Give teenagers genetic tests to see if they carry incurable diseases that could be passed on to their children

by jeeg 7. April 2011 21:48

Teenagers should be offered gene tests to see if they are carrying incurable diseases that could be passed on to children, official guidelines say.

They would be encouraged to undergo screening which would show up any DNA flaws that determine inherited conditions such as cystic fibrosis and Down’s syndrome.

The guidelines say 15 and 16-year-olds should be offered the tests before they start having sex or settle down.

Those found to be carrying inherited conditions could be offered IVF – in which they can disregard ‘diseased embryos’ – or the chance to adopt. The guidelines from the Human Genetics Commission state there is no ‘social, ethical or legal’ reason why all people should not be screened.

But campaigners warn that the blood tests could lead to a form of ‘eugenics’. Dr Helen Wallace, of GeneWatch UK branded the move ‘dangerous and misleading’.

If both partners have the same genetic fault, there is a one in four chance their baby will develop that disease.

Diseases such as cystic fibrosis or sickle cell disease can develop in youngsters if both parents are carriers of the genetic condition.

Couples who both test positive for a disease could avoid having an affected child by having IVF, screening embryos or using donated sperm.

However, the move is opposed by embryo rights groups such as Comment On Reproductive Ethics, who say such tests have eugenic connotations and could lead to more abortions.

Founder Josephine Quintavalle welcomed the HGC's 'declared preference' for pre-conception testing over abortion but said the report was 'far too deferential to genetic determinism'.

She said: 'The public always reads these reports in terms of wonderful new cures and that is very worrying. Killing the carrier of a genetic disease does not eradicate or cure the disease. It is simply a modern version of eugenics.'

But Dr Frances Flinter, chair of the working group which developed the report, said: 'At the moment, preconception genetic testing only occurs if an individual knows they are at risk of carrying a genetic condition or they belong to a community which has set up a local screening programme.

'This means many individuals or couples do not discover that they carry a genetic condition until they are pregnant.

'A preconception test rather than a test during pregnancy or after a child is born will ensure greater patient choice and access to information that will help support people who are planning to have children.

'There is variable and inconsistent access to these tests in the UK.

'We believe there are no specific social, ethical or legal principles that prevent preconception genetic testing in population screening programmes, which would help ensure fairer access to these tests.'

The report recommends preconception genetic testing is made available to 'all those who may benefit from it'.

People should also be given advice so they can make informed choices about the reproductive options available to them.

Where antenatal testing is currently offered then, where technically feasible, preconception screening should also be offered, the report said.

Children and young people should also learn about antenatal and preconception screening in the final years of school.

A spokesman 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.'

Today's report said that if screening for older schoolchildren and young people is introduced it would be essential to make sure they are not pressured into having the tests.

Couples found to be at risk of conceiving a baby with a genetic condition should be referred to experts in the condition and their options for pregnancy considered.

If genetic conditions are identified during the course of other screening tests, such as at birth, the results should be 'provided to GPs and stored in a secure and accessible format so that the children have this information when they reach adulthood', the report said.

By Sophie Borland, Daily Mail


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