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Disability rights campaigners have criticised a new government white paper on genetic research for ignoring the impact of the new science on disabled people.

The white paper, Our Inheritance, Our Future, published last week, proposes to outlaw discrimination against people on the grounds of their genes and outlines laws to regulate the way genetic information is used. It proposes creating a criminal offence of genetic testing without consent, and introduces regulation of techniques to screen embryos for genetic disorders such as cystic fibrosis. There is also to be £50m of investment in genetic research and NHS testing laboratories.


Jean Collins, director of learning difficulty charity Values into Action, says that, although the white paper is "very strong on the wonderful opportunities of science", it is not strong on values.

"We have a duty as a society to look at values, but the makeup of the Human Genetics Commission is very heavily scientific, and science is not value-based," Collins says, warning that new technologies would not address existing prejudices.

"The white paper specifically mentions giving counselling to parents to make informed choices about Down's syndrome, but the counselling that people get now is extremely poor. There is quite considerable pressure on mothers carrying a Down's baby to have an abortion, and they are told out-of-date information, such as the child will be a vegetable or not live past 40.

"If we are to increase screening, there's got to be an awful lot of work to make sure that parental choice is free and informed."

New research undertaken by Values into Action suggests that there are mixed feelings on the issue among carers and the public at large.

Their survey of 61 social care staff, 43 members of the public and 34 parents of children with learning difficulties on questions of abortion, genetics and disability reveals that, while more than three-quarters welcomed scientific progress in eradicating genetic diseases, almost two-thirds rejected the statement that abortion is the only responsible course of action to prevent a child being born with severe learning difficulties.

Only 14 per cent agreed that it would be better if such a child had never been born. Asked if money for preventive genetic research would be better spent on services for disabled people, 37 per cent agreed and 27 per cent disagreed.

Discussing these results, author Steve Dowson warns that the new science might actually increase the stigma and public hostility towards disabled people.


In the past, having a disabled child was viewed as a chance matter, he explains. But in the future, it might be regarded as a sign that the parents "either carelessly neglected to have the tests or stubbornly and irresponsibly refused a termination against medical advice," Dowson says. "In time, this attitude may come to apply to disabled people themselves, as the living evidence of irresponsibility. And just as there is public resentment about meeting the welfare costs of people who appear to have caused their own poverty or homelessness, there may be increasing intolerance of publicly funded services for people who 'should not have been born'."

Barbara Lisicki, spokesperson for disability group Direct Action Network, says the proposals fail to include the views of disabled people. "The prevalent ideology is that disabled people's quality of life is not worthwhile," she says, "but that view is not logically consistent. You can screen out what you like and then someone can get hit by a truck and sustain a brain injury."

However, Lisicki thinks that abortion or embryo selection would be acceptable if the child was likely to lead only a very short and painful life.

Anti-abortion lobbyists Life are more hardline. "To reject an embryo on the basis of disability is morally the same as rejecting a born person on this ground," says spokesperson Patrick Cusworth. "As a society we should be condemning this type of 'quality control' of people." 

- See www.doh.gov.uk/genetics/whitepaper.htm and As Nature Intended? from www.viauk.org after 14 July.