News

If the media accurately reflects public attitudes, there is apparently little concern about the possible impact of the new genetic sciences on the shape of humankind. The public may have qualms about some developments, such as human cloning, but the prospect of using the new knowledge to eradicate inherited illness and impairment is apparently welcomed without qualification.

Some disability organisations, however, are expressing deep concern about where the science is leading us.¹ If avoiding the birth of children who are different is so important, what does that say about society's attitude to disabled people? Will parents who have a disabled child be seen as stubborn and irresponsible because - it might be presumed - they ignored the prenatal diagnosis? And just supposing that disability could be eradicated, would it really make the world a better place?

A research project by Values Into Action aimed to find out how widely such concerns are recognised and shared.² Eighteen established groups were recruited, providing a total of 176 participants. These groups included local organisations of parents of disabled people; staff from service agencies; and "uninvolved" community groups including college students and a Round Table group.

Each group was asked to devote some time of a meeting to the topic, starting with individually recorded responses to 10 statements (see below). After informal discussion, the participants again recorded responses to the statements, providing an indication of whether their views had changed. The same issues were also discussed with two People First groups but, because the topic could be distressing, the formal research method was not used.

Responses to the statements showed that, in the broadest terms, prevention of impairments won strong support. Three-quarters of the participants (79 per cent) agreed with the statement welcoming scientific progress towards the elimination of inherited diseases.

But other statements indicated a pattern of attitudes that was far more complex. Two-thirds (64 per cent) of participants supported the statement that our society is enriched by disabled people, and the same proportion rejected the assertion that abortion is the responsible course of action when the child would have severe learning difficulties. Only 14 per cent felt that it would be better if people with severe learning difficulties had never been born.

Discussions by the participant groups indicated that these complexities and contradictions are caused by two factors.

Firstly, there is the different but linked issue of abortion. While people may feel able to support the abstract notion of "the elimination of inherited impairment", even those who are not "pro-life" may feel less comfortable when elimination means abortion.

Secondly, the labels used in the statements forced people to fall back on their own stereotypes. "Disabled people" may call up the image of an intellectually able person in a wheelchair: the astrophysicist Stephen Hawking was frequently cited. In contrast, for some participants the term "severe learning difficulties" triggered negative images of dependency and incapacity. The important lesson is not about research design, but about the need for public discussions about these issues in the real-life context, and preferably in the company, of disabled people.

The pattern of responses to the statements showed few clear differences between the categories of respondent. In discussion, many service workers were very alert to the issues, but this did not translate into a distinct position. Some parents - notably those who are active advocates - were equally articulate and passionate in their support of the contributions of people with learning difficulties. As one father said: "I've changed from being an 'If onlyÉ' parent to a 'Thank God' parent."

On the other hand, the "rank and file" members of the parents' groups tended to be less sentimental, and to view professional talk about the contributions of people with learning difficulties as akin to political correctness. As one mother said, "The professional people should try having a disabled child for a weekend."

There was very little difference in the pattern of response to the statements before and after discussion. As might be expected, people tended quickly to fit their viewpoint on this topic into their wider belief system. One business executive said parents who knowingly had a disabled child should be denied access to health, social care and schooling for the child.

Equally, and at the other end of the spectrum, many participants drew on their own experience of disadvantage or exclusion to identify with disabled people. This was particularly evident among a group of service staff that included a high proportion of black people. A group of "uninvolved" teenagers clearly shifted, in the course of their discussion, from a position driven by pity to one based on human rights - and thus became the only group that showed a distinct shift in its responses to the statements.


Some people could not see any cause for concern. But they were very few. Across all the groups and participant categories, the discussions were animated, frank and often emotional. Although the participants might not have been a representative sample, their responses suggest that there are widespread misgivings about the drive to eradicate genetically caused impairments.

However, the research also highlighted how difficult it will be to move from a sense of misgiving to a position of opposition. At every turn, views came with a qualification.

So, for instance, the belief that disabled people contribute to society may come with an exemption where people with profound impairments are concerned. Likewise, abortion on grounds of difference may be held to be wrong, but not in the case of very severe or multiple impairments.

The tradition of tolerance in our society is so strong that even people who have an absolute moral objection to abortion might not wish to deny the choice to other people. And those people who most loudly defend the rights of disabled people are likely to base their position on a broader framework of human rights - a framework that will make them equally vehement in support of "a woman's right to choose".

The disability lobby has yet to offer any clear position on the new genetics. But the genetics industry is charging ahead. Values Into Action will be holding a seminar later this summer, with the aim to develop a coherent and practical response in policy. Mere expressions of concern may be worthy, but they will not make a difference.

Steve Dowson is an independent consultant

References

¹ C Kenny, "Genetics proposals ignore views of disabled people, say pressure groups", Community Care, 3 July 2003

² S Dowson, As Nature Intended? Attitudes to the New Genetics and People with Learning Difficulties (discussion paper), VIA, 2003; see website www.viauk.org 

The statements   

The participants in the Values Into Action study were asked to respond before and after discussion - the latter to see if their views had changed - to the following statements: 

• In my view, abortion is always wrong, whatever the circumstances. 
• I welcome scientific progress towards the elimination of inherited diseases. 
• Our society is enriched by the presence of disabled people. 
• Parents who are told that their unborn child will be severely disabled should have the right to choose abortion. 
• When it is discovered early in pregnancy that a child will be born with severe learning difficulties, abortion is the responsible course of action. 
• The contributions that people with learning difficulties bring to our community outweigh the costs and problems they also present. 
• Prevention of physical disabilities is more important than the prevention of learning disabilities. 
• The money being spent on research to prevent the birth of disabled people should be used instead to provide better education, health, and social services for disabled people. 
• It would be better if people with severe learning difficulties had never been born. 
• The excitement about developments in genetic research is a way of saying to disabled people that society does not want them.