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November 12, 2004

Ethical dilemma in hunt for 'deaf' gene

From: Sydney Morning Herald - Sydney,New South Wales,Australia - Nov 12, 2004

By Julie Robotham, Medical Editor
November 12, 2004

Australian scientists are studying 6000 primary schoolchildren to see whether they carry a mutation in a gene linked to deafness.

But if they do find changes in the DNA of healthy children that may predict later hearing loss, they will be able to give parents no meaningful information about when the condition is likely to become apparent, or help them prevent it.

The ethically fraught study is thought to be the first "gene hunting" project in Australia to involve children who are not sick, researcher Lynn Gillam told the World Congress of Bioethics at the University of NSW this week.

"Parents appear not to understand genetic testing and what it will mean. There will be no health benefit or information they can act on," said Dr Gillam, a research fellow at the Centre for Applied Philosophy and Public Ethics at the University of Melbourne.

"We need to spend a lot of time and effort to make sure parents realise their own child will not directly benefit."

The gene in question is connexin 26, located on chromosome 13, in which a specific mutation has already been shown to cause many cases of profound, inherited deafness.

The children, recruited from primary schools in years 2 or 5, have already been tested for hearing loss so slight that it is unlikely their parents and teachers would even have recognised it.

Ninety such children have been identified and, after DNA swabs are taken in the study's next phase, their genes will be scanned to see whether they have a pattern of mutations.

But the study, conducted through the Royal Children's Hospital in Melbourne, could find any such mutations extend to children whose hearing test was normal.

Copyright © 2004. The Sydney Morning Herald.