By Clare Murphy

Health reporter, BBC News



Some deaf activists contend they do not have a disability

For a long time, the debate about the genetic testing of embryos has focused on whether we should stop people creating the "perfect" person: blonde, blue-eyed, with athletic prowess and a high IQ.

The Nazi spectre of eugenics has frequently been invoked.

Now a deaf couple have turned this on its head: far from wanting a flawless child they actively want a baby which suffers the same hearing difficulties as they themselves.

The couple have become icons in a deaf movement which sees this impairment not as a disability but as the key to a rich culture which has its own language, history and traditions: a world deaf parents would naturally want to share with any offspring.

Moreover, they argue that to prefer a hearing embryo over a deaf one is tantamount to discrimination.

But to others - both those who can hear and those who cannot - deliberately bringing a child with a disability into the world when one without could be born verges on the morally repugnant.

Slippery slope?

Tomato Lichy and his partner already have one deaf child, for which they are profoundly grateful.

Despite the fact that over time we have seen more and more rights for disabled people they are now seeking to establish a legal principle that deaf people are inferior

Tomato Lichy

But they may eventually like another - and IVF, given the mother's age, may be the only option.

Yet if the Human Embryology and Fertilisation Bill goes through as it stands, their chances of having a deaf child would be small.

If they produced only deaf embryos, they would be allowed to implant one of these. However it would be highly unlikely that there would not be one without one of the deaf genes.

If they chose to have their embryos screened, they would be obliged to to pick the embryo without the abnormality over the others. The screening would not however be obligatory, and they could take their chances in the hope that a deaf one is chosen.

But the fact that they cannot give the deaf child preference over the hearing, Mr Lichy contends, suggests that his life as a deaf person is not one worth living.

HAVE YOUR SAY How would the child react when they found out that their parents actively sought to deprive them of a sense? Martin, London

"The core issue is that the government is saying deaf people are not equal to hearing people," he told the BBC via an interpreter.

"Despite the fact that over time we have seen more and more rights for disabled people they are now seeking to establish a legal principle that deaf people are inferior - and there may be more laws once this gap opens."

What message does it send to their deaf daughter, he asks, whom later they will have to tell: "We had a deaf embryo but the government said we were not allowed to have it".

Rich world

One of the beliefs he holds most dear is that deafness is any event not a disability.

It is certainly not a slight to the deaf to say it is better to bring a child who will face the least difficulty into the world, when there is a choice to be made

Jackie Ballard

RNID

From his perspective, the inability to hear is an integral part of his identity, and it is those who are able to hear who are at a disadvantage in a world of deaf plays, deaf poetry, and deaf jokes.

But his argument that he is not disabled is not one accepted by some of those who campaign on behalf of those who cannot hear.

The Royal National Institute for Deaf People does not support the choice of deaf embryos over those who would not be born with hearing problems.

"No-one should be forced into having genetic testing if they don't want it. But if they do, we would want the embryos without the gene to be implanted," says its chief executive Jackie Ballard.

"Deafness is a disability and we have spent a long time campaigning to improve the lives of people who live with it. But it is certainly not a slight to the deaf to say it is better to bring a child who will face the least difficulty into the world, when there is a choice to be made."

Storm in a teacup?

Only a tiny minority of deaf or hard-of-hearing people in the UK see themselves as part of a community with a distinct identity in the way that Mr Lichy sees himself.

Where someone has an inherited genetic condition but did not wish their embryos to be tested for it, they would not be obliged to do so

Department of Health

Moreover, the current, increasingly febrile debate is about an action which has never taken place in the UK and is based on a couple who have yet even to seek IVF treatment.

Research carried out at Leeds University found the vast majority of deaf people polled expressed no preference - and would be happy with either a deaf or a hearing child.

In addition, IVF births - which are those at issue - make up just 1% of all deliveries in this country.

Combined with the tiny proportion of these parents who would be both deaf and strongly desire a child who could not hear, we may not even be looking at a case a decade, experts say.

"Given that we are looking at such at a very small number of people, I think we can afford to be quite liberal about this," says Julian Savulescu, director of the Oxford Centre for Applied Ethics.

"Deafness is a disability, but it is not one that stops people having a life that's worth living - and if there are a handful of people out there who want a deaf child, they can find a doctor who will help them, and they are prepared to pay for it, then so be it."

But regardless of how rare it would be, the government is thought unlikely to change its mind on this particular clause.

If they do opt for IVF, Mr Lichy and his partner may end up with what they see as a "disabled" child: one that can hear.