Campaigners call for parental consent in stem cell research

Campaigners are lobbying the UK Government to change the current Human Fertilisation and Embryology Bill to allow embryonic stem cellsto be created using tissue from ill children, in order to facilitate research into life-limiting diseases.

Under the current version of the Bill the procedure could not go ahead unless the child was deemed competent to give consent. The group, comprising the Genetic Interest Group, Great Ormond Street Hospital for Children NHS Trust, and the UCL Institute of Child Health, have written to health minister Lord Darzi, asking that consent for the research be brought in line with that required for other health procedures - that is, to be given by the parents or guardian of the child. The Directors of the three petitioning bodies wrote that 'the Bill, as it stands, imposes a barrier to one of the most potent tools for research into the most severe childhood diseases'.

The petitioners argue that embryonic stem cells created using skin cells from the sick child, via a procedure called SCNT, might prove to be one of the most effective ways of testing potential cures or therapies for life-limiting illnesses. However, the nature of some of these illnesses means that they may never be in a position to give informed consent to the procedure. Children may be affected by a serious illness at a very early age, or they may have a condition that means their brains do not mature. In either case, the child would not reach the level of capacity required to give informed consent to the procedure.

The campaigners have argued that as the burden of consent for other health procedures - including high-risk surgery - lies with the parents or guardian of a child, they should also be able to consent to donating cells fro this research, which carries a much lower risk. The group wrote 'given the existing regulatory framework that provides for proper informed consent procedures where children are concerned, there is an overwhelming moral argument for the bill to be amended so that consent is brought into line with other health and research activities'.

The Bill is currently under discussion by the House of Lords, and is due to progress to the House of Commons in the spring. Lord Alton has objected to the proposal by the campaigning groups, arguing that it contravenes the principle of autonomy and warning that the child might feel 'considerable antagonism' that their cells were going to be taken and potentially used to create embryos. However, a comment from the Department of Health has assured the campaigners that their proposal will be carefully considered.

The Department of Health spokesperson said that 'the government believes that some very strong and persuasive arguments have been put forward for cases where, perhaps because the child is suffering from a terminal illness at a very early age, the current consent requirements in the bill are not appropriate and should be revised'.