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Tuesday, September 28, 1999 Published at 01:19 GMT 02:19 UK


Disabled people mixed over genetic future

Scientists will be able to test for a huge number of conditions in the future

Disabled people want a ban on employers and insurers being given information on genetic predisposition to disability, says a survey.

But a majority have a mixed view on the increasing role genetics will play in our lives, especially once the whole human genome is mapped.

The survey by disability charity Radar found people feared the growing emphasis on genetics would lead to further discrimination, but could also provide benefits.

Some 90% of people questioned wanted a ban on employers and insurers being given access to information suggesting someone might develop a genetic condition.

And 94% wanted stronger regulation of genetic technologies.

Their fears were partly based on awareness of events earlier this century.

For example, the use of widespread sterilisation of disabled people in the 1920s and 1930s in the UK, USA and Germany and the euthanasia policy in Germany.

Radar says research from the US also shows evidence of employment or insurance discrimination against people with a predisposition to a genetic condition.

But 22% of people said they felt hopeful that genetic developments could help them.


Many of the 452 people who responded to the Genes Are Us? survey, who included disabled people and those with a genetic predisposition to a disabling condition, said they were worried about the current policy of encouraging mothers-to-be to abort foetuses on the grounds of risk of disability.

Seventy-two per cent said abortion should be illegal for a correctable genetic condition, such as a cleft palate.

Fifty-six per cent and 53% respectively opposed abortion for predicted deafness or blindness.

Fifty-three per cent were against termination for people who might develop a painful genetic condition at age 40.

And 37% said abortion of foetuses with Down's syndrome should be banned.

However, 36% agreed with terminations for children who might not live beyond the age of five.

There was also concern that women were being encouraged to abort potentially disabled children with little information being given to them about the conditions their children might suffer from.

And 29% of respondents said there should be a standard time limit for abortions based on disability.

Currently, women can abort a foetus at any time during their pregnancy if they fear it may suffer from a "serious handicap". Otherwise the limit is 24 weeks.

Voice for the disabled

Radar says the survey is important because it gives "a voice to disabled people and others whose lives are affected by impairment and disability on a subject almost universally recognised to be a major one for the next century".

It adds that disabled people often feel excluded from the debate.

The government is about to set up a commission of experts on genetics.

The survey is being presented on Tuesday at a meeting attended by public health minister Tessa Jowell at the Labour party conference in Bournemouth.

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