Deaf parents could choose to have deaf children

Steve Connor
Saturday 17 September 2011 14:21

Disabled parents may be given the right to choose to have disabled children when a new genetic screening test becomes widely available.

Disabled parents may be given the right to choose to have disabled children when a new genetic screening test becomes widely available.

The measure, being considered by government advisers, would allow deaf parents to decide to have deaf children on the basis that it might be in the child's interests to be born with the same disability as their parents.

The prospect is due to be raised today when the Human Fertilisation and Embryology Authority meets to discuss the ethical implications of a technique that can distinguish between healthy and abnormal embryos in the test tube. One proposal is that, just as in vitro fertilisation (IVF) parents can select healthy embryos for implantation in the womb, mildly disabled parents should be given the same right to choose embryos affected by their own genetic disorder.

Critics of the proposals argue that wide-scale introduction of pre-implantation genetic diagnosis (PGD) will raise the prospect of disadvantaged babies being born who will be deliberately chosen to be disabled for the benefit of their parents.

Supporters, however, argue that certain disabilities, such as deafness, are so mild that it could be in the long-term interests of the child to have them, so that they will share the same experiences as their affected parents.

Professor Allan Templeton, the chairman of a working group on PGD at the authority, said the issue had been raised by patient bodies, including those representing certain kinds of dwarfism, who believed that parents should be allowed to choose children who were more like themselves.

"But clearly there is a very real conflict between parental desires and the welfare of the child," said Professor Templeton, head of obstetrics and gynaecology at Aberdeen University. "Opinions are pretty sharply divided between those who feel it can never be justified and those who feel it is an issue of parental choice.

"If parents are prepared to put themselves through PGD and choose to have affected embryos replaced for whatever reason, you'd have to consider why that was and not just write it off immediately," he said. "Is it reasonable? You can't answer that and neither can I, unless we find ourselves in that position."

The authority and the new Human Genetics Commission are processing the public responses they have received to a consultation document on PGD before the test becomes more widely available.

The consultation document accepts that some couples will want to use the test to ensure their child is disabled. "An example that is often quoted is that of a congenitally deaf couple who feel that a child with normal hearing would be alienated from their environment and that this would be harmful to both the child and the couple," the document says.

A spokeswoman for the Royal National Institute for Deaf People said some deaf couples were pleased they had had deaf children but there still needed to be more discussion about the ethics of allowing people to choose embryos with deafness genes.

The British Deaf Association is also debating the ethical problems of PGD, a spokesman said. "We're still making policy on this at the moment. It is a very sensitive issue," he said.

Although doctors have no right to insist that a woman carrying a disabled child should abort her foetus, PGD raises fresh concerns about whether it is right to establish a pregnancy knowing that the child will be born with a disorder.

"The situation is further complicated because, by law, the clinician responsible for the treatment involving the use of PGD must consider, prior to treatment, the welfare of any child that might be born," says the consultation document.

PGD involves taking a cell from an early IVF embryo and testing it for genetic disorders before replacing it into the womb. Only four IVF centres in Britain are licensed to use the technique and just 20 babies have been born by it. However, PGD is expected to become more widespread as the technique is further refined.

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