UK Parliament legislates 'saviour sibling' treatment

UK MPs have rejected amendments that sought to outlaw the creation of 'saviour siblings'- babies conceived following embryo testing to ensure their cord blood will provide tissue-matched stem cells for an existing sick child. The controversial clause, contained within the Human Fertilisation and Embryology Bill before the House of Commons last week for a second and final reading, remains intact. MP support for tissue-typing embryos to create 'saviour siblings' in limited circumstances represents one of three 'free' votes of conscience Prime Minister Gordon Brown granted - in response to mounting pressure from the UK's Catholic community - to Labour MPs on three particularly controversial measures.

Conservative MP David Burrowes argued that fundamentally, children should not be 'deliberately created to be used for the benefit of another' despite 'pressing' need. He tabled an amendment for a blanket-ban of tissue-typing embryos that was defeated (342-163). Shadow Health Secretary Andrew Lansley's status-quo proposal to maintain tissue-typing only for siblings with a 'life-threatening' illness, was also defeated (318-149).

The clause is part of an approved legislative bill which now awaits Royal Assent before officially becoming law. The new 'saviour sibling' provision will slightly relax current restrictions. It expressly empowers the Human Fertilisation and Embryology Authority (HFEA) to license fertility clinics to test IVF embryos and select those that genetically match an older sibling who has a 'serious medical condition', who could benefit from donated umbilical cord blood stem cells, bone marrow or other tissue of any resulting child. The HFEA will still consider each individual case, and pledges to not approve procedures if an alternative therapy exists that does not involve embryo destruction.

The British Fertility Society (BFS) welcomed the statutory clarification: '...in a carefully regulated environment as exists in the UK, the birth through IVF of a much wanted and cherished child in its own right, coupled with the opportunity to help an existing sick child, is acceptable clinical practice in the view of the BFS. The decision by the House is sensible and in the rare instances when such cases arise offers families a real opportunity for help in extraordinarily distressing circumstances'.

UK regulation of 'saviour siblings' has a conflicted record since the first UK application in 2001, fraught with legal and ethical challenges. The 1990 Act does not specifically address the testing and selection of embryos, but in 2005 litigation ultimately placed it within UK fertility watchdog HFEA's remit which then stumbled to set policy boundaries. The new law, aimed at updating the 1990 Act in line with scientific advances and contemporary attitudes, will translate that 2005 House of Lords judgement into statute. The limits however are more permissive. In July 2004 following a formal review of the issues, the HFEA relaxed their criteria.

During the debate, many supporting MPs argued that there is a moral imperative to allow medicine to intervene and alleviate suffering where reasonably possible and replenishable tissue donation is not onerous subjugation of one's autonomy, especially when weighed against the suffering or death of an older sibling. Some feel that the impact of bereavement or deprivation of a meaningful sibling relationship is worse. Others contend that parents have children for many reasons and its unlikely these children born would be treated solely as donors and not loved in their own right by parents willing to undergo an extremely invasive, emotionally difficult and relatively ineffective assisted fertility procedure to save an existing child.