11 April 2011
ByAppeared in BioNews 603
The UK Government's advisory body on genetics has said there are no legal, social or ethical barriers to pre-pregnancy genetic screening, and that this could be offered routinely on the NHS. In a report last week, the Human Genetics Commission (HGC) said testing should be 'equally available to all those who may benefit from it'.
Screening people before they become parents can help prevent the birth of children with life-threatening genetic illnesses but currently only couples whose family history or ethnicity suggest a risk are tested. The report looked at tests which can identify carriers of recessive conditions, such as cystic fibrosis. If both parents are carriers there is a one in four chance a child will develop the disease. However, if the tests are performed at the pre-pregnancy stage, couples who test positive could then choose to conceive by IVF and screen the embryos - selecting those which are unaffected by the condition - use a sperm donor, or take further tests during pregnancy.
Although the report only offers a preliminary exploration of the ethical considerations arising from population-wide screening, once the practical issues have been addressed it could lead to these tests being made available to everyone, and, in the longer term, pave the way for the NHS to offer screening for hundreds of inherited conditions.
The HGC believes that offering people testing before pregnancy increases patient choice. However, it stresses that people should not feel pressured into screening and that they require support in making informed decisions. This could take the form of genetic counselling.
'People should be told about the availability of testing and the sort of information that can generate, but not specifically encouraged to have the tests, because it's important that people make the decision themselves as to whether they want to get access to that sort of information', said Dr Frances Flinter, a consultant clinical geneticist at Guys and St Thomas' Hospital in London, who led the report.
Catherine Upstone, whose seven-year-old daughter Cerys has cystic fibrosis, said: 'The worst thing is finding out when your child is four-weeks-old that she has a life limiting condition, and people have the right to information should they choose to have it. If there's the support in place for after the genetic testing, then I think it's a positive thing'.
The report is broadly supportive of screening on scientific and ethical grounds. However, the risks, benefits and costs would need to be examined before a screening programme could be implemented. 'There are a number of considerations that are broader than the remit of this report which influence whether specific screening programmes should be established', said a spokesperson for the Department of Health (DH). The DH said the UK National Screening Committee will now consider the findings.