing IVF embryos from five to 10 years, bringing it into line with rules for freezing sperm and eggs. With a couples' consent, any embryos remaining in storage past the 10-year limit would be handed to the Human Fertilisation and Embryology Authority (HFEA), the independent regulator, instead of being destroyed, which could release them for medical research.

Dr Vivienne Nathanson, head of science and ethics at the British Medical Association, said the channelling of frozen embryos into research was likely to be welcomed by couples who have surplus embryos, but are not comfortable with donating them to an infertile woman.

Further proposals seek to relax laws on the creation of "saviour siblings", where children are conceived to save the life of a sick brother or sister. The selection of embryos to be donors of potentially life-saving tissues is currently only permitted if the sick child has a potentially fatal illness, but would be broadened to treat children with any "serious medical condition", possibly including autism if a cure was found in future.

The report also recommended giving the HFEA power to grant research licences to scientists wishing to fuse human and animal tissues to create hybrid or chimera embryos. The recommendation was welcomed by the head of one of the two teams of researchers that have applied to the HFEA to create human-animal embryos by fusing human cells with rabbit or cow eggs. The embryos, which would be 99.9% human, are expected to be useful sources of stem cells for research and development of future medical treatments.

Stephen Minger, head of one of the teams at King's College, London, said: "Trying to define what is scientifically allowable based on primary legislation doesn't make any sense. In the long term it'll be unwieldy and people will constantly be pushing the boundaries of that and parliament will constantly have to go through this whole process again.

"I'm hopefully optimistic, but we've been fighting this battle now around nine months. One thing that concerns me is when will the vote in parliament take place? Will this just keep dragging on?"

Further information

pdf: http://society.guardian.co.uk/children/story/0,,2138984,00.html


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