Reporter 450, 3 April 2000

Deafness study focuses on families - and confronts ethical dilemmas

Studies at the University and St Jamesís University Hospital have succeeded in identifying some of the genes involved in inherited hearing impairment. The ground-breaking research has brought scientists closer to the technical feasibility of pre-natal testing for inherited deafness - raising profound ethical issues, which the Leeds investigators are determined not to side-step.

Genetic studies, benefiting from the co-operation of a group of inter-related families in West Yorkshire, have been accompanied by a study of the attitudes of deaf people towards gene science.

Anna Middleton has just completed a doctoral thesis, involving a nationwide survey of deaf peopleís own views on such issues as whether pre-natal testing for deafness would be seen as a step forward.

Many deaf adults who use sign language, take pride in their difference and reject the notion of deafness as a pathological impairment - see pre-natal diagnosis as a threat to their long-term existence as a community.

The overwhelming majority of deaf adults say they would not mind whether their own children were deaf or hearing, and would not avail of a test in pregnancy.

"Some scientists think that what is possible is ethically OK - if people are prepared to pay for it," said Dr Middleton. "But geneticists need to be much more cautious on ethics."

Her thesis was jointly supervised by Professor Jenny Hewison in the School of Psychology and Professor Bob Mueller, who leads the studies in deafness genetics at St Jamesís Hospital and works closely with the Universityís molecular medicine laboratories.

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