http://www.theage.com.au/articles/2003/07/10/1057783282446.html?oneclick=true
Deafness-test embryo fails to take
July 11 2003
By Tom Noble
Health Editor
A Melbourne couple carrying a genetic cause of deafness have failed to achieve pregnancy after their IVF embryos were screened in a bid to guarantee a child with perfect hearing.
The screening for the mutations in the connexin 26 gene is the world's first reported case of an embryonic deafness test, according to details given at the International Genetics Congress yesterday.
The condition, non-syndromic deafness, affects about one in 1000 children in the Caucasian population. The couple each had one affected gene but, because the condition is recessive, neither was deaf. However, if they had a child, it had a one in four chance of inheriting the affected gene from both parents and being deaf.
The screening was authorised in September by Victoria's Infertility Treatment Authority, which regulates the type of tests that can be made on days-old embryos before they are implanted into the mother.
It said it regarded deafness as a medical condition, not a frivolous or cosmetic use of the technology.
But the green light to screen out embryos carrying two deafness genes was attacked by ethicists, who said it cleared the way for society to begin screening out other unwanted human characteristics.
The British Deaf Association, a vocal opponent of genetic testing for deafness, said it opposed screening both on an established foetus or on eight-cell embryos produced through IVF.
"Deaf people understand only too well the historical links between genetics and eugenics," it said. "We will oppose any uses of genetic technologies that seek to eliminate deafness from society."
The couple, who want to remain anonymous, produced seven embryos in their IVF cycle.
Each embryo was tested: one had two affected genes (so would become deaf), five carried one gene and one was all-clear. The unaffected embryo was transferred into the woman but no pregnancy occurred. The other carrier embryos were frozen and later transferred without success.
It is not known if the couple plan another IVF cycle.
More than 100 genetically screened babies have been born in Australia since testing began about five years ago and screening has boomed in the past two years as genetic causes for a range of conditions have been identified.
Some couples who are able to conceive naturally have chosen IVF so their embryos would be screened.
Testing for disorders such as cystic fibrosis, Huntington's disease and muscular dystrophy have become relatively common among people with a family history of the diseases who want to ensure they do not pass to the next generation.
A Melbourne woman recently became the first in Australia to be pregnant with an IVF baby screened for a gene that causes cancer. The woman, who carries a gene that causes a bowel cancer called FAP, had her colon removed at 19 and needs hospital treatment four times a year. She said she was not prepared to pass on the genetic mutation to her child.
This month, Monash IVF expects to complete a test for a couple who want to screen their embryos for inherited Alzheimer's
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Babies by design
Compiled by Vikki Leone, The Age Education Unit
The Age Wednesday, April 24, 2002
Increasingly we have the technology to choose the characteristics of our children. Should we?
What are ``designer babies''?
Science continually accrues greater genetic knowledge. Geneticists claim to have found the gene for good parenting, genes for obesity, Alzheimer's disease, hair colour and happiness. Amazing advances in reproductive technologies increase the potential to choose the traits or characteristics of children.
Techniques such as preimplantation genetic diagnosis (PGD) can already be used to screen embryos for genetic diseases. Similarly, embryos created outside the body using invitro fertilisation are tested for genetic disorders before being transferred to the uterus.
Advances in genetic technology have brought many benefits but also raise some serious concerns. Advocates highlight the potential benefits, such as the possible elimination of debilitating diseases such as Alzheimer's or Parkinson's.
Some, however, fear that it will encourage attempts to create ``perfect'', highachieving children. Will parents of the future be able to select their desired genes to create the embryo of choice - their own ``designer baby''? What ethical issues will this raise?
Few, however, anticipated the case of prospective parents deliberately engineering genetic defects into their children. A US couple has sparked a controversial debate by deliberately choosing a deaf sperm donor in order to maximise their chance of having a deaf baby. Candy McCullough and Sharon Duchesneau selected a deaf man as a sperm donor after being told by a sperm bank that donors with disabilities were screened out. The couple see deafness as a cultural identity and not a disability, and their decision has been condemned by many.
What rights should parents have to select their children's characteristics?
Increasingly parents engage in selection. Most commonly this involves prenatal screening against disability or disease. In Australia, women routinely use ultrasound and amniocentesis to test for congenital abnormalities. Some argue that this is quite different from accepting and choosing a disability such as deafness. There have been several reported cases of deaf children deliberately conceived through embryo selection overseas, and the chairman of Melbourne IVF, John McBain, says a deaf couple approached his service three years ago wanting to maximise their chance of having a deaf baby.
To some deaf people, the debate is offensive because it implies that deaf people are defective. McCullough and Duchesneau, like many in their community, do not see deafness as a disability, so they don't see themselves as bringing a disabled child into the world. They consider themselves members of a minority cultural group and simply believe they would be better parents to a deaf child, wanting a child ``just like them''.
Their view is supported by others in the deaf community who believe the couple's decision is their right and their choice. Simon Andersson, a deaf man who is an actuary and secretary of the Victorian Council of Deaf People, says: ``I get the feeling that people who object to a deaf couple having a deaf baby are objecting to deaf culture. There is nothing wrong with being deaf. Deaf is fine. Deaf is OK.''
Some, who may personally think it's better to be hearing than deaf, respect that people should be able to make their own decisions about the children they want to have. Others have been more critical about the women's decision to purposely conceive a deaf child. They argue that it's not about discrimination, but denying their child the right to fully appreciate the benefits of hearing and limiting their opportunities in life.