Reporter 450, 3 April 2000
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Studies at the University and St James’s Hospital into the causes of hereditary deafness have raised a number of ethical issues which researchers see as central to the future of their work.
Genetic researches in some parts of the world tend to take place in isolation from social and moral questions, but work in Leeds to identify genes involved in inherited hearing impairment has been accompanied by a groundbreaking study of the attitudes of deaf people towards the latest scientific advances.
Anna Middleton has just completed a doctoral thesis, supervised in both the School of Psychology and St James’s Clinical Genetics department. She carried out a nationwide survey of deaf people’s views on such issues as whether pre-natal testing for deafness would be seen as a step forward.
The evidence is that a significant proportion of deaf or hearing-impaired adults felt genetic testing would do more harm than good. Many of those who define themselves as "culturally deaf" - using sign language, taking pride in their difference and rejecting the notion of deafness as a pathological impairment - see pre-natal diagnosis as a threat to their long-term existence as a community.
A 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. Even among the minority prepared to consider pre-natal tests, a significant proportion would in fact prefer to have deaf children.
"Giving papers in the USA, I encountered the attitude that what is scientifically possible is ethically OK - so long as people are prepared to pay for it," said Dr Middleton. "European geneticists tend to be much more cautious on ethical issues."
Her joint supervisor, Professor Bob Mueller, who has been researching the genetics of deafness at St James’s and with Professor Alex Markham in the University’s Molecular Medicine laboratories since the early 1990s, said it was essential for responsible scientists not to lose sight of the impact of their work on society.
"The latest advances in human genetics are raising whole new ethical questions for the medical community," he said. "Even within our own team, there is a variety of opinions on pre-natal testing. We should avoid stigmatising deafness as some kind of illness and encouraging people to think in ‘designer baby’ terms."
His own research, involving studies of inter-related families with a high incidence of deafness, has identified the locations of a number of genes involved. The goal of the work is to understand exactly how these genes function in the inner ear, impeding the conversion of incoming sound waves into the nerve signals through which the brain experiences hearing.
"One in three people will experience some degree of hearing impairment by the age of 50. We need a fuller understanding of the biology of normal hearing before we can design interventions to arrest the development of progressive hearing loss," said Professor Mueller.
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