Genetics proposals ignore views of disabled people, say pressure groups

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abortion, and they are told out-of-date information, such as the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.