Miss-Delectable
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Should we cure the 'deaf gene'? - Daily Features - Features - Belfast Telegraph
Genetic counselling is quite a new branch of medicine and many people may not know what is involved. A leaflet sent to me from Cardiff University explains in general terms what to expect at a genetic counselling appointment.
Some conditions, such as deafness, run in families and the genetic team can give people information about these conditions; how they are inherited and how likely they are to happen in a family. If appropriate, they can also discuss the medical management of a disorder and what choices members of the family have in facing this situation.
The conditions talked about in a genetic counselling clinic include cancer, muscular dystrophy, cystic fibrosis and many others, even innocuous conditions, such as the possibility of having twins.
The underlying fear, however, in many deaf people's minds is that the phrase used in the previous paragraph, 'the medical management of a disorder', is specifically aimed at destroying the deaf community they know and love.
The overriding paradox of deafness is that it strikes the offspring of only one out of 10 deaf partnerships. The vast majority of deaf couples have normal hearing children while, in spite of the Government's efforts to get rid of one of the main causes of hearing loss by inoculating school children for rubella, nine out of 10 deaf children are still born into hearing families with all the additional problems of communication and schooling.
However, a small proportion of deaf families have histories going back three or more generations and it's almost certain that the gene responsible for deafness will be passed on again when the children of such families grow up and have children themselves.
If scientists have the know- how, and some say they already do, will they be given the go-ahead to operate and remove the gene suspected of causing deafness?
Is this New Year going to be the turning point on issues like this? Many people in the deaf community are up in arms and protesting angrily at what they call medical interference.
'Leave us alone,' they say. 'We are perfectly content with the deaf world we know and love and have long ago learned to live happily with the loss of one of our five senses. If we have deaf children, so what? They'll be perfectly happy in a family where communication is no problem.'
Many others fear things will not stop there and if genetic engineering is allowed in the above cases arguments will arise to allow pregnant women to be tested for the faulty gene that causes deafness and give parents the option of having it removed before birth.
On the one hand, we have sign language classes and government recognition of BSL as a language in its own right, subtitled TV, interpreters at hospitals and many other ways of spreading deaf awareness.
On the other hand, there is a rapidly growing consciousness among parents and professionals of medical means to overcome hearing loss, such as digital aids, cochlear implants and the new, as yet illegal, means of eradicating deafness mentioned above.
Some Christian deaf people have told me God made them deaf and for justification point to an obscure verse in the Old Testament where God is quoted as saying He made the deaf.
But I prefer to the story in the New Testament, where Jesus took a deaf man aside, healed him and restored his hearing. Human beings are made to function with five senses and when one is missing, we remain disabled no matter how happily we get on with life.
Genetic counselling is quite a new branch of medicine and many people may not know what is involved. A leaflet sent to me from Cardiff University explains in general terms what to expect at a genetic counselling appointment.
Some conditions, such as deafness, run in families and the genetic team can give people information about these conditions; how they are inherited and how likely they are to happen in a family. If appropriate, they can also discuss the medical management of a disorder and what choices members of the family have in facing this situation.
The conditions talked about in a genetic counselling clinic include cancer, muscular dystrophy, cystic fibrosis and many others, even innocuous conditions, such as the possibility of having twins.
The underlying fear, however, in many deaf people's minds is that the phrase used in the previous paragraph, 'the medical management of a disorder', is specifically aimed at destroying the deaf community they know and love.
The overriding paradox of deafness is that it strikes the offspring of only one out of 10 deaf partnerships. The vast majority of deaf couples have normal hearing children while, in spite of the Government's efforts to get rid of one of the main causes of hearing loss by inoculating school children for rubella, nine out of 10 deaf children are still born into hearing families with all the additional problems of communication and schooling.
However, a small proportion of deaf families have histories going back three or more generations and it's almost certain that the gene responsible for deafness will be passed on again when the children of such families grow up and have children themselves.
If scientists have the know- how, and some say they already do, will they be given the go-ahead to operate and remove the gene suspected of causing deafness?
Is this New Year going to be the turning point on issues like this? Many people in the deaf community are up in arms and protesting angrily at what they call medical interference.
'Leave us alone,' they say. 'We are perfectly content with the deaf world we know and love and have long ago learned to live happily with the loss of one of our five senses. If we have deaf children, so what? They'll be perfectly happy in a family where communication is no problem.'
Many others fear things will not stop there and if genetic engineering is allowed in the above cases arguments will arise to allow pregnant women to be tested for the faulty gene that causes deafness and give parents the option of having it removed before birth.
On the one hand, we have sign language classes and government recognition of BSL as a language in its own right, subtitled TV, interpreters at hospitals and many other ways of spreading deaf awareness.
On the other hand, there is a rapidly growing consciousness among parents and professionals of medical means to overcome hearing loss, such as digital aids, cochlear implants and the new, as yet illegal, means of eradicating deafness mentioned above.
Some Christian deaf people have told me God made them deaf and for justification point to an obscure verse in the Old Testament where God is quoted as saying He made the deaf.
But I prefer to the story in the New Testament, where Jesus took a deaf man aside, healed him and restored his hearing. Human beings are made to function with five senses and when one is missing, we remain disabled no matter how happily we get on with life.