Screening for cystic fibrosis

This week's BioNews reports on cystic fibrosis antenatal screening programmes in the United States in which some pregnant women may have been given the wrong information about their chance of having a baby with the condition. Some antenatal tests were carried out unnecessarily and, according to the American College of Medical Genetics, some terminations of pregnancy followed.

Should we be concerned that such mistakes will occur in the United Kingdom? Cystic fibrosis (CF) is one of the most common genetic disorders in Northern Europe, affecting one in every 2500 children of Northern European origin. About 7500 people in the UK are living with CF: they currently have a life expectancy of about 31 years.

There are three stages at which screening for CF could be carried out: when a couple is planning to have a child; during pregnancy and immediately after the baby is born. There is currently no national screening programme for cystic fibrosis in the UK. However, two years ago, health minister Yvette Cooper announced a programme of neonatal screening for cystic fibrosis as well as improvements in screening standards, better information for pregnant women and their partners and greater availability of genetic counsellors. Scotland is a little more ahead of the game. In February of this year, the executive announced that CF screening of newborn babies will be introduced in Scotland by next April in order to maximise early diagnosis of the condition.

Although there is no antenatal screening programme for cystic fibrosis in the UK, it is thought that if one were to be adopted here, the chance of mistakes like those in the US occurring here is lower. This is because of higher laboratory standards and better genetic counselling services in the UK. Some might be tempted to see the American experience as proof that genetic screening for large groups of the population is more trouble than it is worth. But this need not be true. As long as screening programmes provide accurate information which is accompanied by good genetic counselling, such services can be of enormous benefit to families.