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Alarm over genetic condition screening recommendation

A leading disabled activist has raised serious concerns over the conclusions of the government’s human genetics advice body, after it backed the idea of national pre-pregnancy programmes to screen couples for genetic conditions.

A report by the Human Genetics Commission (HGC) said there were no “ethical, legal or social principles” that would prevent the introduction of such “preconception” screening programmes.

But Mike Smith, chair of the National Centre for Independent Living, said it was “very hard to understand” how it could reach this conclusion.

He said: “Disabled people are already worried about the way society increasingly does not value them.

“You only have to look at the rhetoric around benefits cuts, or the push for assisted suicide. This is just one more example of a public policy that says ‘being disabled is not good’.”  

Preconception genetic screening would involve making tests widely available for individuals who wanted to find out if they carried genetic conditions that could be passed on to their future children.

But Smith said: “The recommendations say ‘preconception genetic testing should be available… to all those who may benefit from it’.

“But what do they mean by ‘benefit’? I think we need carefully considered guidance on this, otherwise people could say they would benefit from ensuring that children were not genetically predisposed to conditions in older age, for example, or even perfectly manageable conditions.”

Dr Frances Flinter, chair of the working group which produced the Increasing Options, Informing Choice report, said a preconception test rather than a test during pregnancy or after a child was born would “ensure greater patient choice and access to information” for would-be parents. She said there was currently “variable and inconsistent” access to such tests in the UK.

But the report says the potential for stigmatisation and discrimination against those found to be carrying a genetic condition “should not prevent the introduction” of such programmes.

And it accepts that screening could mean fewer people with genetic conditions being born and so lead to the same result as a “morally unacceptable” eugenics policy such as the “organised, deliberate discouragement or prevention” of the birth of children with a genetic condition in a way that was “designed to eradicate that condition from society”.

The report also recommends that children should learn about screening in their final years of compulsory schooling.

Smith, who is also a commissioner with the Equality and Human Rights Commission, said he was “particularly concerned” about this recommendation.

He said equalities legislation was designed to improve relations between disabled and non-disabled people, but there was “a real risk that this recommendation could increase fear and misunderstanding of disabled people by these young people”.

He said there was already evidence that young people were often the perpetrators of disability hate crime.

Simone Aspis, director of the consultancy Changing Perspectives and another leading disabled activist, said the report’s conclusions were “pretty dangerous” and could lead to “eugenics through the back door”.

She said she would be “deeply concerned” about the kind of counselling given to any couples told they had an increased chance of conceiving a child with a genetic condition, as research has shown this counselling often provides a “negative perception” of such a child.

The UK National Screening Committee – which assesses all proposed national screening programmes and had asked the HGC for advice on the issue – will now consider the report.

A Department of Health spokeswoman 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.”