The BBC website reports today that genetic tests for conditions that can be passed on to future generations should be more widely available before pregnancy, says the government’s advisory body on genetics. There are “no specific social, ethical or legal principles” against preconception screening, a Human Genetics Commission report has ruled. It said testing should be available to any couples who may benefit from it. The UK National Screening Committee will now consider the findings.
Some preconception testing already takes place in people who know they have a family risk of a genetic illness such as cystic fibrosis and sickle cell disease. The report’s recommendations could give everyone that option.
Dr Frances Flinter, a consultant clinical geneticist at Guys and St Thomas’ Hospital in London who led the report, said screening would increase patient choice. She added: “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.”
The report recommends that children should be taught about screening in the last years of school. 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.”
Josephine Quintavalle, the director of the campaign group Comment on Reproductive Ethics, said it was “simply a modern version of eugenics”.
Dr David King, director of Human Genetics Alert, said the report was “immensely dangerous” and that “it will inevitably lead to young people being stigmatised and becoming unmarriageable, and disabled people will feel even more threatened.”
A spokesperson for the Department of Health said: “Genetic screening can be a powerful diagnostic tool in assessing an individual’s risk of conditions such as cystic fibrosis. But there are a number of considerations that are broader than the remit of this report which influence whether specific screening programmes should be established. The UK National Screening Committee will now consider the findings.”