Jusqu'où peut-on aller? Est-il éthique d'imposer la surdité à son enfant?

How far can we go? Is "choosing to have a deaf baby" ethical?


BBC News Online[/b]

Monday, 8 April, 2002,

Couple 'choose' to have deaf baby

The couple already had one deaf child

A lesbian couple in the US have provoked strong criticism by deliberately choosing to have a deaf baby.

Sharon Duchesneau and Candy McCullough, who have both been deaf since birth, were turned down by a series of sperm banks they approached looking for a donor suffering from congenital deafness.

The couple, who have been together for eight years, then approached a family friend who was totally deaf, and had five generations of deafness in his family. He donated sperm which was used to impregnate Sharon Duchesneau. "A hearing baby would be a blessing. A deaf baby would be a special blessing" Sharon Duchesneau, before the birth,

Baby Gauvin McCullough is now four-months-old, and has a slight amount of hearing in one ear. The couple have said they will let him decide when he is older if he wants to wear a hearing aid.

The man has already donated sperm for the couple's five-year-old daughter Johanne, who is profoundly deaf and can only communicate through sign language.

Bonding

The women, both in their 30s, are part of a growing movement in the US which sees deafness as a cultural identity, not as a disability. Many oppose surgery to correct deafness.

While she was pregnant, Ms Duchesneau said: "It would be nice to have a deaf child who is the same as us. "I think that would be a wonderful experience. You know, if we can have that chance, why not take it?

The women, from Bethesda, Maryland, are both mental health therapists and deaf therapists. They told the Washington Post they believed they would make better parents to a deaf child, because they would be better able to guide them. They say their choice is no different from choosing what gender the child would be. Ms McCullough added: "Some people look at it like 'Oh my gosh, you shouldn't have a child who has a disability'. "But you know, black people have harder lives. Why shouldn't people be able to go ahead and pick a black donor if that's what they want? "They should have that option. They can feel related to that culture, still bonded with that culture."

Reaction

Stephen Rooney, spokesman for the British Deaf Association, told BBC News Online: "The real issue is not whether people are trying to design deaf babies, but how society currently denies deaf children to enjoy the same rights, responsibilities, opportunities and quality of life as everyone."

But the couple's decision has attracted fierce criticism.  Peter Garrett, research director for LIFE, told BBC News Online: "This is another example of reproductive technology running riot.
"To deprive a baby of a natural faculty is unethical behaviour."  He said the principle could be extended to deliberately having a baby which was blind, or a dwarf. "We are saying no to deselecting a baby because it is deaf, and no to deliberately choosing to have a deaf baby."

But Dr Richard Nicholson, editor of the Bulletin of Medical Ethics, said: "This is an inevitable result of deciding that we allow people to have a choice over what sort of child they are going to produce."

Dr Vivienne Nathanson, head of science and ethics at the British Medical Association, said: "There are two sides. In general, is this a good or a bad thing.? I think most people would say it was a bad thing. But in this individual case, I think this is on the borderline of concern about the 'slippery slope' of designer babies."

Nancy Rarus, a member of staff at the US National Association for the Deaf said: "I can't understand why anybody would want to bring a disabled child into the world."

Lien vers cet article: http://news.bbc.co.uk/1/hi/health/1916462.stm